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

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

Hi Tennant Foundation,

You looked at my MRI in 2019 and agreed that I have adhesive Arachnoiditis (AA). I was diagnosed in 2001 by Dr. G. My question is, I am having crazy pain in my joints that started 8months ago and my rheumatologist said that my blood work comes back fine except that I have bad inflammation.  Tests for autoimmune or rheumatoid arthritis all were negative. What do I do there’s times that I can’t walk because of the pain or get out of bed? I am mobile but it just gets so bad for me. Need some help.

Thank you, JC

ANSWER

Dear JC,

You describe the typical autoimmune manifestations that may accompany AA.  The theory on why autoimmunity occurs with AA is that small, inflamed particles from spinal canal tissue enters the bloodstream and causes autoimmunity.  Tests for the rheumatoid markers are usually negative.

Are you on a low dose, periodic corticosteroid?  This is the only thing I know that consistently controls AA autoimmune manifestations.  Also, you need to review your program and determine what measures you are doing to repair your damaged tissues.

Best wishes always,
Forest Tennant

Tennant Foundation,  

I have emailed you before but not about this question.  I’ve been having my left thigh harden up so hard and swelling which is so painful. Slight discoloration of bruising at times.  I informed my provider, and he has done an ultrasound which was negative and I’ve been on Medrol 2 mg 3 x week, for about 4 weeks now, Pregnenolone 100mg daily and Cymbalta 20mg daily and 1 Percocet 5mg/375mg at night.  Have you had patients with this problem that have AA?  What would you suggest that I take for it and or do for it?  I would appreciate your help with this.

Thank you, DA

ANSWER

Dear DA,

Hip problems are quite common in persons with AA.  I believe the usual cause is damage to cauda equina nerve roots that connect to tissues in and around the hip joint.  The swelling is due to inflammation in and/or around the hip joints.

If it feels better with heat, magnet rub, water soak, or TENS, it means inflammation under the skin.  A cortisone injection into the area is worth a try.

You will find a number of rub-on and patch products at any of the major pharmacies.  Experiment with Salonpas, Lidocaine, and others.

Please review the agents that are in the inflammation reduction and tissue repair components for AA.  The biggest failing that I see is a failure to use one or more tissue repair agents.  Let us know your progress.

Best Wishes, Forest Tennant

Hi,  I’m wondering what Your/Doctors thoughts are on PEMF therapy.  With surgical wrapped Tarlov cysts, and CES?

Thank you, N

ANSWER

 Dear N,

 PEMF therapy should be a part of the treatment program for everyone who has a spinal canal inflammatory disorder.  CES is worth a try, but it isn’t as consistent as PEMF.

PEMF is one of the physical measures we highly recommend along with water soaking, rocking, stretching, and magnet rubs.

Best Wishes, Forest Tennant

Dear Tennant Foundation, 

I recently came across an article from the Cleveland clinic dated January 4th, 2018 (see attached web link below).

I was wondering what your thoughts about intrathecal infusion of Ziconotide?

I developed AA back in 2014 from surgery for a partial L5/S1 herniated disc. I also have spinal stenosis and a slight anterior rotation of L3. I am doing medial as well as holistic vitamins.

I am hesitant about surgery but because I don’t want to make it worse and I have a hx of kidney stones the more oral things I take the higher my kidney markers go up.

I know this is my decision, so I am trying to get all the facts before making the decision.

Thank you for your time, DC

ANSWER

 Dear DC,

I only recommend intrathecal infusions, spinal stimulators, stem cells, or risky, experimental procedures AFTER a person is on a good physical measures and medical program which has these 3 components: (1) inflammation reduction, (2) tissue repair, and (3) pain control.  Although we have seen many persons reduce pain and other symptoms with these risky, invasive procedures, EVERY person still needs an on-going treatment program of physical measures and a 3-component medication program.

Remember, “quick fixes” and “shortcuts” may put you in jeopardy.

