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 Education Project“.

You may send your questions to veractinc@msn.com , fax to 626-919-7497, or mail to:

The Tennant Foundation

Arachnoiditis Education Project

334 S. Glendora Ave.

West Covina, CA 91790-3043

 

Good evening Dr Tennant,

~ 13 years ago, at a medical pain meeting, I approached you for additional information about hormones and pain.   I was seeking answers. After decades it was clear that pain treatment was missing something big.  (other than a diagnosis, pain being the symptom).

Because of your specialty you looked outside the box.   I have a small practice for patients who have failed most common procedures and treatments.  Since that day I have treated many patients with the information you provide, and I think you would be pleased at some of the successes.

I knew that persistent pain seems to overwhelm the neuroendocrine system:  deplete GABA, over-stimulate the feedback systems, etc.  I also know that opiates and other adjunctive medication for a pain syndrome does much the same, with more significant psychological and social issues.  I am still looking for solutions. Your bulletins have been invaluable

Please continue the good work.  If you ever teach a seminar, class, or provide advanced information, I would appreciate any direction you would give. My practice is small, and I am in the last third of my career.

Dr. C

Answer:

Dear Dr. C,

Thanks for your kind and most welcome note. I wish all practicing physicians understood intractable, severe pain as do you.

To me the most critical basic science research of the past decade which explains, and guides treatment of the severe intractable pain patient are:

  1. severe, constant, centralized intractable pain is caused by activated glial cells and neuroinflammation;
  2. the CNS uses specific hormones (progesterone, pregnenolone, and HCG) to protect neurons and promote neurogenesis.

My approach to treating severe intractable pain is to control neuroinflammation, promote neurogenesis, and provide symptomatic pain relief with opioids as a last resort. I’m big on low dose naltrexone, oxytocin, ketamine, ad PEA (palmitoylethanolamide).

Incidentally, where are you located, and would you accept a referral from me? I’m attaching the medical and self-help protocols I usually recommend.

I’ll keep sending material.

Best wishes always,

Forest Tennant

Dr. Tennant,

Is there any connection between my arachnoiditis and severe leg cramps which I have been experiencing for about a month?

Thanks for all your help, P

Answer:

Dear P,

Yes, leg cramps are typical. There is no sure way to eliminate them, but make sure you rub your spine with a magnet and copper each day.  The drug, acetazolamide (125-250 mg) is worth trying for two weeks.

I’m sending you our medical and self-help protocols.  Make sure you are taking neuroinflammation and neuroregeneration agents.

Best wishes always, Forest Tennant

Hello Dr. Tennant,

I wanted to let you know that I have been following your updates on research into Arachnoiditis through your email bulletins and through the podcasts that you did with Louise Charbonneau (Facebook / ArachnoiditisCanada.com).

I am so pleased that you are still researching and learning new insights into how to better treat AA.

The last time I saw you in your office in April I was able to walk perhaps 3.0km to 3.25 km a day.  As of July, I have been able to walk 4.9 km a day and in August I have been averaging slightly over 5.5 km a day so far.  Over all I feel better, there is no question about that.  I am more active than I was before I started your protocol in January 2018.  So, it has been 7 months now since I first saw you in your West Covina office, and I feel I have made definite progress.  I still have my ups & downs but the downs don’t seem to drag on for weeks like they used to – I usually recover in 2-4 days, which is a tremendous improvement compared less than a year ago.

I have attached a table that shows exactly what I am taking (based on your protocol).  Would it be possible to review and let me know if you feel the dosages are correct for everything or would you adjust anything?

We are so grateful every day that I was lucky enough to have been your patient.  It was only for a short period of time, but it was all that I needed to get me on the right path of doing what is necessary to reduce the neuro inflammation and neuro degeneration.  I say to my wife many times “Dr. Tennant is my hero!!!”.

We wish you and Miriam the very best in your new journey as a research doctor, and we hope there are many receptive doctors out there who are willing to listen to you.

Many thanks and best wishes always, A

Answer:

Dear A,

I’m delighted you are making progress.  You should continue your same protocol.

