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 veractinc@msn.com , fax to 626-919-7497, or mail to:

The Tennant Foundation

Arachnoiditis Research Project

336 1/2 S. Glendora Ave.

West Covina, CA 91790-3043

 

Hi Dr Tennant, I hope you are doing well with all going on! My mom has arachnoiditis for close to 20 years now and recently two of the fingers on her left hand are pulling downward. I looked online and it seems to fit the diagnosis of Dupuytren’s contracture. It is some type of contracture. Can this be caused by the arachnoiditis and is there any suggestions on what we can do to help this? She is under a pain management Drs care and takes multiple supplements you suggest and maximum pain meds. Thanks, MP

ANSWER

Dear MP,

Dupuytren’s is a very unusual disease. Some experts believe it has an autoimmune foundation. If this is the case, AA could be responsible although you are the first to bring this possibility to my attention. My first recommendation is to have a blood panel of cortisol, pregnenolone, progesterone, DHEA, estradiol, and testosterone. Anytime a person with AA has an unexpected event, a hormone panel should be done, and any deficiencies should be replaced. My second recommendation is to review your medication program and make sure you are taking medication from each of these 3 components: inflammatory reduction, tissue rebuilding, ad pain control.

Best wishes,

Forest Tennant MD, DrPH

Good day Dr. Tennant,

I just had my physical and was concerned with a low count WBC. The normal range is between 4.8 and up. Mine was a 4. Do you think this was a result from arachnoiditis? I don’t think I have ever had a count done before. With this virus going around my concern is that my body might not be able to fight it off. My doctor said unless it gets to a 3 then I would be concerned. Do you know?

Thanks, PS

ANSWER

Dear PS,

Until lately few persons with pain problems have had their white blood cell (WBC) counts done.  What you relate, however, has been observed by me on many occasions.  AA may develop autoimmune deficiencies including a low WBC.  This is important to know because it makes you more susceptible to infections including COVID-19.  I have always encouraged persons with AA to start prophylactic antibiotics at the first sign of an infection, get flu vaccines, and take lots of vitamin C.

Best wishes always, Forest Tennant

Dear Sirs, good morning.

I write from Italy and I learned about your Foundation through the Facebook group on Arachnoiditis to which I signed up.

Four years ago, I underwent L4-L5 spondylolisthesis for isthmic lysis. Unfortunately, in the post-operative a hematoma was formed which was never removed. I was discharged with CES symptoms and diagnosis.

MRI was done only 20 days after he confirmed the hematoma. After 6 months another MRI diagnosed and confirmed chronic AA. Unfortunately, my neurologists don’t give it much importance.

I wanted to ask if there is a difference between simple arachnoiditis and chronic adhesive arachnoiditis? I currently have many more pains in the feet, calves, perianal area and in the back. If they can serve, I can send the MRI.

I ask you also is there any cure that can control my pain a little?

Thank you very much and best regards.

With gratitude, FB

ANSWER

Dear FB,

Be clearly advised. We have the knowledge and tools to help every person who develops arachnoiditis (ARC) and adhesive arachnoiditis (AA). First AA is the major issue. It is the inflammatory merger of cauda equina nerve roots with the arachnoid-dural covering in the lumbar-sacral region of the spine. Arachnoiditis is inflammation of the arachnoid-dural covering of the spinal canal, and it is most common in the neck. There are no cauda equina nerve roots in the neck, so AA doesn’t occur in this location. Your symptoms and history highly suggest that you have AA.

You are welcome to send us your MRI. Your doctors need to take AA most seriously as it can be a horrible, progressive disease with a short-life span. Our protocols are now quite well known, and your doctors should start you on our medical protocol. Our “Handbook to Live Well with AA” is available on the internet and our website will be very helpful to you.

Best wishes,

Forest Tennant MD, DrPH

Dr. Tennant,

Thank you for everything you have done for me.  I have just read your new Bulletin 14 and have a question.  I work for a small cancer center so I presented this bulletin to my Radiation Oncologist and asked him if he thought that radiation would be an option. He feels that it would work as we have treated meningiomas and keloid scars with great success.  Is this something that has been tried?  I would be so willing to be a guinea pig.

Thank you, S

ANSWER

Dear S,

I’m delighted to hear that you and your doctor are interested in attempting some radiation with adhesive arachnoiditis. You mention keloid scars. The concept would be similar, and I highly encourage radiation attempts particularly in the cases that don’t respond to what is becoming standard medical treatment with anti-inflammatories, anabolic agents, and analgesics. For example, those patients with AA who are in the severe and catastrophic categories can hardly be worsened by trials of radiation. These patients have nerve roots imbedded in scar tissue, and to date, no help except palliative care has been helpful.

