We will publish letters and comments on this site.  They will rotate often as we believe actual letters and case reports are an excellent resource for arachnoiditis patients to improve their care.  Send your letter to “Arachnoiditis Research and Education Project“.

You may send your questions to veractinc@msn.com , fax to 626-919-7497, or mail to:

The Tennant Foundation

Arachnoiditis Research and Education Project

334 S. Glendora Ave.

West Covina, CA 91790-3043

 

Dear Dr Tennant,
Just a line to say that I began taking LDN three weeks ago and the results have been remarkable. It has reduced my symptoms by 95%. If ever my low back muscles start tightening (standing for anything more than half a minute is still a difficulty), I pop a minimal amount of Valium® (half a tablet) and it does the trick. I continue walking briskly for about a mile every day and add a few stretches into the bargain.
I may be wrong, but I believe opiates are contra-indicated for LDN as they are likely to negate the effects of the low dose regime. Could you kindly clarify this in your next bulletin?
Best regards, R

ANSWER

Dear R,

I’m very glad LDN is working for you. My next recommendation is to obtain some OTC bovine adrenal extract and curcumin/turmeric. Both of these agents in addition to LDN can be extremely helpful in obtaining some curative effects. I don’t recommend opioids with LDN, but one can take ketorolac, PEA, and CBD oil with it for additional pain relief.

Best wishes always, Forest Tennant

Dear Dr Tennant,
I communicate with you because I desperately need your help again.

I have been suffering from post-operative arachnoiditis for 2 years and following your protocols in the last 10 months. I have seen a real improvement. I was able to live a normal life, working daily and supporting my family in all aspects of life. And all these with daily curcumin and serrapeptase, zero painkillers and only 75mg pregabalin/day- plus some cortisone and ketorolac for 2-3 days per month.

Twenty days ago, I made an electroaccupancture session in the hope that it would help me with the chronic pain. From the following day, however, the pain and the neurological symptoms in my lower spine and legs were ejected to levels that I have never experienced until now. I’m in bed with 400mg pregabalin daily, daily anti-inflammatory and big doses opioid painkillers and things are getting worse every passing day.

From your experience, do you think something went wrong in the session or was the electroaccupancture a NO-NO for ARC?

Thank you in advance and looking forward for your opinion. V

ANSWER

Dear V,

Unfortunately, any electric current administered to an AA patient may activate and create neuroinflammation. I highly recommend the 6-panel hormone test. Replenish any that are low. Above all, I recommend a 6-day methylprednisolone (Medrol) dose pack. Hopefully this will get you back to where you were. Furthermore, if 6 days of methylprednisolone helps, you should maintain on a low dose (2 – 4 mg) on 3 to 5 days a week.

Make sure you are taking at least one drug from each of these categories:

1. anti-neuroinflammation;
2. neuroregeneration (anabolism);
3. symptomatic pain relief.

You are a candidate for therapeutic trials as outlined in the attached bulletin.

Best wishes always, Forest Tennant

Dear Dr Tennant,

I came across your website on this topic and found the information extremely informative. I would be really grateful if you could kindly send me a copy of the medical protocol that you referred to in the handbook?

It would appear that good quality information and advice on treatment of this condition is very hard to come by in London.

Many thanks for your kind assistance.

With best wishes, Dr. N

ANSWER

Dear Dr. N,

I’m attaching the diagnostic and treatment protocols we use for adhesive arachnoiditis (AA). I got into dealing with this problem some years ago as over half the patients who attended our palliative care, intractable pain clinic had it. I no longer believe this is a rare condition. Although new and different, the protocol is no more complex and risky than the treatments for asthma and diabetes.

I really appreciate your interest as I believe physicians everywhere will have to learn about and participate in the treatment of AA.

Best wishes always, Forest Tennant

Dr Tennant,

My physician is concerned about the use of long term Toradol® use. Are there any studies or any information that you could provide on the benefit of Long term Toradol® use for arachnoiditis?

Thank you, A I

ANSWER

Dear A I,

Your physician is correct. We only recommend low dose ketorolac (Toradol®) on 1 t0 3 times a week. You can also intermittently stop Toradol® for a month and restart.

Be clearly advised. Ketorolac (Toradol®) may be the only drug that is really effective in some arachnoiditis patients. Also, be advised that we usually have ketorolac made as a troche which is safer than injections. The benefits usually outweigh the risk in arachnoiditis patients.

In our protocols we have some other agents that can be used besides ketorolac (Toradol®). Please share this information with your physician.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

Hope you had a great Xmas and I wish you and your family a very Happy New Year! We all love you so much for all you do to us, abandoned patients around the world!
I have noticed that ever since I got injured into my spine by that epidural needle, my D dimer that is used to measure thrombosis likelihood has been very elevated, and I wonder if there is any connection. It would be good to measure a few other patients and see if there is any correlation. I would not be able to explain anatomically what it means, but what if it is also a marker of neuroinflammation. This is just a layman thought as no doctors can explain why I have an elevated d dimer, but I also have no thrombosis.
Happy holidays!

Regards, D

ANSWER

Dear D,

I have thought about your situation, and it makes perfect sense. In AA small, toxic, inflammatory nerve root particles are shed into the spinal fluid. These are carried by spinal fluid up the spinal canal to be emptied into the blood stream. Unfortunately, these bits of toxic, inflammatory nerve tissue particles cause an autoimmune reaction, and alteration in blood clotting is often a component of an autoimmune disorder. My guess is that other AA patients will have your same situation. It should be a good marker for AA. Please share my thoughts with your physicians.

Best wishes always, Forest Tennant

Dr. Tennant,
I found you on YouTube, which led me to your website. I had a incidental Dural tear on 1-11-17 in surgery for L3-4 disectomy/laminectomy. Even though he sutured it, I continued to leak CSF fluid for 8 months before he acknowledged the problem. I received a blood patch in Nov. of 2017, which held for a couple of months. I am currently waiting for a 2nd patch.

