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 firstname.lastname@example.org, 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,
This is a great report from RP…made my day, hope it adds to yours!
Also have another great story/encounter to share with you and Dr. Tennant. At my appointment with my pain management physician this last week I had another great discussion. Had given him a copy of the 2cd book last month. He read it! And referred to Nurse Rosey, asking if that was me. Lol! Anyway, discussion went on to include the way he had been trained in medical school 20 years ago. All science based. If there were not randomized, controlled studies of (insert whatever topic/disease) then they were to be ignored as not being scientific.
He does not think like this! He said his thoughts were because that AA is relatively new to the scene it’s impossible to have randomized controlled study groups of it. And of course, because of legal ramifications that may or may not take place depending on circumstances many physicians turn their heads with new research such as Dr. Tennant’s. He is NOT included in this way of thinking. His mind is open and progressive! Said he could see how many of the medications on the “protocol” could be of benefit. The only one he wasn’t familiar with was HCG.
His experience with his colleagues is the same, being open minded and willing to think outside the box. Sadly, I explained that this is not the norm that patients across the country are experiencing. You know, that “God complex” in knowing everything about everything and a patient is NOT going to teach him something new or different.
Him having colleagues with the same mind set is a huge plus! I told him we need more physicians on the scene like him. I am hopeful with him. That as I spend more time with him, and he gets to know me better and how I have benefited so much since seeing Dr. Tennant that he will be even more interested.
P.S. I have only been a patient at this clinic for a little over a year and have only been seeing him each month for a few months. The clinic has several physicians. Since changing pain mgmt last September, I never know which one I would see. BUT I have requested this doctor for 4 months now and will continue to do so. As I explained to him, it is important that I have a physician who knows me, and I want to get to know him. I don’t want an in and out appointment for refills of medications only. He agreed completely!
I feel like we have a common ground and can progress from here. So, moving forward we have a great opportunity ahead of us!
Best to you, R
Thanks. Every patient with AA needs to be an advocate and educator.
Best wishes always,
Hello Dr. Tennant,
I am a nurse practitioner in MN. I believe you corresponded with one of our PTs recently regarding a patient with Arachnoiditis. I know the patient has reached out to you as well. Treating this is new to me. Neurology has basically said they are not going to treat it. I know we were having her sign a release for us to talk specifically regarding her and I can get that to you. However, my first question is what neuroregenerative agent do you recommend starting with and do you have a specific dosing and pulse method you follow? Also, any specific monitoring with it? Thanks for what you do. This patient has been all over, and she is very motivated to work hard and improve. The diagnosis was unfortunately missed with her first MRI, so we are a bit behind on treatment.
I’m delighted to hear from you. The first thing to know about AA is that it is one of 4 major intraspinal canal inflammatory disorders (ICID) of the lumbar sacral spines: (1) protruding discs; (2) cauda equina inflammatory disorder, (3) arachnoiditis, and (4) adhesive arachnoiditis (AA). AA is usually the result of one or more of the other 3 inflammatory disorders. Once a diagnosis is made of one of the ICID based on symptoms, physical, and history, not necessarily MRI, and inflammatory agent that will cross the blood brain barrier, enter spinal fluid, and attach to receptors in the inflamed tissue, should be started. A therapeutic trial with a 6-day Medrol dose Pak and/or 2 consecutive days of ketorolac is preferable but not essential. Unless a person is on daily opioids, ow dose naltrexone is the drug of choice. The key is to simply get started and build a tailor-made program over a 2 to 3-month period. All the agents used in the 3-component program are relatively inexpensive, and safe. Many excellent agents are non-prescription.
Be clearly advised. Many persons are out there wandering around with disabling back and neck pain who have an ICID. In addition to physical measures, a 3-component medical program can and should be done in the ambulatory sector. We will keep you up to date with our bulletins.
Dear Dr. Tennant,
This may be an odd question but it’s hard to find another doctor with your expertise on arachnoiditis anywhere in the country. I am having a hard time figuring out what it means to have chronic adhesive arachnoiditis. I was diagnosed in 2015 after 20+ years of suffering because of two “failed” back surgeries in the 90’s. At this point in the process is there still inflammation present even after the scar tissue forms and the nerves are clumped together? Or is it an end stage which means that the inflammation is over? Nothing I’ve read has ever explained this or even addressed it.
