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 & Education Project“.
You may send your questions to firstname.lastname@example.org , fax to 626-919-7497, or mail to:
The Tennant Foundation
Arachnoiditis Research Project
336 1/2 S. Glendora Ave.
West Covina, CA 91790-3043
I am A 58-year-old white female diagnosed with arachnoiditis in 2018. Other than unrelated PTSD and severe IGA deficiency, I am considered healthy. I’m reaching out to you for help in locating a physician local to me that may be familiar with your protocol of treatment for AA.
I have read everything on the Internet that you have written, along with related websites. I’m convinced that I will benefit from treatment although I may have had arachnoiditis for years. I’m told that many of my vertebrae have some sort of damage from a serious accident when I was 10 and five car accidents in my adult life. None of which were my fault fortunately, but I have suffered for years with back pain as a result of the subsequent injuries.
Your research and your work give me hope for my intractable pain and for the possibility of some recovery. Any moments you spend replying to my humble email will be appreciated.
Looking forward to hearing from you, DW
Thanks so much for writing. To get medical help, I recommend you share your diagnosis and some of our materials with your personal physician or nurse practitioner. Many MD’s and NP’s are getting interested in the class of disorders which are called intraspinal canal inflammatory disorders. They are becoming interested because they are widespread in our modern population. Also, rheumatologists are my favorite specialist because they know how to treat inflammation. In particular, most of them know how to prescribe low dose, intermittent corticosteroids which I believe to be essential for adhesive arachnoiditis (AA).
If you can’t immediately access medical help, I recommend you start our self-help protocol. The best non-prescription program I can recommend is adrenal cortex, curcumin, and pregnenolone or DHEA and whatever pain reliever may help. Pregnenolone and DHEA need to be taken in a dosage of about 200 to 250 mg a day. Adrenal Cortex is usually a capsule. Double the maximum dose that is on the label and take it every other day.
Best wishes always,
If I have a started on your protocol of .5mg dexamethasone 3x week and ketorolac 15mg 1x a week as well as taking pregnenolone 100mg, turmeric, estratest-provera compound daily. Do these need to be increased at any time? I have been on these about 5-6 months.
I really like your program including your daily estratest-provera compound. In this past year I have concluded that persons with adhesive arachnoiditis (AA), and particularly those who also have EDS, must be on an intermittent low dose corticosteroid plus one or more anabolic (tissue building) hormones. Unfortunately, intraspinal canal inflammation appears a lot like rheumatoid arthritis. Once inflammation starts, we can control it but we can’t totally cure it.
At your age I recommend a cytokine panel to determine if any of your inflammatory markers are up. A hormone panel of pregnenolone, testosterone, and DHEA will tell you to increase your hormones if any are low. Lastly, you can get a neurotransmitter panel through Life Extension. This is a major, clinical advance because it tells you what neurotransmitters or precursors you need to take. In summary, once you are on a stabilization program, such as yours, laboratory testing is really the way to improve your program and live a better life.
Best wishes always,
Gal from Missouri here again. Just wanted to let you know how much I enjoyed and learned from your webinar. The MRIs were eye-opening. I can see why a CT myelogram does not show the detail.
I am quite confused with my case, though. I hear so many with AA that are having a very hard time with life. Yet, maybe ESP because of your guidelines, I am able to live a fairly normal life. (I almost feel guilty). I am currently training for an event in November, where a group of us will bike and kayak between Key Largo and Key West, Fla. Yes, the training is rigorous, and I cannot do everything, but I can do a lot more than I could have before I met you and started on your guidelines. When one doctor a few months ago said I didn’t have AA, I briefly went off the meds, and quickly deteriorated, so started back with the program.
I guess I want to say thank you for giving me a major part of my life back. I saw my life confined to my house and perhaps a wheelchair. That has been pushed back for a very long time, thanks to you. MJ
Thanks for your kind words. My latest research discovery is that AA is one of about 6 intraspinal canal inflammatory disorders. Especially, chronic cauda equina inflammation disorder may have identical symptoms to AA but not show the typical nerve root clumping and adhesion formation necessary to give an MRI diagnosis of AA. The treatment of these disorders is identical, and our protocol will suffice for each.