I do have something new that I firmly believe should be tried by every AA patient.  It is pure adrenal gland products.  These products contain all the natural hormones (pregnenolone, cortisol, testosterone, progesterone, estradiol, DHEA) that an AA patient needs.  You can purchase a month supply for $10-15.  They are now available in health food stores.  Two products I recommend are “Adrenal Caps” and “Raw Adrenal”.  Instructions are on the bottle.

You should try pure adrenal for a month to see if you reduce pain and fatigue.

Best wishes always, Forest Tennant

Dr. Tennant,

Which specialist should have the closest knowledge to deal with adhesive arachnoiditis? Rheumatologist, neurologist etc. Should I use an independent medical examiner to get diagnosis?  He’s a neuroradiologist.

Thanks, D

Answer:

Dear D,

Your question is a good one. At this time no specialty has adopted the disease.  I do hope that rheumatology or neurology adopt it as an official part of their specialty.  I suspect neurology is most likely, but most neurologists don’t like to use hormone therapies which are essential for AA.

Also, AA is now so common that every MD and NP will have to learn the fundamentals of its treatment. Until such time MD’s and NP’s will have to “self-select” because of interest.

Best wishes,

Forest Tennant

Hi Dr. Tennant!!

I have had two stem cell treatments in the last 18 months for arachnoiditis. 11 days after my first (adipose) stem cells I dropped my 900mg gabapentin (only prescription drug) and I felt almost normal 10 months later. Minimal pain, even when active. But then I played full-speed basketball several times. HUGE mistake that sent me back to gabapentin as I progressed to having burning feet and zapping legs. Prior to that was just torso burning.

So, I did another round at a cheaper clinic that basically just took bone marrow from my hip and infused it. 9 days later, I was back off gabapentin. As long as I don’t overdo it, I have relatively little pain, but I do have incredible pressure in my tailbone, typical I know. But that seems not to be touched by stem cells…

Two questions:

  1. Do you think after 4 months post-stem cell infusion, I should hesitate to use steroids or NSAID to knock down the inflammation in my tailbone, or might that be unwise? My stem doctor seems to feel it’s OK to do that, but they really don’t have a lot of experience with arach.
  2. Why do you not encourage patients to try stem cells?

Thank you!! B

Answer:

Dear B,

Your experience with stem cell treatment is most encouraging. You should, however, remain on low dose methylprednisolone or dexamethasone.  A good natural alternative to steroids and NSAIDS is adrenal extract.  This is pure adrenal tissue and it is much safer and does what steroids do.  It will be very compatible with your stem cell treatments.  Two trade names available in health food stores are “Adrenal Caps” and “Raw Adrenal”.  Make sure the label says the product contains adrenal tissue (usually bovine).

Let me know how your future treatment works.

Best wishes,

Forest Tennant

Hi Dr. Tennant, On our support group today, one of the group responded to a post about stem cell treatments indicating that her stem cell treatment actually made her condition worse.  Don’t know if she was a patient or not, but if not, I could probably get her contact information for you, or have her give you a call.  I’ve seen similar posts before, but never kept track of who was posting them.  Are you interested in more negative experiences re: stem cells? Thanks, J

Answer:

Dear J,

I’m extremely interested in stem cell results. I know that there is high hopes for it, but I am skeptical that stem cells can help every patient with AA.  Before making any final conclusions, we need to hear the “good, bad, and the ugly” about stem cell treatment.

Thanks,

Forest Tennant

Dear Dr Tennant, I just read your new bulletin and am so pleased! You must have read about the Laminins article I sent you. I have been doing quite a bit of research on the benefits of Laminins. Would you like me to send you more info on the scientific research? I will be going in for my operation September 13th for the new Nervo HF-10 spinal cord stimulator. Thankfully my Pain Specialist and the Neuro Surgeon listened to my request of keeping the Leads away from my lower lumbar and up in the thoracic area. Please say hello to Miriam for me, I keep you two in my prayers and ask God to keep you safe and healthy. Love Your Friend, D

Answer:

Dear D,

Keep sending me your information. Yes, I not only read your information, but have checked laminins out.  Could be a real addition.  I’ve got some other new things I’m trying.  As soon as you get your stimulator in place, let me know.  You should keep trying new ideas.

