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 [email protected], fax to 626-919-7497, or mail to:
The Tennant Foundation
Arachnoiditis Research Project
336-338 S. Glendora Ave.
West Covina, CA 91790-3043
YOUR QUESTIONS AND OUR ANSWERS ARE UPDATED FREQUENTLY
My husband has improved greatly since we started following your protocols for arachnoiditis. Our primary care doctor helped us with most prescriptions, and we found a rheumatologist who prescribed the LDN. My husband is now enjoying life again, in less pain, and doing more of the things he loves. Your information was PRICELESS. We take our handbook- game plan to all doctor visits.
Our protocol is really a report or update of the historic 3-component treatment for painful musculoskeletal and Neurological conditions. We frequently come up with new ideas to share and try. Every patient and family need to attempt to build a better and better treatment program. Don’t be satisfied with today’s program. Keep trying to improve it.
I live in Queensland Australia, and I was first diagnosed with AA in 2010 and have battled ever since.
Now I don’t know if this will help in any way, but I am part of the communities in Facebook with others that have Arachnoiditis sufferers and every now and then do a survey or two, and I have the results of my last two.
The first is blood groups and surprising “(O)” Neg and “(O)” Pos are 70% of people with AA.
And for the second everyone that I have text emailed F/B have said if their head goes lower that their waste a clear, fine non smelling fluid comes out of their nose and seems to start right at the back. I’m pretty sure its SCF but will have to get a sample and have it analyzed.
I hope maybe there is something in this and not to have wasted your time.
I believe you are on to some possible breakthroughs in diagnostics. I’ve long believed that some genetic factors influence or boosts the potential for the development of AA. I’m sure persons with AA who bend over may leak spinal fluid. AA is really a mass inside a closed “pipe” (spinal canal). The mass acts like a boulder in a creek in that fluid flow backs up. Thanks for these great observations.
I just spent a full hour on the phone with a VA doctor, from the Tampa pain clinic. This guy didn’t sound like he knew much of anything, regarding arachnoiditis, but he was adamant that I could not be on dexamethasone for any extended period. He also said That he couldn’t see the purpose of ketorolac or the B12.
He said that he felt most of my pain would go away after spine surgery. I say these things to you, only to highlight the absolute mind-blowing frustration that I’m going through, dealing with the VA and arachnoiditis. At this point, I may as well throw up my hands, realizing I am going to die in a lot of pain unnecessarily. If I knew a way to get the components through a private doctor, I would do that. I have no clue how expensive that would be because I don’t know what the cost of those drugs are.
In closing, this guy couldn’t understand why a diagnosis of arachnoiditis was ever made or that it was even necessary in the face of my mechanical damage. If that’s the level of support that I have for AA within the VA, then I am truly screwed.
I’m frankly not surprised at the response from the pain clinic. The movement to develop a pain specialty and clinic isn’t what the public perceives. The physicians who have become “pain specialists” and developed “pain clinics” have, for the most part, been quite clear that they are available to only provide symptomatic treatment (e.g., some drugs, procedures, interventions) of pain.
They will neither diagnose nor treat your underlying, causative disease or the CNS inflammation produced by severe pain. Do not expect a pain clinic, inside or outside the VA, to provide corticosteroids or other spinal canal inflammatory agents. At no time will they embark upon the historic 3 component treatment protocol for painful musculoskeletal and neurological conditions.
Why? The pain specialists have made it quite clear that treatment of a disease such as arachnoiditis, EDS, RSD, post-stroke, and other severe painful conditions is to be done by primary care physicians and other medical specialists. They will only provide symptomatic pain care.
In closing, let me again emphasize that periodic low dose dexamethasone, ketorolac, methylprednisolone, naltrexone, and hormones are quite safe, effective, and easy to administer. Any physician or nurse practitioner can prescribe these AA medications.
Best wishes always,
Since 2020 I have been diagnosed by the team of the Excellency Doctor Forest Tenant with AA. I would like to take the opportunity to ask if some patients report about AA symptoms complained of pain in the ear and back of the eye. I have suffered continuous crises of severe pain in the ear, they only improve with the use of medication for the head. Is there any relationship between this pain and arachnoiditis?
Thank you, MP
Yes, persons with AA frequently have eye, ear, and nasal symptoms. Spinal fluid flow has connections to these organs. We believe that spinal fluid flow impairment or alteration causes these symptoms. We recommend a trial of acetazolamide.
Best wishes always,
You are so kind; I can’t tell you how good it feels just to hear back from you. God bless you for all the charity work you have been doing and all the help you have been giving to the AA communities.
What can I do to help? Can I donate to the organization? I really want to contribute to your efforts. The work you are doing to help us is saving our lives.