Our other recent discovery is that a corticosteroid is almost essential to treat intraspinal canal inflammatory disorders. We recommend a low dose corticosteroid be used on only 2 to 5 days a week to prevent steroid complications. If a physician will not prescribe a low dose of methylprednisolone or dexamethasone a person can obtain adrenal cortex from a health food store without a prescription. A good, general way to take adrenal cortex is to double the maximal dose on the bottle and take the double dose on 2 or 3 days a week. The bottom line is this. Only corticosteroids that cross the blood brain barrier and enter the spinal fluid are the agents that best suppress inflammation that exists inside the spinal canal.
Best wishes always,
Dear Dr. Tennant,
I found a lot of the info on HCG I was looking for except for the specific regimen I could use, thus I still have a few specific questions I hope you can respond to.
Some of my questions are: I noticed many patients on 500 To 3000 Units of hcg per week in 2-3 doses. I don’t know if those 3 days a week are like one day inject, skip a day then inject and skip another day then inject, etc… or, inject 3 days in a row each week?
Also, I plan on starting at low dose and working up, such as: 330 units a day for 3 days per week.
The material says that you can use it indefinitely if you find it relieves your pain, but my question is do I go and take a rest, do I cycle it someway? Do I just go by how I feel and what my hormone tests reveal?
And finally, when following this type of schedule (and not doing the strict Dr. Simmons HCG diet protocol but eating a normal healthy diet), will I gain weight rapidly if I don’t watch my carb, sugar, and fat intake? Rapid weight gain is a side effect if eating those wrong foods while taking HCG injections, so I seek advice on diet while taking HCG for a prolonged time for pain control.
God bless you, SH
Your letter is more than appreciated. HCG is the natural hormone in the body that causes nerve tissue to grow and rebuild if it is damaged. It also raises body levels of thyroid, estradiol, testosterone, and progesterone. Due to its dual action, every person with adhesive arachnoiditis (AA) should be on it. I have had some AA patients with paraparesis to the point they couldn’t walk get out of their wheelchair after several months of HCG. I’ve seen many AA patients stop opioids and regain bladder and sexual capability with HCG. The usual starting dose is 250 to 500 units 3 times a week, but you can vary this to suit your needs.
You are correct when you say you will always have to restrict your carb, sugar, and fat intake. With AA, you need extra protein and collagen in your diet.
My neurologist thinks that if I have AA, that I would be in the hospital. From what I’ve read, this is not true. What can I do?
There are still some physicians who recall the horror-show days of AA from the past. Some still don’t know that AA is one of a spectrum of lumbar-sacral inflammatory disorders. AA can now be diagnosed at an early stage, and that it can be treated by any good medical practitioner. Please show our handbooks and other materials to any party who needs to “catch up”. AA and the other intraspinal canal inflammatory disorders are so common that every medical practitioner must be familiar with them. I believe rheumatologists are on of the best physicians to treat AA since they are expert at treating inflammation. There is a new group of doctors who rightfully call themselves functional specialists. Give them a try. I believe you will be pleasantly surprised.
The rheumatologist seems to be very distressed that I was not being prescribed one of the two steroids that you suggest in your medical protocol. I’m going to bring that up with my primary care doctor.
I believe that all persons with AA must take a periodic, low dose of a corticosteroid to prevent deterioration. The best ones are methylprednisolone or dexamethasone since they cross the blood brain barrier and enter the spinal fluid. If you have EDS a low dose of hydrocortisone 5 to 10mg on 2 to 5 days a week is recommended.
I have members of my group wanting to know if going to a chiropractor is a good idea if you have arachnoiditis?
