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 [email protected], fax to 626-919-7497, or mail to:
The Tennant Foundation
Arachnoiditis Research Project
336-338 S. Glendora Ave.
West Covina, CA 91790-3043
YOUR QUESTIONS AND OUR ANSWERS ARE UPDATED FREQUENTLY
Thank you very very much!! I have two questions on my mind right now.
1. Is low carb generally recommended, or only related to food like wheat/white flour? Because I would like to gain body weight and therefore, I eat high-carb, but mostly only eat whole grains and no white flour.
2. Is heat with AA generally harmful, since it promotes inflammation?
Because I have a far infrared sauna blanket for sweating & detox, which also heats up to 60 degrees and the back is very hot during the 1h session. Or also hot water / bathtub? Or is it individual if heat is bad for AA?
Thank you! JF
If you have normal or low weight and normal glucose and cholesterol blood levels, don’t worry much about carbohydrates and fats. Just make sure you eat some protein and vegetables with each meal. Heat is good for AA. the source – sauna, hot water bottle, heating pad, tub, doesn’t matter. Why is heat so beneficial? It increases blood flow and lymph drainage in the tissues around the spinal canal. AA is named because it affects the middle or inner layer of the spinal canal covering (meninges) but, in reality, the inflammation of AA actually spreads through the outer layer (dura) and into the surrounding tissues of the spinal canal. Heat brings healing. Every person with AA should attempt heat on a regular basis for enhanced healing.
Best wishes always,
I am trying to get medically exempted from taking the Covid vaccine to continue going to classes at my university because I heard of the effects that it has on A. I was wondering if you would be able to sign my exemption form. Thank you for your tie and all that you do.
The only one who can sign your exemption is your personal physician licensed in the state in which you live.
Best wishes, Forest Tennant
Did Elvis have adhesive arachnoiditis?
I firmly believe Elvis had AA, but he died before the MRI was even invented so I cannot confirm my belief. He had a genetic connective tissue/collagen disorder of the EDS class as well as severe back pain and an x ray that showed disc protrusion at L4-L5. This combination is the usual situation that leads to cauda equina and arachnoid inflammation followed by AA. In addition, he responded to injections of a corticosteroid and began to have some leg weakness near the end of his life.
Thanks for the inquiry.
I was diagnosed with AA last year by Dr Tennant. I’ve trying to follow Dr Tennant’s protocol and now that I have access to corticosteroids, I discover I am allergic to them. Can this medication be replaced by any other medication to avoid the progression of the disease?
I am really concerned about this matter, and I would appreciate so much an answer
Thank you so much, MV
Unfortunately, some persons with autoimmunity from AA or EDS are sensitive to synthetic corticosteroids. Be clearly advised. These 3 drugs have been the most consistent agents for AA: (1) low dose naltrexone, (2) ketorolac, (3) methylprednisolone. I firmly believe that someone with MRI-documented AA should take 2 of the 3 if not all 3. All three are recommended to be taken on a low dose, intermittent basis
Most persons who are sensitive or allergic to methylprednisolone can take a periodic injection, because the sensitivity or allergic reaction is a stomach-intestine reaction, triggered by oral ingestion.
I believe that every person with MRI-documented AA should take a whole adrenal supplement in the afternoon or evening (examples: adrenal cortex, raw adrenal, adrenalplex). If you can’t take corticosteroids, you will need blood tests for hormones, inflammation markers, and glucose-cholesterol. Any deficiencies will require medication. You need to review our handbook and physical measures.
In closing, I believe you and your physician and family need to review my thoughts particularly the suggestion of a monthly or bi-monthly injection of methylprednisolone.
Best wishes always,
I am following up on the email I sent on August 6. My husband is still in the hospital. Any thoughts on the methadone vs. fentanyl for arachnoiditis pain? He is currently on 15mg methadone 4x daily in the hospital.
Thank you. I appreciate your input.
If a person with AA develops the complication of intractable pain syndrome with severe, constant “24/7” pain, methadone is usually the superior treatment. Fentanyl is too short-acting and many persons who start a fentanyl patch find it initially very helpful, but after a few weeks or months it only provides unstable, erratic pain relief. Long term a methadone dose of 30 to 80 mg a day with a short-acting opioid for flare or breakthrough pain has been the long-time standard for intractable pain. Be clearly advised. I have personally seen better, long-term outcomes with methadone than any other opioid.
Do you have research and/or information on Restless Leg Syndrome and AA? I haven’t slept in months between the AA and the RLS. It’s getting so that I can’t tell the difference. My legs just throb, and nothing seems to help. I’ve tried muscle relaxants and ended up in the emergency room because my entire body was twitching and jumping. I took a Percocet® tonight as a final effort to stop the pain and sleep. I’m wide awake and in pain.
I’d love some guidance. I’ve read everything I could find by the Tennant Foundation and attempt to follow the teachings.