I recently got diagnosed w/ Incomplete CES & mild arachnoiditis at the area of the Dural tear (MRI confirmed). This is a Worker’s Comp injury, so I must prove the cause of the arachnoiditis/CES before it is accepted for treatment & covered by them.

I have been complaining of these symptoms since 2weeks post-surgery, & I keep telling all my Dr.’s that I feel I’m getting worse. In your opinion, did the Dural tear cause the arachnoiditis/CES or are the 2 related? I have to prove they are related to get treatment, although my surgeon has said there is no cure.

Thank you, J D

ANSWER

Dear J,
It is well known that dural tears may cause arachnoiditis. In my experience, the need for a blood patch for a long-term spinal fluid leak id highly associated with arachnoiditis.

While a total cure is not common, we now have arachnoiditis treatment protocols that significantly controls the disease. Based on your history and symptoms, I believe you should be in specific treatment for arachnoiditis:

1. suppression of neuroinflammation;
2. promotion of neuroprotection and neuroregeneration.

If you are not on daily opioids, we highly recommend low dose naltrexone with a neuroinflammation suppressing agent and one or more non-opioid pain relievers.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,
I’m providing important information on your low dose naltrexone (LDN) bulletin. There are some patients that can take LDN and opioids concurrently. I am one of them. Patients that choose to try opioids and LDN at the same time need to be aware that if their body doesn’t allow them to take them concurrently, they could suffer withdrawal symptoms until the LDN leaves their body. They need to ensure that they don’t take more opioids to try to treat the pain during that testing period or there is the risk of overdose. i.e. they need to stay at the same opioid dose they have been taking (no more). I’ve been on a LDN dose of 2.5 mg a day for a couple of years now. It doesn’t help with my pain but has greatly improved my sleep and my doctor believes it has improved my functioning. I also take MS Contin and Oxycodone (>90 MME per day).

FYI – I’ve recently been added to the CART group. I do not have AA but have empty nose syndrome with centralized pain and I suspect some of the treatments for AA could apply to my rare condition.

Sincerely, A

ANSWER

Dear A,
Thanks for your most informative note on low dose naltrexone. You are most fortunate that you can take opioids with it. Most patients cannot take even low opioid dosages while on naltrexone. Also, thanks for your tips on how to test whether you can do both.

With gratitude, Forest Tennant

Dear Dr. Tennant,
Hello, dear doctor, I have ARC. It initially developed in my lower spine after my first back surgery at the age of 11 then again after my second surgery above L4/5 at the age of 55. The pain was so debilitating the second time that I had a spinal cord stimulator implanted. I have had it for about 3 years now and my pain is under control.

My concern is that I am not taking any curative medication and I don’t know the best way to go about explaining my needs to my doctor. Which of your numerous publications would you recommend I have my doctor read so that I can be put on a regimen?

I greatly appreciate your research and advice. I wish that there were more doctors like you.

Sincerely, CG

ANSWER

Dear C,
You can go about your problem in several ways. I would inform your doctors that the need to treat ARC is so great that our Foundation has now funded a research and education project. Please download some of our materials from our website and show them to all concerned.
Let your doctors know where you can obtain compounded medications. Two of the best medications for ARC are proving to be low dose naltrexone and ketorolac.

To get started, obtain some of the OTC (non-prescription) curative agents and start them. This alone may stop progression of ARC. I particularly like curcumin/turmeric, Serrapeptase, pregnenolone, and DHEA. We can send you and your doctors our latest diagnostic and medical protocols.

Best wishes, Forest Tennant

Hello Dr. Tennant,
I mailed out my images today, you will get them tomorrow.
Also on the FaceBook group that I am in, one post states that you told them the total body vibrations are part of Arachnoiditis.
Soooooo… upon impact of my auto accident, I had this total body vibration with a humming, that started at the top of my scalp and went down my entire head, neck spine and my whole body to my feet. I could not hear anything else while this was happening, It lasted I am guessing maybe a minute or two. Ever since that day every time I lay down the vibration comes back and is very hard to sleep. All of the doctors but one, Think I’m nuts and have never heard of it. It’s worse when I lay on my left side… but happens any way that I lay down. Dr Middleton said that he thinks I nicked my spinal cord since I am so narrow in the neck and could have worsened with the collision.
Just wanted to add this to my other email!

Thank you, W M

ANSWER

Dear W,
Thanks for the information on vibrations. I agree with your physician that some major nerve was damaged in your accident. My current theory on vibrations is that a nerve or nerves damaged by trauma or inflammation may stop the natural flow of electricity up and down the nerve which is a biologic wire. When this occurs electricity can back up and cause vibrations. Vibrations can be very hard to eliminate. Certainly, you should try copper and magnets because they either attract or mobilize electricity. Some patients are getting relief from vibrations by use of some of the new medications marketed for “restless legs” syndrome. Over-time, it is possible that nerves can heal and normalize electrical flow.

Best wishes always, Forest Tennant

Dear Dr. Tennant,
I hope this message finds you and your wife well.
I have a question. I know due to the damage to our spinal cords, most of us are unable to wear a watch due to it “killing the battery” (I’ve not been able to ware one for about 7-8yrs now) due to our body constantly firing, but I also have a problem with cell phones.
My cell phones last me about 3 months top before it starts having problems even with a phone case cover.
Is this also a problem due to our condition? Even my new tablet (computer) does this when I use it.
I just find it interesting and aggravating that it’s only my electronic devices that do this. My husband never has a problem with his.
Best wishes and kindest regards, D C

ANSWER

Dear D,
One of my theories with neurodegenerative diseases is that of retained electricity. Nerves are, among other things, a wire that transmits electricity. If wires are damaged, entrapped, or otherwise blocked, electricity is retained or “back-up”. The retained or excess electricity needs to leave the body at some point, because the body continually produces more electricity. I believe this is also the basis for vibrations that are troublesome to many patients.