Best wishes always,

Forest Tennant

Dr. Tennant,

I wanted to comment on the stem cell bulletin you sent us as our pain management Dr has gone from a regular practice to only stem cells. We were told that because my daughter is highly allergic to some things we were told NOT to consider it.  When a person is ill in many different ways as she is, how do we know that the stem cells that are being given to her are HEALTHY?

Why take a chance? B

Answer:

Dear B,

Your concern is valid. Stem cells should be viewed as a last resort after the standard protocol for neuroinflammation, neuroregeneration, and pain control fails to provide comfort, activity, function, and a quality of life.

Best wishes,

Forest Tennant

Hello Dr Forest Tennant,

I hope you can give me some advice as THE arachnoiditis expert.

When a person has AA, is it always visible at the EMG (electromyography) test? Or is this test useful to see how severe the AA is? Or to see if the disease is progressing?

Thank you very much for helping people like us…

(I am 2 years on your protocol and it feels like it is stable, Thank you!)

If you cannot answer me, thanks anyway for all the years you helped people like me.

JF, Belgium.

Answer:

Dear J,

An EMG test may be normal in AA.  If it is abnormal, you are correct when you say is can be a serial tool to determine if the disease is progressive or improving. For example, if it shows improved neurologic function, you can assume you are controlling the disease.

Best wishes always, Forest Tennant

Hi Dr. Tennant,

I wanted to let you know how I am doing now that I am back in Canada.

The good news is that my doctor in Toronto has agreed to continue to treat me per your protocol – a very big relief for me!

I am currently on the following medications per your protocol:

Ketorolac injection 30 mg 3X a week

Methlyprednisolone 4 mg 3X a week

Medroxyprogeterone 10 mg crushed up as a cream and applied 3X a week

HCG 500 IU 3X a week

Pregnenolone 30 mg 4X a week

Acetazolamide 250 mg 3X a week

And as before I am still on the following:

Oxycodone HCl  20 mg.  3X daily

Gabapentin 300 mg 3X daily

Lisinopril/Hydrochlorothiazide 10 mg / 12.5 mg (1X daily)

Zopiclone 7 mg 1X daily

We are able to get all of the medications here except the HCG troche. (although some of the drug prices here especially for the Ketorolac are much higher than USA prices) We have found a compounding pharmacy in Toronto that offers sublingual HCG in 500 IU doses.  Do you think the sublingual HCG would be as effective as the troche?

Also, I wanted to let you know that I really am starting to feel better lately.  I honestly believe that your treatment is working.  I am able do to more things during the day and be more active lately than I have been for quite some time, perhaps better than I have been since my surgery in January 2017.  So, I am really pleased about that!  And I am faithfully following your protocol as you have said it takes time.

Best wishes, A & L

Answer:

Dear A,

I’m delighted that you are doing well.  Sublingual HCG may be superior to a troche.  Give it a try.

Best wishes always, Forest Tennant

Dr. Tennant,

I have suspected arachnoiditis after an obstetric epidural but I do not have severe pain. I have positional headaches and neuro symptoms and was recommended to try a blood patch to improve positional headaches. I’m afraid of the possibility of this worsening any issues if I do in fact have arachnoiditis. My main pain is between my shoulder blades when I bend my chin to chest it feels like something is pulling: along with generalized occasional warm/burning skin in areas, twitching, numbness and tingling. I sent my MRIs to you a while back and you said there was some inflammation of cauda equina nerve roots which couldn’t have been early stages of arachnoiditis. I do currently feel burning in buttocks after sitting on a cold toilet seat (sensation of cold sometimes causes a lingering slight burning sensation.) What would you advise about trying an epidural blood patch to seal a possible slow/ intermittent leak from the epidural for childbirth and from an LP I had two months afterwards (which causes a post dural puncture headache and I was treated with a blood patch that seemed to work for a while? Thanks, CS

Answer:

Dear C,

I do not recommend a blood patch as several weeks have elapsed since you may have sustained a leak.

Based on your symptoms, I believe you are very likely developing arachnoiditis.  Furthermore, you might benefit from what is called a “therapeutic trial”. In this procedure your physician can give you the medications that we usually give for arachnoiditis.

