Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 Dearest and fellow Chiarians, From what I understand (learning about Chiari over the past 10+ years) not even decompression surgery is considered a " cure " . Surgery only slows down progression of symptoms and at best may halt progression. I would love to hear other views, experience, or knowledge on this subject! Thank you! May your days be filled with love, kindness, compassion, understanding, and relief! With kindest remembrances ~ Namaste, detethered 10-17-07 C1M, TCS, FCS, CCI, EDS, slipped disc C5-6 canday_gurly wrote: Hey All, I was just wondering if anyone who has had the decompression surgery, but still suffers from symptoms has been told by a doctor other than their NS that they are cured? Since having my surgery in May, I have had several setbacks. Each time, they obviously run tests associated with ACM to determine if it it was a result, 9 out of 10; it has not been related. Recently, after suffering a fainting spell at work (embarrassment!), I was rushed to the ER and since I was incoherent, they ran several tests. Luckily a co-worker had advised the paramedics about my ACM.. After everything was said and done, they told my parents it was stress related and not at all linked to ACM. The ER doctor even went as far as to tell them I am cured of ACM. How is that? I have so many issues that have been linked to ACM and continue to have them to this day. My NS even relates them to the ACM. How can I be cured if I still suffer the symptoms? Just wondering if anyone else out there has heard the same. Cheers! in Cali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 Hmm. This has me thinking. My son was just decompressed and he had very minor symptoms before surgery. His CM was 12 mm and his syrinx went from C1 to T12. They enlarged the foramen magnum and removed of arch of C1. Didn't need duraplasty. So my question is: if his brain isn't herniating now and the CSF is flowing correctly, isn't that a cure? I would sure love to hear what a doctor has to say. > Hey All, > > I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 Experience seems to tell us that some people have new or continued symptoms after decompression for a variety of reasons. I am not a doctor or expert on this, just a well informed patient who reads too much. One reason for new or continued symptoms is that research is finding related issues that cause symtpoms like tethered cord and cranial-cervical instability that are not the first look or first diagnosis for ER or, in fact, for many doctors. Another is that a decompression is restoring and repairing structures, a system and a process that was previously compressed, restricted, blocked, etc. The body may still react to even a good repair/restoration. In my case, the neurosurgeon said we would be lucky to get 70% relief, and that is what I got. I still have 30% to deal with adn we have found that I have other, related and non-related problems that also need to be addressed. Also, he noted there might be other damage that occured prior to the decompression that just won't heal. Some people find that they get scar tissue or need decompressions re-done for as many reasons as there are people who had to get a re-do. I don't even want to try to symantics of " cure vs. not cure " part of decompression for Chiari. Decompression is a proven and viable treatment that brings great relief to many and yet for others is just one of many procedures they need. Hanna --- canday_gurly wrote: > I was just wondering if anyone who has had the > decompression surgery, > but still suffers from symptoms has been told by a > doctor other than > their NS that they are cured? ________________________________________________________________________________\ ____ Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 Hi guys... I just felt that I needed to comment this as well... And obviously it varies sooooooooooooooooo darn much from person to person...that is the ultimate " Catch 22 " . TTBOMK, decompression surgery is not considered a " cure " for chiari..... at least by knowledgeable Drs. For many chiarians with structural issues, the decompression is essentially compensating for these, not making them " go away " . But the potential does exist, especially with various catalysts, of problems returning. This is where learning to make some lifestyle changes can also make a BIG difference. However, decompression CAN do more than simply stop the progression of symptoms. ( although IMHO, this isn't a bad thing, in and of itself !) I was one of the fortunate ones who had a reversal of MANY of my symptoms. And believe me, I was one sick pup.... I went from being VERY symptomatic, including seizures, to leading a pretty " normal " life for the almost 17 years since my decompression. Yes, I have to be somewhat careful with activities. Yes, I am more than a little aware of atmospheric changes. Etc, etc.... But I have been able to do the majority of the things that I always did do, within reason. I am just mentioning this to show that with chiari sooooooooooooooooooooo many variables occur. It's a little hard to make absolute statements that would hold true for every Chiarian. Hopefully research will continue, so that we all can learn more and more about this condition. Have a blessed Thanksgiving.. Best wishes, Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa Re: Chiari..Cured? > Dearest and fellow Chiarians, > > From what I understand (learning about Chiari over the past 10+ years) > not even decompression surgery is considered a " cure " . Surgery only slows > down progression of symptoms and at best may halt progression. > > I would love to hear other views, experience, or knowledge on this > subject! Thank you! > > May your days be filled with love, kindness, compassion, understanding, > and relief! > > With kindest remembrances ~ Namaste, > > detethered 10-17-07 > C1M, TCS, FCS, CCI, EDS, slipped disc C5-6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 Very well put, Hanna. It works great for some but unfortunately not > all. I'm keeping my fingers crossed for my son. > > It is kind of like what we have all said all along. Some people have > a minimal herniation and no SM but experience horrible symptoms. > Others have huge herniations and very large SM with little to no > symptoms. (Like in the case of my son.) There is still so much that > isn't understood about CM and SM and the brain in general. > > One thing I've always found interesting is that the brain itself does > not feel pain. But it becomes the spinal cord which of course is the > source of all sensations in the body. Seems weird to me. > > Also, the CSF pulses up and down the spinal column and around the > brain with each heart beat yet it isn't part of the vascular system. > Again, seems so strange to me. > > I have sent the " cured " question to a NSG who specializes in CM and > SM to see what he says. I'll let you know what he says. > > Have a blessed day. > > Experience seems to tell us that some people have new > or continued symptoms after decompression for a > variety of reasons. I am not a doctor or expert on > this, just a well informed patient who reads too much.. . > > > Quote Link to comment Share on other sites More sharing options...
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