My main concern right now is regarding the safety of vaccines of any kind but especially the Covid-19 vaccine when it is approved. It appears that the first trials at Oxford were halted due to transverse myelitis so that makes me wonder if we as arachnoiditis patients would be more susceptible to side effects. If we are in a constant inflammatory state, I would think that introducing another challenge to our immune system would tend to overtax our capacities. I look forward to hearing your opinion on this topic.
Many thanks for all you continue to do for those of us who suffer.
Your questions are “right on”. First, we believe that intraspinal canal inflammation of rheumatoid arthritis. Intraspinal canal inflammation (ICI) may wax and wane, but one must not assume it will totally go away.
In late stage Aa, you should still attempt to build a program of relief and recovery by building a tailor-made, 3-component treatment program. Since you may be on a lot of pain control medications, you can simply add one or two of the best non-prescription anti-ICI agents: curcumin, andrographis, palmitoylethanolamide (PEA). You also want to take one or more of the tissue-building, neural regenerative agents since even late stage AA can regenerate or “scar over” old clumps and adhesive masses. For example, DHEA, colostrum, or deer antler velvet. We are seeing significant improvement with nandrolone. Unfortunately, the government is restricting the compounding of HCG.
I assume given your history that you have the intractable pain syndrome. We have a new website directed specifically at this complication of late stage AA. Please sign up.
I don’t recommend vaccines for late stage AA.
Be clearly advised. We don’t want to give up on long standing AA as we are seeing some remarkable improvement if you can do some of the physical measures such as walking, arm stretching, and water soaking.
Dr. Tennant reviewed my MRI’s at the end July and stated that I have the precursors to AA (attached is the letter sent to me). Since then, I have been diagnosed with thyroid cancer and have a full thyroidectomy scheduled for November 6th. I know having optimal hormone levels is important for nerve regeneration. My physicians haven’t seemed to think this would cause any issues, being that I will begin Synthroid immediately, but they also aren’t familiar with AA.
Currently my hormones are all within optimal levels. I’m also taking 2 mg of Methylprednisolone every other day and have been for nearly 2 months. Daily I’m taking turmeric curcumin, serrapeptase and nattokinase, PEA, and diclofenac. My continued symptoms are burning, tightness in lumbar spine, burning and aching legs at times, and newest is right shoulder pain (not sure if it’s related). I am stretching many times a day and walking about a half mile twice a day. I appreciate any advice or insight you can give regarding this.
I like the program you built for yourself. I truly believe you will prevent the development of AA with it. It is far better to treat what we call Cauda Equina Inflammatory Disorder (CEID) rather than wait for the development of AA.
I see no reason to change anything, including hormones you are doing. Synthroid will only help reduce the inflammation caused by CEID.
Have you been diagnosed with an autoimmune disorder? I’m impressed you are taking nattokinase, because I feel this may be a helpful agent for all the intraspinal canal inflammatory disorders. I look forward to hearing from you. Tell your physicians they are doing an outstanding job.
Dear Dr. T,
What about oral ketorolac? Your literature says to be cautious or even “don’t use it”.
Dear Dr. LC,
We’ve had to modify our position on oral ketorolac, because frankly, it is usually difficult to get much CONSISTENT relief and recovery from AA and CEID without low dose, regular dosing of ketorolac and a corticosteroid.
Persons under age 70 can almost always take an oral 10 mg dose on 1 to 3 days a week or every other day.
Here are some rules I recommend:
1. Skip a day between ketorolac dosages.
2. Take with food or an antacid.
3. Do a periodic hemoglobulin, hematocrit, or blood count and BUN/creatinine. Liver is rarely affected. Test regularly if over 70.
4. Warn patients about black stools, vomiting blood, or abdominal pain.
5. A good idea is to also alternate days of ketorolac with dexamethasone or methylprednisolone.
Ketorolac almost seems like it was made for intraspinal canal inflammatory disorders. It can and should be an ancillary treatment with low dose naltrexone and daily opioids. The latter can almost always be reduced with use of ketorolac.
