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    Old 03-25-2008, 10:01 AM   #1
    apartipilo
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    arachnoiditis

    Has anyone been told by a doctor that arachnoiditis is surgically treatable? There's this doctor in Germany ( Dr.Warnke ) who is apparently having success at treating this condition surgically. It's called a THECALOSCOPY. Google his name along with arachnoiditis if you want more info. It sounds promising. Maybe it's heading to North America soon.

     
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    Old 03-25-2008, 02:09 PM   #2
    ms_west
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    Re: arachnoiditis

    I am pretty certain that this is not surgically treatable. Moldova has this and recently had surgery but they had to stay away from the area that had this arachnoiditis.

    Hopefully she will respond to this post.

     
    Old 03-25-2008, 07:32 PM   #3
    stymie82
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    Re: arachnoiditis

    I was diagnosed with arachnoiditis October '07. I am a member of the premier online group for this affliction. I would have to take a long, hard, look at any procedure that would be invasive. Yes, you can remove scar tissue short-term and maybe have some improvement, but scar tissue loves to grow back and with a vengeance. I will check out this doc online and thank you for the info. If this helps, it would really be a first.

     
    Old 03-31-2008, 09:38 AM   #4
    apartipilo
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    Re: arachnoiditis

    Am I able to ask you what online group you are a member of ? Is it helpful? How were you diagnosed? My surgeon says I don't have this but a recent MRI I had showed that I "may" have it. I don't know what to think? Anyhow, did you look up the work being done by Dr.Warnke in Germany on treating arachnoiditis?

     
    Old 03-31-2008, 10:32 AM   #5
    Moldova
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    Re: arachnoiditis

    Apart,
    I was diagnosed with this condition almost a year after my first lumbar fusion. Arachnoidities is a condition which people "inhereted" durind spinal surgeries (when blood ends up in a sack), from Myelogram test (dye is solution) or from preservatives in a steroid shots they treat spinal pain.

    I had all 3 of those done so very hard to say when exactly it happened. One thing is for sure: not treatable, not curable and non-operable.
    I totally agree with Stymie about scar tissue loves to grow after each invasion. And it does. More surgeries, more scarring.

    My second fusion was done at Hospital for Special Surgery by DR Camissa, who is a world know spinal surgeon (you can find info about him on ***). He the only one who operated on me, since I considered non-operable.
    And even him did not touch that area, he fused upper levels, above my previous fusion.

    They work in there as a team: your surgeon, PM DR and Neurologist. All of them explained to me that ARCH. is a condition of severe scarring of spinal cord and nerves. This condition is extremely painful, usually progresses in time, causing pain which nacro meds can't even help.

    Becides my surgical pain, nerve damages in legs/feet i have to deal with pain from Arachnoidities. It's Neurological pain, you have it all over your legs, back, feet.
    Some days I can't even get up to go to the bathroom, some days I am able to walk 20 minutes which for me is a great day! I try my best to leave as good as it gets for me because I know eventually it will be more pain and more Neurological problems.
    I wonder if you are having any pain or it's just MRI stadies? Sometimes MRI as other tests may have artifact and not as clear. I would definately have another MRI and CT (that is what they do to confirm) done and confirm it with NEUROLOGIST, he is the one who knows about it a lot. My Arachn. is very obvious on all pictures, they confirmed it when I had a second fusion.

    Honestly I read about DR. Warnke. I have to say this to you, dear heart, and I hope it will not sound too discouraging. I leave with all my spinal problems since car accident and I did so much research, learned so much from other's people experiences, read so many books... And what i think now is: be careful.
    There are a lot of research which scream: we found a solution for this or for that and ends up be a nothing but noice. Look at that laser surgeries for spinal problems? Some big Dr in Florida reported the best results, not a long recovery time, and so on. How many people went and had this done and what is the results? Did you read this article? I leave in NJ, but I met a lady who had this done by that DR. Since than she went to *** to be fixed and has numerous problems.
    I want to believe in miracles for us, but I think if they would exist we would know about them. I don't say that in other countries they don't have a great
    research, especially Germany well known for their medicine and research, but as many good DRs as I met and had conversations with about my ordeal and new studies, I think they would hear something about it.

    I don't want to sound negative at all, but this is just me. After having so many invasive surgeries as I had I am a bit sceptical now about having them.

    Let me know if you hear something else and good luck to you.

