Chiari Malformation Community
Figured I'd post an update from me
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Figured I'd post an update from me

I haven't been on here in months, but I did have a decompression surgery for my Chiari on Oct 8, 2012. I had my stitches taken out Oct. 22 and began leaking CSF out my incision a few days later :(. Which lead me into having a second surgery on Oct. 29... But since then I've had 2 of the most excruciating headaches imaginable :(. Feels like my head will explode. Last one, I went to the hospital, and found out that I have yet another CSF leak (that was 4 days ago). Since it's not leaking out my incision, I was told I could go home and then call my NS. Anyone else have CSF leaking problems?? I've done everything like I was suppose to and have been laying around, walking occasionally.. Basically I've spent the last 5 weeks in the hospital (Chemical meningitis 4 separate times, and about 5 CSF leaks).
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620923_tn?1393294254

  Hi welcome back....I am so sorry u r having these issues...it does happen, and I am sorry it is happening to u.

May we ask who did ur surgery and where? what type of dura patch did u have? Sometimes the patch can have something to so with leaks or if u have EDS....the skin tears easier and we also may reject the patch depending what it was made of....

Keep hydrated ....call ur NS and rest up.

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Avatar_f_tn
So sorry to hear what you are going through. I am scheduled to have surgery in January and I'm so scared of the outcome. How can they just keep sending you home and tell you to call your ns. My ns told me the leakage and meningitis was rare, but a lot of people posting seem to have had issues with leakage or build up of fluid. Maybe he rarely sees it in his patients but this seems very serious to me. I hope everything turns out good for you. I don't have any info that's going to make you feel better but know that we're all sending you our strength, prayers and hugs.

Veronica
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3052618_tn?1344108635
I have had two different patches Selma. The first patch I had was Bovine strings or something, I rejected that patch which gave me meningitis and the first couple CSF leaks.. It was AWFUL! But the second surgery he said he triple patched me, double stitched, AND glued.. and yet.. here I am, leaking again :(. My surgery was performed by Dr. Wray at Atlanta Brain and Spine Care. I have not been tested for EDS, so I do not know if I have that :(. And thank you Veronica <3. Also I was going to ask, is it normal to have drainage down the back of your throat? Can my dural leak, make it drain there? I know I'm not sick but I do have drainage??
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Avatar_m_tn
Veronica,

Please remember that people are much more likely to post if things go poorly, than if things go well. Before my surgery, I googled the surgery to get an idea of recovery time, and I was a bit scared myself. I am in my mid-40s and not the picture of health I once was. Well, it went fine for me. I am two months post surgery, and you can barely tell I had the surgery (my hair has grown back, just a small line where the hair is getting re-established). I no longer have headaches, but I have not regained any of the weakness in my right hand (the surgeon said I might get some back within 6 months of surgery, but he was not promising anything).

I was back to work in 10 days, back to normal stuff when I would feel a little weak but otherwise normal in about a month. Now I am probably at pre-surgery strength and I can work out again. The trick to me was to get walking as soon as possible. But that was just me. Since they kept me awake in the hospital pretty much the whole time, I started walking in the middle of the night the first night.

Good luck with your surgery.
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1667208_tn?1333111449
So sorry about all you are going through.  The first thing I would say is FIND OUT ABOUT EDS.... I can't say it enough or loud enough!!!!!  It seems that many of us with weird complications eventually find out we have EDS.. just found out myself after nearly three years of leaks, surgeries and complications!!!!  It does not change the problems you are having now but it will change how they deal with you in the future!!!!  Try to get to a Dr. to see if you have EDS!!!  My last surgery just about 45 days ago they did a double patch for me and many many many internal stitches to try and close me.  I have no idea if I am leaking now (have not done an MRI) but I don't care, I am so done with all of this.  If I have a pseudomeningocele this time I am just keeping it.  After four head surgeries plus all my shunt surgeries I am just exhausted and sick of complications.  I too had chemical meningitis and started with a Bovine patch that caused lots of insane issues!!!!  I am so sorry you are doing all this crap too... I hope they find answers for you and help to stop the leaks, it is not fun and very very frustrating.  I fully understand!! Hugs- Zygy
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620923_tn?1393294254

  It is possible u have EDS, that is one of the reasons we reject the patches and end up with a leak.....I have seen it so many times...and I only wish there was a way to get all Drs to test for it and use pericardium when a patient tests positive for EDS.

It is possible for CSF to drain down ur throat, come out ur nose or ears....contact ur Drs and ask more questions and get some testing done.
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1306714_tn?1327260680
So sorry to hear you are going through this.  I also went through 3 csf leak surgeries until the NS finally put in Muslin for a patch and it took.  He told me of his 30 yrs experience he never seen a case like mine.  See if your NS knows if Muslin would help.  Describing your surgeries sounded so much like mine,  I has a small leak which was hard to detect, and they glued scrubed etc to see if my patch would except it, but of course my body didn't.  I haven't had any problems with the leaks since he put in the Muslin so it might be worth asking about.  Wishing you the best and all will work out.
Linda :)
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