Dear Dr. Tennant,
I was hoping to be added to the email list. I was diagnosed a few years back and things seem to be getting worse. I’ve had 2 flairs in the past month. It’s awful. Thank you so much in advance.
I’m very glad you have contacted us, because our recent research provides some guidance on prevention of flares and deterioration. I write the following on the basis that you have AA or other intraspinal canal inflammatory disorders.
Flares and deterioration are caused by either uncontrolled inflammation, infection, or some type of injury due to overexertion. Adequate treatment of AA requires 3 components: (1) suppression of inflammation; (2) protection and regeneration of spinal canal tissues; and (3) pain control.
You need to review the 3 components and see if you are lacking. Also review the physical measures that must be done routinely to control AA.
Most persons with flares and deterioration have an insufficient program to suppress intraspinal canal inflammation. You will need more that one agent as different tissues are involved. Be clearly advised. If you have AA, you will need a periodic corticosteroid to control flares and deterioration. We will be sending out regular bulletins to help persons with AA take advantage of our latest research. Also, you should probably obtain our handbook from Amazon.
Dear Dr. Tennant,
Found your latest bulletin concerning corticosteroids being essential for adhesive arachnoiditis very interesting. I have found that the only time I was totally free from pain is when I took methylprednisolone. Dr renewed once but wouldn’t renew again.
Besides back and leg extreme pain, constant insomnia, extremely dry thin skin on my forearms and shins bother me. I look like I’ve been beaten most the time. I do not take blood thinners. In fact, I don’t even take Tylenol because of bruising. Thus, I can’t get relief from inflammation except through usage of Kratom. I’m sure that I’m either taking something that’s causing it or am lacking some essential vitamin or mineral.
How can I find out if what I take is causing problems? Also, as far as methylprednisolone prescription, would I follow your suggestion of 1 4 mg pill?
Thank you in advance be for your advice, SF
I assume you either have adhesive arachnoiditis (AA) or cauda equina inflammatory disorder (CEID). The treatment is fundamentally the same except one really needs a potent anabolic hormone with AA. CEID is much more treatable. Your experience with pain reduction by use of methylprednisolone tells us that you have inflammation inside your spinal canal.
Perhaps your physicians would consider an injection or 8 mg oral tab of methylprednisolone on a weekly or bi-monthly basis. If you simply can’t get methylprednisolone purchase “adrenal cortex” in a health food store. Use a dose about 2 or 3 times what is on the label. You can also get pregnenolone which converts to cortisol and progesterone.
A number of persons with AA are finding this combination of non-prescription anti-inflammatories to work quite well for AA and CEID: curcumin, PEA, and andrographis.
I hope this helps.
I will be starting some dexamethasone soon and a few other things on your protocol. If I have a connective tissue disorder (you mentioned) won’t the dexa make it worse? I believe we are meant to stay away from steroids if we have this. Sorry no more questions!
Kind regards, MN
The medical lore to “stay away from steroids” has been modified to “take low, intermittent dosages” for some chronic, inflammatory diseases. The terrible side effects from corticosteroids occur when they are taken daily at a higher or replacement dose than the amount normally made each day by the adrenal glands. For adhesive arachnoiditis (AA) we recommend the following:
1. Maintenance-low dose of dexamethasone (.5 to .75mg) or methylprednisolone (Medrol 2 to 4 mg) on 3 to 5 days a week. Skip days between dosages.
2. For flares-6 Day Medrol Dose Pak or an injection of methylprednisolone or dexamethasone preferably mixed with ketorolac.
An alternative to the above is a weekly or bi-monthly injection of methylprednisolone or dexamethasone.
If a person has an Ehlers-Danlos Syndrome (EDS) type collagen disorder, and does not have AA, we recommend a hydrocortisone (Cortef) low dose (5 to 10mg) on 3 to 5 days a week.
Persons with asthma and rheumatoid arthritis have to take daily, low doses of corticosteroids often for years without serious side effects. AA and EDS are serious conditions that cause a suffering, shortened life. Corticosteroids are an essential treatment.
