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 tennantfoundation92@gmail.com, 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

Good morning,

I have AA that has shown up on my MRI and Dr. Tennant confirmed.  I went to a neurologist who knows about AA and he gave me a thorough exam.  He said while I have MRI AA, I have no neurological symptoms.  My pain is primarily coming from my SI Joint, right side, and I would benefit from SI Joint steroid injections and or ablation.  Do you think this will make my AA worse?  I am nervous.  This neurologist says it won’t?!  I am on your 3-tier medication protocol.  Not getting much relief but starting slow.
Please let me know your opinion.

Thank you! S

ANSWER

Dear S,

You should go ahead with treatment to your SI joint.  Unfortunately, AA throws pelvic-hip movement slightly off balance which may produce inflammation in the SI or hip joints.  Also, change medications after 2 weeks if you find that one doesn’t work.

Best wishes always,
Forest Tennant

Tennant Foundation,

Thank you for your update.  I’m very hopeful that Dr. Tennant will be able to help me.  I feel like my condition is deteriorating.  I will take the first available appointment.  My son will drive me as I feel this is a matter of life/death.  Dr. G has been presented you website, bulletins, and he refuses to prescribe steroids.  Says his personal philosophy not to prescribe steroids and I would have to find another doctor to prescribe steroids as that would require monitoring, he doesn’t do.  I have no idea what doctor would prescribe me steroids.  Dr. G is willing to do cortisone injection into my spine which I believe is a steroid.  I had injection in July 2020.  God Bless, DJ

ANSWER

Dear DJ,

If a person with a spinal canal inflammatory disorder (SCID) such as AA and can’t obtain a prescription corticosteroid, obtain “Adrenal Cortex” from a health food store or from the internet.  Take twice the dose on the label every other day.  Also, your doctor may be willing to give you a corticosteroid injection 1 or 2 times a month in his office.  This is perfectly safe and doesn’t require your physician to monitor your blood hormone levels.

Here are our recommended dosages to be given 1 to 2 times a month:  methylprednisolone 20mg or dexamethasone 3mg.

We recommend that ketorolac (15 to 30mg) and/or B-12 be given with the injection.

Best wishes, Forest Tennant

Good morning,

I hope everyone is well.  I was diagnosed with adhesive arachnoiditis in November 2018.  Your organization has helped me battle this condition and given me information that no one else has…for that I am certainly grateful.

I live in New York and I am eligible for the COVID vaccine.  Is this something, given my condition, that I should take?  Is there any known downside to getting vaccinated, or should I wait until more is known?

I am 56 years old, in good shape and health (aside from AA) and follow the protocols of supplements as well as take Lyrica, Cymbalta, and LDN 8mg every other day.  I take the supplements every day.

Any information you could provide would be greatly appreciated.

Warmest regards, FB

ANSWER

Dear FB,

To date, most AA patients are reporting quite severe reactions to the Covid vaccine.  You may want to wait until the single shot vaccine is available.

I am recommending vitamin C, B-12, and zinc supplements as many physicians, including me, feel these agents are protective against severe viral infection.

Best wishes always,
Forest Tennant

Dear Tennant Foundation,

I am going to have Tarlov Cyst surgery in March on level S2.  Can nerve flossing after surgery prevent adhesive arachnoiditis?  Is there anything I can do to prevent AA, post op?  Any supplements? Exercises? Strengths? Or anything?

Thanks, AL

ANSWER

Dear AL,

There is no guarantee when it comes to Tarlov Cyst surgery.  Even before the surgery we recommend some of the measures used for adhesive arachnoiditis (AA).  Our handbook (Amazon) could be helpful.  I would start one or more of the herbals, natural agents that suppress intraspinal canal inflammation as well as some vitamins and minerals that regenerate tissue (B12, Vit C, magnesium threonate).

Best wishes Forest Tennant

Dear Tennant Foundation,

What is the recommended bi-monthly corticosteroid dose injection?

Thanks, SM

ANSWER

Dear SM,

Here is our recommended monthly or bi-monthly injection:

  1. Methylprednisolone 20mg or dexamethasone 3mg
  2. Option: add to the injection B-12 (cyanocobalamin, 1/2to 1cc) and/or ketorolac 15 to 30mg

Please share this with your medical practitioners.  Be clearly advised.  These regular injections are proving to really provide some relief and recovery for persons with AA and other spinal canal inflammatory disorders.  For treatment of severe flares one can add hydromorphone, meperidine, or morphine.

