We will publish up to 20 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 & EDS Education Project“.

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

The Tennant Foundation

Arachnoiditis & EDS Education Project

334 S. Glendora Ave.

West Covina, CA 91790-3043

 

Question 1:

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

Question 2:

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

Question 3:

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

Question 4:

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.

TH

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

Question 5:

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

Question 6:

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?  Anna

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

Question 7:

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

Question 8:

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

Question 9:

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 B

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

Question 10:

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 T

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

Question 11:

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,

SS

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