I had my decompression surgery in December of 2011. I have had a decrease in neurologic symptoms since then, but still experience constant headaches, pressure in my head and especially my neck, nausea, pain in my ears, facial pain and ringing in my ears along with some other symptoms. My decompression was successful and I have good CSF flow. I was just reading a doctors report that was written after my last MRI. I knew that I had a "pocket of fluid" that they continue to keep their eyes on. What was bothersome, is that the report said that the psuedomeningocele increased in size between my last two MRI's (less that 6 months apart.)
I was under the impression that it formed after decompression. I was just curious if anyone else has had this or has more information on the pseudomeningoceles. The internet doesn't provide much info. Thanks!
If this was caused by a CSF leak and it is still there causing issues, wouldn't you think that they would have done something about it??? I am so frustrated with these doctors. I am so tired of feeling like garbage and no one seems to have an answer other than Fibromyalgia. I have pain down my arms from my neck....Not all over my body.
Are you still leaking CSF? What did they use for a Dura Patch? I don't see why if it is just getting larger they wouldn't be proactive in stopping the leak. They can seal on their own in some situations. Have they told you where it is and what's causing it? I would definitely be on them. I am so sorry you are having this problem. My CSF Leak made me very sick. I am sure that is horrible for you. Please call them and let them know how bad you feel and things are not getting better with the leak.Please let us know how you are doing & remember you have to be an assertive health advocate for yourself. Don't ever feel like you are aggravating them in a situation like this. I got Meningitis from my CSF Leak. I don't want that to happen to anyone else.
I spoke with my new NL yesterday and they are sending me for a brain MRI and then to their neurosurgery office. She said that is what they were watching me for, but it sounds like it there may be a leak. The thing is, my old NL and NS don't really listen to me. I am so glad that they are looking into it. This has been such a long road with feeling awful. I can't even get up without feeling like I am going to pass out.
The psuedomeningocele is at the incision site, just outside the dura. My NS had used bovine heart tissue. Appartently the leak has been there since right after surgery, but it has gotten bigger. Hopfully, they will figure out what to do.
TracyZ said:
Hi Nicole,
Are you still leaking CSF? What did they use for a Dura Patch? I don't see why if it is just getting larger they wouldn't be proactive in stopping the leak. They can seal on their own in some situations. Have they told you where it is and what's causing it? I would definitely be on them. I am so sorry you are having this problem. My CSF Leak made me very sick. I am sure that is horrible for you. Please call them and let them know how bad you feel and things are not getting better with the leak.Please let us know how you are doing & remember you have to be an assertive health advocate for yourself. Don't ever feel like you are aggravating them in a situation like this. I got Meningitis from my CSF Leak. I don't want that to happen to anyone else.