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

 

Dr. Tennant,

I have members of my group wanting to know if going to a chiropractor is a good idea if you have arachnoiditis?

ANSWER

Dear L,

If a person clearly shows cauda equina nerve root clumping on a contrast, axial MRI, I cannot recommend chiropractic treatment. Also, I cannot recommend hill climbing or weightlifting with over 15 to 20-pound weight. Why? Cauda equina nerve root clumping means that nerve roots are entrapped in a mass of inflammation, adhesions, and scars (fibrosis). In almost all cases some of the clumps are adhered (glued) to the arachnoid-dural covering of the spinal canal. Any significant stretching or pulling on the lower back risks pulling about the mass with entrapped nerve roots. If this occurs severe, permanent pain and neurologic damage may result. Unfortunately, no medical practitioner can be positive they can manipulate, stretch, or massage safely a person with documented clumping of cauda equina nerve roots.

In summary, every person who has suspected or verified AA needs to clearly know if their cauda equina nerve roots are clumped.

I regret my opinion, but I have seen too much tragedy with medical procedures and excessive exercise.

Best wishes always,
Forest Tennant MD, DrPH

Hi Dr. Tennant,

I am happy to report that I am doing exceptionally well on the protocol! I want to share with you that Ketorolac comes in a nasal form called Sprix and can be used for flares. Also, I started intermittent fasting to offset a little weight gain from the prednisone and it has helped tremendously with weight loss, energy, and my sense of well-being.

I have 2 questions:
1 – why does exercise cause my symptoms to return, when normally I am asymptomatic. I would love it if I could return to my pre-arachnoiditis workout routine.
2 – have you had any patients have more children after their diagnosis and how did they do? (without spinal intervention, of course)

Dr. P reviewed my most recent MRI and said the inflammation of the nerve roots is almost indistinguishable! Thank you for your life’s work!

Sincerely, K

ANSWER

Dear K,

Unfortunately, the development of AA when cauda equina nerve roots are entrapped in an inflammatory, adhesive mass does not permit strenuous exercise. Hiking, running, mountain climbing, cycling, and weightlifting among other strenuous exercises may worsen the condition by pulling apart the mass of entrapped nerve roots. Pregnancy is also a risk as it will require strenuous activity and epidural injections at delivery.

Best wishes always,
Forest Tennant

Hi!
I began a regimen based on your bulletins and correspondence. I have AA.
I have had fairly good pain coverage but started on Ketorolac twice a week and pregnenolone daily and I am less fatigued. I feel more energetic! I also, pursued improved CPAP sleep with modern machine with WiFi reports. I found I was still having way too many AHI events. I worked with my sleep Dr. Originally was 43 AHI per hr. Years ago, still 29 until the change and with increased pressure, and a new type of mask. Went from full face to a nasal mask and chin strap, I am having less than 2 AHI events per hour! In just over a 2-month change! All your advice has also helped greatly! For muscle spasms that turned to a regular daily event, I now take a low dose of muscle relaxant a few times a week toward evening. The spasms are under better control. I wear a back brace, if on a long car or plane trip. Use a cane for support when traveling; less falls, less scraped up knees and shins! I have a chair massage pad. I try to walk more. Have pool time when opportunity presents. If I am restless at night, I found a 5mg melatonin every night helps.
I use a McKenzie neck roll inside my neck pillowcase. It gives that neck support on turning.
There are more things I need to do yet, esp. with metal jewelry and rocking, but following your guidelines has been great. I had a bit of problem introducing my needs to my pain Dr. Of over 5 years, so last appt. My husband went back with me and my Dr. wrote the pain break through prescription for me, along with the muscle relaxants and renewed the Ketorolac. I have left the Foundations information with him twice now!

PS. I have documented AA on MRI, since 2011, but fear it has been around much longer. I had my spinal fusion in 1989, and by 1991, I had been diagnosed with FM for severe muscle pain 16/18 positive trigger points by my Rheumatologist. I understand now all those symptoms I had, and still have are probably AA instead.

Thank you for all you and your Foundation do to help people with AA, like me, help themselves and learn how to encourage help from our pain doctors.

Sincerely, SD

ANSWER

Dear SD,

I’m delighted to hear that you have made progress despite having AA for many years. I’m attaching a recent article I just published for medical practitioners. Please share it.

Best wishes always,
Forest Tennant MD, DrPH

Dear Dr. Tennant,

Greetings from Vancouver Island.

