The mission of the Arachnoiditis Research & Education Project is to bring diagnosis and treatment to every community. As part of this mission, we wish to prevent the occurrence of AA whenever possible and have it diagnosed as early as possible to start treatment and prevent complications.

This section of our website is deemed critical, as the story of afflicted persons is often very instructive and helpful in accomplishing our mission. These stories of persons with AA that we present will have an educational message that will hopefully help others with AA.

ALISON GUYTON, LICENSED VETERINARY TECHNNICIAN

Disabled/Retired

I really can’t remember a time in my life that my back did not hurt.  The earliest thing I can recall is getting in trouble for sneaking into my brother’s room to sleep on his bottom bunk bed. I was probably 7 or 8 years old at the time, and he was 11 or so. I would wrap belts around the wooden slats holding the top bunk bed and slide my legs up into them, trying to raise my butt off the bed. I had figured out by that time, that was the only way to tilt my pelvis to get some relief.  I remember as a 4-year-old, the electrifying, stabbing pain on my butt bones when my hoppity hop ball toy slipped out from under me and I hit the cement floor right straight on my butt.  I remember running around the house crying and screaming how bad it hurt, and my butt was on fire. Yes, I went to the doctor or ER, and they said everything was fine. I do not recall any imaging being done, if any, or what quality they would have been in 1972.

So, all my life my low back pain was attributed to that impact. I was a very active child, involved in sports progressing from little league softball and soccer to All-Star tournament travel teams, and then starting varsity softball, 1st base, my freshman year of high school. I recall an entry in my journal when I was probably 10 or so, about being mad at my soccer coach for calling me slow on our pre-practice laps around the field. “Hurry up, what are afraid of, losing a little weight” is what he yelled across the field, and I thought to myself, if he only how bad my back hurt! I also saw a chiropractor for most of my “sporting life,” with the cross leg, low back, sacroiliac adjustment stuff, etc. I don’t ever recall any diagnosis; he would just say my sacroiliac was “going out.”  All I know is it hurt bad, I could hardly lift my feet off the floor to take a step, and I that I had to move forward, not pivot sideways at all, or the jarring pain would hit.  However, my abilities as an athlete were really quite impressive, considering I’ve been obese all my life as a carb addict and comfort food junkie, with pretty significant lower back pain. Stretching way out as a first baseman to make an out, as I think back now, was probably attributable to joint laxity, much like many gymnasts’ abilities who oftentimes have collagen disorders. Also, looking back now, SO many of my doctor exams, from pain management to neurosurgeons, were probably skewed from this inherent joint laxity, as they were always kind of shocked that I had normal, or better, range of motion. This certainly caused a lot of discrimination toward me, from people and doctors both, not believing me and my symptoms and pain!

Also, I recall seeing an orthopedic doctor while I was in high school, for knee pain. At about age 15, I was diagnosed with chondromalacia in both knees. Physical therapy didn’t help and aggravated my low back, buttocks, and groin too badly to continue. I recall them saying something about the piriformis at that point.

I also showed horses’ throughout high school. I practiced in the rodeo, in barrel racing events. It was a lot of running fast, braking, turn hard, and repeat. To add to my lower back injury list, I also had a severe riding accident, with a horse flipping over on top of me. As I recall, he landed kind of in my crotch, left thigh, and then rolled off my leg and got up.  I never went to the hospital, but I couldn’t walk without crutches for about three days. I recall it was easier with crutches, rather than trying to stand up straight to walk, or breath-taking pain as I lifted a leg would kick in. Having been in chiropractic care for so many years, I just attributed the same kind of pain to just REALLY messing up my sacroiliac joints. But it may explain what my first neurosurgeon found many years later!

Moving on to college and career timeline, I went into veterinary medicine as a Licensed Veterinary Technician (much like a Nurse Practitioner). My college training was a crash course in medicine and clinical procedures with a huge emphasis on anatomy and physiology (A & P). It is imperative that A & P is known head to tail as vets are THE caregivers for any problems, head to tail, for multiple species and must treat the nonverbal patient as a WHOLE!

I loved my career, 15 years in all, but it put a beating on me. Just from the daily walking and standing required, to the picking up heavy dogs and wrestling them to perform clinical procedures. Bending squatting, lifting, and wrestling unruly patients was a never-ending job duty. It was also during my college time that I was diagnosed with high prolactin levels, for a reason they never figured out.

From my early to mid-20’s, I met my husband and we enjoyed being outdoors camping, fishing, trout fishing (which involved walking on slippery rocks in shallow creeks), and hunting. My low back pain was so bad, and my legs felt so heavy I could hardly walk by the end of the day, especially after a weekend with my husband! I would push through the pain, and after a while things would just go numb, and I continued with life. Cooking dinner, cleaning up the kitchen, being a working wife. By the time I would make it up the stairs to our bedroom, I would have to sit on a shower chair to take a shower, then crawl into bed and sleep on the left side, pulled up in a fetal position. Chiropractic care had continued once I was in my career working, for 5-6 years probably, with the same adjustments and soft tissue work.  This was the first doctor to mention I had spondylolisthesis, and of course, he thought his care would help.

In my late 20’s, I began seeing many doctors for numerous issues including my back. As many of us know, medical doctors didn’t think much of chiropractors in the 90’s and wouldn’t believe his diagnosis. Numerous attempts at physical therapy failed, with it just exasperating the lumbosacral pain. Finally, x-rays revealed a diagnosis: Grade 2-L5 S1 Spondylolisthesis. This was 1995, I was 29 years old, and off I headed to pain management for the first time. Myofascial pain, trigger point injections, introduction to opioids, and more PT to fail. As we were having fertility issues, I was diagnosed with polycystic ovarian syndrome (PCOS). Having had many female cycle issues all my life, it all made sense. During the course of seeing that specialist in Atlanta, GA it was revealed that I had MANY abnormalities with my hormones to add to the odd, high, prolactin levels. My testosterone, C-Reactive Protein, homocysteine, and insulin levels were high, even though my fasting and 2-hour post glucose tolerance test sugars were always normal. I have in my personal medical notes from this time, a weight chart after starting Metformin, and labs for the 12-month follow-up, showing it got my hormones and inflammatory markers back in normal range. I recall taking folic acid, as well as niacin, during that time period as well.

Early in 1997, I just couldn’t take the pain anymore of my normal workday. I would go lay in my car for my lunch hour, trying to get enough relief to make it through the day. When it got to the point where I was just lying on the floor of my office for lunch break, and still could hardly walk to my car by the end of the day, I quit and applied for disability. Assuming all of my symptoms, which now I know are that of adhesive arachnoiditis (AA), was from the Grade 2 spondylolisthesis. Of course, there was a 3-year process getting approved for SSA, and LOT happened in that time.

