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 and Education Project“.

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

The Tennant Foundation

Arachnoiditis Research and Education Project

334 S. Glendora Ave.

West Covina, CA 91790-3043

 

Hi Dr. Tennant,

Has anyone tried ultrasound successfully for adhesive arachnoiditis?

Thanks, ST

ANSWER

Dear ST,

I’ve used ultrasound on many adhesive arachnoiditis patients. It is a great adjunct to the medical protocol we use.  I particularly believe ultrasound helps heal spinal fluid leaks.  I usually put a corticoid or other hormonal cream under the ultrasound.  I also like to rotate it with infrared.

For your information they now make some ultrasound devices for at-home use. They cost $200-$400.  They are highly recommended.

Best wishes, Forest Tennant

Dear Dr. Tennant:

Thanks for the info Dr. Tennant.  Do you see many patients that also have leaky gut with AA?  My leaky gut started about 9 months after my 3rd and final surgery.  When I eat, some proteins get by.  They seem to enhance pain in my weak spots.  Back, legs, joints, and sinuses.  I am highly allergic to gluten, preservatives, bread, and pasta.  I believe you talked about the interference with autonomic nervous system as the potential culprit.  Is this the case?  Is my leaky gut unsolvable and connected to my AA?

Thanks, BF

ANSWER

Dear BF,

The intestine has a complex neurologic control system.  Some of the control is from the vagus nerve which goes directly from the brain down through the neck and chest to the intestine.  Other nerves go from the lumbar cauda equina nerve roots to the intestine.  Unfortunately, the cauda equina nerve roots are the ones that can become entrapped in the nerve root clumping and adhesions of AA.  You describe a typical complication of AA.  Many patients must eat a “gluten-free” or “almost gluten free” diet.  Above all, almost every AA patient will need to take some probiotics from time-to-time.  Yogurt, cottage cheese, and ice cream/sherbert can also be helpful.

AA patients need to be on a protocol which includes antineuroinflammatory, neuroregeneration, and pain relief medications along with spinal fluid flow exercises to keep all complications, including gastrointestinal ones, in check.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

Thank you very much for taking your time to help me.

Sadly, I have not been able to find any local Dr to treat me.  Seems the Affordable Care Act is neither affordable nor provides ANY CARE!

Consequently, I have dropped my health insurance and am going to begin investing in myself in a wellness program to heal me.

Ironic, just before the holidays my pain doc cut me loose as my health has been deteriorating since they began screwing with my meds THAT WORKED SO VERY WELL!

I have been taking a concoction of natural and homemade remedies. Will need pain relief still but have no idea where to receive it, and I really do not like the option of going to the street to buy my pain meds as who knows what one will receive?

I’m sure the government’s new eugenics health care system will thin out the herd of the most fragile individuals.

Wishing you a very blessed and prosperous New Year!

Blessings! S

ANSWER

Dear S,

Patients who have been cut off of opioids have been finding non-opioid alternatives and some have been going to foreign countries to obtain opioids.  Unfortunately, some have given up and committed suicide.

Be advised.  Kratom is a non-prescription opioid, and it is now widely marketed.  I know of many patients who have been cut off of opioids who take kratom and other non-opioid pain relievers to stay comfortable and function.  Our website lists several non-opioid alternatives. Don’t give up. We are getting better non-opioid or low dose opioid alternatives about every week.

Best wishes always, Forest Tennant

Thank you so much Dr. Tennant.

I gave the information to my Doctor and he has started me on low dose prednisone once a day. I hope this can help with the inflammation as well as any leaking spinal fluid as well as the odd sensations I been having for almost three years since my ablation and transforaminal injections. I have to say Adhesive Arachnoiditis is a very, very bad disease and truly your dedication is beyond words to say how much respect I have for you. I am trying my best to gain my health back but know this is a life challenge for me. I truly appreciate all your help and wish you a great New Year.

Sincerely, KE

ANSWER

Dear KE,

Prednisone will probably stop leakage, but it often doesn’t enter the spinal fluid in a high enough concentration to help dissolve adhesions and suppress neuroinflammation.  After a month or so, you may wish to switch to low dose Medrol® (2 to 4 mg) on 3 to 5 days a week.