Special note: Dexamethasone and methylprednisolone are used for spinal canal and brain inflammatory diseases because of all the available corticosteroids, they are known to cross the blood brain barrier and enter the spinal fluid.
In summary, we now believe that low dose, corticosteroids are essential for AA and EDS.
Hello Dr Tennant,
Yesterday I went to a neurosurgeon in Brussels. It is the first doctor I found in Belgium, who has some experience with arachnoiditis. In attachment you can find one of his publications, maybe it will interest you? This doctor has the opinion that there is a chance that a spinal cord stimulator could help me with my pains from arachnoiditis. Do you know if there are some patients who has great benefits from spinal cord stimulation? Are there risks in placing the probes (can my arachnoiditis get worse from it?) And what is your opinion about it?
I am sorry to bother you with my questions, but you seem to be the only person that I know I can ask for a good opinion.
Next month they would like to do a trial with a TENS ( Transcutane Elektro Neuro Stimulation is noninvasive external placed on my back) If I have benefits from the TENS, I would maybe have a chance that spinal cord simulation would help me, the doctor told me.
Thanks a lot, and Best wishes, JF
Spinal cord stimulators are used by many AA patients to control pain. Stimulators do not, however, suppress intraspinal canal inflammation or rebuild damaged nerve tissue. I only recommend stimulators after one is on a 3-component medication program as well as doing select physical measures each day. In summary, a stimulator can be part of your program -but not your whole program. Don’t be conned into thinking that any SINGLE treatment or measure is going to excuse you from building a lifetime treatment program.
Dear Dr. Tennant,
I’m currently working on an all-natural treatment plan for the pain, once I have all that I did and the % that it worked I will send you all my research. As doctors in Canada that I saw mis-diagnosed it for fifteen years, and it was me watching your lectures that allowed me to self-diagnose in 2020. As resources in Canada are very limited, I was left to my own wits and problem-solving expertise to create my own treatment plan without a doctor. Your emails have been extremely helpful, and I thank you very much for all your help.
Stay safe and Healthy
Kind Regards, S
I’m delighted to hear you have taken action on your own. Actually, one can build a good program for AA with all non-prescription agents. Doctors everywhere are learning about AA, but we are a couple of years away from universal physician knowledge. Keep up the good work.
Hi Dr Tennant,
I’ve just received a bulletin and question sheet from you. I want to know is if you think the disc protrusion in the cervical area causing CSF flow problem could be a possible leak location. I have started implementing some of your protocol already to try and stop the burning spine.
Kind regards, M
Yes, protrusions are often the site of inflammation and leakage or seepage. Protruding discs are not taken as serious as they should be. They are the initial cause of several different spine disorders.
Dear Doctor Tennant,
You advise many different types of anti-inflammatories, but I take anti-coagulants, specifically Apixaban, and therefore I’m told not to take anti-inflammatories. What do you suggest for me, and for others in the same predicament, please? I have had adhesive arachnoiditis due to myodil Myelogram since 1975 so perhaps its too late for anti-inflammatories anyway?
Best wishes, FW
If you can’t take anti-inflammatory agents, take the hormones that do the same thing. In fact, they are often better. These are the non-prescription hormones that have anti-inflammatory effects but won’t interfere with anticoagulants: adrenal cortex, pregnenolone, DHEA, colostrum, deer antler velvet. You are correct in stating that anti-inflammatory agents might not help since you have had it since 1975. This is another boost for use of the hormones mentioned above. These hormones enter the spinal canal fluid and actually rebuild nerve tissue if the tissue is not too scared.
Dear Dr. Tennant,
I am a 51-year old male in Ontario, Canada who in March of 2020 diagnosed myself with aa after coming across an article about it. My neurologist and neuroradiologist confirmed my assessment. However, in Canada the resources are very limited. So, in 2000 I had a fall and in 2002 another construction accident. Then in 2016 because I had been on opioid therapy I dove into a pool and damaged my cervical spine. In 2017 I fell again 10 feet landing on my feet damaging my thoracic spine. This is my Question If my spinal cord is adhered to my arachnoid layer almost to the dural sack, even though it’s not separate nerves like the cauda equina , but is definitely interfering with the spinal fluid flow, would this be considered AA. If yes, I would like to say it occurs in my cervical, thoracic, lumber, sacral spine regions according to my MRI’s. If this is an interesting case and you would like to view my MRI’s I would be more than happy to send you access. Let me know.
