Adhesive Arachnoiditis & the Effects on Walking

Posted by louisagjafrwi923 @louisagjafrwi923, Oct 6, 2024

Has anyone have adhesive arachnoiditis. I've had it now for a number of years and it's starting to affect my walking

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@merrysunshine

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).

I sincerely hope this is helpful to you. 🙂

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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.

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@archie2

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

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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

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@joycecamden

the Dr's just don't know that much about it.Its very rare.They put me on Harmone pills.It does help with pain.Fish oil is good to.i wish you luck.

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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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@merrysunshine

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).

I sincerely hope this is helpful to you. 🙂

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@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.

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@gldburg92jeep

I've been reading Dr Tennants books also.
Very informative
Get an extra book just for your physician to read bc most have no clue until they read these books.
Lauren I pray 🙏 your doing better. I'm in VA and it has taken over 10 years for diagnosis and it's great to have a diagnosis but devastating bc of what you have to endure. I'm trying to find out how you Archie and whomever would like to do pm in private over our issues. I will look this up and see what I can find out.

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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

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@gldburg92jeep

I'm up at 430am as soon as I recieve that book I'm going to send you a Pic of it. It's WHAT DRS NEED TO KNOW ABOUT AA. YES DRS NEED TO KNOW.
ITS FROM DR TENNANT. Take it with you to the office. Ask if they would be interested in learning something new. Bc they may not be familiar w our issues , problems, pains ,anxiety or anything at all about this disease.
I pray for you laurean. I want to help as much as i can.

Look on amazon about all his book especiallyones on our disease bc they may not understand as much as they think they do.
Sending prayers. I'm in pain in my rear and hips this morning so bad I'm up already but not moving much.

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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

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@gldburg92jeep

I agree I have been on same meds. I have taken for almost 30 years. I'm not suicidal nor drug seeking for pleasure. I just want to be able to have a social life and deal w my pain and anxiety also just to have a day to get thru for fun instead of just a Dr appointments. AMEN. I'd like to go shopping see my family etc go on an outing when weather changes , I definitely understand.

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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

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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

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@JustinMcClanahan

Hello @louisagjafrwi923, welcome to Mayo Clinic Connect. I updated your title some to include the issues around its effect on your walking. You may also be interested in the following discussions on adhesive arachnoiditis:

"Any Adhesive Arachnoiditis members here?: " - https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/
"anyone been diagnosed with arachnoiditis after spine surgery?" - https://connect.mayoclinic.org/discussion/arachnoiditis-2/

I'd like to invite a few members from those discussions to share their experiences with adhesive arachnoiditis and if it altered walking for them: @kgrainger, @mmata, @the4curtins, @labgirl, @glassart and @colvillegypsy.

@louisagjafrwi923 - if you are comfortable sharing, is the arachnoiditis affecting your balance, gait or some other aspect of your walking?

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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.

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@charlesjr1969

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.

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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.

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