Well, not only had the Metformin corrected the PCOS issue, but it also corrected hormone related ones as well, and I ended up pregnant in early 1997. Not only that, but my good Lord, knowing I only had one shot at this with my bad back, He blessed us with triplets!  So, with my bad back and high-risk pregnancy, I was put on full bedrest for my entire pregnancy. It wasn’t too complicated, other than gestational diabetes, and gestational low thyroid that required supplements. Then premature rupture of the membranes (PROM) on one child at 29 weeks, put me in the hospital on strict bedrest awaiting labor or infection, while we worked to develop my babies’ lungs. At 31 weeks gestation, I went into labor. As we waited on the Perinatologist to see if they would proceed with delivery or try to stop labor, all I recall is howling like a dog with each contraction. I guess with all the ovarian ligaments pulling with contractions on my pelvis and sacrum, I was screaming that it was breaking my back. I’m sure the nurses all knew about “back labor” and assumed it was that. But I swear they were breaking my back, as my husband laughed at my howling, in his anxious, “can’t do anything for me” state he was in.  Finally, a C-section was called at 31 weeks gestation. I definitely recall the electric shock that went down my leg with the blind epidural. After the epidural wore off, my back hurt so bad, but I also couldn’t feel my legs enough to trust them to hold my weight and walk. As I recall, they were just buzzing and weak feeling, like I couldn’t tell if they were there or not. I had no confidence that I could lift my feet and place them correctly to walk and not trip. They said it was a side-effect of the medication and it would wear off. Even after being released 3 days after my C-section delivery, I was still in a wheelchair. Home health brought one to the house and I used it for about 4 weeks before “feeling” my legs enough to get around. The babies were all in the NICU during this time, so it wasn’t too bad and allowed me to go visit them in the hospital every night when my husband got home from work. Luckily, I had family to help once the babies did come home, for the first few months, as all kinds of doctor visits and PT were going on with my back now!

So begins my downward slide as far as my back goes, as if it wasn’t bad enough already to take me out of the work world and career I loved! There were doctor visits, PT to fail again, and pain management and my introduction to epidural steroidal injections: 18-gauge Tuohy, 80DM, 2cc 1% plain lidocaine and 5cc saline injected #1, on 9/24/1997. The notes say it helped with radicular pain down the right leg, so I proceeded with 2nd ESI on 10/22/1997: Hustead needle, 80 mg DM, 2cc 1% plain lidocaine and 6cc normal saline. Follow up was on 11/19/1997, with no back pain relief, but the burning feeling I was having in my right foot was better. But overall, the pain had become worse, and now I was having a new tingling sensation in my left leg. I decided NOT to have the 3rd ESI and go for neurosurgeon referral since the PT and ESI failed. Mind you, my triplets were only 3 months old.

My first fusion was PLIF L5S1 on 5/18/1998, and my kids were now 9 months old. The surgical report is notable for the bilateral pars defects, for severe nerve root compression, as well as pseudoarthrotic material severely compressing the L5 roots posteriorly. They were also trapped between the L5 pedicles and the superior facet of S1 bilaterally. An “aggressive” foraminotomy was carried out.  Within a year, the pain and neuropathy never did subside, and the screws had sheared in half. As the pain continued to worsen and with the instability of the fusion, a revision surgery was performed in June 2000. It was significant for a lot of scar tissue to have worked through and because of this he could NOT open the foramen up like he wanted to. This neurosurgeon also put a cage between my vertebra to take some of the pressure off the screws and it remains fused now, 22 years later, Thank you Lord! The surgery stabilized the slippage, but did not relieve any pain or neuropathy symptoms, and I was again referred to pain management.

Having been obese all my life, I had reached 345 lbs. and I couldn’t get through the halls of my kids’ elementary school without the help of a wheelchair. My messed-up hormones and insulin resistance had turned into diabetes at 40 years of age. It was then that I opted for RNY Gastric Bypass surgery, to put a stop to my carbohydrate addict lifestyle and reverse the diabetes. This procedure causes you to have a VERY unpleasant “dumping syndrome” if you eat too much sugar or fat. I needed that extra diversion over the available weight loss surgeries, even though it was much more complicated in both the procedure, and the lifelong nutritional commitments. Losing over 100 lbs. certainly helped me to become ambulatory again.

However, the pain and deterioration of my back over those last 20+ years since my last surgery has been insane! Pain management has performed so many procedures. From multiple ESI’s to the lumbar and cervical spine, to multiple facet injections in those same areas, to cortisone shots in too many joints to count! Even in my elbows, which showed marked arthritis! I truly believe all this to be Ehlers Danlos Syndrome (EDS) from related chronic subluxations causing joints to rub bone on bone and being out of alignment. Every time another joint, or tendonitis flared up, they would put a shot in it, give me my 3 months of medications, and send me on the way.  As my condition climbed the adhesive arachnoiditis scale to the severe/catastrophic range, my pain management doctor NEVER addressed anything other than more imaging and interventional medicine. They added the diagnosis of fibromyalgia and restless leg so they could add a tricyclic antidepressant to my protocol and help neuropathic pain a bit. In 2017, my symptoms had escalated to bladder and sexual dysfunction. Pain management changed nothing in my treatment. Two OB/GYN’s couldn’t figure it out, nor the urologist. So, I just rocked on with apparent constrictions in my pelvic floor.

It wasn’t until after my total knee replacement Feb 2020, that the adhesive arachnoiditis came to a boiling point. LITERALLY, my spinal cord felt like it was a boiling, bubbling, acid burning, mess. I was stupid enough to get talked into spinal anesthesia for my TKA and it flared the AA like I have never experienced. Since I had an implanted bone growth stimulator from my 2000 spinal fusion, I couldn’t have MRI’s. So, I ended up having a lumbar myelogram. That fired the AA up even more, but we didn’t know what it was at the time, so no treatment had begun. Of course, the local radiologist saw nothing but the mechanical degeneration, but noted little to no contrast material. Then my local neurosurgeon ordered another myelogram of my neck. He was much more concerned with the symptoms of cervical arachnoiditis I was having then and not the fact I couldn’t sit on his exam room chairs! Of course, they read them all as stenosis and wouldn’t know how to diagnose AA anyway but had egos too large to deal with. The neurosurgeon really wasn’t happy when I asked for second opinion on upper lumbar and cervical fusions at the University of Alabama. That neurosurgeon greatly disagreed, and NO surgery was recommended for the “small” amount of stenosis I had, nor less for the condition of paraspinal muscles with all the CSF leakage damage. He congratulated my PCP for having an effective treatment for my arachnoiditis.  My pain doctor’s answer was to have a caudal ESI. THAT was when I drew the line, said: “NO,” and decided I was done with anything interventional, and these local doctors.

All this time, I had begun my own “diagnostics.” I can’t sleep, so I spent all night back and forth from bed to recliner surfing the internet for “why am I going paralyzed.” THAT is when I found adhesive arachnoiditis, Dr. Tennant, his foundation, a ton of information, and Facebook groups. THIS is the reason God gave me my veterinary medical education because I only spent 9 years in the field after graduating before becoming totally disabled! So, I was able to figure out for myself, putting together anatomy & physiology puzzle pieces, WHAT was wrong with me! Understanding all the anatomy and physiology and knowing what is NOT working for me. It was very easy to zone in on AA and all of Dr. Tennant’s information. Thankfully, my primary care doctor was much more compassionate about taking charge of my care and changing my medications! Baclofen helped a lot better than the Flexeril I’d been on for 20 years! She also put me on a round of Prednisone for inflammation and sent me to a chiropractor for soft tissue work. He confirmed I did NOT have fibromyalgia, rather I was covered from neck to knees with trigger point knots, but NOT just fibromyalgia “tender points.” My PCP is excellent, switched me up to Medrol after the Prednisone inadvertently helped, but not nearly as good as Medrol. She has been a huge blessing, following Dr. Tennant’s protocol down to prescribing HCG injectable, which I just started.