If a person clearly shows cauda equina nerve root clumping on a contrast, axial MRI, I cannot recommend chiropractic treatment. Also, I cannot recommend hill climbing or weightlifting with over 15 to 20-pound weight. Why? Cauda equina nerve root clumping means that nerve roots are entrapped in a mass of inflammation, adhesions, and scars (fibrosis). In almost all cases some of the clumps are adhered (glued) to the arachnoid-dural covering of the spinal canal. Any significant stretching or pulling on the lower back risks pulling about the mass with entrapped nerve roots. If this occurs severe, permanent pain and neurologic damage may result. Unfortunately, no medical practitioner can be positive they can manipulate, stretch, or massage safely a person with documented clumping of cauda equina nerve roots.
In summary, every person who has suspected or verified AA needs to clearly know if their cauda equina nerve roots are clumped.
I regret my opinion, but I have seen too much tragedy with medical procedures and excessive exercise.
Best wishes always,
Forest Tennant MD, DrPH
Hi Dr. Tennant,
I am happy to report that I am doing exceptionally well on the protocol! I want to share with you that Ketorolac comes in a nasal form called Sprix and can be used for flares. Also, I started intermittent fasting to offset a little weight gain from the prednisone and it has helped tremendously with weight loss, energy, and my sense of well-being.
I have 2 questions:
1 – why does exercise cause my symptoms to return, when normally I am asymptomatic. I would love it if I could return to my pre-arachnoiditis workout routine.
2 – have you had any patients have more children after their diagnosis and how did they do? (without spinal intervention, of course)
Dr. P reviewed my most recent MRI and said the inflammation of the nerve roots is almost indistinguishable! Thank you for your life’s work!
Unfortunately, the development of AA when cauda equina nerve roots are entrapped in an inflammatory, adhesive mass does not permit strenuous exercise. Hiking, running, mountain climbing, cycling, and weightlifting among other strenuous exercises may worsen the condition by pulling apart the mass of entrapped nerve roots. Pregnancy is also a risk as it will require strenuous activity and epidural injections at delivery.
Best wishes always,
I began a regimen based on your bulletins and correspondence. I have AA.
I have had fairly good pain coverage but started on Ketorolac twice a week and pregnenolone daily and I am less fatigued. I feel more energetic! I also, pursued improved CPAP sleep with modern machine with WiFi reports. I found I was still having way too many AHI events. I worked with my sleep Dr. Originally was 43 AHI per hr. Years ago, still 29 until the change and with increased pressure, and a new type of mask. Went from full face to a nasal mask and chin strap, I am having less than 2 AHI events per hour! In just over a 2-month change! All your advice has also helped greatly! For muscle spasms that turned to a regular daily event, I now take a low dose of muscle relaxant a few times a week toward evening. The spasms are under better control. I wear a back brace, if on a long car or plane trip. Use a cane for support when traveling; less falls, less scraped up knees and shins! I have a chair massage pad. I try to walk more. Have pool time when opportunity presents. If I am restless at night, I found a 5mg melatonin every night helps.
I use a McKenzie neck roll inside my neck pillowcase. It gives that neck support on turning.
There are more things I need to do yet, esp. with metal jewelry and rocking, but following your guidelines has been great. I had a bit of problem introducing my needs to my pain Dr. Of over 5 years, so last appt. My husband went back with me and my Dr. wrote the pain break through prescription for me, along with the muscle relaxants and renewed the Ketorolac. I have left the Foundations information with him twice now!
PS. I have documented AA on MRI, since 2011, but fear it has been around much longer. I had my spinal fusion in 1989, and by 1991, I had been diagnosed with FM for severe muscle pain 16/18 positive trigger points by my Rheumatologist. I understand now all those symptoms I had, and still have are probably AA instead.
Thank you for all you and your Foundation do to help people with AA, like me, help themselves and learn how to encourage help from our pain doctors.
I’m delighted to hear that you have made progress despite having AA for many years. I’m attaching a recent article I just published for medical practitioners. Please share it.
Best wishes always,
Forest Tennant MD, DrPH
Dear Dr. Tennant,
Greetings from Vancouver Island.
I am following a patient for functional medicine assessment and care. She has shared your protocol for adhesive arachnoiditis including use of adrenal steroids.