Best Wishes, Forest Tennant

Hello Tennant Foundation,

I came across your website as I’ve been dealing with some health issues and found it very helpful. I was wondering.  Would you be able to recommend a doctor experienced in dealing with Spinal Canal Inflammatory Disorders in the Raleigh, North Carolina area? I am stationed at Fort Bragg, in Fayetteville, near there.

Thank you very much, WJ

ANSWER

Dear WJ,

At this time few physicians are specializing in AA, but many are becoming quite good clinicians as spinal canal inflammatory disorders are so very common and important.  Take our materials to your personal physician and ask him whether he/she can treat or refer you.

Best wishes, Forest Tennant

Dear Tennant Foundation,

I have a pain pump that is only compatible with 1.5 Tesla, so a 3 Tesla MRI is, unfortunately, not possible. The gadolinium is not injected but infused via IV, so it doesn’t go into the intrathecal space. Is the gadolinium IV is safe?

Thanks! JC

ANSWER

Dear JC,

Gadolinium is very safe and the very best MRI’s are done with it.

Best wishes, Forest Tennant

Hi,

Thank you so much for the info. My doctor is wondering how long do we use these medications mentioned? Is it long term or just a few months? He was very happy to get some answers finally!

Thanks, R

ANSWER

Dear R,

We recommend that a 3-component medication program be in place as long as there is pain.  Even after pain subsides, we recommend regular use of anti-inflammatories since AA can recur.

Best wishes, Forest Tennant

Dear Tennant Foundation,

I have another question.  if my adhesive arachnoiditis is on the left thecal sac L4 why is most of my pain on my right side and numbers and stinging burning pain is on my right leg and foot.  I could not walk on my right leg foot immediately after surgery.   When I woke up I could not stand on my right leg.  It would not hold me.

Thanks, KD

ANSWER

Dear KD,

AA is a bundle or mass of nerve roots, adhesions, and fibrosis.  Nerve roots also cross-function.  Therefore, the mass can be on the left but cause symptoms on the right leg.

Best wishes, Forest Tenant

Tennant Foundation,

Thank you so very much Dr. Tennant for taking the time to view my MRI and for your advice. I immediately sent a purchase request to Amazon for your 2 books and look forward to receiving them.  I have one more request from you. Now that there are virtual medical visits over the network I wonder if you can give me the name of a doctor who specializes in my disease and who lives anywhere in the US. Although Stanford has a pain clinic, they seem not to have specialist in my disease. They are offering me an implanted stimulus machine but after 2 back surgeries I want to stay away from any invasive treatments. My sister has had asthma for years and uses some of the medications that you recommend. When I told this to the doctor at the Palo Alto Medical Foundation, she said that the side effects could be damaging and put me on NORCO instead.  So just the names of some arachnoiditis specialists and I will leave you alone.

Thanks again, CW

ANSWER

Dear CW,

At this point in time I don’t have any arachnoiditis specialists to help you.  ARC and AA are still too rare and unappreciated that they aren’t even listed in the physician’s yearly handbook, Current Therapy.  Consequently, you and your local medical practitioners can and should build a 3-component medication program plus physical measures that help spinal fluid flow.  Norco is hydrocodone plus acetaminophen is a mild to moderate opioid, and it is an excellent pain reliever.  Many persons with AA use Norco and I highly recommend it as a pain reliever along with anti-inflammatory compounds that work on spinal canal inflammation.

I’m attaching some information to help you start building your own, tailor-made program for relief and recovery.  Stay tuned to the letters on our website as they will keep being updated and give you tips to improve your program.

Best wishes always,
Forest Tennant

Tennant Foundation,

Is it okay to use Ketorolac just twice a week? I separate the days to Monday and Thursdays. Should I put the two days together say mid-week?

Should I use steroid reducing pack more often than during bad flare-ups?

SD

ANSWER

Dear SD,

I’m attaching some bulletins which give you some details about corticosteroids and ketorolac.  In documented cases of AA, we recommend that a corticosteroid be taken regularly on a low dose, periodic basis.  We recommend that ketorolac not be taken on consecutive days unless it is the only drug that allows a person to control pain and function.