I am following a patient for functional medicine assessment and care. She has shared your protocol for adhesive arachnoiditis including use of adrenal steroids.
We have begun supplementation of her low DHEA and luteal progesterone deficiency with good tolerance. She, however, is not able to tolerate pregnenolone at a 25 mg oral dosage due to persistent headaches which did not resolve in a two-week trial. We will change to a trans dermal formula of pregnenolone and see if she tolerates this. Topical and vaginal pregnenolone is generally well absorbed as pregnenolone is very lipophilic.

She is taking PEA and following an anti-inflammatory diet with a nutritionist. She has also begun intermittent fasting to reduce inflammation, and for its posited effect on scar tissue through autophagy. I am comfortable supporting her with adrenal HRT for its neuro inflammatory modulation effects. In that process, monitoring downstream metabolites of steroidogenic hormones is a priority as Estradiol and Estrone levels can rise on high doses of pregnenolone and DHEA increasing risk for breast and endometrial hyperplasia / cancers.

Do you have other suggestions about pregnenolone tolerance? Have you seen good results with lower dosage of pregnenolone? Unfortunately, serum pregnenolone is not an available test in British Columbia and so it is not possible to test for physiological range. We will proceed by increasing dose as tolerated and measuring downstream metabolites.

Look forward to hearing any suggestions you might have.

Best to you, C

ANSWER

Dear C,

Thank you for your most informative and positive letters. Your enthusiasm and knowledge about neurohormones have “made my day”. I have found that adhesive arachnoiditis (AA) patients simply don’t get much better without hormonal therapy.

I have found occasional AA patients who can’t tolerate pregnenolone to the point that I don’t force its usage. Its main function I believe is its conversion to progesterone. We have started having some excellent results with medroxyprogesterone 10 mg BID on 2 to 5 days a week. To avoid any possible hormonal complications, I recommend hormones be taken 3 to 5 days a week with skipped days.

Life Extension has begun offering hormone and neurotransmitter panels which persons can obtain without a doctor’s prescription. This, to me, is a great advance in self-care.

We have a bibliography on neurosteroids on our website. A review of some of the studies of their neuroinflammatory suppression and neurogenic attributes is compelling. Lastly, I’m attaching an up-to-date clinical review of AA that I just published. Please keep me posted.

Best wishes,
Forest Tennant

Hello Dr. Tennant,

I’m 19 years old and I had my first beautiful baby girl May 14th but had a traumatic experience. I received the epidural and went numb from the waist down within minutes, causing her heart rate to drop and my blood pressure to drop incredibly low. It stabilized soon later, but when I began to push, her head got stuck in a ring of muscle in my pelvis for two hours, my epidural began wearing off in my hips, but my legs stayed numb. They ended up having to use a vacuum to get her out, and she had some head trauma but now is perfectly healthy. However, my health is declining with no evidence. My left leg numbness never wore off, and I began having numbness in my pelvis and stomach as well. I’m having severe brain fog and difficulty remembering what I’m doing and trouble completing daily tasks. I’ve had a spine and brain MRI, and both were seemingly clear. I feel emotionally and physically numb and I’m just hoping to get some answers.

Please help, SG

ANSWER

Dear SG,

Your symptoms sound like you have inflammation in your lower spinal canal. The best-known condition involving lower spinal canal inflammation is adhesive arachnoiditis (AA). Another condition which isn’t recognized by most medical practitioners is called “chronic cauda equina syndrome”. Based on my reviews and research into several hundred cases, I conclude that you can have inflammation of cauda equina nerve roots and/or some of the layers in the arachnoid-dural covering that don’t show on an MRI. The first signs of inflammation on an MRI may be very non-specific and may only consist of some enlargement, displacement, or asymmetry of nerve roots, and these MRI’s will be officially called normal.

What to do about your situation? First, it would be helpful if one of your doctors ordered a sedimentation rate, C-reactive protein, and what is known as a cytokine panel. These are inflammation markers. If any one of these markers is elevated, you have essentially confirmed spinal canal inflammation. I will be pleased to review your MRI as you are a good research subject!

My best recommendation is that one of your doctors prescribe the emergency treatment for suspected and/or potential AA. It consists of a 6-day Medrol Dose Pak, 3 consecutive days of ketorolac, and 5 days of medroxyprogesterone. If you improve on this regimen, you have established the presence of spinal canal inflammation, and have very likely prevented a full-blown case of AA.

I look forward to hearing from you.

Best wishes,
Forest Tennant

Hi,

I think I may have arachnoiditis. As well as EDS. I am a non-essential medical practitioner in Omaha, NE. Is there a doctor that uses the protocol that I can go to, or at least know the kind of back brace that is mentioned in your educational pdf that I read.