We’re getting ready to send out some bulletins and treatment alerts on spinal fluid leakage.  Be on the lookout for them.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

I wanted to thank you, I was able to get a prescription for a Medrol® pack from my doctor – it is like a miracle! It’s the first time I haven’t felt pain in two years. I can think clearly again which I haven’t been able to for two years. My husband is surprised that I can move better again! I had almost stopped being able to.
At first (in October, and before Christmas) my doctor would only prescribe prednisone as she said it was stronger, despite my telling her Medrol® absorbs better for my condition. Two days ago, I was prescribed the Medrol pack finally. The prednisone never got rid of the pain and simply seemed to stop working last time.
Thank you again, I have been suffering for two years, and I finally feel some relief.  They haven’t prescribed LDN (low dose naltrexone) for me yet, but I am trying to get it also. From my understanding it works similar to Medrol® and perhaps safer long term.  Thank you again, KM

ANSWER

Dear K,

Once we find that Medrol (methylprednisolone) relieves pain and increases “range of motion”, we highly recommend a dose of 2 to 4 mg on Mon, Wed, Fri.  Also, we like to see the patient take turmeric/curcumin, serrapeptase, or ketorolac on off days. If you can get LDN, you should continue Medrol® 2 or 3 times a week, and you will have an excellent program.

Best wishes always, Forest Tennant

Dr. Tennant,

I am having trouble finding a doctor to treat my arachnoiditis. Back Drs want to give me steroid injections, no one wants to give me any of the meds you prescribe. I’m going to try the natural items.

What mgs of serrapeptase should I start with and what mg of DHEA is a starting dose?

Also, what is the problem with steroid injections?

Please email me back, D

ANSWER

Dear D,

First there are 2 kinds of corticosteroids which doctors may wish to give you. Number one is epidural.  I don’t recommend these in patients with documented AA.  Number two is injections in the tissue that lay between the spinal canal and skin.  These are sometimes referred to as “local” or “trigger point” injections.  These can be very helpful to an AA patient, particularly if the patient has some spinal fluid leakage or seepage.

You and every other AA patient should be clearly advised that more and more non-prescription, self-help medicinal agents are becoming available. I’ve yet to see an AA patient who could not benefit from one or more.

Serrapeptase is an excellent anti-neuroinflammation agent. Follow the instructions on the label.  DHEA, to be effective requires a dosage of 200 mg or more a day.

Here is my key message. Successful AA treatment requires that a patient to at least one medicinal agent from one of these 3 categories:

  1. Anti-neuroinflammation;
  2. Anabolic-neuroregenerative;
  3. Symptomatic pain control.

Let me know your progress.

Best wishes, Forest Tennant

Dr. Tennant,

I want to thank you for the updates and welcome any information you may have. I tried to send you attachments with my MRI but have been unable to attach them. I am sending it in by mail along with the questionnaire. I have been implementing my own home regimen. I have been taking turmeric/curcumin and DHEA supplements. I have been feeling better and am encouraged by the short-term results. I have an appointment soon with my pain management doctor who has said that he will work with me on this. I can’t thank you enough for your help.

Sincerely, CS

ANSWER

Dear CS,

I’m delighted that you are getting started. I’m also glad that your pain doctor is interested as I believe AA is far more common than realized.  The most important thing to know about treatment of AA is to take medicinal agents from 3 different categories and do daily exercises that enhance spinal fluid flow.

The 3 categories are:

  1. Anti-neuroinflammation;
  2. Anabolic/neuroregenerative;
  3. Pain control.

I believe it is more important to know the categories of treatment rather than try and pick “the best one”.

Please share this note and our materials with your physician.