I recommend that patients help control their electricity by wearing copper or other metal jewelry. Magnets in shoes or even in a bed may be therapeutic. Water soaking is excellent as water pulls out electricity. Patients should hold metal (e.g. silverware) throughout each day to help eliminate retained electricity. A simple remedy is hold onto a brass door knob or car door a little extra time. Be advised that my theories may not be totally correct, but I don’t know of any physician who has an alternative theory.

Best wishes always, Forest Tennant

Hello, I have an 11-year old son with a diagnosis of Ehlers Danlos Syndrome, hypermobility type from a geneticist. He has had intractable pain for nearly two years now in his legs. Seattle Children’s Pain clinic has deemed it Amplified Pain syndrome and has said that the only treatment is physical therapy which we have been doing for several years now (he has had joint pain since he was a toddler, but this intractable pain is newer).

I recently read your article on EDS and Pain management and was hoping you may have some more information and guidance for us. I am also reading your self-help guides available on your site.

Thank you, K

Answer:

Dear K,

Thanks for writing. It’s good that you have a EDS-Hypermobility diagnosis at a young age (son). I disagree with the point that physical therapy is “the only” treatment. I do believe you should do the physical therapy they recommend. If you don’t get the results you need (pain cessation, good function, school attendance), I recommend a specific, high protein/amino acid diet plus some natural herbs and other non-prescription compounds. I don’t like young people to use prescription drugs unless natural and non-prescription drugs fail to relieve pain, but micro-tears can occur in an 11-year old that may generate permanent pain. At present most of our information on our websites is for arachnoiditis. The natural and non-prescription agents are, however, the same for EDS/hypermobility.

In summary, I believe that EDS/hypermobility is a genetic, tissue degenerative disease that produces micro-tears and needs to be healed lest they create inflammation and persistent, even permanent tissue damage and pain in affected joints, spine, and muscle.

Best wishes always,
Forest Tennant

Hello, I hope you don’t mind my writing to you…my name is EC and I live in rural SW Iowa where we have limited medical specialists.

I am a 50-year old obese female and have experienced low back pain most of my adult life, but this past year it has gotten much worse.  It used to be something that would flare up once or twice a year and after a few days of rest and some muscle relaxants it would ease up and I could get back to normal life.  This last year it has been pretty much a non-stop, very painful problem which is affecting my life negatively.

Early this summer I couldn’t stand the pain and went to my PCP who ordered x-rays and told me I had a severe degenerative ‘thing’ going on and should see the orthopedic surgeon who comes out to our clinic once a month. He also prescribed a short round of prednisone (which relieved the pain for a couple months).  I saw the orthopedic surgeon and he confirmed degenerative disc disease and told me I could get injections into my spine to help.

Injections seemed scary to me so I just went on living with the pain and discomfort until I mentioned it again to my PCP last month (during a normal check-up for blood sugar, cholesterol level, etc).  He said I needed to go in for an MRI before they could do spinal injections.  I agreed to the MRI, still nervous about the idea of shots into my spine.

The MRI report came back and my PCP said the results showed things he wasn’t able to handle and that I should see the orthopedic surgeon again.  I made an appointment and saw him last week and the visit went terribly.  He started the visit by telling me he didn’t really care what the MRI said he just wanted to know what my symptoms were. When I tried to explain them he just kept cutting me off.  He didn’t remember seeing me a couple months prior and when I reminded him of that he flipped through my chart and just got angry with me telling me that I just have degenerative disc disease.  I asked him to please look at the MRI because my PCP had mentioned ‘nerve root clumping’ and I was hoping he could explain what that was.  He left the room for maybe a minute and came back to tell me “You don’t have any pinched nerves”.  I asked why the radiologist would write about nerve clumping and his response was ‘I don’t know.”.  I asked if he could prescribe a round of prednisone since it helped so much back in May and he yelled at me “Don’t take that anymore, it isn’t good for this.”  (I have only taken it once and still don’t understand his reaction to my question).  He then ended our appointment (which had lasted all of 5 minutes) by telling me to contact his office if I want the spinal injections.

I left confused and a bit shocked by his temperament, so I went to medical records to get a copy of the MRI report to read for myself.  (I have attached it to this email).  It mentions arachnoiditis as a possibility and after doing some research I see you are/were a specialist for that.  I am hoping you might have time to look over my MRI report and images and let me know what next steps I should take.  Perhaps a different kind of specialist than an orthopedic doctor?   Advice as to whether the radiologists report is all wrong (like the ortho I saw implied)?

Sincerely, E

Answer:

Dear E,

First, your story is “oh so typical” today regarding the disease, “arachnoiditis” (ARC).  This disease is emerging in the population primarily because common spinal condition such as chronic disc herniation, arthritis, osteoporosis, stenosis, etc. can develop into ARC.  If these chronic conditions go on long-enough they may cause friction and pressure on the nerve roots and arachnoid covering in the lumbar and sacral spine regions.  Your radiologist is “right up-to-date” as he recognized the cardinal sign of ARC on an MRI – nerve root clumping.

It is critical for you to know that prednisone not only helped you, but it also helps confirm the diagnosis of ARC.  The root cause of ARC is neuroinflammation.  Another course of prednisone is certainly in order, and a low dose 3 days a week may be very preventive in your case.  Prednisone isn’t quite as consistent as methylprednisolone, but they are both corticosteroids and on our recommended treatment list.

