Adhesive Arachnoiditis & the Effects on Walking

Lauren here. Sorry u are suffering so much. I too, used to be fit & active, even as a senior. have always worked out. It's so difficult to see the decline that comes with AA. Seems that surgical intervention, can be even more risky once U have AA. Most doctors are familiar with AA, but in a very limited way only. There is a lot of loss, that comes with Arachnoiditis. However, i would see if u can find another provider that is more emphatic & interested in trying to help. Think this disease separates the good docs from the bad. Lot of people can't relate to the amount of pain & loss of function . Guess doctors are only human, but it's beyond frustrating, when they won't even listen or try to help. We look normal, so it can be so misleading. I have gained a tire around my middle from steroids. My new PCP said i should be able to lose this in about a month....thought he was joking, but he wasn't. Not sure how i can walk around, let alone lose weight. I don't mean to be discouraging, but this condition is a full time job. My symptoms keep changing, but i long for the days when i could get around, exercise, look g & actually feel good. Keep trying to find someone willing to try to help. Hate to be cynical, but seems like everyone is stressed to the max, & doctors hate to feel inadequate. Your walking limitations are not compatible with living a decent existence. I'm not recommending doctor shopping, but u have a right to expect more from your providers.

Archie. I am not sure where my email went.? Was trying to let u know about my attempts to get a pain pump for my symptoms.... More frustration. I have no nerves left to ablate & it's not safe for me have any injections, & probably not a candidate for the pump. What's left to try? Too much scar tissue, & possible complications from leak CSF I have met with new counselor & she said she read up on AA. I told her that it gets very lonely & not much understanding about chronic illnesses in the general public. She said i should try dating, with other disabled people. Get the feeling, she didn't read the right stuff about AA Just think that most people don't get chronic, severe pain. One of my lunch mates, asked me if i was better, after seeing a new doctor. Hard to explain things & i have stopped trying. At times, i probably haven't been as upbeat, or pleasant. I tried apologizing to a friend & now we're no longer friends after 11 years. I like being in control, as much as the next person, but very discouraged. Maybe it's my brain fog. Now experiencing bowel incontinence... what else

Most docs don't see many AA patients. My experience, is that most are not that interested in learning about this disorder. I have downloaded Dr Tennant's material & offered to few docs. Most won't accept the handouts...say They know all about Arachnoiditis...I can usually tell which doctors are knowledgeable by what ensues. Not necessarily faulting doctors ,as i know they are extremely busy, over worked & so many changes in health care field that some drop out & find alternative careers. Around Phoenix area, too many patients as seems every one moving here & seems that they keep current on subjects they se frequently like heart, lung disease etc... Some times very difficult to get knowledgeable physician when it comes to Arachnoiditis. Not very many neurologists seem to deal with Arachnoiditis. They all seem to deal with diagnoses , sub specialties like MS, or brain tumors, types of dementia etc. I am now going to try The Barrow's Neurological institute & see if any one deals with this condition. Being a former RN, helps a little...but i didn't know anything about Arachnoiditis before developing it. Supposedly not as rare as it used to be. Ask around & if u are lucky to find a doctor who has treated or shown an interest in subject, see if u can get referral. It can be a lot of work! My current Neuro saw me for about 3 minutes, gave me several Medrol dose Pacs & some Diazepam ( didn't ask for this) He just said there is no treatment except steroids & that was that. Now i am developing bowel incontinence & some other choice signs of progression so trying the Barrows. If u are near a university hospital, or major medical center, try calling different neurology offices & ask if they even deal with Arachnoiditis. Seems it's trial & error & much work for the patient Good luck I am too old for hormones

@merrysunshine Welcome! I like your handle and it brings a smile to me. Thanks for sharing your experience and that will be helpful to others who navigate a similar situation.

That would be great! I am now having a lot of numbness & weakness in in my feet & back of my legs. I am very worried that my walking days might be over. With all the hardware i have in my spine, not much i can do. Will have to get a bike Have a lot of weakness in lower extremities. I do squats, as it seems to be fastness way to get some strength in my legs. Only can do every 3 days now. My pain doctor said not to do do theses But i can't walk with my walker much. All my strength goes into my shoulders. Squats aren't good for my pain level, but i do not want to go back to a wheelchair. Seems every day is different

Have brought copies of Dr Tennant's book. Only one PCP was interested, but she's gone. My neurologist said...No treatment except steroids. He's extremely busy. Severe shortage of all specialists in AZ. Plus snowbirds are here & even fewer appointments. Think they are overworked. Would not even look at what i brought. Think it's hard as they like to see results, & not too much progress in AA. Thanks for your support. Now i am worried, because i can hardly feel my legs, or feet Just got some income tax stuff & i am so tired, can't even look at forms. Was up at 1 30 in the morning. But i appreciate any support. My pain has gotten so severe, that i just lay on my bed

Social life...What is that? I feel same way. Like to have a little fun & forget about AA. But, no pain pump for me, as i have too much scar tissue from previous fusions, No range of motion & now severe nerve pain in my legs & feet. Worried about losing ability to walk & other stuff. I was put on 3 Oxycodone a day, but yesterday, i was crying in nerve pain & had to take 4... Like U, Gabapentin doesn't work. Think we get a tolerance to most meds, after awhile. Least i have some valium for anxiety. Do U have wife, or children? I can't hardly go to the dining room to eat Yes, i am feeling sorry for myself

I've been dealing with adhesive arachnoiditis four about 9 yrs. And it is the most horrific pain that one can experience. I had 2 transforaminal injection for sciatica (epidural), in one session. And it changed my life for the worst. I couldn't stand after the injection. Took 3 months to walk again, there's days my leg will go paralyzed unable to move it but in excruciating pain. It affected my speech, I stutter due to pain in my diaphragm and the spasms. My vision is terrible I noticed it gets worst when I'm in pain. No doctor wants to touch my spine, only pain management. But it is getting worst. Only advice I can give you. Don't give up this fight with your body. I'm supposed to be in a wheelchair per every physician I've encountered. So I'm fortunate and blessed, I can walk but using a cane or a walker and I'm OK with it. Versus being paralyzed and not being able to walk. Many blessings to you

I have had Adhesive Arachnoiditis for over 10 years now. I had my back fused L4-S1 and during the surgery I suffered a 5cm tear of the dura and a huge leak. About 2 months later the pain in my left buttock and left foot went from some pain to pain so bad I have to lay down. A neurosurgeon had me get a MRI which the Radiologist noted severe clumping of the nerve roots at L5-L5. 6 months later he removed the hardware and did exploratory surgery and noted the nerves were severely clumped. Things stayed the same for a few years and then I could no longer feel my left buttock and inner thigh. I also suffered from ringing in my ears that comes when I am hurting really bad. I also can’t tell I have to piss if I am laying down but as soon as I stand up I have to go immediately and in the last year am starting to wet myself. Bowel movements are also a problem because the nerve damage has affected my sphincter muscles. I trip over things all the time because I have lost the ability to know how high I lift my foot and the falls seem to have made the Arachnoiditis worse. I am 55 and it destroyed my life. I can see myself in a wheelchair sooner or later.

Charles. I can relate to everything you have said. I am in the last ( in my opinion ) of AA. Called catastrophic. I'm on a walker. I have taught myself to cath and I understand your bowel issues also. Many messes. If you would like to talk you can email me at henryis7yearsold@gmail.com. my name is Sherry. I've had this so long that it took 8 + years to find it. Which was just this past fall even though my Dr knew in April but didn't inform me.
Please reach out bc it helps to talk about what is happening, there is so many but no one specializes in this that I know of except by breading Dr Tenants books. They are informative.