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.
Hi guys, I am also in an arachnoiditis group on Facebook that is quite informative and a great support group. They are also hooked up with Dr. tenant which is an arachnoiditis doctor. He sends out bulletins every week on new stuff if this is of any interest to you. I am Cindy Small on Facebook.
Hi guys, I am also in an arachnoiditis group on Facebook that is quite informative and a great support group. They are also hooked up with Dr. tenant which is an arachnoiditis doctor. He sends out bulletins every week on new stuff if this is of any interest to you. I am Cindy Small on Facebook.
Hi hun in that arachnoiditis group the administrators hold weekly live meetings. They keep all the information on things that work and things that don’t. I really believe you can connect to someone on there. maybe we can talk and I can find out info for you from my fb arachnoiditis group. My name is Cindy Small. Hope this helps. It won’t let me send you my email . I am sorry. But you can get me on Facebook then we can talk privately though messenger
Hi hun in that arachnoiditis group the administrators hold weekly live meetings. They keep all the information on things that work and things that don’t. I really believe you can connect to someone on there. maybe we can talk and I can find out info for you from my fb arachnoiditis group. My name is Cindy Small. Hope this helps. It won’t let me send you my email . I am sorry. But you can get me on Facebook then we can talk privately though messenger
Hi Cindy, thanks for reaching out. First I do have a FB account but I don't know that much about it and I do have messenger too, I will try and look you up... I've had AA for 15 years now, I was seen by Dr Tennant a while back, things are getting worse now,I'm on a walker,we will talk more on something else.
I was diagnosed with AA in the early 70s after a laminectomy. I haven’t been totally pain-free since then, though I have had extended periods of time where I didn’t require medication. I was unaware that AA could have been affecting my back problems through all these years. I thought my bladder issues, where I had to be catheterized every few days, was the major symptom of AA and when that subsided the AA was healed.
I
My AA reared its ugly head a few weeks ago and I’m still feeling the effects of it. I have had a Medtronic pain pump for about two years now and that has done wonders, but it didn’t help the severe muscle spasms I had a few weeks ago. That’s when they gave me the diagnosis of AA again. My pain management doctor is going to add baclofen to my next pump refill which should be next week.
I have had spinal issues since I was 10 years old, but nothing scared me like my AA flare just did!
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:
@JustinMcClanahan...I was diagnosed with phase 3 Adhesive Arachnoiditis May 2009. This was due to Failed bloody Lumbar Puncture on December 10, 2008 resulting in Chemical Meningitis. I was hospitalized for 2 weeks in isolation ward. Balance, gait has progressively gotten worse. I cannot drive and use 4-wheel/rollator walker and occasionally a cane to get around. Falling is a normal occurrence (I joke about "falling over air"). Bladder and bowel issues. My life as I knew it, stopped when my spine was punctured during the failed bloody lumber puncture. SCS implanted August 2009 and helps with about 50% of pain. Didn't want intrathecal pain pump.
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Hi guys, I am also in an arachnoiditis group on Facebook that is quite informative and a great support group. They are also hooked up with Dr. tenant which is an arachnoiditis doctor. He sends out bulletins every week on new stuff if this is of any interest to you. I am Cindy Small on Facebook.
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2 ReactionsI'm looking for a support group not on FB but on zoom or Skype any info?
Hi hun in that arachnoiditis group the administrators hold weekly live meetings. They keep all the information on things that work and things that don’t. I really believe you can connect to someone on there. maybe we can talk and I can find out info for you from my fb arachnoiditis group. My name is Cindy Small. Hope this helps. It won’t let me send you my email . I am sorry. But you can get me on Facebook then we can talk privately though messenger
Hi Cindy, thanks for reaching out. First I do have a FB account but I don't know that much about it and I do have messenger too, I will try and look you up... I've had AA for 15 years now, I was seen by Dr Tennant a while back, things are getting worse now,I'm on a walker,we will talk more on something else.
I was diagnosed with AA in the early 70s after a laminectomy. I haven’t been totally pain-free since then, though I have had extended periods of time where I didn’t require medication. I was unaware that AA could have been affecting my back problems through all these years. I thought my bladder issues, where I had to be catheterized every few days, was the major symptom of AA and when that subsided the AA was healed.
I
My AA reared its ugly head a few weeks ago and I’m still feeling the effects of it. I have had a Medtronic pain pump for about two years now and that has done wonders, but it didn’t help the severe muscle spasms I had a few weeks ago. That’s when they gave me the diagnosis of AA again. My pain management doctor is going to add baclofen to my next pump refill which should be next week.
I have had spinal issues since I was 10 years old, but nothing scared me like my AA flare just did!
-
Like -
Helpful -
Hug
1 Reaction@JustinMcClanahan...I was diagnosed with phase 3 Adhesive Arachnoiditis May 2009. This was due to Failed bloody Lumbar Puncture on December 10, 2008 resulting in Chemical Meningitis. I was hospitalized for 2 weeks in isolation ward. Balance, gait has progressively gotten worse. I cannot drive and use 4-wheel/rollator walker and occasionally a cane to get around. Falling is a normal occurrence (I joke about "falling over air"). Bladder and bowel issues. My life as I knew it, stopped when my spine was punctured during the failed bloody lumber puncture. SCS implanted August 2009 and helps with about 50% of pain. Didn't want intrathecal pain pump.