My advice is to avoid epidural injections when you already have ARC.  They could worsen your situation.  Your doctor’s behavior is common but becoming less so, as doctors get over the fright of ARC.  They have been led to believe the erroneous information that ARC is always doctor-caused, hopeless, and untreatable.  These are outdated beliefs.

Where you go from here is flexible as long as you get started on some agents that control neuroinflammation and others that provide neuroprotection and neuroregeneration. We can review your MRI and give you some recommendations.

Best wishes,

Forest Tennant

Hello, My name is M and I have worked as a surgical technician for the last 14 years. I was Dx with AA in 2016. At that time I was having chronic low grade pain and some leg weakness. My symptoms have now progressed and I have episodes of severe pain and cannot walk without assistance. The specialist that I waited 6 months to see said she really did not know much and told me that I was young and healthy and to get over it. I am now starting to have bladder and bowel incontinence and my episodes of severity, depression, hot flashes, and dizziness seem to be coming more frequently. My primary care has tried to take over my care since I told her what happened with the specialist but she is shooting in the dark! I need to give her some more info so that if there is treatment we can get going in that direction. PLEASE HELP!!

Best Regards, M

Answer:

Dear M,

Unfortunately, you demonstrate a message that all persons with AA or suspected AA must hear and fully understand.  AA is a neuroinflammatory disease. Once neuroinflammation occurs it may take 3 different pathways:

  1. resolve;
  2. continue at a low manageable level;
  3. progress or worsen at an unpredictable rate.

AA has another “ugly” trait.  It may go into remissions and exacerbations for no apparent reason.

Let’s get started.  Our No. 1 goal is to stop the progression. I recommend you go to your local health food store and get curcumin/turmeric (750 to 900 mg twice a day) and pregnenolone 100 mg a day.  These 2 agents will protect you while you educate yourself and enlist your doctor’s help.  Our protocols are attached, and our website has lots of education materials provided as a public service.

Ask your doctor to start a therapeutic trial with either methylprednisolone (Medrol® 6-day dose pak) followed by ketorolac for 2 days.

Frankly the protocol to treat AA is medically quite simple and it is rapidly being learned by primary care MD’s and NP’s most everywhere.  We can arrange for specialty consultation in California if necessary.

Let us know your progress.

Best wishes always, Forest Tennant

Dr. Tennant,

I am a nurse practitioner. I just watched Dr. Tennant’s videos on YouTube on Arachnoiditis. I was wondering if there are any resources on treating arachnoiditis through neurohormones? I have a patient who is struggling with terrible pain due to this condition and I was trying to find new ideas. I happened onto the videos on YouTube while searching the condition.

Thank you in advance, P, APN-FNP 

Answer:

Dear P,

I’m very pleased to receive your note.  Today, adhesive arachnoiditis (AA) is common enough that NP’s and MD’s in rural areas will have cases.  As of yet the emergence of AA as a significant clinical problem hasn’t generated specialists, but I suspect that day will come.  The purpose of our new “Arachnoiditis Research and Education Project” is to help practitioners and patients everywhere tackle this frustrating disease.

First, we are rapidly as possible developing materials to help.  You can find our bulletins, letters, and handbooks on our websites.  I’m attaching the current protocol which we use but is not on the website.

In dealing with AA, the first clinical rule is to understand that AA is a neuroinflammatory condition, and its control is paramount to some relief and recovery.  Attached are recent bulletins on:

  1. Hormone profile;
  2. Therapeutic trials with ketorolac and methylprednisolone;
  3. 10 protocol components.

Most NP’s and MD’s cringe at the thought that severe AA patients will likely have to maintain on low dose ketorolac and methylprednisolone.  Beside corticoids, other hormones that promote neuroregeneration and pain relief are almost essential. Included here are high pregnenolone and DHEA.  Human chorionic gonadotropin (HCG) and nandrolone are great helps to many AA patients.

In closing let me say that I’ve found great personal satisfaction in helping these poorly understood, desperate patients.

Best wishes always, Forest Tennant

Good evening Dr Tennant,

~ 13 years ago, at a medical pain meeting, I approached you for additional information about hormones and pain.   I was seeking answers. After decades it was clear that pain treatment was missing something big.  (other than a diagnosis, pain being the symptom).

Because of your specialty you looked outside the box.   I have a small practice for patients who have failed most common procedures and treatments.  Since that day I have treated many patients with the information you provide, and I think you would be pleased at some of the successes.

I knew that persistent pain seems to overwhelm the neuroendocrine system:  deplete GABA, over-stimulate the feedback systems, etc.  I also know that opiates and other adjunctive medication for a pain syndrome does much the same, with more significant psychological and social issues.  I am still looking for solutions. Your bulletins have been invaluable

Please continue the good work.  If you ever teach a seminar, class, or provide advanced information, I would appreciate any direction you would give. My practice is small, and I am in the last third of my career.

Dr. C

Answer:

Dear Dr. C,

Thanks for your kind and most welcome note. I wish all practicing physicians understood intractable, severe pain as do you.

To me the most critical basic science research of the past decade which explains, and guides treatment of the severe intractable pain patient are:

  1. severe, constant, centralized intractable pain is caused by activated glial cells and neuroinflammation;
  2. the CNS uses specific hormones (progesterone, pregnenolone, and HCG) to protect neurons and promote neurogenesis.

My approach to treating severe intractable pain is to control neuroinflammation, promote neurogenesis, and provide symptomatic pain relief with opioids as a last resort. I’m big on low dose naltrexone, oxytocin, ketamine, ad PEA (palmitoylethanolamide).

Incidentally, where are you located, and would you accept a referral from me? I’m attaching the medical and self-help protocols I usually recommend.

I’ll keep sending material.

Best wishes always,

Forest Tennant

Dr. Tennant,

Is there any connection between my arachnoiditis and severe leg cramps which I have been experiencing for about a month?