I’m very exasperated, SF
I believe there is a connection between restless leg syndrome (RLS) and AA. The inflammatory, intraspinal canal mass of AA can entrap a number of cauda equina nerve roots which can produce a wide variety of leg symptoms. My best results in treating RLS has been with benzodiazepines (Valium®, Xanax®, Ativan®) and/or GABA derivatives. You can obtain a 750 mg oral GABA from a health food store or 100 mg sublingual (under-the-tongue). A double or triple dose at bedtime is worth trying. Please let me know your experiences, as I would like to learn if anyone is getting results.
Best wishes always,
Hi Dr Tennant,
Thanks for writing me back. Right now, I am completely down on my luck but trying to look up. The Toradol® I am taking since 2011 has now caused 4 ulcers on the bottom of my stomach. I am looking for dexamethasone. I will get it but I’m worried about irritability or agitation. It should be the least of my worries I suppose.
For the first time in over five years, I stopped the Toradol® cold, and walking became extremely difficult and pain flares got as bad as they can get. I reinstituted it for now.
I woke up this morning to a massive cramp in my calves where they were not before. I could only cry out to God. Just taking it away for 36 hours has caused something to happen. Unfortunately, I am also having gallbladder attacks. They are very painful. It became apparent in a short period of time how important Toradol® is to me. If I wasn’t getting these gallbladder attacks, I may be able to pull Toradol® away but this is not my reality. Toradol treats gallbladder attacks. Any thoughts?
The reason the steroid concerns me is because of psychological conditions I have along with neuropsychiatric conditions. Thank you…………………..DK
All the drugs that effectively treat AA have risks. One must accept some risk to get some benefits. In cases of MRI-documented AA, I believe one has to take either Toradol® or one of these two corticosteroids (methylprednisolone or dexamethasone). Once you heal your ulcer you can probably safely use Toradol® by injection once a week.
Here are some non-prescription agents that may help you keep Toradol® or dexamethasone at a low, intermittent dose: ashwagandha, andrographis, whole adrenal gland (take in late afternoon)
Would your doctor give you injections in his office after your ulcers heal? You probably can’t’ just quit Toradol?
Best wishes always,
I suffer from adhesive arachnoiditis, muscle spasms, tingling, numbness, inflammation, and severe pain. About six months ago I started having weakness of the legs and fatigued. After three class 1V laser treatment I no longer have weakness of the legs or fatigue. I am in the process of starting a Physiotherapy exercise program. I am determined not to let this disease beat me.
I’m delighted to hear your success with laser. My delight is because there is the general belief that laser may not penetrate deep enough to reach the spinal canal. I firmly believe that persons with MRI-documented AA should attempt electromagnetic therapies which are: (1) laser, (2) infrared, (3) radio wave frequency. There are now devices called “PEMF” which stands for “pulsed electromagnetic frequency”. Electromagnetic therapy usually enhances a 3-component medical protocol. Please let us know about your successes.
Best wishes always,
I had emailed a quick thank you with a donation to your Foundation but wanted to send you a more personalized one, too. Thank you so much for reviewing my MRI and sending me your feedback! You have given me hope and shown me a good plan to get better. My doctor prescribed a series of two Medrol® packs, and I am improving. She was very appreciative of the PDFs I forwarded her from your email and plans to share them other patients. I am so grateful that you are continuing to help people.
I’m not able to do very much right now, but I would love to volunteer with your organization if there’s anything I could do to help you.
Thank you for your help! MT
The best thing an AA patient can do is inform their physician, pharmacist, and other parties in their community, that AA exists and that it can be effectively treated. You can easily help. Our Foundation has just developed a brochure so that a volunteer, like you, can simply drop some off at local physicians, pharmacists, chiropractors, and physical therapists. Just send us your address and we will send you the brochures.
Best wishes always,
Dear Dr. Tennant,
You very kindly read, and reported on, an MRI disc that I sent you a few years ago.
Based on one of the bulletins you sent out recently I asked to have an anti-nuclear antibody test, among other blood tests. It has come back positive with the advice to forward the result to “my consultant”! That’s you!!! They are mainly new young part-time doctors at the practice and one of them will have read your recommendations and made an assumption! The result is 1:80 speckled. Without knowing me, what does this imply please, and should I ask to see a specialist in the UK? Also, my immunoglobulins are irregular, and have been for years – but stable. IgA 0.6; IgG 4.9; IgM 3.9 (raised lambda). I am also pre-diabetic at 42 mmol/ mol. I have raised cholesterol.
Best wishes, and thank you for your help and advice, FW
Persons with adhesive arachnoiditis (AA) frequently develop autoimmunity complications. It is common in persons with AA to have a low, positive ANA titer and altered immunoglobulins. Your abnormal tests call for a more aggressive anti-inflammation measures in your treatment protocol. Spinal fluid flow exercises may keep autoimmunity from progressing Also, you will want to take some dietary measures to control your cholesterol and glucose.
Best wishes always,