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 [email protected], 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 Dr Tennant,

I am in bed suffering from stenosis but I thought that I should pass this information on to you.  I went to see a Dr 2 weeks ago regarding a steroid injection. I mentioned that I suffered from AA. He got annoyed and said: I know all about AA. There is no treatment nor cure so just forget about it.  Unlike you, He has no compassion for my situation. I had the injection done by another Dr instead but this was 2 weeks ago and unfortunately I am still in pain.

Regards, CW

ANSWER

Dear CW,

The ignorance and unwillingness to learn anything new of some doctors is appalling and pitiful.  Fact is this.  We can’t cure most major diseases today including diabetes, rheumatoid arthritis, COPD, cardiac arrhythmia, and hypertension.  We can, like AA, control the disease.

Today, the best a person may be able to do is to become very educated about AA.  Take whatever care your local doctors can or will do, and then rely on your own care protocol consisting of 3-components: (1) suppression of inflammation; (2) restoration of damaged tissue, and (3) pain control.

Best wishes always,
Forest Tennant

Tennant Foundation,

I am slowly increasing my supplements of DHEA and Pregnenolone to levels you said we need.  I was super low before because they caused some anxiety but raising it slow every week …no anxiety so far!

DHEA   88mgs

Pregnanolone 100mgs, SW

ANSWER

Dear SW,

The combined use of DHEA and pregnenolone may end up being the best and cheapest hormone treatment for AA.  The physiological idea is to suppress inflammation and regenerate cauda equina nerve roots and the arachnoid-dural covering of the spinal cord.  These two hormones, over time, according to the many reports we receive, are winners!  One can alternate days of each hormone or use them on 3 to 7 days a week.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

Thank you very much for your answer, that is very appreciated and helpful!  May I just finally doublecheck on two points, to make sure I get it right?

To 1.) would you recommend to take pregnenolone even if the blood level is OK? I am just asking because I am not sure how to cover the 2nd pillar about “regeneration” if the hormone blood levels are within the boundaries.

To 3.) does that mean any periradicular injection or treatment is possible/should not deteriorate the AA?

Thank you and kind regards from Germany! RW

ANSWER

Dear RW,

Your two questions are very important.  First, the efficacy of hormone therapy is to temporarily raise blood levels above normal.  This applies to cortisone, estrogen, testosterone, thyroid, and pregnenolone.  My favorite schedule for therapeutic hormone stimulation is periodic (skip days).  For example, use pregnenolone on 3 days a week.  I’m a great fan of a monthly estrogen shot.  Second, yes, I don’t recommend epidural injections of spinal taps in a person with AA unless these procedures are an emergency to save a life.  Injections, such as facet injections, are outside the spinal canal and may be quite helpful.  Let us know your progress.

Best wishes always,
Forest Tennant

Hi Doctor,

Not too long ago I received a bulletin describing methods of tissue regrowth and it mentioned an MD with AA using boron supplement, she was quoted as saying I’m paraphrasing, it felt as if I could feel the cauda equina nerve roots regrowing.

I’ve unfortunately misplaced and or mistakenly deleted the message. Would you be so kind as to resend the message if possible or perhaps it’d be easier to provide the brand and dosage. The reason I ask is because since I’ve been on the DHEA at 50mg a day for over 3 months now sometimes when I’m stretching my entire body feels as if there is something being stretched or relieved deep down inside at the top middle of my sacral region.

Thank you and best regards, B

ANSWER

Dear B,

Our theory, based on obvious improvements reported by patients and MRI, we believe that some cauda equina nerve roots that are entrapped in the AA mass of inflammation, adhesions, and scar tissue can be released and begin to function normally.  DHEA should probably be given a trial by all persons with AA as it provides multi-hormone activity that both suppresses inflammation and stimulates tissue regeneration and restoration.

Boron is a new “kid on the block”.  Dosage is 2 to 4 mg a day.  Two other metals seem to help pain and tissue regeneration: magnesium threonate and selenium.

Let us know your positive progress report. AA can be controlled and improved even if we can’t yet cure it.

Best wishes always,
Forest Tennant

Doc Tennant,

Is it possible to have AA without back pain?  My leg weakness has increased and intense tingling down to my toes.  Previously you have suggested I have CES.  I hate getting another MRI with contrast but will.