Best wishes always,
Forest Tennant

Good evening.

I would like to subscribe to Dr. Tennant’s bulletins.  My wonderful husband developed arachnoiditis in May 2019 because of a caudal epidural spinal injection done by the VA to treat a service-connected back injury.  His feet went numb on the table during the procedure and he has done nothing but get worse ever since.  Thankfully, a wonderful neurologist here in Tulsa tentatively diagnosed him with arachnoiditis in December 2019 after we rushed him to the hospital with stroke like symptoms.  He is in perfect health other than the neurological problems from the arachnoiditis and I feel strongly that what he experienced was another manifestation of his arachnoiditis.  He has a very wide range of symptoms and very extensive testing and consultation with some of the top neurologists have not been able to point to anything else but arachnoiditis.  We certainly wish they could have found something more treatable and with a better prognosis. He is in horrific pain all the time and we need all the help and good advice we can get.  We have read and viewed a lot of the information Dr. Tennant has been kind enough to share with the world and have found it helpful and encouraging.  I certainly wish Dr. Tennant were still practicing.  I would have my husband to him in a flash!

Thank you, SS

ANSWER

Dear SS,

Thank you for your kind words.  Perhaps you’ve already done these measures, but here is a step-by-step plan you should consider:

  1. Determine which of the 4 major disorders cause or result from severe back pain.
  2. Which category does your husband fall into?  If he is in the mild or moderate, naltrexone is the 1st drug of choice.
  3. Review the physical measures and pick some you will do each day: walking, leg-knee raising, stretching, water soaking, rocking, etc.
  4. See if any pain patches will help.  Target, CVS, etc. all have some good ones.
  5. Review the 3 medicinal component protocol.  Pick at least one non-prescription agent from the inflammation reduction and tissue regeneration components.
  6. Start the supplements magnesium threonate, B-12, vitamin-C Consider some amino acid or collagen supplements.
  7. See your personal physician to start low dose naltrexone unless he is on opioids.  Ideally do a therapeutic trial with Medrol and/or ketorolac.
  8. Review our materials and obtain our handbook (Amazon) and start building a long-term therapeutic program. You will need to try different prescription and non-prescription medicinal agents to build your own program.
  9. If he has Ehlers-Danlos Syndrome (EDS), the Intractable Pain Syndrome (IPS), or a high level of central nervous system (CNS) inflammation, he will need some specific medicinal agents.

Above all, don’t let naysayers tell you he can’t find relief and recovery.  AA is a very treatable, but it is a relatively rare disease and there aren’t yet any specialists.

Best wishes, Forest Tennant

Hello,

We are looking for someone to diagnose and help our daughter, she had a baby in Oct of 2020, received an epidural and delivered vaginally.  Following the delivery, she was unable to walk and was diagnosed with a femoral nerve injury bilaterally.   She came home with a walker and has been going to Physical Therapy and making wonderful progress.  About three weeks ago, she had a day where she felt like her body had electrical impulses all through it.  She has a dull headache and neuro-system sensations.  I could go on in detail, but we are in desperate need of some assistance so she can receive some relief.   Our daughter is a dynamic active person, and we are seeing her reduced to non-stop headaches and discomfort.

She has been seen by two neurologists and both have said no she does not have this disease.   Can you advise where we might find someone to help her.   We live in MN and would appreciate any information you could provide us.

In Covid times it is difficult.  We do see that the Cleveland Clinic may treat this.  We wondered about the Mayo Clinic in Rochester, MN.  We could travel there.

I appreciate any response.  Thanks, JK

ANSWER

Dear JK,

Based on your letter, your daughter likely has inflammation inside her spinal canal.  This can lead to adhesive arachnoiditis (AA).  There is great confusion in the medical community about the rare complication of spinal canal inflammation after obstetrical epidural injection.  If you do an MRI it will not show arachnoiditis (ARC) or adhesive arachnoiditis (AA) because it takes some weeks or months for this to occur.  What happens first is that some nerve roots in the cauda equina become inflamed and produce symptoms typical of those your daughter is experiencing.  We highly recommend an emergency treatment based on symptoms, not MRI findings.  I will be happy to review her MRI for possible early stages of inflammation in the spinal canal.

I am attaching the emergency protocol we recommend.  Medications can be prescribed by any physician or nurse practitioner.  Intravenous methylprednisolone (500mg) for 5 days is sometimes used as an emergency treatment.

