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 veractinc@msn.com , 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

 

Dear Dr. Tennant,

I am a 51-year old male in Ontario, Canada who in March of 2020 diagnosed myself with aa after coming across an article about it. My neurologist and neuroradiologist confirmed my assessment. However, in Canada the resources are very limited. So, in 2000 I had a fall and in 2002 another construction accident. Then in 2016 because I had been on opioid therapy I dove into a pool and damaged my cervical spine. In 2017 I fell again 10 feet landing on my feet damaging my thoracic spine. This is my Question If my spinal cord is adhered to my arachnoid layer almost to the dural sack, even though it’s not separate nerves like the cauda equina , but is definitely interfering with the spinal fluid flow, would this be considered AA. If yes, I would like to say it occurs in my cervical, thoracic, lumber, sacral spine regions according to my MRI’s. If this is an interesting case and you would like to view my MRI’s I would be more than happy to send you access. Let me know.

Kind Regards, SM

ANSWER

Dear SM,

Your note suggests that you have an extremely rare case. Adhesive arachnoiditis is almost totally (about 99% of the time) in the lumbar-sacral spine because this is the spinal area that contains the cauda equina nerve roots. You are correct when you say that AA can be
in the thoracic and cervical spines, but it means the spinal cord must be adhered to the arachnoid-dural covering by adhesions. Yes, I would very much like to see your MRI’s as you are, indeed, a research study all by yourself. Our treatment recommendations are the same regardless of location of AA. I look forward to seeing your MRI’s.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

My congestion is still horrible and getting worse every evening especially and, in the mornings, and afternoon as well in the evening, just terrible. No ENT or allergist has a clue about how to solve this. Please give me some ideas if you have them because I’m sure it must be related to my disease. There is also a possibility I am allergic to milk according to my last hospitalization notes. Can I take colostrum safely? Thank you for your response. I’m hoping and praying that I can keep myself together and not die before I get hold of this disease. Take good care of yourself, B

ANSWER

Dear B,

All persons who have AA and/or IPS need to be on a basic medical protocol. I’m attaching our short-version medical protocol. The best stating treatment is a combination of low dose naltrexone and low dose, intermittent ketorolac, and a central acting corticosteroid (dexamethasone or methylprednisolone). We have learned that persons who are not on this basic, best protocol will be “unstable” and have a variety of untold symptoms including excess congestion, food sensitivities, and, at some point, tolerance to opioids and other medications.

I’m attaching a medication list. Return it to me and I’ll have some ideas.

Best wishes,
Forest Tennant

Dr. Tennant,

I am wondering if you have seen people be able to return to work. I had my arachnoiditis causing spinal tap 3 months before starting law school- which has been my lifelong dream. Needless to say, I am absolutely devastated that a ‘routine and benign’ lumbar puncture has taken so much from me. I have also developed a small syrinx because of this LP. My question is two parts 1) Do some people live somewhat normal lives with this disease? And have you seen people return to function? 2) Any idea how a LP could cause a cervical syrinx? I do not have Chiari or anything of the sort. God bless and thank you.

Sincerely, C

ANSWER

Dear C,

We have seen many people return to work. Many more have achieved enough relief and recovery to have a good quality of life.

There are some things you should, however, know. First, only those persons who are in the mild or moderate categories and who have pursued aggressive treatment have been able to return to work. The most successful treatment regimen has been low dose naltrexone with
intermittent use of methylprednisolone and ketorolac. Use of plant-based medication like curcumin and serrapeptase have been helpful. Also, recovery has been best when our physical exercises that enhance spinal fluid flow are done.

Go for recovery and a good life. I have attached our self-help protocol and some bulletins to help you.

Best wishes always,
Forest Tennant

Dr. Tennant,

Are you able to prescribe medication and treatment after careful consultation and review of history? I am not looking for pain medication, I can get that from my local pain management at Stanford which I have seen for years. What I can’t get is focused help to fight the inflammation. Anti-inflammatory drugs help me a lot. Prednisone for example almost removes the pain. So does a well-placed epidural.

As you said pain mgt. and neurologists today do not care for inflammation treatment.

My insurance is Blue Cross Blue Shield of Massachusetts, despite that I live in CA. Employer insurance. I do have the highest level they offer, but it is still quite expensive out of network.