Thank you, BW

ANSWER

Dear BW,

Yes, a few persons with AA have little or no pain.  The precise symptoms in a person depend on the location of the mass and which nerve roots are entrapped in the inflammatory adhesive mass.  For example, some persons will have urinary or bowel symptoms but not burning feet.  Another may have the opposite.

Best wishes always,
Forest Tennant

Good Morning Dr. Tennant

Thank you so much for printing the Intractable Pain Patient’s Handbook For Survival! This is the first thing I found online that told my story! I found it in 2014 at a time when I was ready to give up. Someone from one of the support groups I was a part of (desperately looking for anyone that felt like me) and they told me to look you up.

That day changed everything for me. I found myself as I began to read this wonderful handbook! Thank you for all you have done for me! You gave me a purpose when I donated all my MRI scans dating back to 2000 and you included me in your research. I hope 20 years of scans were helpful (I sent my last on in March) to your research.

Thank you for helping my put a name to this pain when you told me I had Adhesive Arachnoiditis in my neck, upper and lower back. You have given me so many tools that I have incorporated into my daily pain management program. I am 56 and have lived with this for 33 years when a car accident left me with a fractured upper back that went undiagnosed for a decade. You gave me the gift of peace and I will be forever grateful!

Good luck with the rest of your books!

God Bless You, CE

ANSWER

Dear CE,

Thanks for your most kind letter. Frankly, I believe there has been multiple efforts by multiple groups to withhold or suppress information about the Intractable Pain Syndrome and its common causes including AA, EDS, and RSD/CRPS.  We are also learning more and more about small measures that can give everyone more relief and a better quality of life.  Please share your story with family, supporters, and physicians.

Best wishes always,
Forest Tennant

Good afternoon Dr. Tennant,

I had an acute phase of arachnoiditis that lasted 1 month and was stopped with an 8 day iv infusion of solu-medrol.

During this time, my MRI already showed clumping and adhesions. I wanted to know your opinion on stretching my spine to loosen some of the scar tissue.

Have other patients had success with scar tissue that is fairly new? Would I be damaging my nerves if I do stretches to loosen the scar tissue?

Thank you for your help, M

ANSWER

Dear M,

We believe gentle, daily stretching, and spinal fluid flow exercises to be essential in the prevention and treatment of AA. I’m delighted to hear about your success with IV Solu-Medrol®.  Send you doctors our compliments and gratitude.  To make sure your AA doesn’t return, one or more of the natural/botanical inflammatory agents could help in addition to stretching exercises.

Best wishes always,
Forest Tennant

Hello Dr. Tennant,

I recently found out (August 2021) that I have a mass on my kidney. I wonder if constant severe pain caused this. Apparently, it began to form in 2017 though I was never informed. December 2016 is when the birth epidural was done wrong.
My question is can the severe awful pain have caused the mass (the kidneys over producing hormones to fight the pain)?
It’s scary and upsetting I wasn’t told about this in 2017.

I haven’t received much help by doctors at all for the arachnoiditis. I’m in constant pain.

Thank you, R

ANSWER

Dear R,

You have a rare situation, and I can’t say for sure if your kidney mass is related to your pain, but it is possible.  Severe constant pain produces a set of cardiovascular, endocrine, and autoimmune complications.  This development is best called the Intractable Pain Syndrome.   If the syndrome goes on long enough and is poorly controlled, the autoimmunity that ensues may cause tumors including cancers.  While it is not precisely possible to relate tumors and cancers to constant pain, I have seen many cases in which I believed that a tumor or cancer was the result of long-term constant, intractable pain.

Best wishes always,
Forest Tennant

Tennant Foundation,

Thank you for your suggestion of GABA to help with my restless leg syndrome.  IT WORKED!!  Dr Tennant is my guru for AA AND RLS.

God Bless You!!  SF

ANSWWER

Dear SF,

I’m very pleased to hear about your results with GABA.  I just finished a 5 chronicles series entitled: How to Make Your Neurotransmitters and Receptors Relieve Your Pain.  You may pick up some other tips plus learn more about GABA.

Best wishes always,
Forest Tennant