Best wishes, Forest Tennant

Dear Dr Tennant,
Just a line to say that I began taking LDN three weeks ago and the results have been remarkable. It has reduced my symptoms by 95%. If ever my low back muscles start tightening (standing for anything more than half a minute is still a difficulty), I pop a minimal amount of Valium® (half a tablet) and it does the trick. I continue walking briskly for about a mile every day and add a few stretches into the bargain.
I may be wrong, but I believe opiates are contra-indicated for LDN as they are likely to negate the effects of the low dose regime. Could you kindly clarify this in your next bulletin?
Best regards, R

ANSWER

Dear R,

I’m very glad LDN is working for you. My next recommendation is to obtain some OTC bovine adrenal extract and curcumin/turmeric. Both of these agents in addition to LDN can be extremely helpful in obtaining some curative effects. I don’t recommend opioids with LDN, but one can take ketorolac, PEA, and CBD oil with it for additional pain relief.

Best wishes always, Forest Tennant

Dear Dr Tennant,
I communicate with you because I desperately need your help again.

I have been suffering from post-operative arachnoiditis for 2 years and following your protocols in the last 10 months. I have seen a real improvement. I was able to live a normal life, working daily and supporting my family in all aspects of life. And all these with daily curcumin and serrapeptase, zero painkillers and only 75mg pregabalin/day- plus some cortisone and ketorolac for 2-3 days per month.

Twenty days ago, I made an electroaccupancture session in the hope that it would help me with the chronic pain. From the following day, however, the pain and the neurological symptoms in my lower spine and legs were ejected to levels that I have never experienced until now. I’m in bed with 400mg pregabalin daily, daily anti-inflammatory and big doses opioid painkillers and things are getting worse every passing day.

From your experience, do you think something went wrong in the session or was the electroaccupancture a NO-NO for ARC?

Thank you in advance and looking forward for your opinion. V

ANSWER

Dear V,

Unfortunately, any electric current administered to an AA patient may activate and create neuroinflammation. I highly recommend the 6-panel hormone test. Replenish any that are low. Above all, I recommend a 6-day methylprednisolone (Medrol) dose pack. Hopefully this will get you back to where you were. Furthermore, if 6 days of methylprednisolone helps, you should maintain on a low dose (2 – 4 mg) on 3 to 5 days a week.

Make sure you are taking at least one drug from each of these categories:

1. anti-neuroinflammation;
2. neuroregeneration (anabolism);
3. symptomatic pain relief.

You are a candidate for therapeutic trials as outlined in the attached bulletin.

Best wishes always, Forest Tennant

Dear Dr Tennant,

I came across your website on this topic and found the information extremely informative. I would be really grateful if you could kindly send me a copy of the medical protocol that you referred to in the handbook?

It would appear that good quality information and advice on treatment of this condition is very hard to come by in London.

Many thanks for your kind assistance.

With best wishes, Dr. N

ANSWER

Dear Dr. N,

I’m attaching the diagnostic and treatment protocols we use for adhesive arachnoiditis (AA). I got into dealing with this problem some years ago as over half the patients who attended our palliative care, intractable pain clinic had it. I no longer believe this is a rare condition. Although new and different, the protocol is no more complex and risky than the treatments for asthma and diabetes.

I really appreciate your interest as I believe physicians everywhere will have to learn about and participate in the treatment of AA.

Best wishes always, Forest Tennant

Dr Tennant,

My physician is concerned about the use of long term Toradol® use. Are there any studies or any information that you could provide on the benefit of Long term Toradol® use for arachnoiditis?

Thank you, A I

ANSWER

Dear A I,

Your physician is correct. We only recommend low dose ketorolac (Toradol®) on 1 t0 3 times a week. You can also intermittently stop Toradol® for a month and restart.

Be clearly advised. Ketorolac (Toradol®) may be the only drug that is really effective in some arachnoiditis patients. Also, be advised that we usually have ketorolac made as a troche which is safer than injections. The benefits usually outweigh the risk in arachnoiditis patients.

In our protocols we have some other agents that can be used besides ketorolac (Toradol®). Please share this information with your physician.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

Hope you had a great Xmas and I wish you and your family a very Happy New Year! We all love you so much for all you do to us, abandoned patients around the world!
I have noticed that ever since I got injured into my spine by that epidural needle, my D dimer that is used to measure thrombosis likelihood has been very elevated, and I wonder if there is any connection. It would be good to measure a few other patients and see if there is any correlation. I would not be able to explain anatomically what it means, but what if it is also a marker of neuroinflammation. This is just a layman thought as no doctors can explain why I have an elevated d dimer, but I also have no thrombosis.
Happy holidays!