Besides the living through the pain of my own paralysis as my sciatic nerves die, the neurogenic bladder and bowel issues, the spinal fluid leaks, the low CSF pressures or the high pressures with flow blockages if I sit too long, I am thankful my PCP will follow Dr. Tennant’s research findings to help me. She is the only one believing me and seeing a zebra needing help rather than being an egotistical moron like many of my other doctors I’ve seen. Even my family wasn’t supportive of me, and my Dr. Google “self” diagnosis. They thought I just needed to see a psychiatrist and that my issues were normal aging conditions. Thankfully, Dr. Tennant’s research and information HAS proven otherwise!

My condition is very severe to catastrophic. I can still walk, but the civil war between spinal contractures and tendons/ligaments plus a collagen disorder, my body is taking a beating, so I don’t know how much longer it will be until I totally rely on my wheelchair. To date, I’ve had one shoulder rotator cuff repaired with 4 tears and a ruptured biceps tendon. In my pelvic floor, I have a totally ruptured hamstring tendon on the left side and a partially ruptured one on the right. My gluteus minimus is totally ruptured off the pelvic rim on the right side.  My sacro tuberous (ST) ligament is ruptured off the ischial tuberosity on left side, just like the hamstring. (Remember the bladder & vaginal constriction from 2017 when AA ramped up…. it’s not constricted now that the ST ligament is ruptured!) Every joint in my body and their respective tendons burn and hurt. Between generalized tendinopathies and arthritic and/or autoimmune pain and deterioration, I am literally falling apart. I have no doubt it is EDS/collagen disorder related, with chronic subluxations now having caused a marked to severe arthritis in every joint from neck to toes, literally! My children are also now affected as well. From Mast Cell Activation to kyphosis to tons of GI issues as well as back pain, my 24-year-old triplets are all effected to some degree, some worse than others with AA and EDS symptoms combined.

It is my goal to continue to help myself as much as possible with Dr. Tennant’s guidance via my PCP and medical pain management. At this point I have cervical arachnoiditis, adhesive arachnoiditis, chronic CSF leakage, paraspinal contractures, neurogenic bladder & bowels, Raynaud’s, Sjogren’s syndrome (I have symptoms SO bad but not enough symptoms in anyone “grouping” for the rheumatologist to ID a specific disease yet), chronic ischial gluteal bursitis, and arthritis from head to toe, (diagnosed by imaging), plus more. I am gathering my medical records/history to head to the University of Alabama/Birmingham Precision Medicine Clinic, a NORD recognized Center of Excellence to get diagnosed with EDS/collagen disorder and get to the bottom of all this! I believe it is the underlying cause of all my deterioration. My prayer is to be able to assist my children in getting MUCH earlier diagnoses and treatments than I have had, so they can live a much healthier and happy life!

My quality of life is SO much better now than it was 2 years ago thanks to Dr. Tennant and my willing and wonderful PCP! It kills me to say No, I can’t do this or that anymore, but saying NO is what I MUST do. The “Use it or lose it” mentality I’ve always followed and pushed through has now turned into “Use it AND lose it,” so I MUST slow down! As an avid hunter and fisherman, my husband has always been amazing at enabling me to keep participating. I always judge my physical abilities from deer season to deer season because it definitely shows my decline. At this point, I only hunt off the ground so I can sit awhile or lay down awhile and my husband delivers me right to my spots on a hunting golf cart. We have found many accommodations that work, but I have no doubt I am reaching the end of being able to immerse myself in God’s beautiful woods and rest with Him surrounded by all the bounty of nature. Thanks to the hope instilled by Dr. Tennant and his lifelong work, I’ll never quit trying and I’m not done here yet!

Alison Guyton

PENELOPE J. HARDY – MY STORY

I am an engineer who loves using logic to problem solve. That’s what we do. Fault find and repair.

I am also a survivor with attitude. Multiple Sclerosis (MS), Adhesive Arachnoiditis (AA), and Ehlers Danlos Syndrome (EDS) ……

As a small child I was clumsy, but very flexible. I would regularly show my gymnastic abilities which led to many hospital visits. My childhood Doctor was aware that I had been diagnosed as having Congenital Spina Bifida Occulta. It isn’t really visible and apart from having problems with nocturnal bladder control all was or seemed to be well. I was always the athletic type. Apart from quite a few visits to A&E due to clumsy accidents, I would describe my younger years as uneventful.

In 1985 at the age of 21 I had a daughter who was delivered via lower segment Caesarian section using general anesthetic.

Following a fall in 1986, I was advised to have a “special x-Ray” using Myodil. The Orthopedic Consultant noted transverse sacralization pronounced on the left side. He explained this is seen in Spina Bifida Occulta. It really seemed unimportant to me, particularly as I was very athletic.  I hadn’t suffered by having it, so I can’t say I was particularly concerned by this at that time.

My daughter has Achondroplasia so my focus as a parent wasn’t really on myself. A marked deterioration in my walking ability led me to a referral to Neurologists. I felt very confused because the Orthopedic Doctors totally contradicted what the Neurologists were saying.  I was trying to work out why I was having periods of intense pain, particularly so around that time of the month.

In 1987 my son was born, again the same delivery due to my insufficient pelvic capacity.
I was healthy throughout both pregnancies.

The following years were interspersed with bouts of chronic lumbar pains, which were gradually stealing my ability to function independently.

In 1996 after periods of flares during which I frequently fell, the Neurologists sent me for a Lumbar Puncture (LP). This was carried out at a big Neurological hospital, and on discharge they explained the LP results ruled out MS as the cause of my agonizing pain. I was discharged with a diagnosis of nonspecific neuropathy.

Interesting to note, an overseas Registrar working with the team at that hospital spoke to me prior to discharge. He said then I think you have a condition called Arachnoiditis. I honestly laughed because I thought it meant a spider bite. More to the point, at the age I was 33 I was more relieved at that time to hear it wasn’t multiple sclerosis, as they had explained that’s what they were investigating for.

That definitely frightened me. I was angry, frustrated and still in pain. By this time whatever was causing the debilitating relentless pain seemed to have no name or cause that was visible. When I mentioned that an overseas Registrar had mentioned the dye and Arachnoiditis the local Neurologists dismissed my concern. “It’s just peripheral neuropathy,” they said. My brain felt literally like a boiling mass, I was prescribed gabapentin and discharged.

I have honestly lost count of the different scans, tests, more and more incorrect labels being attached to an ever-increasing bundle of my medical notes of the copies which I requested. I was stunned to see the birth until 20 years of age were missing.

Eventually I became so pain wracked that I ended up bed bound. I don’t remember much about the years 2009 until 2019. I was on so much medication I was hyper somnolent. Family and friends were horrified to witness my obvious distress.