Your physician can give you a trial of Medrol, ketorolac, and pregnenolone.  If you improve with it, you have confirmed a diagnosis of arachnoiditis as well as discovered a regimen from which you will benefit.

Let me know what happens.

Best wishes always, Forest Tennant

Hello Dr. Tennant,

I have been following your protocol since May, 2017.

I have been doing really well physically. My pain is minimal. I am actually able to lead a near-normal life, doing many of the things I used to enjoy. I am just not quite as physically active as I used to be.

My current symptoms include:

  1. very mild, occasional fascinations in my arms and legs
  2. occasional mild vibrating within the spine usually brought on by lots of physical activity)
  3. very slight occasional discomfort in the sacrum area
  4. slight tingling and numbness in the feet
  5. I do still see signs of body-wide inflammation—redness of the skin on arms, shoulders, back and buttock. This redness is painless.
  • Do you feel I should stay on your full protocol? If so, is it something I should follow for life?
  • Or, do you feel that I may at some point be able to drop some of the meds I’m taking? If so, how long do you feel I should continue on my current protocol?

I’ve attached a pdf of all meds and supplements for your review. Some have been prescribed by you, while others are prescribed by my naturopathic Dr.

I’m hoping you have the time to answer my questions, T

Answer:

Dear T,

Your questions are very pertinent and important.  At this time, I think any patient who has visible nerve clumping and adhesions on their MRI should remain on at least one or two neuroinflammatory agents until all pain is gone.  They do not have to be taken every day.  For example, you may wish to take ketorolac or methylprednisolone on only 2 days a week.  Another example is curcumin and serrapeptase, 3 days a week.  Also, I believe you should be on one of the neurogenic (nerve growth) hormonal agents 2-3 times a week (e.g. pregnenolone, HCG, nandrolone).

Based on your symptoms you probably have the autoimmune disorder that sometimes accompanies AA.  Given your situation, I wouldn’t try to go without some medications to keep neuroinflammation under control.

Best wishes always, Forest Tennant

Hello,

I was wondering if you would have any recommendations for a 10-year-old boy with arachnoiditis. We just discovered the arachnoiditis on his latest MRI. But his doctors say it is normal, just like all our other findings. He has never had any surgeries of the spine. He does have quite a few other abnormalities such as two spinal arachnoid cysts, congenital fusion of c2 and 3, spondylosis, bulging disc, etc. Thank you for your time.

K

Answer:

Dear K,

My first question about your 10-year-old boy is whether he has symptoms of arachnoiditis.  Attached are symptom questionnaires.  Even though a person may have clumping of nerve roots on their MRI, they can’t be considered to have arachnoiditis unless they have symptoms.

Does your boy have Ehlers-Danlos Syndrome?  It sounds like he does.  If your boy proves to have arachnoiditis, he will need to be in treatment even though he is only 10.

Let me know if he has the symptoms of clinical arachnoiditis.  I will be most interested to know if he has pain, bladder/urination difficulty, or weak legs.

Best wishes always, Forest Tennant

Dr. Tennant,

I have had an unusually bad pain month so went into talk to my pain clinic today about a strategy – figuring of course their job is to help with pain. This is the ONLY pain clinic in my city that does pills – all the rest only do shots (which are not useful for my type of pain). I was just told over and over my hands are tied – the CDC released new guidelines. It’s the CDC, not me. And they mentioned the word family doctor.

So I googled the guidelines….since I am a researcher. And read them. They are targeted directly at PCPs – not pain clinics. So why on earth is my pain clinic trying to use them as an excuse for not helping when I have an extra bad flare up?

Just curious. I left politely telling them that they are choosing as pain doctors not to help me with my pain….but polite enough that I wouldn’t get kicked out since they are the only option in town (though maybe going to a PCP would be better given I hate this place anyway). But I am curious why a pain management clinic would use CDC guidelines.

Thoughts? A

Answer:

Dear A,

Why isn’t the pain clinic prescribing what you need?  In my opinion the pain clinic you reference has likely been warned by their malpractice carrier, local hospital, or other sources that they have far too much legal liability to prescribe above CDC guidelines from government agencies.  Today I recommend that pain patients learn how to combine low dose opioids (e.g. tramadol and hydrocodone) with non-opioid analgesics and select hormones to keep your opioid dose low while getting good pain relief.