Regards, D

ANSWER

Dear D,

I have thought about your situation, and it makes perfect sense. In AA small, toxic, inflammatory nerve root particles are shed into the spinal fluid. These are carried by spinal fluid up the spinal canal to be emptied into the blood stream. Unfortunately, these bits of toxic, inflammatory nerve tissue particles cause an autoimmune reaction, and alteration in blood clotting is often a component of an autoimmune disorder. My guess is that other AA patients will have your same situation. It should be a good marker for AA. Please share my thoughts with your physicians.

Best wishes always, Forest Tennant

Dr. Tennant,
I found you on YouTube, which led me to your website. I had a incidental Dural tear on 1-11-17 in surgery for L3-4 disectomy/laminectomy. Even though he sutured it, I continued to leak CSF fluid for 8 months before he acknowledged the problem. I received a blood patch in Nov. of 2017, which held for a couple of months. I am currently waiting for a 2nd patch.

I recently got diagnosed w/ Incomplete CES & mild arachnoiditis at the area of the Dural tear (MRI confirmed). This is a Worker’s Comp injury, so I must prove the cause of the arachnoiditis/CES before it is accepted for treatment & covered by them.

I have been complaining of these symptoms since 2weeks post-surgery, & I keep telling all my Dr.’s that I feel I’m getting worse. In your opinion, did the Dural tear cause the arachnoiditis/CES or are the 2 related? I have to prove they are related to get treatment, although my surgeon has said there is no cure.

Thank you, J D

ANSWER

Dear J,
It is well known that dural tears may cause arachnoiditis. In my experience, the need for a blood patch for a long-term spinal fluid leak id highly associated with arachnoiditis.

While a total cure is not common, we now have arachnoiditis treatment protocols that significantly controls the disease. Based on your history and symptoms, I believe you should be in specific treatment for arachnoiditis:

1. suppression of neuroinflammation;
2. promotion of neuroprotection and neuroregeneration.

If you are not on daily opioids, we highly recommend low dose naltrexone with a neuroinflammation suppressing agent and one or more non-opioid pain relievers.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,
I’m providing important information on your low dose naltrexone (LDN) bulletin. There are some patients that can take LDN and opioids concurrently. I am one of them. Patients that choose to try opioids and LDN at the same time need to be aware that if their body doesn’t allow them to take them concurrently, they could suffer withdrawal symptoms until the LDN leaves their body. They need to ensure that they don’t take more opioids to try to treat the pain during that testing period or there is the risk of overdose. i.e. they need to stay at the same opioid dose they have been taking (no more). I’ve been on a LDN dose of 2.5 mg a day for a couple of years now. It doesn’t help with my pain but has greatly improved my sleep and my doctor believes it has improved my functioning. I also take MS Contin and Oxycodone (>90 MME per day).

FYI – I’ve recently been added to the CART group. I do not have AA but have empty nose syndrome with centralized pain and I suspect some of the treatments for AA could apply to my rare condition.

Sincerely, A

ANSWER

Dear A,
Thanks for your most informative note on low dose naltrexone. You are most fortunate that you can take opioids with it. Most patients cannot take even low opioid dosages while on naltrexone. Also, thanks for your tips on how to test whether you can do both.

With gratitude, Forest Tennant

Dear Dr. Tennant,
Hello, dear doctor, I have ARC. It initially developed in my lower spine after my first back surgery at the age of 11 then again after my second surgery above L4/5 at the age of 55. The pain was so debilitating the second time that I had a spinal cord stimulator implanted. I have had it for about 3 years now and my pain is under control.

My concern is that I am not taking any curative medication and I don’t know the best way to go about explaining my needs to my doctor. Which of your numerous publications would you recommend I have my doctor read so that I can be put on a regimen?

I greatly appreciate your research and advice. I wish that there were more doctors like you.

