Adhesive Arachnoiditis & the Effects on Walking

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.

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.

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.

To date, have not found any doctor even willing to read a few of his handouts, that i have printed for them. Tell me they know all about it & tell they are too busy. Sad state of affairs, here in AZ. Only university hospital is over 100 miles away. But new PCP said he would refer me to the Barrows, which is a premier institute for neurological issues. I just gave up. I have next to know feeling in my feet. Can barely walk. Only problem, is that's a 6 month wait for specialist appointments. But will see if i can get seen at the Barrow's. This is where i started & only offer was steroids Glad you got your DX, but every one is so different. So don't despair too much. Your situation could be less severe I had several honeymoon years guess i just got too cocky let's hope maybe new year, will be better

I just read I'm at catastrophic part .
The worse.
But I'm still trying to get better.
I'm reading more on this
I wondered why I can't understand temperature variations during night and some days. It's crazy.

Does anyone else have this problem ??

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. 🙂

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

Hi, Archie!
Thanks for your reply.
I'm sorry, I should have been more clear - I did not expect the stimulator to fix my numbness/weakness/foot drop. I meant that, oddly enough, I regained some feeling and ability to control my right leg once it was placed; however, the foot drop is still very much present despite this. I was surprised that my doctors aren't interested in knowing why the stimulator helped with this. I joke and offer myself as a free test subject! I do have a GI, urologist, physical therapist, and pain management specialist. I am also well known in the casting and manometry clinics, as well. Sadly, none of these doctors treat AA and only my pain management specialist has even bothered to read the bulletins and research abstracts I bring in. The others basically see me once or twice a year and watch this progress with me. Basically, I'm paying medical spectators. 🙂

It is quite helpful to read what others deal with, as it gives me some guidelines to adjust my expectations. It is both a relief (I'm not alone!) and a sadness to know that others struggle with such basic things as balance and walking. But I do appreciate the attitude of hope and sometimes humor I see here.
Cheers!

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.

Hi Lauren here. Went to a new pain specialist for eval for pain pump. He is very concerned about fact i have a ton of scar tissue. Apparently, there is a big risk for a leak. He is willing to prescribe valium, as well as pain pills ( I asked him if he was familiar, knowledgeable about Arachnoiditis & he replied in the affirmative). He appears young & said he is willing to work with me. Since Everyone was brand new at my old pain group, decided to switch. I am currently taking 5mg oxycodone three times a day & think? i get 2 valium's a day. He wants me to try & manage pain with oral meds, see how i do. I can relate to the above...forget how many specialists i have, No one of them willing to read all the stuff i downloaded ( DR Tennant's material) I do have a DRG stimulator in my right leg. I have serious foot drop & so much nerve pain, hard to tell if it's helping. Don't think i have any expectations, any more. Balance & walking are now very difficult. New PM doc, said to keep working out, as much as possible. I am very limited in activities for exercise. Are U getting a spinal cord stimulator?? Mine is a dorsal root ganglion stimulator, DRG.... don't ask me details for this. I have had stimulator for 6 or 8? years. Couldn't even tell him who put it in. Around here, tremendous turnover with doctors, NP, office staff etc... My new PCP sending me to the Barrow's neurological for an eval. Probably wasting my time, but no one else around here, familiar, or willing to treat AA. Also, because i have poly neuropathy & peripheral neuropathy, a shoulder that needs to be replaced, PM doctor not sure the pump would be enough. Would need oral pain meds, as well as the pump. My life now seems to revolve around managing my symptoms Wanted to ask if U have Brain Fog? Sleep deprivation is a big part of my life. But i feel like i have lost about 30 IQ points. When i was on Facebook, others complained of this too. Think
i have spent last 25 or more years, dealing with spinal issues, fusions, sciatica, paralysis Nerve pain issues in various areas. Have U found PT to be of much help? I can't drive anymore, so i have transportation issues too. Coupled with financial issues, it can be overwhelming,,, Also, many drug resistant UTI's from suprapubic catheter. Now having some bowel incontinence. Am i depressed? definitely quite anxious. Had to describe my emotional state to new PM doc, & he seemed to confirm, that this goes with DX of AA. Was in the ER, for UTI diagnosis. Doctor told me no UTI... got a call confirming that i did have a couple of bugs growing in my urine. While i was there, i got Dilaudid, without even asking. Told him that i was suffering from AA, and he just gave me it to me. It all just depends on which doctor one gets in the ER. So i will have to do more research on pain pump, leaks & risks, in more detail. Guess i should have figured out, that there would be lot's of obstacles with pump, just like every thing else!. One thing that makes me sad, lot of people assume that u go to the doctor & are cured, feel better. They don't understand much about pain, or chronic conditions I understand that AA not the norm, but it can be frustrating.