In 2013 my MRI showed two CSF leaks, interesting to note I had one injection of dye, then ten years later a single Lumbar puncture. The team then suggested I go inpatient at the Arachnoiditis back care program at the Royal National Orthopedic Hospital. My research had already taught me surgery wouldn’t be beneficial, so I politely declined. That was the end of my help from that team.

In 2019 I decided not to take the medication anymore, it had stopped being effective. I was monitored during the detox period using the guidance of a friend, who is also a Consultant in Rheumatology.

The first thing I addressed was my food intake. I decided to switch to organic only. I cut out all sugars as soon as I learned how antagonistic sugar is to any inflammatory disease. Here may be a good time to say I also started to distill my drinking water. The reason being there are indeed chemicals added to our tap drinking water. I know this because I requested chemical analysis from our suppliers. It is entirely possible that some of us are affected by the chemicals which are added to water. I attribute the ringing ears (tinnitus) to these chemicals. It is no coincidence that I no longer suffer that dreadful noise. Unless the barometric pressures change quickly my tinnitus is not a problem. When I suffered the intercranial pressure caused by a leak, even that improved during high barometric levels of pressure.

I think that’s around the time I rather cheekily approached Dr Forest Tennant and his Foundation appropriately named Arachnoiditis Hope.  I stopped trying to prove something was terribly wrong with me to anybody and tried instead to determine exactly what it was. The answer was Adhesive Arachnoiditis, and I also have a diagnosis of Ehlers Danlos Syndrome, but that didn’t get noted until I had seen specialists in that field at UCLH in early 2020.

I understand energy, and I understand systems. We are a series of systems. Human’s central nervous systems are a series of message pathways firing constantly. I know our bodies primarily function using electrical impulses. The fusion of electrical currents creates heat; this is the burning we feel wherever nerves are damaged. My explanation for that is simple, electrical impulses build up and have nowhere to discharge. To me it made sense to try and calm that down. This is where the Grounding or Earthing sheets are useful. A cost-free way is of course to stand barefoot on Earth, allowing the body to discharge any static or built-up current back to Earth. An easy way to do this is to Earth yourselves on a stainless-steel draining board or hold the cold tap. The EARTH cables in homes are always on the cold-water supply. This is the standard UK fitting.

I have many friends in the same field I worked in, one an acoustics engineer who explained about healing sound frequencies. If we understand our body’s resonance is affected by surrounding frequencies, it makes sense to use these frequencies. I used the healing frequencies, and the tingling was immediately noticeable. Continuing to use Solfeggio frequencies daily I believe helped my cells repair.

I was learning fast, motivated by none other than Dr. Forest Tennant. At this point I had spent six months studying nutrition. I introduced all the recommended supplements in the Tennant protocol. It wasn’t very long before I started to notice improvements. A big point to note here is 25-hydroxy, better known as Vitamin D (D3). In Dec. 2019 my level was dangerously low at 20. A low level increases the risk of infection, so I supplemented using D3 with K2.

I used mineral soaks with magnesium, this helps remove body toxins and the magnesium settles nerves. As the weeks went by, I noticed more improvements. I used the gentle stretches and a rocking chair; all these things together were having a noticeable positive effect. This was on both a physical and psychological level, for the first time in a long time I knew there is HOPE.

In 2019 I had another scan. MRI, again improved from the one I had done only six years earlier. I sent that to my friend and mentor Dr F, and he confirmed the findings.

That’s when I decided to add INVERSION therapy to my list. A word of caution here: I have had no spine surgery. However, I knew thanks to Dr. Tennant that I did have adhesions. I decided to go ahead and purchase an Inversion table, so that I could use it daily. Here I noticed a huge improvement, even as little as 2 minutes a day helped to open the disc space.  I regained 50mm in height after 3 months of daily use.  More important my pain levels decreased.  I had to learn to walk again, and without doubt this was the hardest part.

I used all the recommendations of regenerative supplements. Deer Antler being a particularly potent agent along with bovine colostrum, the special “first milk” produced by all mammals. I figured if that is good enough for growth of infants that it must also encourage regeneration of damaged cells.
In April 2021 I had a whole-body MRI including the brain. This time the report noted tortuous nerve roots, and lesions in periventricular region of my brain. The resultant diagnosis is MS.

Fortunately, I take no notice of labels, not because I’m foolish, more because we are individuals.  Regardless of any new diagnosis my condition has improved hugely and I’m able to drive and ride my bicycle again, but I do have to use electric pedal assistance. My legs are working again. Yes, they get sore every day, but I’m using them.

Thanks to the Tennant Foundation and all the incredibly hard work Dr. Forest Tennant and team have done, I am on the road to a curative state.  We as a team research for ways to relieve some of the suffering. Every day we learn something new.  I have added Melatonin to my protocol, this is another hormone which is also a powerful antioxidant. Worthy of note, melatonin is also useful to regulate our sleep/wake cycle naturally.
We individually and yet collectively navigate our paths as individuals to health.
My message to anyone reading this is: there is hope.
My story has a happy ending. I’m not cured, but I’m better.

Thank you all kindly for reading my story.  Penny Hardy

GRACE VALENTINE

I used to call myself the poster child for Arachnoiditis. A cautionary tale for why NOT to get a labor and delivery epidural. Now, sixteen years later, I am leaning in. I am learning to claim myself as a poster child for neuroplasticity, and of healing. This shift in perspective, from the hard-won vantage point of the witness, is both liberating and exhilarating as it is daunting. To proclaim my healing is often a slippery slope. One step forward can be followed by a giant leap back-nevertheless, healing progress is being made. The path of a healer who sets out to heal oneself, let alone simultaneously putting forth effort to heal others, is a monumental mountain to climb. I guess it is fortuitous that I just so happen to be a Capricorn and a Licensed Martial and Family Therapist.

As I read the Tennant Foundation’s recent bulletin where they published “A Story Worth Telling” from an arachnoiditis survivor, a female physician with multiple sclerosis who discovered her condition as a resident in training, I was inspired to give voice to my story.  To survive feels short sighted, I aim to thrive. So, I found myself pushing toward the fullest life imaginable, not merely the fullest life possible. What this push has brought me to is to be cut off from my disability benefits. To receive a declaration from the Social Security Administration that I had exceeded their threshold for substantial earnings. This invisible ceiling it turns out, is a mere 1,380.00 per month as a single mother raising two teenagers. This news and the subsequential termination of the monthly support deposits sent me reeling backwards into a flareup of post-traumatic stress disorder to when I first became disabled as a direct result of a twice misplaced labor epidural that temporarily paralyzed me from the shoulders down and resulted in a six-day hospital stay following the birth of my second child, born with an Apgar of 2. Thankfully, the paralysis slowly receded, yet little did I know, that underneath the insidious proliferation of Arachnoiditis had begun.

Sixteen years have passed since my condition began to take central command over my life and livelihood. I had been a recognized and decorated mental health professional at the local, county, and state level. Once arachnoiditis and my journey to heal through PTSD commandeered my life, everything changed. My 20-year marriage ended, as I have learned that nearly 75% of patients with this painful disabling condition statically do. I was incredibly grateful for the years of Social Security Disability Income and court awarded child support to keep a roof over my children’s and my head. For our very survival, I am eternally grateful.