Thanks for all your help, P

Answer:

Dear P,

Yes, leg cramps are typical. There is no sure way to eliminate them, but make sure you rub your spine with a magnet and copper each day.  The drug, acetazolamide (125-250 mg) is worth trying for two weeks.

I’m sending you our medical and self-help protocols.  Make sure you are taking neuroinflammation and neuroregeneration agents.

Best wishes always, Forest Tennant

Hello Dr. Tennant,

I wanted to let you know that I have been following your updates on research into Arachnoiditis through your email bulletins and through the podcasts that you did with Louise Charbonneau (Facebook / ArachnoiditisCanada.com).

I am so pleased that you are still researching and learning new insights into how to better treat AA.

The last time I saw you in your office in April I was able to walk perhaps 3.0km to 3.25 km a day.  As of July, I have been able to walk 4.9 km a day and in August I have been averaging slightly over 5.5 km a day so far.  Over all I feel better, there is no question about that.  I am more active than I was before I started your protocol in January 2018.  So, it has been 7 months now since I first saw you in your West Covina office, and I feel I have made definite progress.  I still have my ups & downs but the downs don’t seem to drag on for weeks like they used to – I usually recover in 2-4 days, which is a tremendous improvement compared less than a year ago.

I have attached a table that shows exactly what I am taking (based on your protocol).  Would it be possible to review and let me know if you feel the dosages are correct for everything or would you adjust anything?

We are so grateful every day that I was lucky enough to have been your patient.  It was only for a short period of time, but it was all that I needed to get me on the right path of doing what is necessary to reduce the neuro inflammation and neuro degeneration.  I say to my wife many times “Dr. Tennant is my hero!!!”.

We wish you and Miriam the very best in your new journey as a research doctor, and we hope there are many receptive doctors out there who are willing to listen to you.

Many thanks and best wishes always, A

Answer:

Dear A,

I’m delighted you are making progress.  You should continue your same protocol.

I do have something new that I firmly believe should be tried by every AA patient.  It is pure adrenal gland products.  These products contain all the natural hormones (pregnenolone, cortisol, testosterone, progesterone, estradiol, DHEA) that an AA patient needs.  You can purchase a month supply for $10-15.  They are now available in health food stores.  Two products I recommend are “Adrenal Caps” and “Raw Adrenal”.  Instructions are on the bottle.

You should try pure adrenal for a month to see if you reduce pain and fatigue.

Best wishes always, Forest Tennant

Dr. Tennant,

Which specialist should have the closest knowledge to deal with adhesive arachnoiditis? Rheumatologist, neurologist etc. Should I use an independent medical examiner to get diagnosis?  He’s a neuroradiologist.

Thanks, D

Answer:

Dear D,

Your question is a good one. At this time no specialty has adopted the disease.  I do hope that rheumatology or neurology adopt it as an official part of their specialty.  I suspect neurology is most likely, but most neurologists don’t like to use hormone therapies which are essential for AA.

Also, AA is now so common that every MD and NP will have to learn the fundamentals of its treatment. Until such time MD’s and NP’s will have to “self-select” because of interest.

Best wishes,

Forest Tennant

Hi Dr. Tennant!!

I have had two stem cell treatments in the last 18 months for arachnoiditis. 11 days after my first (adipose) stem cells I dropped my 900mg gabapentin (only prescription drug) and I felt almost normal 10 months later. Minimal pain, even when active. But then I played full-speed basketball several times. HUGE mistake that sent me back to gabapentin as I progressed to having burning feet and zapping legs. Prior to that was just torso burning.

So, I did another round at a cheaper clinic that basically just took bone marrow from my hip and infused it. 9 days later, I was back off gabapentin. As long as I don’t overdo it, I have relatively little pain, but I do have incredible pressure in my tailbone, typical I know. But that seems not to be touched by stem cells…

Two questions:

  1. Do you think after 4 months post-stem cell infusion, I should hesitate to use steroids or NSAID to knock down the inflammation in my tailbone, or might that be unwise? My stem doctor seems to feel it’s OK to do that, but they really don’t have a lot of experience with arach.
  2. Why do you not encourage patients to try stem cells?

Thank you!! B

Answer:

Dear B,

Your experience with stem cell treatment is most encouraging. You should, however, remain on low dose methylprednisolone or dexamethasone.  A good natural alternative to steroids and NSAIDS is adrenal extract.  This is pure adrenal tissue and it is much safer and does what steroids do.  It will be very compatible with your stem cell treatments.  Two trade names available in health food stores are “Adrenal Caps” and “Raw Adrenal”.  Make sure the label says the product contains adrenal tissue (usually bovine).

Let me know how your future treatment works.

Best wishes,

Forest Tennant

Hi Dr. Tennant, On our support group today, one of the group responded to a post about stem cell treatments indicating that her stem cell treatment actually made her condition worse.  Don’t know if she was a patient or not, but if not, I could probably get her contact information for you, or have her give you a call.  I’ve seen similar posts before, but never kept track of who was posting them.  Are you interested in more negative experiences re: stem cells? Thanks, J

Answer:

Dear J,

I’m extremely interested in stem cell results. I know that there is high hopes for it, but I am skeptical that stem cells can help every patient with AA.  Before making any final conclusions, we need to hear the “good, bad, and the ugly” about stem cell treatment.

Thanks,

Forest Tennant

Dear Dr Tennant, I just read your new bulletin and am so pleased! You must have read about the Laminins article I sent you. I have been doing quite a bit of research on the benefits of Laminins. Would you like me to send you more info on the scientific research? I will be going in for my operation September 13th for the new Nervo HF-10 spinal cord stimulator. Thankfully my Pain Specialist and the Neuro Surgeon listened to my request of keeping the Leads away from my lower lumbar and up in the thoracic area. Please say hello to Miriam for me, I keep you two in my prayers and ask God to keep you safe and healthy. Love Your Friend, D

Answer:

Dear D,

Keep sending me your information. Yes, I not only read your information, but have checked laminins out.  Could be a real addition.  I’ve got some other new things I’m trying.  As soon as you get your stimulator in place, let me know.  You should keep trying new ideas.

