Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Well said, ! I totally agree with you. I was told that decompression surgery was going to make me feel better, and I fell for it. All I got was surgical complications, which meant more surgery, and guess what? I think the devil I knew was better than the one I have to live with now! I wish I'd never had decompression surgery! If I could go back in time... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 & all.. Hi guys.... , so sorry that you have had continuing issues with CM, post-op. This, sadly, can be the case. On the other hand, many have had huge successes, which have given them their lives back. I was fortunate enough to be one of these...... and that was 20 years ago. This is one of the reasons that I continue helping with CM support. It is important.... The main thing that I stress with anyone considering decompression surgery is to REALLY do their homework on the doctor that they have selected. This is SO important. Believe me, they are not all created equally, either in knowledge or experience. And one needs to look for a doctor with GOOD CHIARI experience...not simply " the best neurosurgeon in the area " . Unfortunately, this " best neurosurgeon " may not have much of a clue about chiari. We have seen this time and time again. If you guys haven't read them yet, you might be interested in the " good/bad " stories on the CCI website. They can help to show both sides a bit... http://www.chiariconnectioninternational.com/stories.php ( mine is on pg.2 of the " good " ) Just thought I needed to mention the other side of the coin.. Take care, Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa ----- Original Message ----- To: <@s surgery right for you? It's a tough decision to make. > Well said, ! I totally agree with you. I was told that decompression > surgery was going to make me feel better, and I fell for it. All I got was > surgical complications, which meant more surgery, and guess what? I think > the devil I knew was better than the one I have to live with now! I wish > I'd never had decompression surgery! If I could go back in time... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 I could not agree with you more Sally! Nancey, I'm truly sorry your having a hard time healing and getting relief from your symptoms of Chiari. I had to take public transportation in NYC yesterday for the first time in years, to teach my new Au Pair how to get around via subway and get the bus back to our house in NJ. I'm in so much pain today! And I had on the full torso/neck brace! Keep in mind driving over a bump in the road or the person driving us to places uses the break peddle a little more than others, we will feel so much pain maybe the day of but mostly the next day! I personally struggled with only being able to " Look Nice " for years! But it's true! If i spend to much time on the computer, lift something out of my weight limit, and even something as simple as not get enough rest; I personally feel awful! Please look at the list Sally sent you! Our condition is not a normal neuro problem that can be fixed with one surgery or a pill! It's a whole team of folks that hold us together! Starting with your support group! You can say what ever is on your mind and we will not judge you (we all have had the bad days)! And what works for us may not work for you but the list of Chiari doctors is your golden gate to recovery of symptoms! physical therapy and massage therapy is so important after surgery! I'm personally looking into seeing a neuro-psychologist, to help me with pain level of my permit situation. Sometimes we have to wait for the right surgery or treatment and dealing with the pain while waiting is the worst punishment I have ever felt! We're here for you! Bea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 VERY well put, Sally! Everyone is going to have different results from surgery and choosing the correct doctor has a lot to do with the results. (Though still not all.) I know when I had mine done in 2008, there were only about 11 surgeons in the US considered to be " chiari experts " by chiarians. It is crucial to go to someone who has had a lot of experience. I was around the thousandth mark for my surgeon. That was enough experience for me to really trust that he knew what he was talking about. And then too, he didn't just want to rush right into surgery either. I had been on most medicines used for my various symptoms but he knew of ONE more that might work so he wanted me to try that BEFORE jumping into surgery. When a neurosurgeon does that... it makes a person really trust 'em! Do your RESEARCH!!!! Blessings, Cortney Quote Link to comment Share on other sites More sharing options...
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