Best wishes always,
Forest Tennant

Tennant Foundation,

I was officially diagnosed with AA in 2010. I have had four spinal surgeries and I am fused from L2 to S1. My last surgery was in January 2019 due to loose pedicle screws at L-5.

My main symptoms have been burning, tingling and numbness in my toes and feet however in the last two weeks this has progressed to my shins and calves bilaterally. Of course, I also experience muscle fasciculations and spasms as well.

Due to my CKD, stage 3b, creatinine 176 and GFR 35, I am not able to follow your protocol except for Curcumin and PEA. I want to start on Methylprednisolone however I do not know what dosage to take nor how many times a week.

I have a wonderful Nephrologist however she is unfamiliar with AA and could only provide me with the side effects of taking Methylprednisolone. I tried explaining to her your concept of neuroinflammation but to no avail.

Would you be so kind as to advise me as to what dosage and how many times a week would not be too detrimental to me due to my CKD? I need to stop the progression of this horrendous affliction.

Thanking you in advance for your kind cooperation, I remain yours truly,
JK

ANSWER

Dear JK,

Here are agents that routinely suppress the inflammation that causes AA and have no history of causing renal toxicity: methylprednisolone, pregnenolone, DHEA, colostrum, naltrexone, opioids, gabapentin, dexamethasone.

The drugs in the 3-component recommendations that may harm kidneys are: ketorolac, indomethacin, and diclofenac.

Best wishes always,
Forest Tennant

Tennant Foundation,

I read your material, and I have lupus too, and I take blood thinners is there anything with your material that wouldn’t work with Eliquis?

Thanks, S

ANSWER

Dear S,

Since you take a blood thinner, I recommend you only take a prescription anti-inflammatory agent once a week: ketorolac, diclofenac, indomethacin.  Try to stick with non-prescription, herbal, and nutritional anti-inflammatories: examples; curcumin and palmitoylethanolamide (PEA).

Best wishes, Forest Tennant

Dear Tennant Foundation,

I wanted to express my deep gratitude to you for sending me all the important information on my condition. When I read my MRI and read the word arachnoiditis, I searched the internet for information, and I found your handbook.  I read it and found the information to be extremely helpful. After having lumbar surgery in 2017, I believe my AA symptoms became acute after I was rear ended in my car at high speed by a truck in 2019. In any case, I plan to use your handbook as a guide and educate my doctors. I am shocked that none of the major teaching hospitals in Los Angeles and other major cities do not treat AA. I read that you retired, and I am sure it was well deserved! Thank you for all that you do for the AA community.

Warm wishes,  AR

ANSWER

Dear AR,

Thank you for your kind words.  Although I’m retired from clinical practice, I am continuing research on arachnoiditis and the other spinal canal inflammatory disorders (SCID).  You are correct when you say that major hospitals and medical institutions are ignorant about AA.  This means that you must build a personal therapy plan without much help from organized medicine.

The major conceptual problem is that the entire medical system is arranged to detect and treat mechanical or surgical abnormalities of the spine.  Recent research clearly indicates that inflammation in and around the spinal canal is the culprit that must be controlled.

Best wishes, Forest Tennant

Tennant Foundation,

Thank you so much for your reply.   The new program his pain management doctor is recommending is the OrthoLazer.  This is perhaps in addition or in place of the Calmare.    We were just wondering if in your opinion would this type of treatment “excite” anything.  He tries to be incredibly careful.

And we will look into the therapeutic trial you suggested.  Appreciate your time.  SM

ANSWER

Dear SM,

I’m a great believer in electromagnetic treatments for spinal canal inflammatory disorders (SCID).  The OrthoLaser is worth a try.  If it helps you may want to acquire a device, which you can use periodically at home.  I don’t believe that laser and other electromagnetic therapies “excite” or do damage.

