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

Hello Dr. Tennant,

I am reaching out to ask your opinion on starting a few new liposomal/lipospheric   supplements to help manage my condition. There are three I am considering adding to my current treatment protocol:

Lipo-Spheric Magnesium- L- Threonate 1,000 mg daily

Lipo-Spheric R-Alpha Lipoic Acid – 226 mg with 1,000 essential phospholipids

Lipo-Spheric Glutathione – 450 mg Setria Glutathione with 1,000 essential phospholipids

All three are supplements made by the same company that produces my Lipo-spheric Vitamin C that I recently added approximately a month and a half ago and I have found to be beneficial. (LivOn)

Would you mind sharing if any one or more of these new supplements might be of benefit to Arachnoiditis patients?

I am presently taking a triple Magnesium product by Vital Nutrients, but would like to begin the lipospheric formula listed above. I am not familiar with the L-Threonate additive so was hopeful you might be.

Thank you for your expertise in working with this condition I live with. I greatly appreciate any feedback you are willing to provide before starting new supplements.

I hope this message finds you at peace in this new year.

All the best to you, GV

ANSWER

Dear GV,

The threonate additive is proving to be very helpful.  It is believed to help magnesium cross the blood brain barrier.  I would really like to know more about the LivOn program.  Sounds terrific!  Let me know how it goes.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

I’m wondering if you could provide me with some information, please. Your letter dated December 13 states that I clearly have adhesive arachnoiditis. Once again thank you for doing this review. I tried the 6 Medrol pak without any significant change noted. I am taking PEA, collagen, adrenal cortex.  I have limited mobility – am in an in wheelchair and I’m wondering if I’m too far along for it to benefit me.   What would you suggest I do? I am speaking to my doctor tomorrow (I’m not expecting you respond by tomorrow) and I want to have something to suggest to him. I do have one of your AA books and I have read your protocols to help me.  Wondering if I need more high-dose steroids or just continue on low-dose 2-3 days a week? Or? I am unable to travel to my doctor’s office which is about 45 minutes away so injections would be difficult.

I would appreciate any information you could share with me. This disease is just devastating.  I’m 56 and can no longer teach and I’m in a wheelchair and homebound.  I’m sure the story is very familiar to you unfortunately.  You have just helped somebody I know who lives in South Carolina. Thank you so much for the work you do.

I’m sorry, I meant to add that I’m also taking nortriptyline, gabapentin, codeine, Advil and Tylenol.

KS

ANSWER

Dear KS,

When you get no response from the Medrol Dose Pak, it means that you don’t have much, if any, ACTIVE (here and now) inflammation.  Intraspinal canal inflammation can flare, however, so continue the adrenal cortex and PEA as they will likely keep your inflammation under control.  I have these suggestions.

  1. Try one injection of ketorolac to see if it helps.
  2. A hormone blood test for DHEA and pregnenolone will tell you if you need to take one or both of these hormones.  Also, an estrogen injection would be helpful to see if you get better.

3.Since you don’t have much if any active inflammation, you need more pain relief with opioids.  If not currently on opioids, low dose naltrexone should be tried.  Nasal ketamine is becoming very popular for pain relief.

  1. The best pain relief drug we have identified is injectable Dilaudid (50 mg/ml from Anazao Laboratories) in Tampa.  One can take .1 ml (5mg) with a small syringe and needle.
  2. Severe constant pain in a person with MRI-documented AA will usually require a benzodiazepine at least at bedtime and Adderall during the day is very helpful.

Let me know your progress.

Best wishes always,
Forest Tennant

Dr. Tennant,

Thank you for this article. I will show my doctor this because he lowered my metformin to 500 a day.  This just made me gain weight (insulin resistant) so I asked to go back to 500x 2 a day and my weight has come down, we know our bodies well, but your article explains a lot. I have Intractable Pain re. migraine Encephalopathy 24/7 and in a flare my blood pressure goes 221/90. I do watch what I eat and avoid carbs and sugar.  I want to get my cortisol level checked.  I do appreciate your articles as my doctor and many others don’t understand this illness.

FR

ANSWER

Dear FR,

Until recently I never knew how important it is to keep blood sugar in normal range if one has intractable pain.  We get good reports about metformin.  I’ve seen dosages of 500mg given up to 4 times a day.  Let me know how things go.