Sincerely, CG

ANSWER

Dear C,
You can go about your problem in several ways. I would inform your doctors that the need to treat ARC is so great that our Foundation has now funded a research and education project. Please download some of our materials from our website and show them to all concerned.
Let your doctors know where you can obtain compounded medications. Two of the best medications for ARC are proving to be low dose naltrexone and ketorolac.

To get started, obtain some of the OTC (non-prescription) curative agents and start them. This alone may stop progression of ARC. I particularly like curcumin/turmeric, Serrapeptase, pregnenolone, and DHEA. We can send you and your doctors our latest diagnostic and medical protocols.

Best wishes, Forest Tennant

Hello Dr. Tennant,
I mailed out my images today, you will get them tomorrow.
Also on the FaceBook group that I am in, one post states that you told them the total body vibrations are part of Arachnoiditis.
Soooooo… upon impact of my auto accident, I had this total body vibration with a humming, that started at the top of my scalp and went down my entire head, neck spine and my whole body to my feet. I could not hear anything else while this was happening, It lasted I am guessing maybe a minute or two. Ever since that day every time I lay down the vibration comes back and is very hard to sleep. All of the doctors but one, Think I’m nuts and have never heard of it. It’s worse when I lay on my left side… but happens any way that I lay down. Dr Middleton said that he thinks I nicked my spinal cord since I am so narrow in the neck and could have worsened with the collision.
Just wanted to add this to my other email!

Thank you, W M

ANSWER

Dear W,
Thanks for the information on vibrations. I agree with your physician that some major nerve was damaged in your accident. My current theory on vibrations is that a nerve or nerves damaged by trauma or inflammation may stop the natural flow of electricity up and down the nerve which is a biologic wire. When this occurs electricity can back up and cause vibrations. Vibrations can be very hard to eliminate. Certainly, you should try copper and magnets because they either attract or mobilize electricity. Some patients are getting relief from vibrations by use of some of the new medications marketed for “restless legs” syndrome. Over-time, it is possible that nerves can heal and normalize electrical flow.

Best wishes always, Forest Tennant

Dear Dr. Tennant,
I hope this message finds you and your wife well.
I have a question. I know due to the damage to our spinal cords, most of us are unable to wear a watch due to it “killing the battery” (I’ve not been able to ware one for about 7-8yrs now) due to our body constantly firing, but I also have a problem with cell phones.
My cell phones last me about 3 months top before it starts having problems even with a phone case cover.
Is this also a problem due to our condition? Even my new tablet (computer) does this when I use it.
I just find it interesting and aggravating that it’s only my electronic devices that do this. My husband never has a problem with his.
Best wishes and kindest regards, D C

ANSWER

Dear D,
One of my theories with neurodegenerative diseases is that of retained electricity. Nerves are, among other things, a wire that transmits electricity. If wires are damaged, entrapped, or otherwise blocked, electricity is retained or “back-up”. The retained or excess electricity needs to leave the body at some point, because the body continually produces more electricity. I believe this is also the basis for vibrations that are troublesome to many patients.

I recommend that patients help control their electricity by wearing copper or other metal jewelry. Magnets in shoes or even in a bed may be therapeutic. Water soaking is excellent as water pulls out electricity. Patients should hold metal (e.g. silverware) throughout each day to help eliminate retained electricity. A simple remedy is hold onto a brass door knob or car door a little extra time. Be advised that my theories may not be totally correct, but I don’t know of any physician who has an alternative theory.

Best wishes always, Forest Tennant

Hello, I have an 11-year old son with a diagnosis of Ehlers Danlos Syndrome, hypermobility type from a geneticist. He has had intractable pain for nearly two years now in his legs. Seattle Children’s Pain clinic has deemed it Amplified Pain syndrome and has said that the only treatment is physical therapy which we have been doing for several years now (he has had joint pain since he was a toddler, but this intractable pain is newer).

I recently read your article on EDS and Pain management and was hoping you may have some more information and guidance for us. I am also reading your self-help guides available on your site.