Please share this note with the radiation oncologists. We need them!

Best wishes,

Forest Tennant MD, DrPH

Dear Dr. Tennant:

I am having crazy electric hand-shocks, and twitching-eye flashes. My left eye is 20/20 and my right eye is AA foggy {under care of Dr. XX, my ophthalmologist, (but doesn’t know Arachnoiditis from tooth fairy.}  Body has crazy twitching, too. Dr. C is my new pain doctor, works for Dr. 2 (who is a jerk—but please don’t tell anybody I said so, even if my wife agrees, and JE agrees, who is my AA friend and has contacted you. Can’t see her, only appointments via phone.

Difficult to write, to read, and control typing. What medicines should I use? Driving me crazy. I wrote this a dozen times. My fingers jerk and slap the keys creating weird words and losing my story.; Please help me.

How did I ever function in the Apollo Astronaut Program when back in 1969 I accurately predicted an accident? Now I can’t think. Without this spell checker I am dead in the water.

What do you suggest? For twitching, and jerking, and all? Hard to concentrate and to focus even with one very good eye. Sorry I blabber on.

That was weird. I apologize. I wandered to my past life that was pretty darn good.

First problem is electric hand and finger shocks, second problem is right eye foggy vision. Left is eye is 20/20. Electric shocks cause hands and fingers to jump. The shocks make fingers burn, snap, and jump. Foggy eye makes vision movement hard to control. The combination is tough to focus.

Going now. Hope I make sense. K

ANSWER

Dear K,

You and a lot of people who have done great things in their lives have lost a lot due to the horrible disease of adhesive arachnoiditis (AA). All the symptoms you describe can be due to AA. One of the things I recommend when persons complain of jerks and twitching is to obtain a magnet (10-pound pull). Many persons with AA and jerks or twitches can either stop or prevent them by rubbing the magnet up and down the spine. AA forms a mass or masses inside the spinal canal that interferes with spinal fluid flow. We also recommend a trial (10 days) with acetazolamide for persons with blurred vision.

I’m attaching one of our bulletins on physical measures. Remember, every person with AA must be on a 3-component, medication program. Bulletin 15 is a summary of the various medications that AA persons are using. Review your medication program and make adjustments.

Best wishes, Forest Tennant MD, DrPH

Hello Dr. Tennant,

I was given your information by a former patient as I have been suffering for 8+ years with right lumbar pain that will not go away. My story is two previous epidurals 20 years ago with one that took several attempts and failed to “take” on the left side of my body until I laid on my left side. I’ve always been an athlete and now cannot walk the grocery store without significant pain. Rolling over in bed is excruciating and with certain movements, even the slightest feels like electricity shooting in the area. Oh, I was also dx with hEDS in 2015. I’ve been researching AA since learning of it just last week and have joined a couple support groups on fb. I answered the Tennant questionnaire and scored 6 out of 7. I’ve been seeing pain management for 9 years and have had multiple steroid injections and currently treated with RFA; the last one did not last as long as the others, my next option is either pain pump or stimulator or facet joint replacement. That’s what several doctors have told me is wrong, I have facet joint arthritis/hypertrophy and there’s nothing they can really do other than what is being done.

Could you possibly help me, I am at my wits end?

Sincerely, HR

ANSWER

Dear HR,

Since you scored 6 of 7 questions on the AA screen, you should go through a series of steps before you succumb to an invasive procedure or stimulator.

You simply must find out if you have adhesive arachnoiditis (AA) as well as EDS.   Six out of 7 almost assures that you do have it.  Do you have a lumbar-sacral contrast MRI?  If so, it needs to be reviewed by an AA specialist.  Whether or not you have an MRI, you need to find out if you have active neuroinflammation since AA is an inflammatory disease of the lower spinal canal.  You should have 2 medication trials.  One is a 6-day Medrol® dose pak and the other is 2 consecutive days of ketorolac injections (30 mg each).  If you improve with either trial, you have demonstrated that you have neuroinflammation and need to go on the AA protocol.  I’m attaching our most up-to-date starting protocol for AA as well as physiologic measures we recommend.

In summary, every person who has a spine disorder such as arthritis and chronic pain must determine if they have AA.  Once it is determined you have AA, you need to start specific physical measures and start the AA medical protocol.  You also must determine if you have the Intractable Pain Syndrome as it is this advanced, pain condition that may require a stimulator if you don’t find good relief with the AA medical protocol.

I realize all this may sound complicated.  Go over this note with your family and physician.  Our “Handbook to Live Well with AA” is available on the internet and our website will help guide you.