Best wishes, Forest Tennant

Hello Tennant Foundation,

On August 31st, my 28-year old wife suffered a brain aneurysm rupture. She spent 32 days in the hospital, most of which in the ICU. Initially, she did not have the ability to move her left leg but did regain function of it. She is suffering from short term memory loss. Since becoming mobile approximately 45 days ago, she has had severe lower back pain. Initially, the doctors believed it was being caused by the blood that mixed into her CSF. They told us it would take 2-4 weeks to get better. It has not gotten any better. She now also has shooting pain in her left hip. She finds complete relief by laying down. She can sit/stand for around 10 minutes at a time and is able to walk with discomfort.

Our neurosurgeon thinks she may have Arachnoiditis. We have an MRI scheduled for this coming week. I have a couple questions for you. Do you see cases of arachnoiditis because of an aneurysm rupture? Is this common? Do you recommend an MRI with or without contrast to best make a diagnosis?

We have started an anti-inflammatory diet and supplements. We are also doing the exercises outlined on your website.

Thank you for your help. JM

ANSWER

Dear JM,

Unfortunately, a ruptured aneurysm can allow blood elements to enter the spinal fluid.  Blood in the spinal fluid can be carried to the lower lumbar-sacral spine and start an inflammatory process usually in the nerve roots of the cauda equina.  You are wise to get an MRI.  At this point it would probably not show adhesive arachnoiditis (AA) but would possibly show cauda equina inflammation signs.  I highly recommend a clinical trial with Medrol and ketorolac to determine if spinal canal inflammation is present.

Best wishes always,
Forest Tennant

Hello Tennant Foundation,

Hope you’re doing well; I apologize for bothering you as I know you already have so much going on. I’m experiencing very high pressure on my head, severe dizziness ,nausea   eye pressure and redness as well as eye pain, I mentioned acetazolamide to my Doctor and would like a confirmation from you that it’s ok to use for head pressure in relation to Arachnoiditis.  He also noticed my eyes were dilated and asked if I was using “drugs” which I’m not.  I only use what you have recommended and has been prescribed which is LDN, methylprednisolone, ketorolac.  What could be causing the dilation of my eyes? Thank you so much for your time.

Sincerely, DM

ANSWER

Dear DM,

We recommend a trial of acetazolamide for any person with AA who has eye, ear, or nasal symptoms.  For safety, take ½ or 1 pill (250mg).  If no side effects, work up to 2 or 3 pills a day for a week.  If you do well with acetazolamide, continue it.  We are aware that some persons with AA take up to 4 pills a day and do very well with it as it suppresses neuroinflammation as well as controls spinal fluid flow.

Best wishes, Forest Tennant

Dear Tennant Foundation,

Hi again, in March 2020, due to the radiating leg pain and numbness in my feet, I had a nerve conduction test done. Now just today I had the same test performed and my neurologist was in a state of bewilderment. He said normally these tests stay the same or get worse, I have never seen improvement like this before, or at least extremely rare cases. So, to confirm your theory, the answer is yes if the inflammation is controlled the pain will be reduced greatly, as well regeneration is also possible. In about 10 months I will get another full spine MRI, as well as another nerve test. I will continue the protocol that I am currently doing, as well as keep things recorded on a monthly basis, if my DDD /AA is reversed significantly in the MRI’s , and I suspect it is a good possibility, I will forward you all documents as well as my all natural protocols, for your research.

Thank you, SM

ANSWER

Dear SM,

I’m delighted, but not surprised with your progress. Now that we understand “spinal canal inflammatory disorders” (SCID) and agents and measures to treat it, everyone with one or more of the disorders can find some relief and recovery.

Best wishes, Forest Tennant

Dear Tennant Foundation,

Thank you so much for replying to me!!! Thanks to you I’m getting the help I need and I’m no longer in a wheelchair. God bless you so much, DM

ANSWER

Dear DM,

We are constantly learning new information about spinal canal inflammatory disorders. We will continually pass on what we learn. Also, you can continually build a better and better treatment program,

Best wishes, Forest Tennant

Thanks so much, Tennant Foundation for the valuable information. I’ll make some changes per your advice. The adrenal cortex does seem a bit sketchy however….reading a fair amount about its potential to cause infections. Will see what I can do to make sure the product I obtain is safe.