Best wishes always,
Forest Tennant

Dear Dr Tennant, Happy New Year!

I hope you are keeping well.  You diagnosed me with adhesive arachnoiditis at L4 in 2013.

I wonder if you could advise me on two things, please.  Can AA have anything to do with debilitating pain of the coccyx, which I have now been having for 2 /3 years.  I know you recommend no injections or anything with having AA of the spine, but does this apply to the Coccyx too? Is it possible that this could be the AA naturally processing? I try to keep moving as much as I can.

I would very much appreciate your advice on Coccydynia and look forward to hearing from you.

Best wishes

Kind regards, DW

ANSWER

You are correct.  I don’t normally recommend epidural injections if one has MRI-documented AA.  Other injections along the spine are not only permissible, but desirable.  Certainly you should have your coccyx injected.  My experience with coccydynia is that an anesthetic-corticosteroid injection is essential.  Please share this information with your family and physicians.

Best wishes always,
Forest Tennant

Dr. Tennant,

I am so sorry to bother you again as I know that you are extremely busy. However, I did have a question in which your expertise is necessary. Following the receipt of your letter and MRI notes my doctor order the blood panel for inflammatory markers and we did a clinical trial of methylprednisolone. The trial of methylprednisolone gave me relief from pain that I haven’t experienced in over 3 years! However, my doctor said that the blood panel did not show any inflammatory markers outside of the normal limits. I don’t honestly know how that is possible. But, if that is true…can my blood work show that it is within normal limits, and I still have AA?

Thank you, MJ

ANSWER

Dear MJ,

Your note makes a key terribly misunderstood point.  AA is an intraspinal canal inflammatory disease in which inflammation may never go away.  It only shows up in the blood if the intraspinal canal inflammation is at a very high level.  Your Medrol trial tells you that you have intraspinal canal inflammation that must be suppressed, or you can expect to worsen.  I suggest you consider a periodic, low dose of Medrol (injection or oral) and 1 or 2 natural, anti-inflammatory agents that are popular with AA persons.  Also, look for our next bulletin that is dietary measures for AA.

Best wishes always,
Forest Tennant

Dr. Tennant,

Thank you so very much. I have read your handbooks, research, and YouTube. You are one, if not the only one, leading the way.  I hope that even with people like me, you are still able to get some enjoyment out of retirement and spend time with your wife.

Thanks again and take care.  B

ANSWER

Dear B,

Thanks for your kind note.  You will be pleased to know that the past 18 months has been filled with new discoveries and products to better the lives of persons with AA.  Keep in touch with our bulletins, and letters on our website.  I truly believe that the future will better the lives of persons with AA.  Although I’ve retired from clinical practice, I keep researching this horrible disease, and we have and good and building network of families, patients, and doctors who are trying new things and giving us constant reports.  We will pass on the “good news.”

Best wishes always,
Forest Tennant

Hello Dr. Tennant,

I ordered your new handbook how to recognize AA and it’s awesome! Thank you for doing this. I’ve read it and now I’m going to give it to my family doctor.  I know a woman who is having signs of AA and I showed her some of the images to check on her MRI. This is a very helpful resource. I had three radiologists miss this on my MRIs. Totally unbelievable. And I have now lost my ability to walk because it went undiagnosed (I was told many times it was conversion disorder!) and the inflammation went untreated.

Thank you for all the amazing work you do! KS

ANSWER

Dear KS,

Thank you for your kind note and a really big thanks for helping your doctors.  Today, continuing education for MD’s and NP’s is pretty sparse.  Consequently, most of the good medica people appreciate help from patients.  My greatest hope is that the handbook will bring about early diagnosis and cut out a lot of need for wheelchairs!!

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

I would be interested in whether you already have experience or an opinion about red light and near-infrared light – radiation for AA.  It has a very anti-inflammatory effect, also on deeper tissues and much more positive effects on the body, but I haven’t read anything about it in your recommendations.
Thanks in advance!

Kind regards and happy Christmas, JF

ANSWER

Dear JF,

I haven’t written much about infrared light (IR), but I’m a great supporter of it. In fact, I like to use prednisone or SOMA® underneath the light.  I particularly like to see IR used by persons with AA who have the “empty sac” sign and spinal fluid seepage.  I believe IR, particularly with prednisone, helps to heal tissues around the spinal column and possibly even the spinal canal covering.