Best wishes always,

Forest Tennant

Dr. Tennant,

I wanted to comment on the stem cell bulletin you sent us as our pain management Dr has gone from a regular practice to only stem cells. We were told that because my daughter is highly allergic to some things we were told NOT to consider it.  When a person is ill in many different ways as she is, how do we know that the stem cells that are being given to her are HEALTHY?

Why take a chance? B

Answer:

Dear B,

Your concern is valid. Stem cells should be viewed as a last resort after the standard protocol for neuroinflammation, neuroregeneration, and pain control fails to provide comfort, activity, function, and a quality of life.

Best wishes,

Forest Tennant

Hello Dr Forest Tennant,

I hope you can give me some advice as THE arachnoiditis expert.

When a person has AA, is it always visible at the EMG (electromyography) test? Or is this test useful to see how severe the AA is? Or to see if the disease is progressing?

Thank you very much for helping people like us…

(I am 2 years on your protocol and it feels like it is stable, Thank you!)

If you cannot answer me, thanks anyway for all the years you helped people like me.

JF, Belgium.

Answer:

Dear J,

An EMG test may be normal in AA.  If it is abnormal, you are correct when you say is can be a serial tool to determine if the disease is progressive or improving. For example, if it shows improved neurologic function, you can assume you are controlling the disease.

Best wishes always, Forest Tennant

Hi Dr. Tennant,

I wanted to let you know how I am doing now that I am back in Canada.

The good news is that my doctor in Toronto has agreed to continue to treat me per your protocol – a very big relief for me!

I am currently on the following medications per your protocol:

Ketorolac injection 30 mg 3X a week

Methlyprednisolone 4 mg 3X a week

Medroxyprogeterone 10 mg crushed up as a cream and applied 3X a week

HCG 500 IU 3X a week

Pregnenolone 30 mg 4X a week

Acetazolamide 250 mg 3X a week

And as before I am still on the following:

Oxycodone HCl  20 mg.  3X daily

Gabapentin 300 mg 3X daily

Lisinopril/Hydrochlorothiazide 10 mg / 12.5 mg (1X daily)

Zopiclone 7 mg 1X daily

We are able to get all of the medications here except the HCG troche. (although some of the drug prices here especially for the Ketorolac are much higher than USA prices) We have found a compounding pharmacy in Toronto that offers sublingual HCG in 500 IU doses.  Do you think the sublingual HCG would be as effective as the troche?

Also, I wanted to let you know that I really am starting to feel better lately.  I honestly believe that your treatment is working.  I am able do to more things during the day and be more active lately than I have been for quite some time, perhaps better than I have been since my surgery in January 2017.  So, I am really pleased about that!  And I am faithfully following your protocol as you have said it takes time.

Best wishes, A & L

Answer:

Dear A,

I’m delighted that you are doing well.  Sublingual HCG may be superior to a troche.  Give it a try.

Best wishes always, Forest Tennant

Dr. Tennant,

I have suspected arachnoiditis after an obstetric epidural but I do not have severe pain. I have positional headaches and neuro symptoms and was recommended to try a blood patch to improve positional headaches. I’m afraid of the possibility of this worsening any issues if I do in fact have arachnoiditis. My main pain is between my shoulder blades when I bend my chin to chest it feels like something is pulling: along with generalized occasional warm/burning skin in areas, twitching, numbness and tingling. I sent my MRIs to you a while back and you said there was some inflammation of cauda equina nerve roots which couldn’t have been early stages of arachnoiditis. I do currently feel burning in buttocks after sitting on a cold toilet seat (sensation of cold sometimes causes a lingering slight burning sensation.) What would you advise about trying an epidural blood patch to seal a possible slow/ intermittent leak from the epidural for childbirth and from an LP I had two months afterwards (which causes a post dural puncture headache and I was treated with a blood patch that seemed to work for a while? Thanks, CS

Answer:

Dear C,

I do not recommend a blood patch as several weeks have elapsed since you may have sustained a leak.

Based on your symptoms, I believe you are very likely developing arachnoiditis.  Furthermore, you might benefit from what is called a “therapeutic trial”. In this procedure your physician can give you the medications that we usually give for arachnoiditis.

Your physician can give you a trial of Medrol, ketorolac, and pregnenolone.  If you improve with it, you have confirmed a diagnosis of arachnoiditis as well as discovered a regimen from which you will benefit.

Let me know what happens.

Best wishes always, Forest Tennant

Hello Dr. Tennant,

I have been following your protocol since May, 2017.

I have been doing really well physically. My pain is minimal. I am actually able to lead a near-normal life, doing many of the things I used to enjoy. I am just not quite as physically active as I used to be.

My current symptoms include:

  1. very mild, occasional fascinations in my arms and legs
  2. occasional mild vibrating within the spine usually brought on by lots of physical activity)
  3. very slight occasional discomfort in the sacrum area
  4. slight tingling and numbness in the feet
  5. I do still see signs of body-wide inflammation—redness of the skin on arms, shoulders, back and buttock. This redness is painless.
  • Do you feel I should stay on your full protocol? If so, is it something I should follow for life?
  • Or, do you feel that I may at some point be able to drop some of the meds I’m taking? If so, how long do you feel I should continue on my current protocol?

I’ve attached a pdf of all meds and supplements for your review. Some have been prescribed by you, while others are prescribed by my naturopathic Dr.