BTW – the radiologist who reviewed my last MRI did see some improvement in the adhesive arachnoiditis. SM

ANSWER

Dear SM,

The adrenal cortex we recommend is oral capsules. Klaire® is one recommended brand. In persons who have a suppressed immune system due to AA, adrenal cortex should reduce the risk of infection.

Best wishes, Forest Tennant

Dear Tennant Foundation,

I want to thank you for all the work you do and all the help and hope you give us.
I started your protocol earlier this year. My inflammation numbers have dropped and so has my platelet count. I have Ehlers-Danlos from what YOU saw on my questionnaire. I was finally able to see a genetics specialist last week and he confirmed the diagnoses. That doctor sent me to several different specialist who are educated in these conditions. I’ve seen the pain doctor and he recommended Lyrica and Zyrtec or Benadryl and both seem to be helping.

You have been such a huge help in changing my life and giving me answers I’ve searched for over 20 years. Thank you so much

Sincerely, PY

ANSWER

Dear PY,

I’m delighted, but not surprised, that you are getting some relief and recovery. Now that we understand collagen dissolution and spinal canal inflammatory disorders (SCID’s) we’ve been able (after about 10 years of research) to develop some effective protocols. It sounds like you’ve got a great doctor. Keep you eye on both our websites as we have new information coming.

Best wishes,
Forest Tennant

Tennant Foundation,

I’m from Pennsylvania. I have Adhesive Arachnoiditis and I went many many years before receiving this diagnosis. I have all if not most of the symptoms described. I spend most of my days in bed to the point my muscles are wasting away. I was doing fine (I was okay with my life) before my opioids were reduced.
Keep up the great work. Thank you, DK

ANSWER

Dear DK,

When opioids are reduced, I recommend the following:

1. Obtain Kratom as it is the only non-prescription opioid.
2. CBD/marijuana may substitute for some opioids.
3. Review the 3-component medication program for AA and make sure you take drugs from the inflammation reduction and tissue rebuilding components.
4. Have a hormone blood test for testosterone, DHEA, and pregnenolone. If low on any of these, replenish them as low levels will keep opioids from being very effective.
5. Ask your physician to prescribe morphine, opium, or hydromorphone suppositories for flares.

Best wishes always,
Forest Tennant

Hello,

I am writing to you because I am seeking some answers. A little over a week ago I had an epidural blood patch which resulted in an extremely sore tailbone, intense burning sensations in my legs, difficulty extending my legs because it feels like my nerves are caught and pulling upwards behind my knees, and sudden bladder and bowel dysfunction. I was told this may be arachnoiditis and my doctor did put me on a 6-day course of prednisone. The symptoms are annoying and constant but thankfully mild, but hasn’t seemed to improve much. I do not know if it will resolve or get worse.
However, what really puzzled me and others was that when symptoms started, I was lucky enough to receive a lumbar MRI (before starting the prednisone) but was told by ER doctors that my MRI showed no signs of inflammation. From what I understand, arachnoiditis shows up on an MRI or you’d at least see the inflammation or nerve damage. Is it possible to still develop symptoms without it showing on an MRI? Could the MRI just be read incorrectly if my case is extremely mild and hasn’t progressed yet to show obvious nerve damage? Or could it possibly just be nerve irritation that is presenting with similar symptoms and will resolve on its own?

I’m just puzzled by this and no doctor I’ve spoken to knows what to make of my situation. I worry about it becoming worse or debilitating if I don’t handle it promptly and appropriately, since my MRI results do not show evidence of inflammation, I’m lost as to what to do next.