Thank you, K

 

Thanks for writing. It’s good that you have a EDS-Hypermobility diagnosis at a young age (son). I disagree with the point that physical therapy is “the only” treatment. I do believe you should do the physical therapy they recommend. If you don’t get the results you need (pain cessation, good function, school attendance), I recommend a specific, high protein/amino acid diet plus some natural herbs and other non-prescription compounds. I don’t like young people to use prescription drugs unless natural and non-prescription drugs fail to relieve pain, but micro-tears can occur in an 11-year old that may generate permanent pain. At present most of our information on our websites is for arachnoiditis. The natural and non-prescription agents are, however, the same for EDS/hypermobility.

In summary, I believe that EDS/hypermobility is a genetic, tissue degenerative disease that produces micro-tears and needs to be healed lest they create inflammation and persistent, even permanent tissue damage and pain in affected joints, spine, and muscle.

Best wishes always,
Forest Tennant

Hello, I hope you don’t mind my writing to you…my name is EC and I live in rural SW Iowa where we have limited medical specialists.

I am a 50-year old obese female and have experienced low back pain most of my adult life, but this past year it has gotten much worse.  It used to be something that would flare up once or twice a year and after a few days of rest and some muscle relaxants it would ease up and I could get back to normal life.  This last year it has been pretty much a non-stop, very painful problem which is affecting my life negatively.

Early this summer I couldn’t stand the pain and went to my PCP who ordered x-rays and told me I had a severe degenerative ‘thing’ going on and should see the orthopedic surgeon who comes out to our clinic once a month. He also prescribed a short round of prednisone (which relieved the pain for a couple months).  I saw the orthopedic surgeon and he confirmed degenerative disc disease and told me I could get injections into my spine to help.

Injections seemed scary to me so I just went on living with the pain and discomfort until I mentioned it again to my PCP last month (during a normal check-up for blood sugar, cholesterol level, etc).  He said I needed to go in for an MRI before they could do spinal injections.  I agreed to the MRI, still nervous about the idea of shots into my spine.

The MRI report came back and my PCP said the results showed things he wasn’t able to handle and that I should see the orthopedic surgeon again.  I made an appointment and saw him last week and the visit went terribly.  He started the visit by telling me he didn’t really care what the MRI said he just wanted to know what my symptoms were. When I tried to explain them he just kept cutting me off.  He didn’t remember seeing me a couple months prior and when I reminded him of that he flipped through my chart and just got angry with me telling me that I just have degenerative disc disease.  I asked him to please look at the MRI because my PCP had mentioned ‘nerve root clumping’ and I was hoping he could explain what that was.  He left the room for maybe a minute and came back to tell me “You don’t have any pinched nerves”.  I asked why the radiologist would write about nerve clumping and his response was ‘I don’t know.”.  I asked if he could prescribe a round of prednisone since it helped so much back in May and he yelled at me “Don’t take that anymore, it isn’t good for this.”  (I have only taken it once and still don’t understand his reaction to my question).  He then ended our appointment (which had lasted all of 5 minutes) by telling me to contact his office if I want the spinal injections.

I left confused and a bit shocked by his temperament, so I went to medical records to get a copy of the MRI report to read for myself.  (I have attached it to this email).  It mentions arachnoiditis as a possibility and after doing some research I see you are/were a specialist for that.  I am hoping you might have time to look over my MRI report and images and let me know what next steps I should take.  Perhaps a different kind of specialist than an orthopedic doctor?   Advice as to whether the radiologists report is all wrong (like the ortho I saw implied)?

Sincerely, E

Answer:

Dear E,

First, your story is “oh so typical” today regarding the disease, “arachnoiditis” (ARC).  This disease is emerging in the population primarily because common spinal condition such as chronic disc herniation, arthritis, osteoporosis, stenosis, etc. can develop into ARC.  If these chronic conditions go on long-enough they may cause friction and pressure on the nerve roots and arachnoid covering in the lumbar and sacral spine regions.  Your radiologist is “right up-to-date” as he recognized the cardinal sign of ARC on an MRI – nerve root clumping.

It is critical for you to know that prednisone not only helped you, but it also helps confirm the diagnosis of ARC.  The root cause of ARC is neuroinflammation.  Another course of prednisone is certainly in order, and a low dose 3 days a week may be very preventive in your case.  Prednisone isn’t quite as consistent as methylprednisolone, but they are both corticosteroids and on our recommended treatment list.

