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

Tennant Foundation,

I hope this email finds you well. The following question may seem irrelevant, but I will ask it anyways. How long should one remain in the rocking chair each day? Is it one session per day, in the negative how many sessions per day and what is the duration of each session?

Best regards, JK

ANSWER

Dear JK,

No one knows how long one should rock or swing, but you likely get some effect on spinal fluid flow within 30 seconds if you do one of the following:

  1. rock in a chair
  2. walk on a trampoline
  3. walk and swing your arms

After 5 minutes you have likely maximized the effect.  The idea is to speed up spinal fluid flow so it will work out inflammatory waste and bring healing nutrients to the site of tissue damage.

Best wishes always,
Forest Tennant

Greetings Tennant Foundation,

I’m 15 months post op after having the Tarlov cyst surgery with Dr. Feigenbaum in Dallas. I’ve been receiving biweekly injections of Toradol for 17 months from home health along with methylated B12 shots every couple week.  I still wear a Fentanyl patch 25mcg (change every 4-5 days- longer than prescribed) I also continue to take Dilaudid as needed and can go a couple days without taking it, occasionally depending on fluctuations in pain. Rarely exceed taking over 2-3 mg a day.  My ultimate goal is hopefully getting off opioids. I am unable to tolerate the nerve medications.

Right after Christmas, I ate something I normally don’t eat and contracted what is believed was eColi in my intestines. It really messed me up for a month as my primary pain is rectal. Now finally back to normal.  As a result, I am 4 months late in getting my one-year post surgery sacral spine/pelvic MRI to check on how my laminectomy surgery area are healing. Dr. Feigenbaum gets a disk and report. I also plan on getting one to you. I would like you to look and see how my spine looks in relation to the last time you looked at my films. I hope things look better in terms of AA and EDS.

I also wanted to know your opinion on the Covid vaccines. Although I have had opportunities to get the two mRNA vaccines, I’ve turned it down as I haven’t felt comfortable enough, given my extreme sensitivities and complicated medical condition.

However, the Johnson & Johnson vaccine was approved today and will be available soon. This is the vaccine I would feel more comfortable taking. It’s just one shot and has a high safety profile using a method of delivery called a vector vaccine.  J & J’s shot uses a cold virus like a Trojan horse to carry the spike gene into the body where cells make copies of the protein to prime the immune system in case the real virus comes along. It’s more of a tried-and-true vaccine technology like the one J & J used in making the Ebola vaccine.

Do you agree with my assessment? I would highly appreciate getting your opinion about the vaccines for those of us with complex medical conditions

Should I contract the virus, I would want to have access to hydroxychloroquine and the monoclonal antibody treatment (Eli Lilly drug). I have known miraculous recoveries from use of these interventions.

Thank you so much for your help, Dr. Tennant!  I’ll be in touch soon after having the MRI.

Blessings, AF

ANSWER

Dear AF,

You are on top of things, and I like your assessment of Covid vaccine safety for AA-EDS patients.  I highly recommend that every AA and EDS patient take vitamin C, 1000 mg in morning and evening. I personally take 2000 mg in A and PM.  Also take a vitamin-mineral preparation that has zinc in it.  I also recommend B-12 which you are already taking.  Keep me posted.

Best wishes always,
Forest Tennant

Dear Tennant Foundation,

Last week I received my first shot, as suggested in your bulletin 46 and I can report this back to you:

  1. Methylprednisolone 20mg or dexamethasone 3mg
  2. Option: Add to the injection ketorolac 15 to 30mg and/or B12 ½ to 1cc
  3. Option: If you have a severe flare, you may add hydromorphone, morphine, or other analgesic to the injection mixture

On February 26th, 2021, I have received this recommended injection at my MD’s clinic.

1st Day: I have received the shot at about 1:30pm and the rest of the day I felt a bit tired, and I had a little bit of a headache.

2nd Day: I felt much better in the morning and I got up, out of my bed, very easy and with no pain. During the day, I still felt a little bit tired, but I had no pain at all and my walking with a walker got better again.

3rd Day: Same as Day 2. But I relaxed more and slept more during the day. In the evening, I felt great.

4th Day: I woke up with no pain and I got out of bed without and problems. My whole spine, neck region, hips and my legs feel good, without any pain. Body movements can be done also without pain. Overall feeling is very good.

I have to say, I have not felt so good for many years. This injection really helps.

The injection has to be prepared with several medication. One shot is large, and it hurts, because of the high volume of fluids injected into the muscle. But there are no symptoms or side effects after the injection. Also, no problem with the arm.

Me and my doctor starting out now with a monthly injection. End of March I will see, how it feels then and/or if there is a bi-monthly injection suggested.

All I can say is: It really works, and I feel good!

Thank you very much, indeed, Prof. Dr. Tennant for you Work and Services on behalf of us AA patients. I really have not felt so relieved and fine after this injection.