But this is an essay of triumph and a success story of celebration. So, I lean in and shift my focus, dear reader to my story of healing through neuroplasticity and meditation. For I wholeheartedly believe in the healing power of the creative arts and on learning to train one’s mind to focus upon beauty and the undulating healing power that resides with each and every breath.

Neuroplasticity is defined as “the ability of the brain to change through growth and reorganization, whereby individual neurons create new connections and pathways. Circuits and network changes can result from learning a new activity, environmental influences and practices that lower psychological stress.”

Meditation and Mindful Breathing can be described as learning or training oneself to pay attention to the natural flow and rhythm of one’s breathing, tuning into the way it feels with each inhale and exhale.” It is often paired with one’s goal of following the breath until there is a sense of relaxation within the body. What I have learned along this journey is that painting, prose, and poetry are powerful medicine. The effect of calming one’s nervous system is palpable and prolific. The very act of giving voice to a poem can serve to entrain the mind, the breath, the heart, and our entire nervous system causing all to come into harmony and alignment. Our very cells recalibrate as these new neural pathways are created like the thoughtful conscious decision of a well-trained city planner to design and construct additional on and off ramps along our freeways, highways, and byways. We are like streams and tributaries, all carving our own pathway towards the ocean. We are so very capable of learning new activities and hobbies that bring us joy and challenge our minds and bodies optimally into states of flow. From this commitment to practice, we acquire insulation encapsulating these formerly burning, electrically zapping, and shock emitting damaged nerve bundles with healing, cascading cranial waters. These healing waters flow over, around, above, and between every inch of our spinal cord. As the poet Rumi so eloquently described “we are both the pitcher and the water that it pours,” we are both pain and what heals the pain. By actively committing to a life practice that engenders the stimulation of neuroplasticity we can achieve new heights of healing. As Rumi revealed, we can at once be healer, healing, and healed, lover, loving, and loved. A committed practice to try new activities and to train our thoughts and our very breath, is an act of self-love.

Reframing the devastating impact of having one’s disability benefits withheld and shifting toward and leaning into this as a celebration of healing, is worthy of being seen as a success story. Though I do not yet earn enough from my return to counseling others who suffer from various types of pain, (physical, mental, emotional, spiritual, or relational), I am like a baby bird being nudged from this nest. I pray that as I continue to paint my inner experience and offer these abstract paintings to the greater world, and to perform out loud my stream of consciousness poetry to any soul willing to listen, to not only enhance the healing power of my own breath, but also teach these skills to others I serve, that Arachnoiditis will become a gift that can bless not only my life and livelihood, but the lives of all those I come into contact with. So, I offer up my story. May all who read it, and those who view and interact with my paintings, and read and listen to my poetry on healing be blessed. May my story of neuroplasticity through the arts, and learning to mindfully breathe, inspire others who live with chronic pain.

In closing, I would offer: Your soul is without limits, may you come to know your breath well enough to transcend the physical plane, may you come to know your consciousness is capable of existing multidimensionally everywhere, as one with everything that is beautiful in this world. Allow curiosity and inspiration to illuminate the path forward for your personal healing. Embrace a committed practice. Come to know yourself as a lifelong learner. Seek out new experiences and fall in love with your very next breath.

With a heart full of gratitude,

Grace Valentine, LMF

ANDREW EDWARD BOYLES

I have had Arachnoiditis since 1993, when I was 28 years of age. I am currently 57 and I have been suffering with the effects of this disease for almost 30 years.

Briefly, I would like you to know that I retired at age 50 in November 2014.  I was at that time an executive with the largest telephone company in Canada, and my title was Senior Director Network Operations.  I was educated at Dalhousie University, School of Engineering in Halifax NS Canada.  I graduated with a bachelor’s degree in Industrial Engineering (Distinction) in 1988 and I was a member of the Association of Professional Engineers and Geoscientists of New Brunswick, from March 1991 until May of 2015.  I retired mainly due to having adhesive arachnoiditis and being in so much pain that I could not continue to travel, work long hours, and concentrate on the deep analytical and organizational tasks that had been my forte for many years.

My story begins in childhood.  I was very close to my grandparents, and I spent many summers with them as a young child.  My grandfather was a champion athlete in single sculls rowing, and his cousin was Charles Ingraham Gorman, the world champion speed skater from Saint John, New Brunswick Canada.  He encouraged me from age 10 to start rowing in a rowboat.  I spent countless hours practicing, and the hours eventually turned into years.  My grandfather bought me an old racing shell when I was 13 and I practiced and practiced for the next couple of years.  I would spend at least two hours a day rowing plus another hour doing running and light weights.

When I was 15 years old, I had my first competitive race which I won.  I proceeded to enter various races locally in the eastern part of Canada and I won many of those as well.  Things were going well.  I was doing very well in school, graduating with highest honors from Junior High and on the right track to duplicating that in Senior high school.

I remember one day I was rowing against another boat when I was 16, and I was pulling on the oars with all my might, and I felt something “pop” in my back.  From this point onward for the next 9 months, I could barely bend over or lift any sort of weights at all, and my training mostly stopped.  This is the inflection point of all the future problems that I was to experience in my life.  And I remember this so clearly in retrospect when it all went wrong.

By the age of 17 the injury appeared to have healed and I was back into competitive rowing again.  I was weight training and running in the winter months and spending four hours a day on the water with only a half day off a week. By my last year in high school, I achieved my goal – I won the Canadian Junior Championship at the Canadian Championships Regatta in St. Catharines, Ontario.  I was awarded an athletic scholarship from the Province of Nova Scotia, and an athletic scholarship from Cornell University in New York. I also won an academic scholarship from St. Mary’s University in Halifax NS.  I graduated with Math and Science Honors from my high school and won the Chemistry Prize in my senior year.  Life was unfolding well for me.

When I went to Engineering school the demands of the program were very rigorous.  I could not continue to row competitively and also graduate with the marks I felt were necessary to get attention in the job market.  So, I stopped competitive rowing and focused on my studies.  By 1988 I had graduated with Distinction from my program, got married and moved to a new province to start my career.  I continued to go to the gym and participate in activities such as tennis and bowling

By 1991 I noticed that my back was getting very sore from playing tennis.  The rapid movements were becoming difficult for me.  I went bowling a few times until one time I went, and I ended up on the floor for almost two days with back spasms.  I recall scraping the ice off the windshield of my car in the winter and collapsing in a sweat, in significant pain and not understanding why.  Due to these events, I started my long (and regretful) association with chiropractors.  I saw them regularly trying to get my back into normal condition, but nothing was working.  During this time, because I did not have any x rays or radiology, I continued to lift weights and bike at the gym with the blessing of the chiropractor.

In September 1992 I was lifting weights and at that time I felt my back “pop” and I was immediately in severe pain.  I could barely make it back to my car and drive home.  Later, after I was referred to a neurosurgeon, and subjected to a CAT scan and myelogram with the plaque-based contrast dye in my spine, it revealed that my L4-L5 disc was severely ruptured.   I did not get my surgery until May 1993 – a wait of 8.5 months.  During that time, I was off work, completely immobilized, and in the most severe pain you can imagine.  I spent my days and nights on a hard floor, pillows under my knees, crying in pain, scared, with a brand-new daughter, not knowing what the future would hold for me. Would I ever get back to work? How can I survive financially?  Many psychological stresses were layered on top of the physical pain.