I’m hoping you have the time to answer my questions, T

Answer:

Dear T,

Your questions are very pertinent and important.  At this time, I think any patient who has visible nerve clumping and adhesions on their MRI should remain on at least one or two neuroinflammatory agents until all pain is gone.  They do not have to be taken every day.  For example, you may wish to take ketorolac or methylprednisolone on only 2 days a week.  Another example is curcumin and serrapeptase, 3 days a week.  Also, I believe you should be on one of the neurogenic (nerve growth) hormonal agents 2-3 times a week (e.g. pregnenolone, HCG, nandrolone).

Based on your symptoms you probably have the autoimmune disorder that sometimes accompanies AA.  Given your situation, I wouldn’t try to go without some medications to keep neuroinflammation under control.

Best wishes always, Forest Tennant

Hello,

I was wondering if you would have any recommendations for a 10-year-old boy with arachnoiditis. We just discovered the arachnoiditis on his latest MRI. But his doctors say it is normal, just like all our other findings. He has never had any surgeries of the spine. He does have quite a few other abnormalities such as two spinal arachnoid cysts, congenital fusion of c2 and 3, spondylosis, bulging disc, etc. Thank you for your time.

K

Answer:

Dear K,

My first question about your 10-year-old boy is whether he has symptoms of arachnoiditis.  Attached are symptom questionnaires.  Even though a person may have clumping of nerve roots on their MRI, they can’t be considered to have arachnoiditis unless they have symptoms.

Does your boy have Ehlers-Danlos Syndrome?  It sounds like he does.  If your boy proves to have arachnoiditis, he will need to be in treatment even though he is only 10.

Let me know if he has the symptoms of clinical arachnoiditis.  I will be most interested to know if he has pain, bladder/urination difficulty, or weak legs.

Best wishes always, Forest Tennant

Dr. Tennant,

I have had an unusually bad pain month so went into talk to my pain clinic today about a strategy – figuring of course their job is to help with pain. This is the ONLY pain clinic in my city that does pills – all the rest only do shots (which are not useful for my type of pain). I was just told over and over my hands are tied – the CDC released new guidelines. It’s the CDC, not me. And they mentioned the word family doctor.

So I googled the guidelines….since I am a researcher. And read them. They are targeted directly at PCPs – not pain clinics. So why on earth is my pain clinic trying to use them as an excuse for not helping when I have an extra bad flare up?

Just curious. I left politely telling them that they are choosing as pain doctors not to help me with my pain….but polite enough that I wouldn’t get kicked out since they are the only option in town (though maybe going to a PCP would be better given I hate this place anyway). But I am curious why a pain management clinic would use CDC guidelines.

Thoughts? A

Answer:

Dear A,

Why isn’t the pain clinic prescribing what you need?  In my opinion the pain clinic you reference has likely been warned by their malpractice carrier, local hospital, or other sources that they have far too much legal liability to prescribe above CDC guidelines from government agencies.  Today I recommend that pain patients learn how to combine low dose opioids (e.g. tramadol and hydrocodone) with non-opioid analgesics and select hormones to keep your opioid dose low while getting good pain relief.

Best wishes always, Forest Tennant

Update A:

Dear Dr. Tennant,

1) Will you please put me on all of your update mailing lists?

2) Dosage question. I’m curious what dose you would start with on kratom. I have never tried it but ordered a red and green strain from Kratom Crazy.  I have been reading some of your March to 90 materials with interest. Right now, I am taking 120 mg of MS Contin a day and 75 mg of Oxy IR a day. I get these from my primary care doctor who also works for an osteopathic university. While I believe they are very helpful in treating my pain it seems prudent to be prepared to reduce my dose if the govt makes it necessary.

4) It also seems prudent to have an MDMA agent. I’m working on getting a trial of oral ketamine. Until that is approved in thinking the ingredient in delay makes the most sense. If I get this in immediate release what dose would make sense for daily use?  A

Answer:

Dear A,

Thanks so much for the update.  At this time, I know of no recommended Kratom dosage since it is not a standard agent available in health food stores. It is one of the non-opioids, however, know that many arachnoiditis patients find that it gives them pain relief.  Ketamine works quite well for about 75% of patients who take it.  We start with a 25 mg troche and prescribe it for pain flares.  We recommend you try it before resorting to an opioid.  Almost all communities over about 50,000 people now have a compounding pharmacy that can make ketamine troches.

Best wishes always, Forest Tennant

Update A:

Thank you. I’m waiting for my new doc to research ketamine. The doc that was managing my pain before (and was wonderful) was promoted to dean and is no longer seeing patients. He transitioned me to his partner who wanted to do his own research on ketamine before prescribing. I will be patient with him and give him time as he willingly took over my 200 MME from his partner without a hassle. So far at least.

Biggest tip I have is the Low-level light therapy. I sent you the name of the device I use. I’ll forward you all a good research article shortly. Helps greatly with inflammation and heals cells and nerves.

A

Update A:

Here’s the link to one study on the low-level light. I have the Regenesis 3 on long term loan. They are starting to use this after joint replacements as well.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5436183/

A

Hello Dr. Tennant,

I went through with the epidural blood patch and I highly regret it. I was desperate for relief and I made the wrong choice. I have burning in my lower back and legs. I’m scared. The hospital gave me IV Solumedrol for day 1 and prednisone 50mg for day 2 3 and 4. I’m scared. I will never have another needle in my spine after this. I should have trusted your judgement even though all other doctors dismissed arachnoiditis. Please tell me if there is anything else I can do in these early stages to minimize damage. Thank you. CS

Answer:

Dear C,

I’m very sorry the blood patch has caused an apparent acute flare of arachnoiditis.   To gain some recovery you will need 3 to 5 days of injectable ketorolac.  I also recommend pregnenolone, 100 to 200 mg a day for a week.

Above all, keep walking and stretching your legs.  Even if you have to force yourself to do so.