Thanks for the kind words. You can do two things that will help. We have made a brochure that we would like to have persons with AA drop off to the offices of physicians, pharmacists, chiropractors, and physical therapists. This will help bring awareness to every community. Second, let us and any social media site know what is helping you. Patient to patient communication is essential in our disjointed society of today.
I contracted Covid at the end of December 2020 and within a few days, the progress I had made with AA over the past 2-3 years seemed to be lost. My back, pelvis, and leg pain and burning were intense as well as my auto-immune issues intensified. The good news is that within 4-6 weeks these issues resolved, and I mostly returned to my prior state.
The bad decision I made was getting the vaccine at the end of March. At the time, the vaccine requirement was to wait 90 days from a positive test but that changed so I got the shot a week shy of 90 days. I read the previous letters posted on the Arachnoiditis Hope website and chose the J&J vaccine for this reason with hopes of minimizing the potential impact.
Now I’m almost 5 months after getting the vaccine and still struggling. I’ve tried the Medrol and Ketorolac flare-up protocol and continue 3 Ketorolac injections per week as well as maintaining the 3-pronged treatment plan. Although I’ve improved slightly over the past week or so, the progress I’ve made over the past 2-3 years hasn’t returned yet and I’m on half the pain medication now.
Do you have any suggestions? I went a few months without checking your website, so I apologize for a likely duplicate question. I believe many others are struggling like I am. One of the worst decisions of my life and I hope I can recover but it’s a huge trial. I wish I would’ve researched and better understood the vaccine especially since I already had good protection from getting the virus.
Thank you for everything!!!! MR
I can’t guarantee anything, but I would attempt this regimen for two weeks to hopefully reduce the complications of the vaccine.
- taurine – 1000mg, 4 a day
- pregnenolone – 100mg, 3 to 4 times a day
- vitamin C – 2000mg, 4 times a day
- B-12 – 1000mcg a day
Thank you so much,
I don’t want to abuse your generosity, but I cannot find anyone to help with this question, even in the AA groups, in fact many other women are also wondering. When talking about replacing hormones, what should we do during the post menopause. Obviously, during that period of our lives and in a natural way, our hormone levels are very low. Should we follow hormone replacement therapy? In my case, testosterone is so low it is almost nonexistent.
Women who have AA or another spinal canal inflammatory disease may deteriorate very rapidly in post menopause. Why? Your natural hormone levels drop and the pain and stress of AA exhausts your hormones. I’m a believer in the old-fashioned estrogen shot and the replenishment of any hormone that tests low in the blood. Testosterone is critical for relief of pain and healing in both men and women. Most doctors are not yet aware of this and resist giving testosterone to women. Like AA that depletes testosterone, you must simply take some of this hormone and bring your blood level back up to normal.
Best wishes always,
This is the best news I have heard in a long time.
I have been following your program religiously since I was told I had AA last October. Your program kept me from developing a full-blown AA. And saved my life.
I can’t thank you enough for giving me hope again.
Thank you, thank you, Thank you.
Thank you for the kind words. You emphasize a point. I commonly hear that there is “no treatment” or “nothing can be done” for adhesive arachnoiditis (AA). It is true that there is no specific drug labeled by the FDA for AA. Therefore, a protocol is used. A protocol gives patients and physicians a “road map” of choices. Yes, trial and error are necessary, but it works. Every patient with AA can find some relief and recovery but one may have to try several measures to build a “tailor-made” program. AA is a combination of inflammation and nerve damage. There are many drugs and measures that work. You just must identify a few thatwork for you.
Best wishes always,
My sister has adhesive arachnoiditis and I’m certain she’s in end stages. Right now, she’s losing 3-5 pounds a week or more and has been having diarrhea. I was told this morning that she also started vomiting. Could this be due to the arachnoiditis?
Yes, the problem you describe can occur in the late stages of AA. Even though one may be in this tragic situation, it is still possible to control the complications. For example, a 6-day Medrol dose pak may resolve her stomach and bowel issues. Pain flares are usually behind the complications you describe. Old fashioned suppositories or injectable medications for nausea and pain should be at home for emergency use.
Best wishes always,
Hello, Hopefully I will be prescribed this week, phentermine.
Pregnenolone worked like you said…DHEA 5 days a week and Pregnenolone 2 days.
I really like how Pregnenolone makes me feel. More energetic, more engaged with others, happier and just more normal. Can I take Pregnenolone anymore days a week? Or is 2 days the max?
The best plan for most patients is pregnenolone and DHEA on alternating days. I now believe that the “Pregnenolone-DHEA Protocol” will stop AA progression and provide some relief in many all persons with AA. Dosage of each is 50 to 200mg on the “on” days.
Best wishes always,