I urge you to act, because most cases like your daughter need emergency treatment to stop the possible progression to the serious problem of AA.

Best wishes always,
Forest Tennant

Dear Tennant Foundation,

I’m in the mist of this AA diagnosis and getting set up with proper care, since every Dr wants to confirm a diagnosis first and meanwhile, I’m dying in flair.

BUT Bulletin 43 just solidifies in my mind EDS. They told me 25 years ago my spondylolisthesis was probably hereditary, they did the fusion and here I am. I have 2 children with such early pains, both diagnosed years ago with Schuemers kyphosis I believe it was, at like 12 years old, 12 & 15%. I can have hope they will receive proper treatment! Thanks to y’all, they can be armed with knowledge until they find the right Drs to treat them! I didn’t “see” the link until this bulletin and check list! My brains a little screwed right now!

I literally had followed up with my local neurologist yesterday, and was left with arachnoiditis, I wouldn’t even know how to diagnosis it, but the good news is I don’t have radiculopathy cause my nerve conduction studies were normal. And since their neurosurgeon referred me to be evaluated for neuropathy, their work was done…. after I mentioned the spinal fluid flow problems and potential CSF seepage…I would think that is a neurologist’s realm. But not in the scope of their practice. I will be looking to go to University of Alabama Birmingham (UAB) where I believe I will get the best chance of proper treatment and hope they will be more aware of it after Dr. A’s work there! If you know of any on board with all these specialists in Birmingham, Chattanooga TN even, please advise!  AG

ANSWER

Dear AG,

The connection between EDS, spinal canal inflammatory disorders (SCID’s) and the intractable pain syndrome (IPS) now make a lot of sense.  Both practitioners and patients have had no real idea of the connections.

Now that we understand the connection, we also know that these conditions are all treated with a basic three component medical protocol: (1) inflammation reduction; (2) tissue regeneration; and (3) pain control.

In your case, attempt to determine which of the “big three” disorders you have or if you have all three.  I’ve attached self-determination questionnaires.  Then start studying the disorders and the medical and physical measures that have been discovered that are bringing some relief and recovery to people.  You have better days ahead.

Best wishes always,
Forest Tennant

Dear Tennant Foundation,

I wonder if you would be kind enough to help me again, I was wondering if inflammation of the spine or Cauda Equina, could eventually cause AA.  I seem to have all the severe symptoms also my spine goes into spasms lasting on average six to seven hours at a time also the electric shocks the bladder incontinence also a problem. I don’t have recent scan of lumbar spine. I really value your opinion as you mentioned Cauda Equina was a possibility I would be really grateful for your help I think you are doing a wonderful job which I which I was more than happy to contribute to your ongoing research.

My best, AM

ANSWER

Dear AM,

You bet!!  Our research shows clearly that, in most cases, a spinal canal inflammatory disorder precedes AA.  The most common initiating event is a protruding (slipped, bulging) disc which recent research has shown are inflamed.  What’s more, the inflammation can spread to the arachnoid-dural spinal canal covering and/or the cauda equina nerve roots.  If the inflammation is not suppressed and continues, AA may be the end result.  For this reason, every person with chronic back pain needs to determine if they have an inflammatory spinal canal condition and treat it with a three-component medical protocol plus physical measures that enhance spinal fluid flow.  In your case I would simply review our materials on starting a 3-component protocol.

Best wishes always,
Forest Tennant

Good morning,

What are your thoughts on intrathecal pain pumps?  Thanks, SJ

ANSWER

Dear SJ,

I am a great believer and advocate of intrathecal pain pumps under a single condition.   That is when a three-component medication program is not providing relief and recovery: (1) inflammation reduction, (2) tissue regeneration, (3) pain control.  Unfortunately, intrathecal pain pumps have sometimes been used BEFORE and as a SUBSTITUTE for a good medical trial.  Also, just because a pump may be delivering a high dose of opioids a decent therapeutic program will still require anti-inflammation and tissue regeneration agents.

Best wishes, Forest Tennant

Dear Tennant Foundation,

I’m taking ketorolac once a week as a nasal spray.  Should I also take dexamethasone or methylprednisolone?  Or is ketorolac sufficient?

Thank you for your advice, DS

ANSWER

Dear DS,

At this point in time, I believe it is wise to take both.  Ketorolac and a corticosteroid can be taken on different days for maximal effect.  The key, but unknown factor, is whether inflammation in the spinal canal can be permanently inactivated once it starts.  Persons with AA should really have a blood test for inflammation about every six months (CRP, ESR, cytokines).  Also, there are symptoms of inflammation that is inside the spinal canal or brain.  I’ve attached a self-determination questionnaire.