     
    Old 03-31-2008, 08:32 PM   #6
    stymie82
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    Re: arachnoiditis

    apartipilo,
    I was on the healthcare merry-go-round getting tests at neurologists, a consult with a neurosurgeon, then a second opinion at another neurosurgeon. All this was happening as I continued to work a very physical job and having more and more pain and greater neuropathy that started in one leg and then in the other.
    All the while I just figured there would be a surgical fix and that I would in time recover. My first neurosurgeon did not see too terribly much structurally wrong that he wanted to cut on. Thus, the second opinion.
    In the meanwhile, I had found this forum as I was really looking for answers as to why I was becoming increasingly disabled and in much more pain. That's when I found a thread by Moldova concerning her recent diagnosis of arachnoiditis. Having no idea what it was, I started searching on the internet for help in understanding it. I found the online group dedicated to it and read about 70,000 posts in it over the course of the next couple weeks. Meanwhile, I had gotten a new MRI and had the films myself to bring to my surgeon. I learned what to look for in the way of nerve clumping, and was nearly certain I had the disease. When I went for the next surgeon visit, he had my films up on viewer and was showing me where he thought he could do a fusion, but doubted it would help w/leg pain as I had neuropathy, not sciatica. I then asked him to please put up all the axial views at once. He did so and I asked him if he saw any evidence of clumping of the nerves. I did not use the word arachnoiditis, as I did not want to lead him too much. He looked for only a few seconds and said-"Yes, you have arachnoiditis". He gave me my films back and said that surgery was out for me.
    I will always be indebted to Moldova, as I might have had a fusion that would have made me much worse. I had a terriible trauma to my lumbar area in 7/98, falling 15' from an extension ladder, landing first on a concrete raised curb across my lower back. I had a laminectomy 2/99 after having 3 ESIs that didn't work before surgery. Surgery was successful for 6+ years until the scar tissue of AA reared it's ugly head.
    I know this forum does not allow links and I think if I even write the name of the group, it will be deleted. You might search for Dr. Sarah Smith or for arachnoiditis group online.
    I checked out the new surgery online and I'm a little skeptical. There is a doc in Portugal who also uses a similar technique of minimally invasive surgery. Consensus in the group was that no one would ever allow anyone near their cord again. There is someone in the group who had this type of surgery in America and was much worse off as nerves were disturbed and was very unhappy he tried it. Myself, I would have to see a really long-term study and follow up with a great success rate before I would consider. Remember, my scar tissue didn't build up for 6 years. Either the fall, surgery, or the ESIs or all three might have been my downfall. Please do a lot of research before letting anyone into your spine. There are at least 3 women in my group who had no other risk factors except an epidural for childbirth. I think two of them at least were botched, as they had spinal leak, headache etc. right during procedure. Hope this helps and may the Lord richly bless you.

     
    Old 04-01-2008, 10:14 AM   #7
    jaydar
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    Re: arachnoiditis

    Actually I had read that arachnoiditis is scarring from prior back surgery,and I bekieve the procedure here in the USA is called a foraminotomy.It surgically opens the thecal sac to take pressure off of the nerveroots.My neurosurgeon has recommended this for me with the possibility of double fusion if he feels it's necessary when he gets in there and has a good view of things.
    My prior surgery was microdiscectomy/laminectomy at L4L5.
    That surgery worked fine but 7 or 8 months later I had another injury which I believe tore tissue wherethe first surgery was...so I have protrusion in the thecal sac.
    It's been 6 years now and I'm still waiting for approval for corrective surgery by comp insurance.
    Even with the surgery I'll probably never be close to normal again but I may be able to stabalize the area and experience less pain.When I get an episode it is intense dibilitating pain......so I don't dare do anything that might aggravate it.It sux to live this way.

     
    Old 04-01-2008, 10:23 AM   #8
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    Re: arachnoiditis

    Stymie,
    I agree with everything you said - I couldn't say better than that.
    I am so glad my post helped you to look for your problem. Unfortunatelly Drs don't know everything and we have to be our own advocates; they are just humans.
    I know how debilitating this condition is - I leave it. But the good thing is that you know what this is, you prepared for it mentally. You know what this is at least and you don't have to search for answers. Becides stressful, it;s also very expensive: to go from DR to DR, more tests...

    I am so sorry, honey, you are leaving in so much pain. I also search on Internet for more studies, more research on this condition and let's hope one day they will find some cure for all of us.

    Hugs to you all and best wishes!

     
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