Best wishes always, Forest Tennant

Update A:

Dear Dr. Tennant,

1) Will you please put me on all of your update mailing lists?

2) Dosage question. I’m curious what dose you would start with on kratom. I have never tried it but ordered a red and green strain from Kratom Crazy.  I have been reading some of your March to 90 materials with interest. Right now, I am taking 120 mg of MS Contin a day and 75 mg of Oxy IR a day. I get these from my primary care doctor who also works for an osteopathic university. While I believe they are very helpful in treating my pain it seems prudent to be prepared to reduce my dose if the govt makes it necessary.

4) It also seems prudent to have an MDMA agent. I’m working on getting a trial of oral ketamine. Until that is approved in thinking the ingredient in delay makes the most sense. If I get this in immediate release what dose would make sense for daily use?  A

Answer:

Dear A,

Thanks so much for the update.  At this time, I know of no recommended Kratom dosage since it is not a standard agent available in health food stores. It is one of the non-opioids, however, know that many arachnoiditis patients find that it gives them pain relief.  Ketamine works quite well for about 75% of patients who take it.  We start with a 25 mg troche and prescribe it for pain flares.  We recommend you try it before resorting to an opioid.  Almost all communities over about 50,000 people now have a compounding pharmacy that can make ketamine troches.

Best wishes always, Forest Tennant

Update A:

Thank you. I’m waiting for my new doc to research ketamine. The doc that was managing my pain before (and was wonderful) was promoted to dean and is no longer seeing patients. He transitioned me to his partner who wanted to do his own research on ketamine before prescribing. I will be patient with him and give him time as he willingly took over my 200 MME from his partner without a hassle. So far at least.

Biggest tip I have is the Low-level light therapy. I sent you the name of the device I use. I’ll forward you all a good research article shortly. Helps greatly with inflammation and heals cells and nerves.

A

Update A:

Here’s the link to one study on the low-level light. I have the Regenesis 3 on long term loan. They are starting to use this after joint replacements as well.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5436183/

A

Hello Dr. Tennant,

I went through with the epidural blood patch and I highly regret it. I was desperate for relief and I made the wrong choice. I have burning in my lower back and legs. I’m scared. The hospital gave me IV Solumedrol for day 1 and prednisone 50mg for day 2 3 and 4. I’m scared. I will never have another needle in my spine after this. I should have trusted your judgement even though all other doctors dismissed arachnoiditis. Please tell me if there is anything else I can do in these early stages to minimize damage. Thank you. CS

Answer:

Dear C,

I’m very sorry the blood patch has caused an apparent acute flare of arachnoiditis.   To gain some recovery you will need 3 to 5 days of injectable ketorolac.  I also recommend pregnenolone, 100 to 200 mg a day for a week.

Above all, keep walking and stretching your legs.  Even if you have to force yourself to do so.

After a week and you have finished emergency treatment, you should go on our regular medical treatment protocol.  I’m making some minor revisions, but I will send it if you wish.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

What are the symptoms of cervical or neck arachnoiditis?

Thank you, C

Answer:

Dear C,

Here are some of the common symptoms of cervical or neck arachnoiditis.

1. Severe constant pain that radiates into the scalp.
2. Difficulty getting to sleep.
3. Pain increases when head is flexed-usually backward.
4. Weakness and/or pain in an arm that tends to come and go.
5. Poor response to neuropathic agents (e.g. gabapentin, pregabalin (Lyrica); muscle relaxants, antidepressants, and anti-inflammatory drugs).

Arachnoiditis of the neck usually covers a small area with a poor blood supply. Consequently, the most potent neuroinflammatory and pain relief measures must be used to find relief and reduction of pain.