My operation took place in May 1993 and after the surgery the neurosurgeon said, “I spent hours picking bits of your disc material off your spinal cord.”  Later (years later), I read a copy of his surgery notes and it said clearly that when he was operating on me his scalpel cut through the dura in my spinal canal.  This is the defining moment of my life when unbeknownst to me, this event, this surgical mishap, set in motion the process of adhesive arachnoiditis in my spine.

It took me until April 1994 for me to get back into the office for work.  My recovery was extremely difficult. I could not figure out why it took me so long to recover.  Doctors had assured me that within six months of my surgery I would be “back to normal.”  This was not the case at all.  I was off work from September 1992 until April 1994 – over 19 months in total.  I was incredibly fortunate to have a boss who believed in me and went above and beyond the call of duty to make sure that I was looked after professionally and that my career would still be on track when I returned.  Remember at this point I had been with the company for less than four years.  To this day, this man, Mr. Robet Justason, is a close personal friend of mine, someone I look up to as a mentor, and a person that without his intervention to help me, I never would have achieved the success I did at work.

Years went by and all the athletic things I used to do were gone from my life.  Rowing, tennis, running, bowling – anything that caused torsion to the spine or impact to the spine were “no nos.”  Depression set in.  All I could do was walk, swim a bit, and ride a bike.  By 1997 I was back to the gym doing light weights and cardio workouts on the bike and step machine. My back always needed babying = I could not sit for long durations as it was just too painful.  I was back to work and, surprisingly, doing very well in my career. Unfortunately, my marriage ended that year.  Part of it was due to all the stresses with my back, of this I have no doubt.

Gradually over time I was able to do some road biking and a lot of long walks. My back was never the same, especially with sitting. It was very painful to do for long periods. I had to stand up at work a lot during meetings and I got a lot of funny looks.  I had to start explaining to people what had happened to me and why I had to stand.  It was stressful and embarrassing.  Today, I am so used to explaining it. I don’t give it too much thought, but I still do feel somewhat ashamed that I have to do it, because everyone else in life can do it no problem at all.  Having this condition makes it impossible to hide.  Everyone knows there is something wrong with you, but they also are often embarrassed to ask.

When I met the woman who was to eventually become my wife in 2006, I was a physical specimen.  I was 41 years old, I looked like a professional athlete with a washboard stomach, I was 6 ft 163 lbs. of lean muscle.  I was going to the gym regularly.  I had a constant aggravation of my back and my left foot, but it wasn’t too bad in that I could walk 10 miles a day or more and still look normal to the untrained eye.  In 2012 my wife and I bought a condominium in Las Vegas.  I was doing very well at work – I had been promoted several times and was just below Vice President, a member of the executive team.   I had up to 450 people reporting to me, I was at the top of my game mentally, I was in love, all my debts paid off – life was finally looking really good.

And then when I was doing some yoga stretching at home for my back in May 2012, I felt it “pop” again.  I instantly broke out into a cold sweat.  The next morning in bed I turned over and my wife and I heard a loud audible “snap.”  Unknown to me then, I had ruptured my L5-S1 disc.

I was in an indescribable amount of pain.  I was off work immediately. I was in emotional and physical turmoil.  At this time, wait times in Canada were getting unbelievably long for diagnosis and surgery.  Luckily for me I was not alone, and my wife was working.  We knew it was very bad.  I begged my old neurosurgeon to operate on me because I was in so much pain, I literally felt they would just leave me like I was, forever.  I was suicidal, for many months.  I fantasized about hanging myself every day of my life because I could not bear to look at the future and believe the system would leave me untreated with no hope of getting better.  Also, I was 48 years old and many years away from retirement.  My house was paid, and we were debt free, but I was a long way from having enough money to walk away from the business and never have to work again – I needed to get back to work.  Our future depended upon it.  It was only through the support of my wife and my mother that I survived 2012, it was very close to the end for me.

So, I subjected myself to another disc surgery in January 2013.  It did not go well.  I never recovered properly from this surgery, and I had constant chronic pain in my left foot, leg, and back after the surgery.  It took me almost six months from the time I had to stop work until I was able to start working again at home, and I started work only because I didn’t want to get put on long-term disability, as my pension time would stop accumulating. I made my wife promise to quit smoking if I made it through the surgery and that’s the best thing I can think of as a result of this surgery.

Gradually over the next two years I lost more ability to walk and sit. I was in constant pain, and nothing seemed to help.  By October 2016, I was not able to walk more than 50-60 yards without having extreme pain in my feet and burning in my legs.  I found out about a surgeon in Germany who helped a local friend in Halifax, and that is how I got in touch with Enande in Bremen Germany.  I had MRIs done of my back and neck, because by this time I felt something was seriously wrong with my neck as well.  And sure enough, L3-L4, L4-L5 and L5-S1 discs had disintegrated.  I had no disc material left in the bottom three discs in my spine.  Plus, discs C4-C5 and C5-C6 in my neck were also ruptured and almost no space was left in between the vertebrae. Dr. Ritter-Lang told me there were inflammatory cascades in my spine because there was no space left for the nerve roots.

In January 2017, my wife, my mother, and I travelled to Bremen Germany for me to undergo a five level Artificial Disc Replacement surgery.  I had my surgery January 12, 2017, and at that time I was the first patient that had a five level ADR surgery at one time.   The discs in my lumbar spine are made from titanium and a space age polymer while the discs in my neck are made of titanium, but thinner and using industrial made diamonds.  The discs expected lifetime are between 65-75 years.  Being 52 years old at the time I figured it was a safe bet that I would outlive their expected lifetime.  We were in Germany for a month recovering from the surgery.  My neck recovered very quickly without more residual pain.  But my left leg, foot and back still were not feeling normal. Why?

As time went on through 2017, it became apparent that something was wrong.  I was still having severe pain in my legs, back and feet. I was on 60 mg of oxycodone a day and it didn’t feel like it was helping at all. All of the MRI follow ups looked fine – the implants were exactly where they should be – the surgeon in Germany did not understand why I was still having pain.  He suggested I come back for a series of tests and epidural blocks.  I said no, that was not going to happen.

In desperation I began searching the Internet for the symptoms that I was experiencing. After many days of eliminating one thing after another I found a website in California that was  https://arachnoiditishope.com/.  It was created by Dr. Forest Tennant, a specialist in pain management.  On the site there was a questionnaire which was designed to determine if you had a high probability of having arachnoiditis.  I filled out the form and sent it via email to Dr. Tennant.  I also sent Dr. Tennant a couple of CDs with MRIs and X-Rays.  I remember when Dr. Tennant got back to me in early November and told me that I indeed did have adhesive arachnoiditis (AA). I can remember crying for hours, days even, trying to comprehend that I had an incurable pain condition.  After all I had been through to find this out now was devastating.  At that time, I was good friends with the Chief Medical Officer of my company, and he arranged to have me tested at Johns Hopkins International Hospital (JHIH) in Baltimore, MD.  My wife and I travelled to JHIH and I had yet again another myelogram and CT scan.  The diagnosis of Dr. Tennant was confirmed – I had adhesive arachnoiditis.  And they wanted me to have a spinal cord stimulator implanted – I declined immediately as I knew the success of those devices was extremely low and the costs were astronomical.