Sincerely Yours, B

ANSWER

Dear B,

We highly recommend a monthly or bimonthly injection of a corticosteroid, ketorolac, and B-12 for persons with documented AA.  A problem that many persons have is that oral medications don’t get through the stomach and intestine and into the blood in adequate amounts to be effective.  This is why a person with AA needs to explore injections, under-the-tongue, and suppository medications.

Best wishes always,
Forest Tennant

Tennant Foundation,

Hi, I’m wondering if the injections are OK to be put directly into the spinal area? My Dr is planning radio frequency treatments on some of my spinal nerve roots, and he wants to put the steroids in at the same time. I know this seems counterproductive, but the radio frequency treatments decrease my pain significantly. Or do you give them intravenously?

Thanks, FJ

ANSWER

Dear FJ,

You ask a key question that is applicable to EVERY person with AA.  Once you get AA, I don’t recommend any procedures that put ANY medication into the spinal canal or epidural space.  Procedures such as the ones your doctor are recommending can be very helpful and reduce pain and suffering.  Why?  He is going to attempt to decrease inflammation and reduce fibrotic development in the tissues and bones OUTSIDE the spinal canal.

It is poorly appreciated but AA can seep fluid into the areas outside the spinal canal and cause imbalances in movement such as bending, lifting, and walking that can cause inflammatory pockets just outside the spinal canal.

The procedures you doctors are recommending are quite safe and worth a try.  Let us know how things go.

Best wishes always,
Forest Tennant

Tennant Foundation,

For two years, I have been diagnosed & hospitalized several times with Pneumonia in my right lung. When I swallow, liquid, food & meds can take a turn directly into the lung. In December doctors removed my right lung sac & inserted drainage tubes. The sac was extremely inflamed. Recently while rereading Dr Tennant’s Protocol, I saw that Arachnoiditis can cause Dysphagia. My AA is at the Lumbar/Sciatic levels. How can it affect swallowing? I’m a 66-year-old woman & had thought the Dysphagia might be due to age.

Thank you for all the work you do on the behalf of those of us suffering with Arachnoiditis. I live in Kentucky and cannot find a doctor who knows about this hideous disease.

Best wishes, CS

ANSWER

Dear CS,

I can’t verify that your AA caused your lung problems, but I can explain how AA can cause dysphagia and possibly cause some breathing difficulties.

The cauda equina nerve roots are the “spinal cord” below about the top lumbar vertebrae.  They send nerves to all the internal organs including diaphragm, esophagus, lung, bladder, bowel, sex organs.  AA is an inflammatory mass inside the spinal canal that entraps nerve roots.  If you are unlucky enough to have the nerves that go to the esophagus and diaphragm entrapped in your AA mass, you will have trouble swallowing, deep breathing, and experience a lot of stomach upsets.  One of the reasons that a person with AA must continually take agents that suppress inflammation inside the spinal canal is to make sure the inflammatory mass doesn’t enlarge and entrap more nerves.

Best wishes always,
Forest Tennant

Tennant Foundation,

I am sorry to bother you, but I am trying extremely hard to understand this disease, so my follow up question is why would AA throw my pelvic hip movement off balance?

Sincerely, S

ANSWER

Dear S,

AA is an inflammatory mass that entraps nerves of which some connect to the pelvis and hip.  When nerves are entrapped by AA, they don’t conduct electricity properly.  Consequently, your sacral-iliac and hip joints may not move in synchrony which results in arthritis and pain.  The protection of your sacral-iliac, hip, and knee joints are a major reason why persons with AA need the 3-element care protocol which includes daily walking and stretching.

Best wishes always,
Forest Tennant

Tennant Foundation,

I wonder whether you can give an explanation and possible treatment for the following condition as it relates to my AA.  Most mornings I wake up around 5.30 with tremendous aches in my hips and legs. As soon as I get up and walk around, the pains dissipate.

  1. Could the reason be the lack of circulation of spinal fluid while I’m sleeping in the fetal position at night?
  2. If this is the case, is there any non-opioid medication that would keep the spinal fluid lubricating the spinal nerves?

I successfully control other aspects of my AA by following your advice on exercise and stretches, etc. I do not take any medication other than a very occasional diazepam.

Best regards, RR

ANSWER

Dear RR,

Great to hear from you.  I suspect you are correct when you believe your early morning symptoms are due to spinal fluid stasis.  More and more persons with AA are finding that blankets and mattresses with magnets or silver lining helps them resolve this issue.  To date the medications that sometimes stabilizes spinal fluid flow are acetazolamide and palmitoylethanolamide (PEA). Try one or both for only 3-5 days.  Before you go to bed, do some spinal fluid flow exercise such as rocking.  It either works right away or doesn’t at all.

Give me an update on your book and advocacy.  I look forward to hearing from you.

Best wishes always,
Forest Tennant

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