I was diagnosed three years ago, following surgery to remove five giant Tarlov Cysts, which had eaten through a significant portion of S1 - S3 vertebrae. (I went for 12 years with worsening symptoms of TCs and was told it was all in my head.) I had severe pain, but no issues with walking. In fact, I found some *relief* walking three to five miles per day in the heat of our Texas summers. However, in the last year, my pain has become excruciating and I lost feeling and movement in my right leg. (As someone else mentioned, AA is progressive - I only just realized this after reading Dr. Forrest Tennant's books!) I had a spinal cord stimulator implanted in October and, oddly enough, I regained feeling in my right leg.
But the stimulator has done nothing for my pain and I am still unable to walk further than the mailbox without sciatica and coccyx/low back pain. I also have trouble with balance and tripping. I still have foot drop in my right. It is so frustrating, as I was healthy, fit, and active.
At this point, neither my pain management doc nor my stimulator rep are interested in the fact that the stimulator has affected sensation in my right leg, but has not touched my pain. Also no interest in balance/tripping. Just shrugs and comments like, "It's probably just part of the disease process" or "that's not how the stimulator is supposed to work" (with regard to sensation).
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.
Hi MerSun! Archie here. I too have AA, and thought your comment was very interesting. I mean, I’ve been in treatment since 1978 for AA and got an intrathecal pump in 2009 that really helped with pain. But these appliances like a pump or a stimulator don’t fix STRUCTURAL PROBLEMS! So if you have a defect at L5-S1 say, that causes foot drop, you’re not going to have the foot drop fixed by putting in a pump. I guess what I’m saying is that with many of us, our experience has been that we have to fight the war on multiple fronts—this requires having medical resources in more than 1 specialty. Neurology, Orthopedics, Bio-Mechanics, Pain Management, Psychiatry/Psychology, Rehabilitation, etc.
As an example, in addition to my pump, I’m having a stimulator installed to accommodate the changing AA symptoms. As an adjunct, I’m still having injections and will soon have ablations in my neck. I just had a Neurological consult that suggested increases to the levels of meds from my pump. So it all goes together.
The hope I have is for folks in our group to think more holistically— be your own best advocate, KEEP A DIARY, and try to get procedures that make you measurably more comfortable. Heck, if the cognitive stuff works for you, add it to your arsenal!
AA is permanent and progressive— but that doesn’t mean that I still don’t want to fight for control!!
Best, Archie
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
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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