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Old 12-27-2006, 08:36 PM
Rudy's Mom Rudy's Mom is offline
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Default CSF Leak

I just got back from another visit with my surgeon. It's been 6 weeks since my second MVD. I've been having so much pressure in my ear and also fluid in it. In the morning, my ear is all crusted shut and if you put a Q-Tip in just a little bit it comes out all wet. It sounds like it's all squishy inside. Also, my nose and eye on that side water. I'm still having the headaches, too. He feels the best thing to do is to go back in and look for a CSF leak. I feel pretty sick about the whole thing. I was wondering if this has happened to anyone else. Any words of encouragement will be greatly appreciated. Let's hope the New Year brings us all better health. Sheila
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Old 12-28-2006, 12:28 AM
Heismjoy Heismjoy is offline
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Default i am praying

Stellia

I have not had a CSF leak.. much less two MVD's. But I feel compelled to write to you and tell you how sorry I am to hear this news.. and mostly that I will be keeping you lifted up in prayers. There are plenty of folks on this list who have had to have surgery to check into CSF leaks after MVD's. And if it is found and fixed.. that will indeed be worth it.

I hope many can write you with some direction and especially words of encouragement.

Martha in Indiana
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Old 12-28-2006, 08:54 AM
ella138 ella138 is offline
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Hi Sheila
I'm sorry you are having surgery related complications but this is something that is repairable and you know you will feel so much better once it's fixed. I was just reading back to Susan's story. She had the same sort of symptoms and had to go through a repair as well. Here is that thread. Although we have not heard from her in a while, her post sounds like she is so much more comfortable now. Let's hope you can get all this under control ASAP so you can move on with 2007 in a pain free way with a focus on living a life that does not revolve around TN related issues.
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Old 12-28-2006, 10:08 AM
Rudy's Mom Rudy's Mom is offline
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I contacted Susan and she told me she is doing much better. It was encouraging. The thing I'm concerned about is that the doctor is only going by my symptoms. He hasn't done any tests to be sure it's a CSF Leak because of my severe allergies. The hospital said the tests were too dangerous and refused to do them. They need to be done with contrast, and I cannot tolerate them. I keep thinking "what if it isn't really a leak and I have the surgery for nothing". I suppose the doctor has seen enough cases that he knows by the symptoms what it is. There didn't seem to be any doubt in his mind. What do you think? Sheila
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Old 12-28-2006, 11:21 AM
stefanies stefanies is offline
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Sheila,
I am so sorry you are going thru this. I know complications are no fun. You just want to have the surgery, and get on with it!
But I'm sure your surgeon wouldn't risk "cutting you open" if he wasn't sure what was wrong.
These leaks are very common with an MVD. In fact, my MRI states I have some fluid floating around in my brain...whatever that means. But you need to get it fixed, and I would just trust your doctor to do the right thing...and that's a lot coming from me! LOL
I'm sure it'll be OK and you will come out of this feeling better. Keep us posted!
Stefanie
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Old 12-28-2006, 12:10 PM
Jane Jane is offline
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Sheila,

So sorry to hear what you are going through. It must be so frustrating. You have the surgery and are feeling better and then this comes along - and especially to be 6 weeks post-op. But, as others have said, the surgeon wouldn't be wanting to go back in without good reason. And you don't want to keep messing with a CSF leak. And this is a reminder to me that being just 2 weeks post-op, I still have a long long way to go. I am still having headaches, though they are getting better and some sharp ear pain when I overdo, but nothing like you have been describing. Hang in there, Sheila. You'll be in my prayers.

Jane
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