Best wishes always, Forest Tennant MD, DrPH

Hi and thanks for all the great information on how to deal with arachnoiditis.  Hope you are staying healthy during this pandemic. I plan to try the low-dose Naltrexone sometime after this crisis passes.  Sounds like it could be effective. I was wondering if you knew of anyone treating arachnoiditis with a drug used for Myasthenia gravis, pyridostigmine, which apparently helps nerve signals get to muscles? Sincerely, S

ANSWER

Dear S,

I’m not aware that pyridostigmine has been used for AA. Myasthenia gravis is a neuroinflammatory disease as is AA, so I am hopeful that some of the drugs used for myasthenia gravis will help AA.

Best wishes, Forest Tennant MD, DrPH

Dear Dr. Tennant,

Is methylprednisolone in the “dose pack” oral form effective for treating arachnoiditis? My pain management doctor gave me a prescription for one pack, for a flare, if I had a bad one. Other than that, he is only offering a SCS (spinal cord stimulator) for the pain, although now with the virus any more thinking about that is on long term hold. It seems that I am tilting at windmills trying to get a doctor to help with therapies or find a doctor who really knows anything about arachnoiditis beyond conventional treatments of pain meds or the spinal cord stimulator.

I have purchased some pregnenolone but have been wary of taking it as I am taking 1200 mg of gabapentin per day. (I also have BPH) I just am not sure if taking the pregnenolone would interact or compound the above mentioned. Any advice would be appreciated. I know you can’t give direct medical advice, but your thoughts would be appreciated.

Thanks, B

ANSWER

Dear B,

There are 2 corticosteroids that control the inflammation of adhesive arachnoiditis: methylprednisolone and dexamethasone.  I recommend that every person with AA take 1 to 3 dosages of one of these 2 corticosteroids each week.  If you can’t get a doctor to prescribe them, obtain a product called “Adrenal Cortex” from a health food store or online.

Every person with AA needs a trial of pregnenolone.  The dosage is 200 to 250 mg a day.  This hormone makes progesterone which is critical for AA control and pain relief.

A spinal cord stimulator is for persons who have not found relief with the standard, 3-compnent medical protocol and who have the Intractable Pain Syndrome.  You need to get our “Handbook to Live Well with AA” available on the internet and familiarize yourself with the 3-component medical protocols on our website.

One last point.  A methylprednisolone (Medrol) dose pak is excellent for a severe flare.

Best wishes always, Forest Tennant MD, DrPH

Hello Dr. Tennant, First, I would like to thank you for all the time you spend researching and putting together bulletins to help with treatments. A little while back you had sent out a bulletin stating about taking Methylprednisolone at 8mg five days a week. How would you recommend that be taken through the course of 7 days? 5 days straight with 2 days off? Or break it up with 3 days on 1 day of 2 days on with 1 day off? Thank you so very much for any insight you may provide. J

ANSWER

Dear J,

I prefer every other day for methylprednisolone. Ketorolac can be on the off days.

That said, some persons with AA will have to take their methylprednisolone for 3 to 5 consecutive days with only 1 or 2 off days. Each person is somewhat different. Keep in mind that we believe methylprednisolone or dexamethasone are essential and should be taken at least 1 or 2 days a week to control the inflammation of AA and prevent progression of the disease.

Best wishes,

Forest Tennant MD, DrPH

Dr. Tennant, I pray that this email finds you safe and well. These are scary and uncertain times. I remember reading that one common symptom of AA is a “pinch” feeling in the lower back. I am guessing that the pinch feeling is the adhesions being stretched. Please correct me if I am wrong. For a while now I have been feeling that pinch in the middle of my back. I find this rather alarming. If it is adhesions, am I going to die? I’ve read about difficulty with the lungs and heart and I’m wondering if the adhesions are somehow responsible for those complications. Thank you very much. DN

ANSWER

Dear DN,

I’m very glad you have contacted us. The symptoms you describe won’t kill you, but it could be a symptom that indicates a worsening of your condition. You need to review your treatment program. Are you doing daily walks, stretching, water soaking, magnet rubs? Are you taking at least one medication from each of the three recommended treatment components:

  1. suppression of inflammation
  2. tissue rebuilding (neuroregeneration)
  3. pain control

For the next 10 days make sure you are doing daily physical measures and taking at least one medication from the 3 treatment components. Then re-evaluate your “pinch”.

Best wishes,

Forest Tennant

Dear Dr. Tennant,

We just received your latest bulletin on special MRI’s to detect arachnoiditis.  I previously sent you information about my wife Karen, and you thought it was a good chance that she has arachnoiditis.  We live in central Pennsylvania (State College).  Do you know the nearest facility that can perform the special MRI?  Also, what diagnosis do insurance companies need to pay for the MRI?  Thank you again for all your efforts.