Best wishes always, Forest Tennant

Dr. Tennant,
I just read Bulletin 19 and am so confused. One year ago during a fusion I had a dural tear and CSF leak at C6-C7. I have Brown Sequard Syndrome and Central Pain Syndrome. In April I was diagnosed with arachnoiditis by pain management when I complained of a shards of glass/blisters on my right foot parasthesia. It was about that time the numbness from Brown Sequard changed to burning (right side only), complicating my pain profile. I do have some achy pain and burning in the lumbar area, but only on the right side (my BSS pain side), left side diffuse weakness but zero pain. I can sit for hours in one position. Have stood over an hour, no pain, just fatigue. Some occasional (few times a week) itching. No urinary issues, bowel only complicated by opioids (Movantik® works). Currently managed by gabapentin (Gralise®) for nerve pain and 2-3 Percocet® daily. I can walk 30 minutes daily and do 90 minutes of PT work and stretching daily with no pain when I move. Neck is not fully fused. Lumbar and thoracic MRI in May reportedly do not show Arachnoiditis. Insurance will not approve a cervical MRI. I’m trying to understand if I do indeed have ARC, as I need to make some life changes if so. It’s a big diagnosis. Having Brown Sequard makes it more difficult as my constant burning pain is the most prevalent symptom, but not one that prevents me from moving as Arachnoiditis might. Would you be willing or able to look at my MRI if I send it? I know you have many requests, I’m not sure how or where to get a proper reading.

With gratitude, L

Answer:

Dear L,

Don’t be too confused.  Unfortunately, Brown Sequard and arachnoiditis may produce similar symptoms.  Brown Sequard often causes arachnoiditis.

First, we will be happy to review you MRI.  Just send images by e-mail or mail the original disc.  If you want it returned, please send a self-addressed stamped envelope and we will return it.

Be clearly advised that the underlying cause of arachnoiditis is neuroinflammation and neurodegeneration.  These two conditions must be simultaneously treated or you run a high risk of further deterioration.  I’m very glad to hear you are walking.  This is the basic arachnoiditis exercise.  Gabapentin and Percocet® are excellent symptomatic pain relievers but you need to treat your underlying cause.

I look forward to hearing from you.

Best wishes always, Forest Tennant

Hello,

I’ve spent several hours reviewing all your websites and I’m so encouraged.  I sent a request to my PCP to get your Medical Protocol available for outpatient medical  practitioners.

She just wrote back one sentence ..after all the info I sent her..i should come out and see you. Am completely devastated over that and the fact my doctor completely blew me off after my paying her almost $10,000 for worthless treatment.

I suffer greatly with what my other doctor diagnosed as brain arachnoiditis. Left sided head and facial pain, ELECTRICAL sensation getting much worse. Disabled, living with elderly parents in IL.  Suffering 24/7 for years.   Just being online was torture.  I was too sick to even phone you even though I tried but couldn’t do it.

Flying out to CA is no small task as I’m sure you can imagine.

I took your patient questionnaire and answered positive to way over 50% of questions. Plus had microvascular surgry for trigeminal neuralgia in 2014 and just realized surgery report says;

“Fair amount of scarring seen with thickened arachnoid. Removed thickened arachnoid & small amount of scarring at base of cranial nerves 9 & 10.” 

No answer from surgeon even now as to why arachnoid is thickened and what caused the scarring.

Please let me know any guidance…any doctors in IL?

Do you still offer the medical protocol for doctors?

Bless you.  I am hopeless yet clinging to my faith, R

Answer:

Dear R,

Don’t give up hope.  Every patient with arachnoiditis can get some help and relief.  To get some relief and recovery it is essential to know that the underlying cause of arachnoiditis is neuroinflammation and neurodegeneration.  There are specific drugs for these 2 conditions, and you need to simultaneously take the specific drugs that target each condition.

I’m attaching our latest handbook plus other information.  Our physician protocol is being updated and will be available next week.  Please review our new websites for information.

Attached is a short questionnaire to see if you may possibly have Ehlers-Danlos Syndrome.

Send us additional information about yourself as our new arachnoiditis education project wants to bring help to all patients.

Best wishes always, Forest Tennant

Dr. Tennant,

My mother had contacted you, for arachnoiditis, and my other pain issues. My doctor prescribed me pain patch. It does not last 72 hours. I was advised to switch to 48 hours. I’m thin, and metabolize quickly, is that common? Thanks for all your help, you are a hero to many people who are fighting for you.