In summary, we recommend multiple agents be used to suppress intraspinal canal inflammation until pain and symptoms of inflammation are gone.

Best wishes, Forest Tennant

Dear Tennant Foundation,

Hello, I’d like to add some details if I still can?

I simply wanted to ask Dr. Tennant if it’s possible for arachnoiditis in lumbar spine can cause facial pain? I’ve been experiencing bad throat and ear neuropathy. Along with weird head pressure, face pressures and roof of the mouth pulling. It’s very painful. I also have what feels like a ball that won’t digest in my esophagus. It is the strangest thing, I’ve had endoscopy and it’s all clear.  But it feels like I have something stuck in esophagus.

Thank you, SA

ANSWER

Dear SA,

There are multiple situations that may associate arachnoiditis and facial pain.  Do you have a connective tissue/collagen disorder of the Ehlers-Danlos type (EDS)?  The facial, throat, and esophagus pain is highly suggestive and arachnoiditis is also a result of EDS.  I have attached a self-determination questionnaire.  Adhesive arachnoiditis (AA) can cause facial and head pain due to spinal fluid flow blockage or autoimmune manifestations.

Best wishes, Forest Tennant

Dear Tennant Foundation,

Thank you for the bulletins and recommendations. I was on both low dose naltrexone and Lyrica but after about 60 days (5-6 months ago) stopped taking as they had little effect. I’ll give the Kratom a try – and use low dose naltrexone again as I have had some success in past years re-trying a med. I also use Diclofenac Gel on the right leg and foot – sometimes twice daily. I read where mixing aspirin with the likes of dexamethasone is not recommended but if med side-effect headaches are bad enough an Excedrin always helps.

All those years as a Soldier and many more years training them and seldom went to a doctor in 65 years. About 15 years into the real effects of a congenitally narrow spinal canal and a failed myelogram/AA consumes one’s mind.

Again, thank you very much for your help. TC

ANSWER

Dear TC,

I’m a little surprised that you didn’t get a good response from naltrexone or Lyrica®.  Was your naltrexone dose too low?  Some persons go up to 14 mg a day.  It is most effective when taken twice a day (e. g. 7mg in the morning and evening).  I don’t know where the scare over taking aspirin with dexamethasone comes from.  They work on different mechanisms and boost each other’s effects.  Many persons with AA take their anti-inflammatory drugs on a different day from taking their corticosteroid.  Whatever your program, make sure it includes at least one agent that regenerates tissue.  We are getting good reports on colostrum, deer antler velvet, and nandrolone.

Best wishes,

Forest Tennant

Dear Tennant Foundation,

I have AA and quite possibly Autonomic Neuropathy. I also have Peripheral Neuropathy and Cardiomyopathy.  I’m convinced that I do not have all of these conditions.  That there is one underlying issue causing all my problems.

If it is AA, I am okay with that.  If I do have all then I’m now worried about long term lifespan.

Anyway, I was contacting you to let you know that I am now suffering from severe congestion. Imagine in today’s environment the look that I get when having to blow and wipe my nose all the time.  Is congestion common with AA?

Always many thanks for your feedback.  DM

ANSWER

Dear DM,

Your timing is extraordinary!!  We just wrote a bulletin on the autoimmune and allergic issues with AA.  It is not well appreciated but inflammation inside the spinal canal sheds lots of “biologic trash” that gets into the general circulation.   Think of when you had a “boil” or “cellulitis”.  The red, warm tissue particles have to shed.  When one develops allergic or autoimmune complications of AA, it is time to review and enhance the anti-inflammation component of your treatment program.  In particular you need to be on a periodic, low dose corticosteroid and 1 or 2 herbal/nutritional anti-inflammatory agents (curcumin, boswellia, Traumeel®, PEA, andrographis).

Besides beefing up your “inflammation reduction component” of your treatment program, start an effective “tissue repair” component with vitamin C (2000 to 4000 mg a day), B-12 (500 – 1000 oral mcg a day), and either collagen or polypeptide supplements.  Keep this in mind.  Autoimmunity means your body is “eating away” at your tissue.  You don’t have to put up with much autoimmune damage and let it sacrifice the quality of your life or lifespan if you follow a 3-component medication program.