Thank you. PK

ANSWER

Dear PK,

If you can’t find a doctor who will prescribe anti-inflammatory medications and tissue building medications, here are my recommendations.

1. Adrenal cortex – double the labeled dose and take 3 to 5 days a week
2. Curcumin 900 to 2000mg a day
3. Pregnenolone 200-300mg a day. Start at 50 and work up.
4. Palmitoylethanolamide (PEA). Best product is PEA-Cure.

Also look over the medication lists that persons with AA are using.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

I was in a car wreck when I was 17 and broke my back in 3 places. I had a fusion and 2 rods placed in my spine. I was sent back to work too soon, and everything busted lose. I was reading some information you wrote about arachnoiditis. The doctors here in Roanoke, VA kept saying I had failed back surgery syndrome and prescribed 800mg ibuprofen and lots of steroid injections. None of this has helped. I finally was diagnosed with arachnoiditis in 2018 and was put on oxycodone. That doctor closed her doors and moved out of town. I’m in pain management now but they keep pushing steroid injections and a radiofrequency nerve ablation. I’ve been through all of this over the years, I’m now 54. These procedures only cause more pain and no one knowns what arachnoiditis is.

Please send me the treatment guide you wrote. Thank you for all the research you have done on this condition. Maybe one day I will find a doctor like you and end this suffering.

Thank you, S

ANSWER

Dear S,

Everyone with AA can find some relief and recovery. Be clearly advised. The term “failed back syndrome” is a cop-out and lack of desire or knowledge to specifically diagnose and treat the usual causes of severe back pain which are intraspinal canal inflammatory
disorders. Your note sounds like you also have AA and the Intractable Pain Syndrome (IPS).

At this point you need to gather materials about AA. Its proper treatment requires 3 medical components: suppression of inflammation, rebuilding damaged tissue, and pain control. Start with your family doctor and a local rheumatologist.

Also, start some of the non-prescription agents that are widely used
by persons with AA.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

Thank you for your response. The Medrol is very helpful. Today I finished the pack. I have an appointment with another pain management doctor on Tuesday, recommended by a surgeon friend of mine I spoke to the pain management doctor briefly when I made the appointment, and my friend had forwarded to him the literature I downloaded from your previous email. He, nonchalantly said, “oh we treat that condition”. So, having done a lot of research through your website and other leads, I would prefer to call you after I meet with him and get your opinion about his recommendations.

That might mean calling you, perhaps, toward the end of the week if you are available. Also, wanted to mention, I resurrected a Soloflex vibrating platform I had bought maybe 20 years ago and never used. I started using it yesterday, 20 minutes two or three times a day and I think it may be helping somewhat. It’s like a whole-body vibrating machine, I’m not sure but I think I feel good after a session. Maybe it is a placebo or maybe it does something. I find it more helpful than the inversion table I have. I will let you know what doctor has to say on Tuesday.

Thank you again for your response and for making yourself available. J

ANSWER

Dear J,

I write this quick note to tell you that I hadn’t heard about Soloflex in years. Vibration therapy makes a lot of good sense to me. Vibration and trampoline walking or bouncing increases lymph flow which theoretically removes toxins, inflammatory waste, and retained
electricity. With AA, so many nerve roots may be damaged and electric currents simply back up, sit there, and cause more and more inflammation which prevents healing. Also, I believe vibration, swinging, and trampoline walking cause increased spinal fluid flow.
Dr. Janet Travell, the physician for John f. Kennedy, had him rock in a rocking chair multiple times a day. Kennedy clearly had arachnoiditis.

Keep vibrating!

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

Thank you so much for the very detailed and specific information on the two different over the counter medications I can take to help combat the neuroinflammation. I found both the 50mg Pregnenolone and the 50mg Adrenal Cortex (bovine) on amazon, and I’m going to order them. I’m very hopeful these will help me while I wait to get into a specialist.

I’m so appreciative that you are personally willing to email me back and forth and share your vast knowledge of AA. Truly, God bless you!