My advice is to avoid epidural injections when you already have ARC.  They could worsen your situation.  Your doctor’s behavior is common but becoming less so, as doctors get over the fright of ARC.  They have been led to believe the erroneous information that ARC is always doctor-caused, hopeless, and untreatable.  These are outdated beliefs.

Where you go from here is flexible as long as you get started on some agents that control neuroinflammation and others that provide neuroprotection and neuroregeneration. We can review your MRI and give you some recommendations.

Best wishes,

Forest Tennant

Hello, My name is M and I have worked as a surgical technician for the last 14 years. I was Dx with AA in 2016. At that time I was having chronic low grade pain and some leg weakness. My symptoms have now progressed and I have episodes of severe pain and cannot walk without assistance. The specialist that I waited 6 months to see said she really did not know much and told me that I was young and healthy and to get over it. I am now starting to have bladder and bowel incontinence and my episodes of severity, depression, hot flashes, and dizziness seem to be coming more frequently. My primary care has tried to take over my care since I told her what happened with the specialist but she is shooting in the dark! I need to give her some more info so that if there is treatment we can get going in that direction. PLEASE HELP!!

Best Regards, M

Answer:

Dear M,

Unfortunately, you demonstrate a message that all persons with AA or suspected AA must hear and fully understand.  AA is a neuroinflammatory disease. Once neuroinflammation occurs it may take 3 different pathways:

  1. resolve;
  2. continue at a low manageable level;
  3. progress or worsen at an unpredictable rate.

AA has another “ugly” trait.  It may go into remissions and exacerbations for no apparent reason.

Let’s get started.  Our No. 1 goal is to stop the progression. I recommend you go to your local health food store and get curcumin/turmeric (750 to 900 mg twice a day) and pregnenolone 100 mg a day.  These 2 agents will protect you while you educate yourself and enlist your doctor’s help.  Our protocols are attached, and our website has lots of education materials provided as a public service.

Ask your doctor to start a therapeutic trial with either methylprednisolone (Medrol® 6-day dose pak) followed by ketorolac for 2 days.

Frankly the protocol to treat AA is medically quite simple and it is rapidly being learned by primary care MD’s and NP’s most everywhere.  We can arrange for specialty consultation in California if necessary.

Let us know your progress.

Best wishes always, Forest Tennant

Dr. Tennant,

I am a nurse practitioner. I just watched Dr. Tennant’s videos on YouTube on Arachnoiditis. I was wondering if there are any resources on treating arachnoiditis through neurohormones? I have a patient who is struggling with terrible pain due to this condition and I was trying to find new ideas. I happened onto the videos on YouTube while searching the condition.

Thank you in advance, P, APN-FNP 

Answer:

Dear P,

I’m very pleased to receive your note.  Today, adhesive arachnoiditis (AA) is common enough that NP’s and MD’s in rural areas will have cases.  As of yet the emergence of AA as a significant clinical problem hasn’t generated specialists, but I suspect that day will come.  The purpose of our new “Arachnoiditis Research and Education Project” is to help practitioners and patients everywhere tackle this frustrating disease.

First, we are rapidly as possible developing materials to help.  You can find our bulletins, letters, and handbooks on our websites.  I’m attaching the current protocol which we use but is not on the website.

In dealing with AA, the first clinical rule is to understand that AA is a neuroinflammatory condition, and its control is paramount to some relief and recovery.  Attached are recent bulletins on:

  1. Hormone profile;
  2. Therapeutic trials with ketorolac and methylprednisolone;
  3. 10 protocol components.

Most NP’s and MD’s cringe at the thought that severe AA patients will likely have to maintain on low dose ketorolac and methylprednisolone.  Beside corticoids, other hormones that promote neuroregeneration and pain relief are almost essential. Included here are high pregnenolone and DHEA.  Human chorionic gonadotropin (HCG) and nandrolone are great helps to many AA patients.

In closing let me say that I’ve found great personal satisfaction in helping these poorly understood, desperate patients.

Best wishes always, Forest Tennant

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