Best wishes, Forest Tennant

Dear Tennant Foundation,

This is NK from Chicago. 4 weeks ago, I started your protocol for AA.

  1. Naltrexone, 4mg. BID
  2. Ketorolac, 15 mg. IM Twice a week (this is 3rd week)
  3. Methylprednisolone, 4 mg. 3 times a week
  4. Gabapentin, 200 mg T I D.

After two weeks, burning pain on my feet went down and slowly Gabapentin was discontinued 10 days ago. Other medicines:

  1. Metformin, 500mg. One/ day
  2. Serrapeptase, 1 cap. 40,000SPU/ day
  3. Turmeric, 1000mg. Daily once
  4. Pregnenolone 100 mg/ day. I took Pregnenolone 100 mg for 3 weeks and discontinued because I have enlarged prostate. (BPH).
  5. PEMF Energy treatment since 4 weeks.
  6. 10 lb. magnetic pull rub
  7. Walking 2 to 3 miles every day.

No pain last 10 days. Two days ago, I did Trampoline walk for 30 minutes, about 4 miles. The next evening, I got back all the symptoms again: Burning pain on my both feet, Hot flashes and first time I got burning pain on my peritoneum area. I never had this problem before. I started again GABAPENTIN 200mg BID which responded well with in one day. But when I do regular walk or trampoline walk, the pain is coming back. Would you please advise me to change any of medications? Or to increase the dose of Naltrexone?

Warm regards, NK

ANSWER

Dear NK,

You have built an excellent program.  You should do what you are doing and that is reject what doesn’t work and continue to enhance your program.

We know of some persons who take naltrexone as much as 7.0mg twice a day.  Here are some ideas to try one at a time:

  1. water soaking
  2. palmitoylethanolamide (PEA)
  3. taurine, 2000mg – 3 times a day for 4 days
  4. colostrum – see label
  5. deer antler velvet – see label

Cut out the trampoline and only walk 20-30 feet at a time.  Don’t overdo.  Stop if pain starts.  Let us know ANY and ALL that work.  We will pass them on.  Thanks for sharing.

Best wishes always,
Forest Tennant

Tennant Foundation,

Can a viral infection cause inflammation and AA in the spine?  Thanks, G

ANSWER

 Dear G,

The answer is yes.  The issue of viral infection causing inflammation in and around the spinal canal has emerged as a most significant issue.  I used to believe that viruses such as EBV and CMV only invaded after inflammation and immune suppression had started in spinal canal tissues.  I am now in the process of re-evaluating and changing my thinking.  I am forming the opinion that some viruses may invade the intervertebral discs and initiate inflammation with subsequent “slippage” or “protrusion” against the wall or covering of the spinal canal.  Furthermore, this inflammation can spread or infiltrate the spinal canal covering, exiting nerve roots, and the cauda equina.  Intervertebral discs have sections that have a very poor blood supply which would be fertile spots for a virus to propagate.  In my review of over 800 cases of persons with AA symptoms, almost all have protruding discs.  Many of these persons have had surgery for these “slipped” discs but the patient has no history of trauma to cause the disc to “slip”.

In summary, I conclude that some persons have viral infections that initiate spinal canal inflammatory disorders including AA.

Best wishes always,
Forest Tennant

Tennant Foundation,

I’m continuing the hormones as suggested.  Now adding DHEA.  I Feel like I’m doing much better until a flare up sometimes caused by over doing it. I’m hoping to start methylprednisolone small daily dose, after my appointment with my pain doctor. My question is do I also need to take serrapeptase and adrenal cortex?

Thanks, SF

 ANSWER

 Dear SF,

First, serrapeptase is an herb that helps many, but not all, persons with AA.  Its biologic actions are unclear, but they are not related to adrenal cortex or methylprednisolone.  In other words, if it is helping, continue it.

AA is really a disorder in the class of conditions called “Spinal Canal Inflammatory Disorder” (SCID) which means that some tissues in and around the spinal canal are inflamed.  For this reason, plus others, each person has to build their own tailor-made program.

If you can obtain methylprednisolone or dexamethasone, you don’t need adrenal cortex.  Many medical practitioners are still afraid to prescribe corticosteroids usually because they aren’t aware of new information that validates the relative safety of low dose, periodic corticosteroids.  Given the different types of tissues that are inflamed with SCID, I like to see more than one natural anti-inflammatory agent be used.

Best wishes always,
Forest Tennant