Thank you so much for your time! AL

ANSWER

Dear AL,

Your questions are most legitimate. Based on your note you clearly have one or more disorders in the class of spectrum of what we call “Intraspinal Canal Inflammatory Disorders”. The MRI will only show protruding discs and adhesive arachnoiditis (AA). You should immediately start 3-component treatment: inflammation reduction, tissue rebuilding, and pain control.

Best wishes,
Forest Tennant

Dear Dr. Tennant,

This may be an odd question but it’s hard to find another doctor with your expertise on arachnoiditis anywhere in the country. I am having a hard time figuring out what it means to have chronic adhesive arachnoiditis. I was diagnosed in 2015 after 20+ years of suffering because of two “failed” back surgeries in the 90’s. At this point in the process is there still inflammation present even after the scar tissue forms and the nerves are clumped together? Or is it an end stage which means that the inflammation is over? Nothing I’ve read has ever explained this or even addressed it.

My main concern right now is regarding the safety of vaccines of any kind but especially the Covid-19 vaccine when it is approved. It appears that the first trials at Oxford were halted due to transverse myelitis so that makes me wonder if we as arachnoiditis patients would be more susceptible to side effects. If we are in a constant inflammatory state, I would think that introducing another challenge to our immune system would tend to overtax our capacities. I look forward to hearing your opinion on this topic.

Many thanks for all you continue to do for those of us who suffer.
JC

ANSWER

Dear JC,

Your questions are “right on”. First, we believe that intraspinal canal inflammation of rheumatoid arthritis. Intraspinal canal inflammation (ICI) may wax and wane, but one must not assume it will totally go away.

In late stage Aa, you should still attempt to build a program of relief and recovery by building a tailor-made, 3-component treatment program. Since you may be on a lot of pain control medications, you can simply add one or two of the best non-prescription anti-ICI agents: curcumin, andrographis, palmitoylethanolamide (PEA). You also want to take one or more of the tissue-building, neural regenerative agents since even late stage AA can regenerate or “scar over” old clumps and adhesive masses. For example, DHEA, colostrum, or deer antler velvet. We are seeing significant improvement with nandrolone. Unfortunately, the government is restricting the compounding of HCG.

I assume given your history that you have the intractable pain syndrome. We have a new website directed specifically at this complication of late stage AA. Please sign up.

I don’t recommend vaccines for late stage AA.

Be clearly advised. We don’t want to give up on long standing AA as we are seeing some remarkable improvement if you can do some of the physical measures such as walking, arm stretching, and water soaking.

Best wishes,
Forest Tennant

Hello,

Dr. Tennant reviewed my MRI’s at the end July and stated that I have the precursors to AA (attached is the letter sent to me). Since then, I have been diagnosed with thyroid cancer and have a full thyroidectomy scheduled for November 6th. I know having optimal hormone levels is important for nerve regeneration. My physicians haven’t seemed to think this would cause any issues, being that I will begin Synthroid immediately, but they also aren’t familiar with AA.

Currently my hormones are all within optimal levels. I’m also taking 2 mg of Methylprednisolone every other day and have been for nearly 2 months. Daily I’m taking turmeric curcumin, serrapeptase and nattokinase, PEA, and diclofenac. My continued symptoms are burning, tightness in lumbar spine, burning and aching legs at times, and newest is right shoulder pain (not sure if it’s related). I am stretching many times a day and walking about a half mile twice a day. I appreciate any advice or insight you can give regarding this.

Sincerely,
MS

ANSWER

Dear MS,

I like the program you built for yourself. I truly believe you will prevent the development of AA with it. It is far better to treat what we call Cauda Equina Inflammatory Disorder (CEID) rather than wait for the development of AA.

I see no reason to change anything, including hormones you are doing. Synthroid will only help reduce the inflammation caused by CEID.

Have you been diagnosed with an autoimmune disorder? I’m impressed you are taking nattokinase, because I feel this may be a helpful agent for all the intraspinal canal inflammatory disorders. I look forward to hearing from you. Tell your physicians they are doing an outstanding job.