Thanks, CA

ANSWER

Dear CA,

Any physician can order what is called a “lumbar-sacral MRI with contrast”. Insurance companies pay for the MRI if the patient has symptoms of lumbar-sacral spine disease. Symptoms include back pain, leg weakness, and bladder dysfunction. If you get an MRI, we will be pleased to review it. Your state has big health monopolies, so finding a doctor to help with arachnoiditis may be difficult. Consequently, you need to familiarize yourself with physical measures and the non-prescription drugs that AA patients report to be effective.

Best wishes,

Forest Tennant MD, DrPH

Dear Dr. Tennant,

Please help me understand how Arachnoiditis is a tumor. I don’t get that. I’ve had close to 30 cuts to my spine bc of spine surgery and lumbar shunts. I’ve had several brain surgeries too. My adhesive arachnoiditis is end stage. I just had a lefty SI joint fusion Dec 31st and I’m way worse now. I’m miserable and on morphine 30mg er 3 times a day and oxycodone no tylenol 20, 4 times a day. I have empty sac in my lumbar 3 or 4 levels and I have spinal fluid seepage in my soft tissues. I’m just wanting to help as many as I can.

Thanks, L

ANSWER

Dear L,

First, in medical practice the terms lump, clump, tumor, and mass are essentially interchangeable.  Perhaps the term tumor is too associated with cancer to be used.  For example, a breast “lump” is often called a tumor or mass.  Tumors or masses are often classified as cancer or non-cancer.  Years ago, the adherence together of cauda equina nerve roots was labeled clumping rather than tumor or mass formation.  Also, the “gluing” or “sticking” together of the clumps to the arachnoid-dural, spinal canal covering was simply labeled adhesions.  The actual description of a mass or tumor as a result of this inflammatory process was never called to attention.

My issue is that a simple clump or adhesion trivializes or avoids the seriousness that tumor or mass formation implies.  The real pathologic lesion of adhesive arachnoiditis (AA) is a tumor or mass that entraps nerve roots and consists of multiple elements:

  1. cauda equina nerve roots
  2. inflammatory cells and exudate (pus)
  3. adhesions
  4. arachnoid-dural covering
  5. fiber and scars

I call serious attention to tumor and mass formation, since the mass can grow and expand if its driving force, inflammation, is not controlled.  The tumor or mass (you pick your term) will capture and entrap additional nerve roots and cause additional pain and neurologic dysfunction.  The mass or tumor can also erode the arachnoid-dural covering of the spinal canal permitting spinal fluid to seep out.  A mass or tumor in the spinal canal interferes with spinal fluid flow and causes headaches ad blurred vision.

My reason for bringing out these facts is clear.   Too many medical practitioners, patients, families, and administrators in the health system either don’t know what the term “adhesive arachnoiditis” means, or they don’t take it seriously.  All parties need to know that AA isn’t just a mere “clump” of nerves with a few adhesions.  It is a mass or tumor (call it whatever you like) that contains multiple elements and has the potential to expand, grow, and progressively cause pain and disability.  Simply put, the masses of AA in the spinal canal need aggressive control of inflammation and promotion of tissue healing.

Please educate all parties about the pathologic process of inflammation producing a mass that contains entrapped nerve roots, spinal canal covering, exudate, and scarring.

Best wishes always, Forest Tennant MD, DrPh

RESPONSE

Thank you so much it makes sense this way!! We are all so grateful for your work! I’m in end stages and was never properly treated so I wanna help others before they get there! L

Dr. Tennant,

I hadn’t reported back to you yet because I’m really not sure which medications have worked the best. Overall, my pain has reduced as I have not had any overwhelming surges of electricity in the past two weeks which is unusual, especially during the full moon phase which is almost always the worst.

It’s also hard to tell because I started taking 50mg of CBD oil three weeks ago. Plus, now my LDN dose is up to 4mg. I haven’t yet started magnesium or DHEA since I am trying to add things slowly to see what works but I have been so desperate for relief that I finally started taking a few at a time. I personally think it is a combination of all three.

So … I would say that they definitely could be at least partially responsible for the prevention of unbearable pain. Since they are inexpensive, I would agree that they should be added to an overall treatment protocol.

As always, thank you so much for your continued support!

Sincerely, J

ANSWER

Dear J,

You are on the right track.  Our research has recently learned that the dose of naltrexone (LDN) can go up to 7mg given twice a day. A higher dose on LDN may be what you need.

Best wishes always, Forest Tennant