We have begun supplementation of her low DHEA and luteal progesterone deficiency with good tolerance. She, however, is not able to tolerate pregnenolone at a 25 mg oral dosage due to persistent headaches which did not resolve in a two-week trial. We will change to a trans dermal formula of pregnenolone and see if she tolerates this. Topical and vaginal pregnenolone is generally well absorbed as pregnenolone is very lipophilic.
She is taking PEA and following an anti-inflammatory diet with a nutritionist. She has also begun intermittent fasting to reduce inflammation, and for its posited effect on scar tissue through autophagy. I am comfortable supporting her with adrenal HRT for its neuro inflammatory modulation effects. In that process, monitoring downstream metabolites of steroidogenic hormones is a priority as Estradiol and Estrone levels can rise on high doses of pregnenolone and DHEA increasing risk for breast and endometrial hyperplasia / cancers.
Do you have other suggestions about pregnenolone tolerance? Have you seen good results with lower dosage of pregnenolone? Unfortunately, serum pregnenolone is not an available test in British Columbia and so it is not possible to test for physiological range. We will proceed by increasing dose as tolerated and measuring downstream metabolites.
Look forward to hearing any suggestions you might have.
Best to you, C
Thank you for your most informative and positive letters. Your enthusiasm and knowledge about neurohormones have “made my day”. I have found that adhesive arachnoiditis (AA) patients simply don’t get much better without hormonal therapy.
I have found occasional AA patients who can’t tolerate pregnenolone to the point that I don’t force its usage. Its main function I believe is its conversion to progesterone. We have started having some excellent results with medroxyprogesterone 10 mg BID on 2 to 5 days a week. To avoid any possible hormonal complications, I recommend hormones be taken 3 to 5 days a week with skipped days.
Life Extension has begun offering hormone and neurotransmitter panels which persons can obtain without a doctor’s prescription. This, to me, is a great advance in self-care.
We have a bibliography on neurosteroids on our website. A review of some of the studies of their neuroinflammatory suppression and neurogenic attributes is compelling. Lastly, I’m attaching an up-to-date clinical review of AA that I just published. Please keep me posted.
Hello Dr. Tennant,
I’m 19 years old and I had my first beautiful baby girl May 14th but had a traumatic experience. I received the epidural and went numb from the waist down within minutes, causing her heart rate to drop and my blood pressure to drop incredibly low. It stabilized soon later, but when I began to push, her head got stuck in a ring of muscle in my pelvis for two hours, my epidural began wearing off in my hips, but my legs stayed numb. They ended up having to use a vacuum to get her out, and she had some head trauma but now is perfectly healthy. However, my health is declining with no evidence. My left leg numbness never wore off, and I began having numbness in my pelvis and stomach as well. I’m having severe brain fog and difficulty remembering what I’m doing and trouble completing daily tasks. I’ve had a spine and brain MRI, and both were seemingly clear. I feel emotionally and physically numb and I’m just hoping to get some answers.
Please help, SG
Your symptoms sound like you have inflammation in your lower spinal canal. The best-known condition involving lower spinal canal inflammation is adhesive arachnoiditis (AA). Another condition which isn’t recognized by most medical practitioners is called “chronic cauda equina syndrome”. Based on my reviews and research into several hundred cases, I conclude that you can have inflammation of cauda equina nerve roots and/or some of the layers in the arachnoid-dural covering that don’t show on an MRI. The first signs of inflammation on an MRI may be very non-specific and may only consist of some enlargement, displacement, or asymmetry of nerve roots, and these MRI’s will be officially called normal.
What to do about your situation? First, it would be helpful if one of your doctors ordered a sedimentation rate, C-reactive protein, and what is known as a cytokine panel. These are inflammation markers. If any one of these markers is elevated, you have essentially confirmed spinal canal inflammation. I will be pleased to review your MRI as you are a good research subject!
My best recommendation is that one of your doctors prescribe the emergency treatment for suspected and/or potential AA. It consists of a 6-day Medrol Dose Pak, 3 consecutive days of ketorolac, and 5 days of medroxyprogesterone. If you improve on this regimen, you have established the presence of spinal canal inflammation, and have very likely prevented a full-blown case of AA.
I look forward to hearing from you.