Best wishes,
Forest Tennant

Dear Dr. T,

What about oral ketorolac? Your literature says to be cautious or even “don’t use it”.

Thank you,
Dr. LC

ANSWER

Dear Dr. LC,

We’ve had to modify our position on oral ketorolac, because frankly, it is usually difficult to get much CONSISTENT relief and recovery from AA and CEID without low dose, regular dosing of ketorolac and a corticosteroid.

Persons under age 70 can almost always take an oral 10 mg dose on 1 to 3 days a week or every other day.

Here are some rules I recommend:

1. Skip a day between ketorolac dosages.
2. Take with food or an antacid.
3. Do a periodic hemoglobulin, hematocrit, or blood count and BUN/creatinine. Liver is rarely affected. Test regularly if over 70.
4. Warn patients about black stools, vomiting blood, or abdominal pain.
5. A good idea is to also alternate days of ketorolac with dexamethasone or methylprednisolone.
Ketorolac almost seems like it was made for intraspinal canal inflammatory disorders. It can and should be an ancillary treatment with low dose naltrexone and daily opioids. The latter can almost always be reduced with use of ketorolac.

Best wishes,
Forest Tennant

Dear Dr. Tennant,

I was hoping to be added to the email list. I was diagnosed a few years back and things seem to be getting worse. I’ve had 2 flairs in the past month. It’s awful. Thank you so much in advance.

JR

ANSWER

Dear JR,

I’m very glad you have contacted us, because our recent research provides some guidance on prevention of flares and deterioration. I write the following on the basis that you have AA or other intraspinal canal inflammatory disorders.

Flares and deterioration are caused by either uncontrolled inflammation, infection, or some type of injury due to overexertion. Adequate treatment of AA requires 3 components: (1) suppression of inflammation; (2) protection and regeneration of spinal canal tissues; and (3) pain control.

You need to review the 3 components and see if you are lacking. Also review the physical measures that must be done routinely to control AA.

Most persons with flares and deterioration have an insufficient program to suppress intraspinal canal inflammation. You will need more that one agent as different tissues are involved. Be clearly advised. If you have AA, you will need a periodic corticosteroid to control flares and deterioration. We will be sending out regular bulletins to help persons with AA take advantage of our latest research. Also, you should probably obtain our handbook from Amazon.

Best wishes
Forest Tennant

Dear Dr. Tennant,

Found your latest bulletin concerning corticosteroids being essential for adhesive arachnoiditis very interesting. I have found that the only time I was totally free from pain is when I took methylprednisolone. Dr renewed once but wouldn’t renew again.

Besides back and leg extreme pain, constant insomnia, extremely dry thin skin on my forearms and shins bother me. I look like I’ve been beaten most the time. I do not take blood thinners. In fact, I don’t even take Tylenol because of bruising. Thus, I can’t get relief from inflammation except through usage of Kratom. I’m sure that I’m either taking something that’s causing it or am lacking some essential vitamin or mineral.
How can I find out if what I take is causing problems? Also, as far as methylprednisolone prescription, would I follow your suggestion of 1 4 mg pill?

Thank you in advance be for your advice, SF

ANSWER

Dear SF,

I assume you either have adhesive arachnoiditis (AA) or cauda equina inflammatory disorder (CEID). The treatment is fundamentally the same except one really needs a potent anabolic hormone with AA. CEID is much more treatable. Your experience with pain reduction by use of methylprednisolone tells us that you have inflammation inside your spinal canal.

Perhaps your physicians would consider an injection or 8 mg oral tab of methylprednisolone on a weekly or bi-monthly basis. If you simply can’t get methylprednisolone purchase “adrenal cortex” in a health food store. Use a dose about 2 or 3 times what is on the label. You can also get pregnenolone which converts to cortisol and progesterone.

A number of persons with AA are finding this combination of non-prescription anti-inflammatories to work quite well for AA and CEID: curcumin, PEA, and andrographis.

I hope this helps.

Best wishes,
Forest Tennant