My only hope was to ask Dr. Tennant what could be done to help me.  Through a couple of very kind ladies on a Facebook site dedicated to helping Arachnoiditis patients, I was able to get an appointment booked with Dr. Tennant on January 15, 2018.  Luckily my wife and I own a condo in Las Vegas and were able to drive to see Dr. Tennant.  He examined me thoroughly and discussed my history and my radiology results. By this time, we both knew I had the disease, and the question was how was it best treated?  Dr. Tenant created a custom protocol for me consisting of several anti-inflammatory supplements and injections, corticosteroids, and hormone treatments.  I also was encouraged to use magnet therapy and infrared light therapy.  I started this therapy immediately.  Dr Tennant told me that progress would be slow and that I was to keep taking these medications in addition to the oxycodone I was already on.  He said that in perhaps 4-5 years I had a chance of being significantly better but there were no promises.   I was fortunate enough to visit Dr Tennant one more time in April 2018 before we went back to Canada.

I will be honest, there were no quick turnarounds.  I was still having a lot of pain and while I increased my walking such that I was walking a km a day, in total, each day by mid-2018, I was still in a lot of pain and discomfort.  However, I stuck to the protocol.  By late 2019 I got into a very bad flare, and it lasted for months.  In late February 2020 my wife and I travelled to West Covina, CA to explain it to Dr Tennant, but we had very little time as we were called back to Canada because of the COVID-19 pandemic.

I was in awful pain and in desperation in early May my doctor in Canada allowed me to try Fentanyl patches instead of oxycodone.  It was a “Hail Mary” request as I could not think of what else might work.  And it was like my prayers were answered as within 10 days of using 37 mcg/hr. patches my pain level dropped by 80%.  My life turned around almost immediately and while my total walking distance did not improve, my pain level had dropped so much that I felt I actually had a life again, after being in intense pain for so many years.  And since May 2020, life has been significantly better.  Removing the constant level of pain I was experiencing was like lifting a huge weight from my shoulders.  For the first time in 5 years, I was able to be happy again.  I knew I would always have this condition but now my pain had dropped enough that I felt life was worth living again.

I still am on essentially the same protocol from Dr. Tennant as I was since January 2018.  I have reduced my Ketorolac due to concern for my kidneys, but added other anti-inflammatory supplements based on Dr. Tennant’s advice.  Dr. Tennant has been my only hope for getting better or at least maintaining my condition. I am so thankful to him and all the help that he has given me.  I believe I will be on this protocol for the rest of my life, and I hope that I continue to be able to feel as good as I have for the past two years. While I still have flare ups, they are shorter in duration and its longer in between large ones.

I hope my story will provide hope to those who are suffering with this terrible condition, and I hope the work the Tennant Foundation is doing will enable AA to be classified as a disease in all of the reference medical journals. Once this happens there will be even more hope for those afflicted as there will be more medical talent and money brought to bear to improve diagnosis and treatment.

Andrew Edward Boyles

KIMRIE M. DONOVAN, MD, FAAP – MY STORY

I am both a physician and a long-term, late-stage MS survivor.  Since my mid-teenage years, I have lived with chronic, almost daily pain, and episodes that now were clearly MS flares.  I am hereto categorically state that MS is a major source of often unrecognized, unrelenting, and excruciating pain for many patients that suffer with it, especially as it progresses.  I honestly believe many people have never experienced anything close to the level of pain that I am talking about unless they have had major surgery which usually gets treated with “heavy” painkillers in the short run. (I have surprised people when I say that living with shingles for literally months on end in more than on dermatome (location) was mild compared to what MS can be like).

Pain is truly relative in my perspective, as I am used to a baseline degree daily that some people only experience occasionally.  I also believe that some people truly experience pain more than others genetically, but I’ve also trained myself to literally “block out” some basic pain; for example, I do not feel most needles and IVs being inserted anymore.  I can tolerate up to 5-6/10 pain and “get on” with my day if I have to.  Early on, I was technically considered a “low risk” type of MS, except for the fact that it started in my spine, which unfortunately also meant it took many years and specialists to diagnose.  Currently, imaging the entire spinal cord as well as the brain is apparently standard of care in MS workup, from what I read and learn from colleagues.

While I had some constant daily symptoms like burning, numbness, and unusual fatigue since my late teens, I did go through periods of times where I was much more active than others during my 20s and early 30s.  My residency was very complicated by the fatigue that could be overwhelming.  I can imagine that many of my greatly overworked fellow residents must have thought I was ”lazy” since I did not have a definitive diagnosis yet. Since multiple doctors were unable to give me a clear diagnosis until my early 40s (true and, tragically, not uncommon in many patients my age and older), I just thought most people lived in pain constantly and literally were consumed with fatigue all day most days.  I blamed my visual changes on my call schedule and lack of sleep.  I know that my dangerously elevated cortisol level was largely responsible for my poor health and weight gain which others around me worried about and did not understand.  I just “soldiered on” because I had no choice and I had two beloved children to raise on my own.  But I do feel that it impacted the trajectory and quality of my career and my personality.  As many people now know, chronic severe pain has dire consequences on all aspects of your life.

By my second year of residency, I became pregnant with my first child and actually felt much better than I had in years.  Unfortunately, I did have to bed rest, but it was for a different medical issue.  In fact, many women with MS have reported symptom improvement during pregnancy, a key insight and consideration in developing new treatments.  I have recently started the Tennant Protocol for AA, as a research subject.  I have especially found that Human Chorionic Gonadotropin (HCG) a hormone released during pregnancy that helps grow nervous tissue in the developing baby), in the doses suggested in the Protocol has helped me immensely.  I am no longer bed bound, I am walking once again without my scooter, the contractures are calming down, and my blood flow to my muscles has improved greatly, they are much stronger, and the pain has lessened by 75-80%.

On the other hand, menopause is the opposite for many female MS patients who experience significant disease progression including myself.  I had, and still have, an amazing physician who addressed my needs and deterioration at that time, and I must credit her with saving my life at that point, but I have been left with a baseline disability called Secondary Progressive MS.  I realize I have had MS for at least forty years now, but I also know that I am part of a large group of women my age and older who did not receive an early diagnosis and treatment options.  We are suffering more because the disease has ravished damaged our Central Nervous System CNS, and body, and many of us live in unbearable pain.

Having the actual diagnosis of MS has allowed others to be compassionate and patient in ways that I never experienced previously.  Being told “it’s all in your head” more than once is not an easy thing to swallow.  MS is a confusing disease for those who do not understand it well, especially how it often fluctuates so much in the initial years.  For example, at one point during my first episode at age 17, I was almost unable to move and then needed a wheelchair occasionally; at other times I was doing activities with my friends and family or even ice skating despite foot pain.  I remember being in a premed class and unable to focus on the material because my legs hurt so much.  In other words, looking back the whole picture makes sense but without a diagnosis it was very unclear and confusing.  In addition, other medical things were blamed for some of my symptoms.