Love your work!
GM

ANSWER

Dear GM,

Doctors throughout the country are coming “on board” each week. Our recommendations can be done by any medical practitioner.

In June, the journal Practical Pain Management will publish our 2020 clinical update. Take it to your family and physicians. Attached is a new EDS screening test. Recent studies show that if only ½ apply, you have EDS. This is important because, if so, you need to get started on colostrum, vitamin B-1, B-6, B-12, and either pregnenolone or DHEA. There are non-prescription supplements that will compliment any measures prescribed by your physicians.

Also, we are starting a 2nd Research and Education project within the Tennant Foundation: Intractable Pain Syndrome. Check out www.intractablepainsyndrome.com.

I recommend soft back braces that are commonly used in sports and are available in sporting goods stores. Also, I recommend that back braces not be used on a continuous basis but when you take a long care or plane ride or go shopping or walk in unfamiliar venues.

Best wishes,
Forest Tennant

Hi Dr. Tennant,

I hope you don’t mind me contacting you. I have recently read the information you have put together reference supplements to take for intractable pain. (#9 – NATURAL and OTC PAIN RELIEF: FACT OR FANTASY)

I was wondering if what you’ve put down is ok to take alongside Pregabalin 600mg and Amitriptyline 40mg?

Many thanks, E

ANSWER

Dear E,

Yes. In fact, it will complement pregabalin and amitriptyline. I am a great fan of this combination as it tackles both ascending and descending pain. Perhaps you haven’t heard of these terms, but EVERY IPS (Intractable Pain Syndrome) patient needs to take agents for both types of pain.

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

We’ve spoken via email numerous times about my severe lumbar arachnoiditis…I have been reading your handbook that I purchased earlier this year. And I have a question. One of the symptoms I’ve seen mentioned several times is that it could cause blurred vision. Is that for arachnoiditis even in the lumbar region? Or just if it’s in the cervical spine?

Thank you so much for your time and all the updates that have been sent by email. I hope you and everyone is staying safe and healthy during this pandemic! And thank you in advance for your reply!

All the best, C

ANSWER

Dear C,

I realize that it doesn’t seem feasible that an inflammatory disease of the lower spinal canal would cause visual, headache, or hearing issues at the top of the spinal canal. Although there may be other factors, we believe that much of the problem is spinal fluid flow obstruction. The body makes new spinal fluid about every six hours, and it flows up and down the spinal canal and around the brain. There are canals or connections of fluid into the eye, ear and nose. AA forms a mass of trapped nerve roots, inflammation, scars, and arachnoid lining in the spinal canal, which obstructs the natural flow, rhythm, and speed of the fluid. Think of a big boulder in a stream. This obstruction may cause eye symptoms, tinnitus, and headaches. Every person with AA who has eye, ear, or headache issues should have a 5-day trial of acetazolamide. Start with 125 mg for 2 days and then go to 250 a day. If it is going to help, it will do so within 5 days. Also, we recommend magnet and copper rubs up and down the spine. Do 2 or more times a day. Deep breathing exercises and stretching may help.

One last point. Some persons with AA believe that they have a spinal fluid leak when they really have spinal fluid obstruction.

Best wishes,
Forest Tennant

Dear Dr. Tennant:

I cannot find details on how to treat and care for my burning feet. They have gotten much worse in past weeks, with no relief in sight. Can yo point me to the material I need to see?

Thank you, KS

ANSWER

Dear KS,

There can be more than one reason why your feet are burning. To get some relief you will have to get some laboratory tests and try some different therapies. Here are my recommendations but they are not necessarily in order of priority:

1. Review your inflammation control program. With burning feet, you will need weekly ketorolac and a corticosteroid: methylprednisolone or dexamethasone. Be clearly advised: burning feet is an indicator that inflammation in the spinal canal is not well controlled.

2. You need a hormone blood panel: pregnenolone, DHEA, testosterone. My guess is that you will find a deficiency in one or more hormones.

3. You will need to periodically rub your feet with a magnet. A copper anklet may help.

4, You will need to try electrical blocking agents which doctors now call “neuropathic”. Here is a list of the best: carisoprodol, gabapentin, topiramate, diazepam, clonazepam, tizanidine, valerian root (no-prescription).

5. An increase in opioid dosage may help.

You may have to do more than one measure to get relief. Let me know how you make out.

Lastly, I still like old-fashioned, foot soaking in Epsom Salts.

Best wishes,
Forest Tennant

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