Let me know your experience.

Best wishes,

Forest Tennant

Hello,

I thought I’d share a discovery for those of us who are not only dealing with chronic pain but also possibly having to battle the constipation caused by the use of opioid medication. I myself was taking 2 in 1 Collace tablets nearly every day, and or using suppositories, and in worst case scenarios drinking magnesium citrate. I happened to see an advertisement for a probiotic that guarantees regular bowel movements. So I figured I’d give it a try, I’ve been on pain management since 2013 having had three major surgeries, the latest in April of 2020. I titrated down the laxatives and took just one probiotic capsule 1/2 hour before dinner daily. After about one week I found that my bowels were functioning with far less straining and by the end of two weeks I was no longer reliant on the laxatives at all. I’m fairly regular now without any “pop a vein in the forehead” style movements. I’d highly recommend trying this to anyone who is suffering the way that I was. The product is “Solimoprobiotic” and can be found on Amazon.

I hope this helps,

Regards, B

ANSWER

Dear B,

Thanks so much for the tip.  Due to entrapment of nerve roots that innervate the intestine, persons with AA may suffer severe constipation.

Best wishes,

Forest Tennant

Good morning,

I have a couple questions please. I am going to see a new doctor here in Mexico this week and was wondering if anybody has had any experience, good or bad, with the RACZ procedure or radio frequency neurotomy. His name is Dr Ricardo Plancarte Sanchez and is supposed to be highly regarded in the pain management field here in Mexico. Regardless of the doctors background, I am very nervous about anybody messing around in my spine again. After studying spinal cord stimulators, I declined getting one installed due to the issues I have already with my spine and nerves.

From what I have watched on YouTube, these might be good procedures for someone before spinal fusion surgery but maybe not after due to my nerve issues and the pain I’m living with. But if it is worth the risk, I might try one or both procedures.

Do you have any thoughts on these procedures or any information I could study?

I appreciate your time as always. SN

ANSWER

Dear SN,

We have no reports of the procedures you mention in persons with MRI-documented AA.  We highly recommend all persons with MRI-documented AA be on an aggressive 3-component medical protocol before they take the risk of experimental procedures.

Best wishes,

Forest Tennant

Dear Dr Tennant

I was in a severe pain flare at the time I was given the AstraZeneca Covid vaccine which caused a horrific increase in spinal pain to the point I felt suicidal. My vision has also been affected after the vaccine although the Neuro-Opthalmologist says the vaccine wouldn’t have caused it. At the time of the first Covid vaccine I’d been trialing with diclofenac 25mg 3x a day, but this was increased to 50mg 3- a day within 24 hours.

I refused the second AstraZeneca vaccine after my neurologist said if I had an adverse reaction to the first vaccine it was likely I’d have a similar reaction to the second vaccine.

I am now under pressure to have the Moderna vaccine as a booster as the U.K. is now in the grip of the Omicron variant. I understand the Moderna is not the same type of vaccine as the AstraZeneca but I’m terrified of triggering another severe pain flare.  I am already housebound, and bed bound most of the day.

Should I refuse the Moderna vaccine?  I was wondering if any of your Arachnoiditis patients had reported adverse reactions to the Moderna vaccine.

Many thanks, LD

ANSWER

Dear LD,

I do not recommend ANY vaccine for a person with MRI-confirmed AA.  Simply put, persons with AA have too much autoimmunity and spinal canal inflammation for any vaccine.

Best wishes,

Forest Tennant

Dr. Tennant,

Along with other anti-inflammatory treatments (meloxicam, LDN, and cannabinoids) I have found that hyperbaric oxygen treatment to be very beneficial.  I would appreciate it if you could address this treatment for the larger community.  I live pain free with these combined treatments and lots of walking.

Thank you, AW

ANSWER

Dear AW,

I’m posting your successful treatment.  Your program makes sense as it fits the 3-component treatment protocol for AA:

  1. Suppression of inflammation (Meloxicam)
  2. Restoration and regeneration of damaged tissue (hyperbaric oxygen)
  3. Pain relief (low dose naltrexone (LDN) and cannabinoids

Thanks so much for sharing.  You are a testimony to successful treatment of AA.  We can’t cure the disease, but we can usually control it.

Best wishes always,
Forest Tennant