In conclusion, I would like to support the Tennant Foundation when they say “some excruciating, constant pain can cast the poor suffering individual into a humbled, bed-bound state.” This could not be more accurate in describing some of my last few years.  I want my story to be told in order to help others.

Kimrie Donovan, MD

THERE IS HOPE.

I would like to share a positive story with you all.

I was in a terrible, terrible state (like many of you).  I had every symptom in the book: Extreme back and legs pain. I couldn’t stand to brush my teeth or wash my hands. I couldn’t take the elevator to get to my motorized wheelchair.

I had the feeling of water running down my legs, numbness, burning of my feet accompanied by red patches. I had muscle cramps day and night. No sleep at all, and the list goes on.

I was heavily medicated with everything you can imagine: Opioids, cannabis all day through, Gabapentin, and so much more.  The pain just got more and more intense.

Dr. Tennant was the one to do the diagnosis after reviewing my MRI. I have adhesive arachnoiditis (AA). My own neurosurgeon’s diagnosis was: Three failed surgeries.

I, of course, had countless spinal injections as well, despite the fact that they didn’t work. I didn’t know ….

After Dr. Tennant’s diagnosis, I shared it with my family Doctor and my neurosurgeon.  I had a long talk with my family Doctor. I brought Dr. Tennant’s book to him and marked the pages that had the treatments which Dr. Tennant recommended for me.  I told him that this is my last hope as my condition not only affects me but my all family. What’s the point of living like this??

I was basically in bed all day long, just out of it, and IN PAIN.  I asked him to help me by just looking at the plan. Just read what I brought him.

He did. My doctor is also a researcher. So, he studied it. He consulted with other Doctors and agreed to apply the recommended treatment.  He, of course, explained the risks but agreed that at this point we need to try.

So, I started the hormone therapy to TRY to rebuild the nerves, (I was already on Gabapentin, and the rest).

The most difficulty I had was convincing the Doctor to try KETOROLAC.  He added Ketorolac by mouth 3 times a week.  In the first month, it was magic.  I was walking 2 km a day!! My doctor was shocked to see the effect.  When it started to lose its effect, he changed the prescription to 30 mg. injections, twice a week, and if needed, 3 times a week.

This changed my life.

As you know, Ketorolac is a powerful anti-inflammatory and pain control medication.  My doctor said that he starts at 30 mg, and with time, I will probably need 60 mg injectable.

I have a nurse coming to inject it.  Still – in case of the possibility of intolerance or other issues, and we will need to stop, we have a plan for an anti-inflammatory medication (that I forget the name now)- recommend by Dr. Tennant.

My life has changed.  No more cramps. No more feeling of water running down my legs. I still have mild burning here and there, but not 10 times a day.

I KNOW THAT MOST DOCTORS DO NOT AGREE WITH THIS, I KNOW.

I felt that I need to share it in case you have a doctor that you can have a productive conversation with.  I don’t know the long-term effect, but I do know for sure that just being in bed all day, drugged out, caused multi-system problems.

Now I am alert. I am still on opioids because it’s not something that I can just cut like that after 7 years on doses that I don’t want to tell you.

It has been cut in half, but the objective of being pain-free has been achieved for now.  I was sooooo close to losing my mobility. When I walked 10 mins very slowly, my muscles were so sore it felt as if I had run a marathon. My muscles were dead.

Now can take a good walk.  I can walk just with a cane. I don’t take cannabis because I don’t need it. But, if I do need 20mg of CBD, it does the job.  I used to be on 20mg 3 times a day + THC 10 mg. So, my memory was affected. I am sure many of you are familiar with this.

I got my life back, and pray for all of you, each one of you, that somehow you will be able to have a productive talk with a good doctor.  A Family Doctor, a Neurosurgeon, whoever is open-minded.

I hope that this gives you hope, not frustration. Think of a Doctor who might be helpful.  I don’t know for how long I will be able to be on it, but in the meantime, I was able to regain so many things which were lost.

Wishing you good health.  O, yes, I live in Montreal Canada.

Take care, stay safe. NSB

An AA Story,

First, I will start with a bit of my medical history. My first autoimmune diseases were fibromyalgia and psoriatic arthritis. As of this date I have had 5 autoimmune diagnoses. We will get back to that. I discovered the PA (Psoriatic Arthritis) after my first back surgery. I am healing from my 4th back surgery as I write this. At age 41 I had x-rays done of my back, and I had very little to no arthritis. My spine looked like a healthy/normal 41-year old. Three years later, however, I was in surgery with a ruptured disc needing a 2-level bone disc removal procedure. The rupture was so bad that for the 3 weeks before I had surgery, every time I stood up, I collapsed on the floor. Surgery seemed to go well. In the meantime, we discovered the PA, so I started on my search to find a medicine to help slow down the process for that disease. A year and a half later my back collapsed, and I was back in surgery. This time I required fusing of 3-4 levels. I had a lot of numbness and weakness after I went to rehab to retrain myself to walk. In between those 3 years we did try multiple steroid shots for pain in the back. I did recover, but unbeknownst to me, AA was brewing! About a year and a half after surgery I went to London. It was an amazing vacation, but by the end of it I was having severe pain in my feet and problems walking. After I got home it just kept getting worse. The weird sensations started, and I had severe spasms at night. I wasn’t sleeping and the pain was now constant. I finally got a diagnosis of AA. I was sent to pain management and put on meds that only helped a very little. The one that helped the most was Valium®, and they don’t want anyone on that or pain pills. At one point my leg gave out on me and I broke my ankle. I do know that the mental work of the pain clinic and the support of my family and friends along with my faith is the only thing that pulled me through. As anyone who has AA knows, it’s the process of being tortured by your own body physically and mentally! And to top it off Drs seem to think you can work through it. I am so appreciative for all the base work I did, but without Dr. Tennant’s protocol, I wouldn’t be walking. So next my sister and I went to a neurologist and I got diagnosed with small fiber neuropathy. She started thinking, could these autoimmune diseases be linked? She started researching and found Dr. T’s podcast. With that we were able to track him down. I’m lucky enough to be living in California. I flew down to see him for about a year and 4 months. I had to be in a wheelchair on and off the plane and have special seating. After my first shot of methylprednisolone in his office, I felt a difference! I have flown down to see him every 2 months ever since. By the 3rd time I had no need for a wheelchair or special seating. I feel I am a success story. I have had to have 2 more back surgeries but with no new signs of AA. I’ve used the emergency treatment protocol after each surgery and after this last surgery I am feeling really well. No new issues and am feeling strong. I truly believe that the raw adrenals help in recovery as well. Also, collagen supplements help in the healing process. The 3 emergency meds are so important to get the inflammation out and let the body start healing. I was also able to find out what hormones that I was low in. That has helped. My energy is good as well. My newest MRI showed some healing of nerves. There is hope! I am no longer tortured. Thank you so much to all who have been a partner of finding this hope!

Sincerely, TS