Sincerely, S

Answer:

Dear S,

Thank you for your kind note. The fentanyl patch rarely lasts over 48 hours. Every day I hear from someone who can’t get enough prescribed pain medication. Consequently, I’m encouraging all chronic pain patients to become aware of and knowledgeable about the new natural pain relievers and hormones that will boost the effectiveness of your patch and other prescription medications. For starters, please consider curcumin and pregnenolone. I’m attaching some information. I’m putting you on our “Bulletins List” which will keep you updated.

Best wishes, Forest Tennant

Hi Dr Tennant,

I was recently diagnosed with adhesive arachnoiditis and have seen 5 different doctors but can’t seem to get the proper treatment. Do you know of any doctors in the New York area that are very familiar with this disease that I can contact?

Appreciate any recommendations you can give me.

Thanks, S

Answer:

Dear S,

Finding a doctor who understands AA and can follow our protocol is going to be hard to find. Why?  It’s only been in the past 2 or 3 years that patients and doctors could pronounce the word and understand that arachnoiditis isn’t a “spider bite”.  Although I and a handful of other practitioners have chosen to specialize in this disease, the protocols that we use involve concepts and treatment agents that are foreign to almost all doctors.

Your best bet on finding help is with your family physician, internist, or nurse practitioner. They will usually be willing to prescribe some of the medication in our protocol.

I’m attaching our self-help protocol. Get started with it to prevent progression of your disease and until you can find medical help.

Another point. If you ask a doctor just for pain relief, particularly opioids, you will likely get turned away.  Opioid reduction agents like oxytocin and ketamine should be your pain relievers.

Lastly, you need to ask your physicians for a therapeutic trial with ketorolac (30 mg for 2 to 3 days) and a 6-day course of methylprednisolone (Medrol® dose Pak). This therapeutic trial will help you determine your on-going program.

Please review our websites and its letters to learn measures that will help you.

Best wishes, Forest Tennant

Dear Dr. Tennant,

Recent 5/21/18 brain surgery found Adhesive Arachnoiditis. Could your wonderful handbook include those of us with brain AA? I live in Massachusetts where surgeons & MD’s are afraid to even discuss this with me. Thank you for your kind thoughtful work, M

Answer:

Dear M,

Thank you for your informative note.  You bet we will include brain AA in future publications.  In fact, I believe brain AA is far more common than recognized.  It can occur after tumor, cancer, stroke, or traumatic brain injury (TBI).  Any pathologic condition or traumatic injury can cause inflammation on the surface of the brain or meninges (covering) and produce adhesions which stick or “glue” the brain to the covering.  When this happens spinal fluid flow can be greatly interrupted causing many different and even bizarre symptoms.  In fact, I believe that spinal fluid flow obstruction in brain AA can be worse than in the lumbar region.

Please let us know your progress, and if you know of other patients which brain AA. Have them send us their story.

Best wishes, Forest Tennant

Hello Dr. T,

I hope this gets to you.  You have looked at my older films before. I have Arachnoiditis symptoms.  I had micro dissection at lateral L5 – S1 which caused my AA.  No dural tear or complications. I have had zero injections. My Arachnoiditis is caused by localized pressure of scar tissue, herniation, and bone spurs in the far lateral zone of L5 S1.

If my Arachnoiditis is caused by localized pressure, can I be cured, or have you seen a case where a foraminotomy or foraminoplasty has cured Arachnoiditis symptoms??  I have full blown Arachnoiditis symptoms. My Arachnoiditis was not caused by a dural tear / blood patch, infection, or injection. It seems to be caused by localized pressure on the nerve roots.

I was bed or floor bound for 6 months but, with your protocols, and things I do to help it, I have now gotten to walk and do other things.

I have followed your protocols for a year now and have regained quality of life. I can’t sit for long but I can now go out with friends and have gotten the constant zaps and nerve pain out of my legs (neuro inflammation is down) I do lay flat 80% of my day on a hard floor.  My sciatica in non dermatone areas is down! I work out now daily. I journaled what makes my AA worse and what helps, and I have found the exercises I can do have been helpful. I made a video for people with Arachnoiditis which they can see and hopefully help them.