Kind Regards, SM
Your note suggests that you have an extremely rare case. Adhesive arachnoiditis is almost totally (about 99% of the time) in the lumbar-sacral spine because this is the spinal area that contains the cauda equina nerve roots. You are correct when you say that AA can be
in the thoracic and cervical spines, but it means the spinal cord must be adhered to the arachnoid-dural covering by adhesions. Yes, I would very much like to see your MRI’s as you are, indeed, a research study all by yourself. Our treatment recommendations are the same regardless of location of AA. I look forward to seeing your MRI’s.
Best wishes always,
Dear Dr. Tennant,
My congestion is still horrible and getting worse every evening especially and, in the mornings, and afternoon as well in the evening, just terrible. No ENT or allergist has a clue about how to solve this. Please give me some ideas if you have them because I’m sure it must be related to my disease. There is also a possibility I am allergic to milk according to my last hospitalization notes. Can I take colostrum safely? Thank you for your response. I’m hoping and praying that I can keep myself together and not die before I get hold of this disease. Take good care of yourself, B
All persons who have AA and/or IPS need to be on a basic medical protocol. I’m attaching our short-version medical protocol. The best stating treatment is a combination of low dose naltrexone and low dose, intermittent ketorolac, and a central acting corticosteroid (dexamethasone or methylprednisolone). We have learned that persons who are not on this basic, best protocol will be “unstable” and have a variety of untold symptoms including excess congestion, food sensitivities, and, at some point, tolerance to opioids and other medications.
I’m attaching a medication list. Return it to me and I’ll have some ideas.
I am wondering if you have seen people be able to return to work. I had my arachnoiditis causing spinal tap 3 months before starting law school- which has been my lifelong dream. Needless to say, I am absolutely devastated that a ‘routine and benign’ lumbar puncture has taken so much from me. I have also developed a small syrinx because of this LP. My question is two parts 1) Do some people live somewhat normal lives with this disease? And have you seen people return to function? 2) Any idea how a LP could cause a cervical syrinx? I do not have Chiari or anything of the sort. God bless and thank you.
We have seen many people return to work. Many more have achieved enough relief and recovery to have a good quality of life.
There are some things you should, however, know. First, only those persons who are in the mild or moderate categories and who have pursued aggressive treatment have been able to return to work. The most successful treatment regimen has been low dose naltrexone with
intermittent use of methylprednisolone and ketorolac. Use of plant-based medication like curcumin and serrapeptase have been helpful. Also, recovery has been best when our physical exercises that enhance spinal fluid flow are done.
Go for recovery and a good life. I have attached our self-help protocol and some bulletins to help you.
Best wishes always,
Are you able to prescribe medication and treatment after careful consultation and review of history? I am not looking for pain medication, I can get that from my local pain management at Stanford which I have seen for years. What I can’t get is focused help to fight the inflammation. Anti-inflammatory drugs help me a lot. Prednisone for example almost removes the pain. So does a well-placed epidural.
As you said pain mgt. and neurologists today do not care for inflammation treatment.
My insurance is Blue Cross Blue Shield of Massachusetts, despite that I live in CA. Employer insurance. I do have the highest level they offer, but it is still quite expensive out of network.
Thank you. PK
If you can’t find a doctor who will prescribe anti-inflammatory medications and tissue building medications, here are my recommendations.
1. Adrenal cortex – double the labeled dose and take 3 to 5 days a week
2. Curcumin 900 to 2000mg a day
3. Pregnenolone 200-300mg a day. Start at 50 and work up.
4. Palmitoylethanolamide (PEA). Best product is PEA-Cure.
Also look over the medication lists that persons with AA are using.
Best wishes always,