Sincerely, AH

ANSWER

Dear AH,

We are starting a bulletin series on “Best” drugs for AA. Pregnenolone is the first featured. You may need the non-prescription pain relievers, kratom, CBD, or marijuana. Unfortunately, we seem to have a deteriorating medical system in the USA, so I want all persons with AA to know they can get pretty good help with non-prescription drugs. Let me know how you are doing,

Best wishes always,
Forest Tennant

Good morning,

I received my report from Dr. Tennant. I have one question.
Can cauda equina inflammatory disorder become cauda equina syndrome? At what point (if yes) do I seek emergency treatment?
Thank you, NI

ANSWER

Dear NI,

I’m delighted you wrote. There is great confusion over ACUTE and CHRONIC cauda equina syndrome. The term cauda equina syndrome has historically referred to the acute compression of the cauda equina by a ruptured disc, fractured vertebrae or other injury that requires emergency surgery.

Cauda equina inflammatory disorder is a chronic condition that does not “compress” the roots and require emergency surgery. Unfortunately, cauda equina inflammatory disorder is the modern-day precursor of adhesive arachnoiditis (AA). The treatment for it is identical to AA and includes a corticosteroid, ketorolac, and either naltrexone or short-acting opioid for as-needed pain relief.

Best wishes,
Forest Tennant

Good morning,

Hope this email finds everyone well and surviving in this world of COVID-19. I wanted Dr. Tennant to know that his name is well known in the medical community … even as far south as Florida … and very well respected.

I do have a pressing question that I would like for Dr. Tennant to address and give his advice on. I recently saw a prominent (for this area) Anesthesiologist who has a plan to inject a needle into the areas that are giving me the most pain and cauterize the nerves in an attempt to completely eliminate any pain. He feels it will take two (2) procedures to totally stop the pain. My question is this … In one of your postings you alluded to “no more injections”. Did that mean no more steroid injections or no injections (at all) as it would pertain to this procedure as well? I have not made arrangements for this to be done as I am quite skeptical.

Please advise as to what your opinion might be.
Thanks, PT

ANSWER

Dear PT,

I assume you have adhesive arachnoiditis (AA). If so, the primary thing one must do for relief, recovery, and prevention of progression is an aggressive, effective program to suppress intraspinal canal inflammation.

Procedures such as the ones you describe have no history in the treatment of AA. They may or may not work and could even make you worse. I only recommend such procedures as nerve ablation or implanted spinal cord stimulators if an AA patient is on a good intraspinal canal anti-inflammatory program which must include intermittent low dosages of ketorolac, corticosteroid (methylprednisolone or dexamethasone), and either naltrexone or a short-acting opioid acetaminophen compound for pain relief. Once on this basic program, new and innovative treatments recommended by your doctor are worth trying. Same goes for stem cells.

In summary, don’t try to substitute a procedure for the basic medical treatment of AA.

Best wishes,
Forest Tennant

Dr Tennant,

Thank you for all of the information and guidance to those of us dealing with AA. My pain management doctor who has helped me for 10 years, is suggesting radiofrequency ablation as my last facet block only relieved my back pain for 3 weeks. Do you have any information/guidance regarding this procedure for AA patients? Would appreciate your opinion/guidance.

Thank you.
N N

ANSWER

Dear NN,

At this time I have no information – good or bad on radiofrequency ablation with AA. The procedure is a very low risk one, and I think it is worth trying. If you do it, let us know your outcome.

Best wishes always,
Forest Tennant

Dr. Tennant,

In response to this new bulletin. If AA cannot be seen for years. How does one get treatment? Also, at that point is it reversible with treatment and what would treatment be. You would think once pain starts it could be found on MRI?

Thank you, D

ANSWER

Dear D,

AA is the last stage of intraspinal canal inflammation. Today, most persons with AA start with arthritis and/or protruding intervertebral discs which compress and/or irritate the cauda equina nerve roots. Only at a late stage does inflammation in the nerve roots get bad enough to cause adhesions and clumping of nerve roots which adhere to the arachnoid-dural spinal canal cover.

A contrast MRI will usually differentiate between AA and chronic cauda equina inflammatory disorder (CEID) or syndrome. The latter is an appropriate diagnosis. The treatment for AA and CEID is the same. It is far better to diagnose CEID than AA as one can get more relief and recovery as well as prevent the development of AA.

The real issue is that anyone with chronic back pain should have blood tests for inflammatory markers and a contrast MRI of the lumbar-sacral spine. First treatments should be anti-inflammatory agents, physical therapy, and electromagnetic treatment. Today too many persons are simply told to get an epidural corticosteroid injection.

Best wishes always,
Forest Tennant