Arachnoiditis: Looking to talk with others

Hi— don’t worry, all AA stories seem to be long I was Dx‘d in 1978. Truth is, AA is caused by trauma from surgery to the spinal cord, blood in the surgery wound, detritus from imaging fluid and aging. It can change, mutate and get worse. I find that the pump helps a lot of back pain from nerve damage, but not so much with AA. Thus the use of SCS as adjunct modality of treatment. I have Dilaudid in my pump _ has worked well for 18 years. States that limit the range of analgesics and want you to subsist on methadone and cognitive approach’s to pain control mean well, but don’t understand AA— they need to bring the best meds because AA is the worst.
Please keep in contact— hard to hurt my feelings or surprise me after 50 years of AA. Don’t give up! You have a good grasp on the disease— educate your local Pain Mgt physician— I’ve done it. Done give up, get active and become your own best advocate.

I have severe adhesive arachnoiditis. Am fused from C3 thru my sacrum ( post MRSA meningitis) retired RN, was doing ok, bur now severe intractable pain. I am on Medicare & Medicaid (secondary) Have looked for a treating physician, for years....no luck. Severe shortage of specialists, especially neurology. Most won't treat it, won't read Dr Tennant's information Been on lot's steroids with flare ups. Since DEA controls what can be prescribes, i'm considering pain pump (i am desperate) I spend 20 hours a day, laying on special mattress that i get thru insurance co. I cannot do 95 % of What DR Tennant recommends. i am now quite depressed, as I've had to give up most of my life. I do work out with 5 lb weights & can do squats, to strengthen my quads & glutes. I have a tethered cord at C6 & lumbo sacral... area, so no balance, no coordination. With all the hardware in me, so limited. I also have NO money, anymore to buy supplements etc... I do not know what else to do? I also have a permanent supra pubic catheter (post paralysis) & get multi drug resistant infections needing IV therapy for UTI Don't mean to be a downer, but think the pain pump might be only option

I recently after yrs of testing finally found by my primary care after asking of a diagnosis for a form , needless to say , she found a MRI done in April 2024 , flagged to Dr who never responded to me of this finding . I have went from cancerous tumor in 1986 which was followed by 29 radiation treatments then learning to walk again . I was 16 , when I was 27 I had a son , had good health but dealt with daily pain until 5-8 years ago after seeing numerous Dr's and finding nothing I traveled to Roanoake VA to carilion Clinic neurologist specialist who found I was going to find slow paralysis .
Also had team respond personally to me before a 3-4 hour trip not to come bc I wasn't a candidate for a spinal stimulator due to my naturally fused spine and Dr said it could not be possible .

I know as of 2 weeks I have every symptoms of Arachnoiditis and now have had 2 Dr's today say there is nothing I can do . I just want to have a quality of life I can tolerate only to hear you are just going to suffer. I just need help w bladder leakage pressure and also pain and not being able to set for long periods of time nor sleep more than a few hours.

Why are Dr's saying this knowing I know they could cath me , also they make higher dose of medication I recieve and say they can't help s person whom is asking to be able to have a social life again after years and I am not a suicide risk or risk to others.

Why if it was their self or a family member ( which I'd never wish on anyone) how they would feel.

They could help me up until paralysis happens and then hospice but I'm wanting to live.

Thank you. And I pray and bless you all. 🙏

Help before I loose my legs and will to want to stop the pain I'm suffering.

Has anyone had experience with Calmare for treating Arachnoiditis/Cauda Equina Syndrome/Failed Back Surgery Syndrome. As far as I can figure out they are just different names for the same thing. I’ve had all three diagnoses in the course of my 34 years of living with this beast.

I managed to put it into remission after 15 years of working at it; without any allopathic medical support. There wasn’t anything back then but surgery and epidural steroid injections, which are what caused the problem in the first place—that and oil based (pantopaque) myelograpy.

Another recent large herniated disk L1-L2 with a fractured L2 facet joint and the severing of the left L2 nerve root and emergency micro surgery to fix the mess. Have put me back at level 3 severe (in Dr. Tenant’s categories) with flares in the catastrophic range. There are so many possibilities for treatment now which is so much more hopeful…if confusing.

The allopathic docs: neurosurgeons, neurologists, orthopods, radiologists, pain clinic docs and the rest say there is nothing they can do because they can’t burn cut or poison the problem away. There is no cure but that doesn’t mean it can’t be put into at least partial remission.

But you will have to go to alternative medicine and you will have to work at it long and hard.

For the best modern options for pharmaceuticals, supplements and some kinds of alternative treatments, Dr. Forrest Tennant’s book “Living Well with Arachnoiditis” is a good place to start. You can get on Amazon, including a free option on Kindle Unlimited.

I got my own initial catastrophic case from 1991 into remission using a combination of, ChiGong and TaiChi (Bruce Kumar Frantzis’ “Southern Wu Style is particularly good but other short stance styles may work too), acupuncture, cranio-sacral work, trigger point massage and injections, dealing with my celiac disease (strictly no gluten), Alexander technique, and a program of walking. It took about 15 years and lots of trial and error to get back to a semi normal life and is still a work in progress. When I started I fully expected that I would not live to see the current millennium.

Definitely worth trying and there is so much more known and available now.

Best of luck to you.

