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03-15-2010, 10:56 PM | #31 | ||
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Hi, I am 20 years old, and had the chiari malformation surgery Nov. 11, 2009. I have yet to return to work due to severe headaches. I have been put on a headache preventative, but it hasn't helped me. I have had an mri done in Ja, and my doctor said everything looked great, but i still almost feel the same as I did before the surgery. Does anyone else have that problem? I hope someone can help me out, due to still not working and its been 4 months and still feel like crap. The pressure and everything is back, right by my incision area, where the headaches were before. I would appriciate any help. Thank you. ~Stephanie
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03-20-2010, 12:06 PM | #32 | ||
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Hello all,
I know this is an old thread but since there has been some recent activity, I hope this is a good place to turn for answers. My story begins like most, diagnosed on accident when the doctors couldn't find anything else wrong to explain away my symptoms. Then came the searching out a doctor who actually knew what he was talking about. All in all, I am lucky since I only struggled with it from diagnosis to surgery for two years. I know many people get bounced around a lot longer then that so I count my blessings. My symptoms included chronic pain, fatigue, restlessness, headaches (the ones that would come with positional like bending over and migranes that were made worse with movement). Finally I was referred to a neurosurgeon and we decided not to do surgery because none of my symptoms were neurological. About 3 months later I started developing bladder issues that weren't normal, even for someone with Chiari. Instead of not being able to control when I went, I have issues being able to go at all. I sit down and sometimes it takes me 10 minutes of convincing to be able to void my bladder. At this time I was sent to a urologist who determined my bladder issues were a result of my syrnix or Chiari and my NS and I decided surgery was the only option to stop the progression of this neurological symptom. I had my decompression surgery on the 27th of january 2010. Afterward I developed horrible headaches that put any of my Chiari headahces to shame and it was determined it was due to a leak in spinal fluid (probably at the dura graft site). My doctor let me rest for almost a month hoping the leak would correct itself but it didn't. Life was misrable. I couldn't even go to a doctors appointment without spending the next few days in agonizing pain. It even landed me in the ER 3 times when nothing would help to stop the pain. (Usually in a CSF leak headache, if you lay down, it goes away. When you're up an about it undoes all the bodys' progress at stopping the leak and the longer you're up for, the longer it takes to get the headache under control. It's one of the main sign of a CSF leak and I only say this because I didn't know this and have ran into many people who with that information alone, have lead to their being diagnosed with a CSF leak). I was readmitted into the hospital for a revision on my original surgery and they were unable to determine the source of the leak. My doctor went in and took out some of the stitches on the dura patch and put more "glue" around the site. Then he put in a lumbar drain to divert the CSF fluid and lower the flow to allow my body more time to heal. This was done on the 8th of march 2010. I know I am only 12 days post op but I am feeling better then I have in years! My question out there is what are the life long limitations that occur from the decompression surgery. My doctors say for each person it's different which I agree with but he said that trial and error is the only way to know my personal limitations. This scares me because if I do something, the only way I'll know if its a limitation is if it makes things worse. I don't even want to attempt to do something if it's going to make things worse. What have any of you out there found that makes the symptoms return and/or worsen? I've been told to stay away from amusment park rides like roller coasters and things like sky diving but i've also been told something as simple as running has ruined all the progress some people have made. This is hard for me because I am in the military so I will no doubt have to try but if there is some advice I can get from people who have gone through this I would greatly appriciate it. Thank you so much in advance for your help. I wish you all the best of luck in each one of your "fight against Chiari." |
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03-23-2010, 05:54 PM | #33 | |||
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03-24-2010, 02:03 PM | #34 | ||
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03-24-2010, 05:19 PM | #35 | |||
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These surgeonns are WAY to quick to grab a knife and start slicing up our heads,, if you can get away without surgery, PLEASE DO IT,, it works for some people,, but alot of us suffer a lifetime with more problems then what we started out with
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03-25-2010, 06:48 PM | #36 | ||
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I am new just having my Chiari type 2 Malformation surgery March 4th 2010. We knew there'd be side effects like nerve bruising but besides no feeling in my good leg i have no sensation in kidneys or bowels. Im also hoping to get a positive thing on this surgery
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05-05-2010, 03:19 PM | #37 | ||
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05-06-2010, 11:39 AM | #38 | ||
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Hi momof4,
Well just your userid explains a bit of the slow recovery!! LOL..I too have a herd of kids and a "very large brain" . That is how I explained my decompression to my younger kids. I had a 10 mm herniation diagnosed in 11/03 and surgery in 10/04. I too felt incredibly weak and frustrated with the pace of recovery. I became very stiff and felt like my shoulders and neck were on fire with "nerve burning". My therapist (not my surgeon) put me on Neurontin (low low dose) to help with some of the pain. The most important thing for you to remember is that you are recovering from Major Surgery. You did not just have a mole removed or your appendix taken out. Every muscle in your neck was basically severed and your skull was opened up. Then in my case the dura membrane covering the brain was opened, my cerebellar tonsils were lifted slightly, scar adhesions cut away to restore CSF flow and then a synthetic patch sewn in place to allow extra room for the brain. The back portion of my 1st vertebrae was removed and then my muscles were reattached. MAJOR STUFF!! I picked up the O R reports from my surgery and was much more patient with myself after reading what was done while I was sleeping. I also made my family read it so they too could develop the compassion and support I needed from them. Just be patient and don't push yourself. Maybe a pain management doc could help out with some of the pain while you recover. I know how you are feeling and I can tell you it does get better. Last edited by chiarichic; 05-06-2010 at 11:43 AM. Reason: add more |
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07-21-2010, 03:47 PM | #39 | ||
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07-29-2010, 03:06 PM | #40 | |||
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