Thank you so much, G

Answer:

Dear G,

I’m delighted to get the good progress report. There are cases where a local surgery has reduced or cured AA.  If 2 neurosurgeons agree that surgery could help you, I would try it.  I’m attaching our latest protocols to make sure you are up-to-date.

Best wishes, Forest Tennant

Dear Dr. Tennant,

Ok, you’ve got our attention on the EDS. How convenient for her to be diagnosed with small fiber neuropathy arachnoiditis, and fibromyalgia?  So how do I find out more about this?  Is there a test for EDS?

Thanks, B

Answer:

Dear B,

EDS often causes small fiber neuropathy, arachnoiditis, and fibromyalgia. The treatment protocol for arachnoiditis should be followed.  A patient who has the 3 conditions you mention needs to be on a variety of anabolic measures to counter tissue deterioration.  At this time there is no diagnostic test for the common form of EDS (“hypermobility”) which is the one that causes the problems you describe.  Only recently has research advanced to be able to relay this information.  Consequently, check out our websites and we will be sending out regular information on EDS and its complications and treatment.

Best wishes, Forest Tennant

Dear Dr. Tennant,

Thanks so much for getting back to me and for the excellent information.

As you may know from our previous discussions regarding medications, my body rejects many medications and I am only able to tolerate low doses.

I have tried methylprednisolone but was not able to tolerate it. We substituted it with dexamethasone once a week. I’ve tolerated this fairly well so far. I have also done well with the ketorolac IM injections 15mg 2x a week.

With regard to the nandrolone, this would most likely be my biggest challenge to overcome with my doctor. But he may be willing to prescribe it with some sort of email from you explaining the importance of adding it to my current regimen as he has already implemented the other parts of your protocol for my Adhesive Arachnoiditis. I will of course also give him the latest EDS/ARC bulletins and new EDS website for further information.

There is no EDS specialist in my state that I’ve been able to find. Finding a physician in my area has and still is my biggest challenge. My doctor does his best which I am forever grateful, but he doesn’t understand the full impact of these diseases as he is only a primary care physician.

Thank you again Dr. Tennant so very much for all you are doing. I truly appreciate all your hard work and continued research in trying to help us all have a better quality of life.

I look forward to hearing back from you as soon as possible!

Best wishes and kindest regards, D

Answer:

Dear D,

In my opinion the most important point about EDS is to have all parties concerned understand that it is a genetic, catabolic disease that causes tissue breakdown (e.g. micro-tears).  The spinal cord and its supporting structures such as the dura and arachnoid coverings are common targets of the disease.  It has only been the past 1 to 2 years that I realized many people with spinal cord disorders such as Tarlov cysts, Chiari, arachnoiditis and others are really the result of EDS.

The key point is that all concerned parties need to know the biologic concepts of catabolism and anabolism.  Catabolism is fundamentally a state of metabolic destruction.  Anabolism is metabolic construction.

I believe that one of the reasons (perhaps major reason) that EDS patients must take low medication dosages is that EDS can destroy tissue receptors and enzyme systems necessary to process nutrients and medications.

My major educational message is that all EDS patients with symptoms and signs of catabolism (e.g. pain, ruptures, tissue detachments, etc.) must be on an ANABOLIC program.

At this time, my goal for EDS patients is primarily focused on developing and identifying ANABOLIC compounds and measures.  To date we are just getting started.

Anabolic therapy is a tough sell because it involves hormones (natural and synthetic).  Somehow, propaganda, over the years, has frightened patients and practitioners into avoiding anabolic hormones.  They seem to have forgotten the age-old recipe of “risk versus benefit”.  We must educate concerned parties on the profound risks of EDS and arachnoiditis.

So far, I am confident that human chorionic gonadotropin (HCG) and nandrolone will provide anabolic support for EDS and arachnoiditis patients.  I know that I’ve seen anabolic help from some other hormones, but I don’t yet have specific recommendations.  Also, I don’t yet know of any herbal products, but I’m looking into them. I have a couple of leads.

If you choose to try nandrolone, have your local compounding pharmacy initially make 10 mg troche or sublingual tablets.  Start at 2 times a week.  This is a very low dosage, as some patients take 50 mg on 3 days a week.

Best wishes always, Forest Tennant