If you wouldn't mind talking contact me. Two27sevensix62two 9nine8eight 8eight4four8eight 3three I'd like to speak about this condition bc I feel like I go for help but all Dr's want to say same things , no cure no help , go see this Dr or that Dr and it's so frustrating. I would appreciate any help . My name is Sherry

Hi Sherry, I am so sorry that you are dealing with Arachnoiditis/Adhesive Arachnoiditis. I hope that you don't mind my asking a couple of questions... I will also share some similar information with you about my journey. If you're not comfortable with sharing the answers to my questions, I totally understand. Sherry, what type of Arachnoiditis have you been diagnosed with? What type of doctor(s) have given you that diagnosis? How did the doctor(s) determine their diagnosis (ie: what tests were performed and/or surgery(s) performed that showed evidence of this diagnosis?) What type of evidence did they discover that pointed to your diagnosis? How long ago were you diagnosed? I'm asking these questions as I know from my own health journey that some doctors are more thorough then others in gathering evidence to help them accurately reach a diagnosis. In my own long standing health /spine struggles, there are doctors who were/are excellent and who leave no stone unturned in gathering information, that clearly points to a specific diagnosis or various "hand in glove" linked diagnoses. I have had a total of 9 spine surgeries throughout my Lumbar, Thoracic and Cervical spine. In addition, over the span of several years, I have had a total of 28 injections into various levels of my spine, by various types of doctors, - in hopes of alleviating the progressing degree of my pain, from my advancing Adhesive Arachnoiditis, in all three levels of my spine, and the resulting effects on all of my extremities. At first, the various types of injections I received in various areas of my spine, with various pain medications and/or anti-inflammatory medications - helped a "little" bit. Even though initially, some of the injections provided a "little" bit of help, any level of relief that I experienced, was of short duration. Yet, as the various doctors talked with each other to discuss my test results/findings and my 9 various spine surgeries, and numerous injections, numerous therapies , acupuncture sessions, etc , it became obvious that I needed to try a different way to try to deal with my worsening Adhesive Arachnoiditis condition and the resulting 24/7 terrible pain and the effects on my arms, hands, legs, feet, and toes. My choice was to either give into my intense - all over my body 24/7 pain, etc , or I could not let my very heavy pain dictate my life - day in and day out. Is it all consuming? Yes, at times it is all consuming. However, with the help of various very skilled counselors, an excellent Psychologist, and by joining/participating in a couple 12 step - pain management support groups, I have changed my outlook and how I let an "attitude of gratitude" start and end each of my days eith lookong at my life and actually acknowledging, each and every day, all of the wonderful people and wondeful things in my life each day. I practice "Creative Visualization" controlled breathing, and allow my sense of humor to come out in various ways. I have a strong faith thankfully that nourishes my mind, body and spirit. Is there alot of physical issues I have 24/7 - yes, definately. But I am more then my physical limitations. I have become inventive in finding new ways to try to accomplish physical needs, that I never gave a second thought to before my Adhesive Arachnoiditis. If my former "plan A" no longer works for me, and no longer helps me accomplish things in my life - then I try a "plan B" or "plan C" or a "plan Q, R, S..." Sherry what I'm trying to say is that Yes, Arachnoiditis/Adhesive Arachnoiditis is very rare not only in the U.S. but also throughout the World. Is there research being explored ? Not that I have been able to find. No focus groups, no controlled supply groups, no medication studies for our condition(s) and no known treatments. But our life is not just about our Arachnoiditis condition. We are so much more then that. We have a purpose in our life to be present to family and friends and casual acquaintances, and even how we can maybe be a source of encouragement to others we may encounter randomly. I refuse to allow my Arachnoiditis and/or lack of treatment/ and various other health issues to fill all of my time - 24/7 and I hope that yiu will be able to find yiur way to do the same Sherry. You can contact me anytime through this wonderful Mayo Clinic means of communication. May our living Gid wrap His loving and gentle embrace around you and hold you securely and gently, each and every day.
With peace-filled wishes,
mata

I found out 3 weeks ago after 8+ years of pain , falling , not being taken seriously, different injections into places I had no muscle tissue , I had T2-T10 surgery for tumor growing inside my spine in 1986. I feel like I'm going thru those same symptoms but extremely worse , I've had so many Dr's I can't count , if you know of any specialist in this field please share with me because I do not know what type, I do know I went years with walking again at 17 and having a son at 27 now I'm using a walker and barely able to walk with no bladder control I've have extreme pain in my legs , I can't sit long , I can't lay down long , I can't walk far , I live alone when my bf of 12 years couldn't deal with my issues and his self being diabetic , so I've been alone a while relying on my family whom are realizing how serious my condition is. I had feeling of water running down my legs , tingling stinging , thinking I had gout in my toe , I thought how can no Dr find what is happening to me and why. I no longer drive I couldn't feel the clutch , I got an automatic vehicle unless I was looking at my foot on brake I was scared I'd hit the back of a car bc I had weakness pushing pedal , if you know of Dr's in this field of arachnoiditis can you please share. I have traveled several places to different Dr's and will go anywhere I know there is a specialist in this diseases. I want and need help , I even am trying for in home care . If there is anything you wish to ask please do. 276-298-8483

God bless you and also I found out thru MRI in my L4L5 S1.