After a week and you have finished emergency treatment, you should go on our regular medical treatment protocol.  I’m making some minor revisions, but I will send it if you wish.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

What are the symptoms of cervical or neck arachnoiditis?

Thank you, C

Answer:

Dear C,

Here are some of the common symptoms of cervical or neck arachnoiditis.

1. Severe constant pain that radiates into the scalp.
2. Difficulty getting to sleep.
3. Pain increases when head is flexed-usually backward.
4. Weakness and/or pain in an arm that tends to come and go.
5. Poor response to neuropathic agents (e.g. gabapentin, pregabalin (Lyrica); muscle relaxants, antidepressants, and anti-inflammatory drugs).

Arachnoiditis of the neck usually covers a small area with a poor blood supply. Consequently, the most potent neuroinflammatory and pain relief measures must be used to find relief and reduction of pain.

Best wishes always, Forest Tennant

Dr. Tennant,
I just read Bulletin 19 and am so confused. One year ago during a fusion I had a dural tear and CSF leak at C6-C7. I have Brown Sequard Syndrome and Central Pain Syndrome. In April I was diagnosed with arachnoiditis by pain management when I complained of a shards of glass/blisters on my right foot parasthesia. It was about that time the numbness from Brown Sequard changed to burning (right side only), complicating my pain profile. I do have some achy pain and burning in the lumbar area, but only on the right side (my BSS pain side), left side diffuse weakness but zero pain. I can sit for hours in one position. Have stood over an hour, no pain, just fatigue. Some occasional (few times a week) itching. No urinary issues, bowel only complicated by opioids (Movantik® works). Currently managed by gabapentin (Gralise®) for nerve pain and 2-3 Percocet® daily. I can walk 30 minutes daily and do 90 minutes of PT work and stretching daily with no pain when I move. Neck is not fully fused. Lumbar and thoracic MRI in May reportedly do not show Arachnoiditis. Insurance will not approve a cervical MRI. I’m trying to understand if I do indeed have ARC, as I need to make some life changes if so. It’s a big diagnosis. Having Brown Sequard makes it more difficult as my constant burning pain is the most prevalent symptom, but not one that prevents me from moving as Arachnoiditis might. Would you be willing or able to look at my MRI if I send it? I know you have many requests, I’m not sure how or where to get a proper reading.

With gratitude, L

Answer:

Dear L,

Don’t be too confused.  Unfortunately, Brown Sequard and arachnoiditis may produce similar symptoms.  Brown Sequard often causes arachnoiditis.

First, we will be happy to review you MRI.  Just send images by e-mail or mail the original disc.  If you want it returned, please send a self-addressed stamped envelope and we will return it.

Be clearly advised that the underlying cause of arachnoiditis is neuroinflammation and neurodegeneration.  These two conditions must be simultaneously treated or you run a high risk of further deterioration.  I’m very glad to hear you are walking.  This is the basic arachnoiditis exercise.  Gabapentin and Percocet® are excellent symptomatic pain relievers but you need to treat your underlying cause.

I look forward to hearing from you.

Best wishes always, Forest Tennant

Hello,

I’ve spent several hours reviewing all your websites and I’m so encouraged.  I sent a request to my PCP to get your Medical Protocol available for outpatient medical  practitioners.

She just wrote back one sentence ..after all the info I sent her..i should come out and see you. Am completely devastated over that and the fact my doctor completely blew me off after my paying her almost $10,000 for worthless treatment.

I suffer greatly with what my other doctor diagnosed as brain arachnoiditis. Left sided head and facial pain, ELECTRICAL sensation getting much worse. Disabled, living with elderly parents in IL.  Suffering 24/7 for years.   Just being online was torture.  I was too sick to even phone you even though I tried but couldn’t do it.

Flying out to CA is no small task as I’m sure you can imagine.

I took your patient questionnaire and answered positive to way over 50% of questions. Plus had microvascular surgry for trigeminal neuralgia in 2014 and just realized surgery report says;

“Fair amount of scarring seen with thickened arachnoid. Removed thickened arachnoid & small amount of scarring at base of cranial nerves 9 & 10.” 

No answer from surgeon even now as to why arachnoid is thickened and what caused the scarring.

Please let me know any guidance…any doctors in IL?

Do you still offer the medical protocol for doctors?

Bless you.  I am hopeless yet clinging to my faith, R

Answer:

Dear R,

Don’t give up hope.  Every patient with arachnoiditis can get some help and relief.  To get some relief and recovery it is essential to know that the underlying cause of arachnoiditis is neuroinflammation and neurodegeneration.  There are specific drugs for these 2 conditions, and you need to simultaneously take the specific drugs that target each condition.

I’m attaching our latest handbook plus other information.  Our physician protocol is being updated and will be available next week.  Please review our new websites for information.

Attached is a short questionnaire to see if you may possibly have Ehlers-Danlos Syndrome.

Send us additional information about yourself as our new arachnoiditis education project wants to bring help to all patients.

Best wishes always, Forest Tennant

Dr. Tennant,

My mother had contacted you, for arachnoiditis, and my other pain issues. My doctor prescribed me pain patch. It does not last 72 hours. I was advised to switch to 48 hours. I’m thin, and metabolize quickly, is that common? Thanks for all your help, you are a hero to many people who are fighting for you.

Sincerely, S

Answer:

Dear S,

Thank you for your kind note. The fentanyl patch rarely lasts over 48 hours. Every day I hear from someone who can’t get enough prescribed pain medication. Consequently, I’m encouraging all chronic pain patients to become aware of and knowledgeable about the new natural pain relievers and hormones that will boost the effectiveness of your patch and other prescription medications. For starters, please consider curcumin and pregnenolone. I’m attaching some information. I’m putting you on our “Bulletins List” which will keep you updated.

Best wishes, Forest Tennant