I wanted to give you all an update post decompression surgery in April 2012. Although I did very well after the decompression, in the last year or so I have once again started to have symptoms. The following are my symptoms:
Pressure headaches - mainly to the back of my head
I usually wake up in the middle of the night and I also wake up with a headache
Vision problems
Trouble swallowing
Nausea
Dizziness and balance problems
Fatique
Exhaustion
Neck and should pain and stiffness
Body/ muscle aches
In January of this year, I had a consultation with a Chiari specialist at the UCLA Chiari Center. He stated that I have excessive CSF fluid collected at the base of my brain - this was based on the most recent MRI's. He recommended that I undergo a procedure to correct the size of the craniotomy from the decompression. I will have this done mid June of this year.
Three weeks ago I had a very bad cold along with a severe and persistent cough. I've noticed since then that my nose is runny all the time. Could I have caused additional damage with the cough that I had? It also seems that I have been feeling worse since my cold.
I just wanted to give you an update of my current situation and see if anyone else has had a similar experience. Thank you.
Who did you see at UCLA? And why did they not recommend a shunt if you have fluid build up? I have a shunt for that very reason and shunt can be a pain in the rear but they are certainly better than the alternative.
Hi there,
I had my decompression in 2004. This was followed by multiple shunt revisions for my hydrocephalus. In Jan. I had another revision, also unsuccessful. Most of the symptoms you have, I have too. I wish I had an answer. Just know others out there have the same condition. Your doctor’s recommendation sounds reasonable. Good luck with it and please post your progress.
Sorry, you have to go through more pain and complications after surgery. About nose....my nose is runny all the time when I have headaches. Sometimes it is just gush of clear liquid....it has been this way for years (I am very used to it). My most recent cine MRI was normal (no blockage at the time of MRI) and still worse symptoms I have are only headaches, nausea and very rare drop attacks. My feel is your runny nose could be coming from existing pressure in your brain (liquid build up you mention) and has nothing to do with cold (except for like you say hard coughing could have made things worse). And if it is constant or getting worse you might want to bring it to your Dr's attention.
And since we seem to be in the same area I want to mention neurosurgeon I've been seeing (may be if you want a 2nd opinion on your present situation and solutions). He is also experienced with Chiari surgeries and he is working in UCI medical center http://www.ucirvinehealth.org/find-a-doctor/h/frank-hsu/
He is a 1st Dr who could "HEAR" me and understand what I am going through because he sees Chiari patients on a daily basis. I did not have surgery yet but when time comes he is likely to be the Dr I would trust with that.
I have a call to my Dr. already as I am concerned over the increase in headaches and everything else. I just feel terrible most of the time. I will certainly keep the Dr. at UCI in mind, in case I need to change doctors. Thank you and have a good weekend.
Jenny
Ada said:
Hello,
Sorry, you have to go through more pain and complications after surgery. About nose....my nose is runny all the time when I have headaches. Sometimes it is just gush of clear liquid....it has been this way for years (I am very used to it). My most recent cine MRI was normal (no blockage at the time of MRI) and still worse symptoms I have are only headaches, nausea and very rare drop attacks. My feel is your runny nose could be coming from existing pressure in your brain (liquid build up you mention) and has nothing to do with cold (except for like you say hard coughing could have made things worse). And if it is constant or getting worse you might want to bring it to your Dr's attention.
And since we seem to be in the same area I want to mention neurosurgeon I've been seeing (may be if you want a 2nd opinion on your present situation and solutions). He is also experienced with Chiari surgeries and he is working in UCI medical center http://www.ucirvinehealth.org/find-a-doctor/h/frank-hsu/
He is a 1st Dr who could "HEAR" me and understand what I am going through because he sees Chiari patients on a daily basis. I did not have surgery yet but when time comes he is likely to be the Dr I would trust with that.
Gosh it doesn't seem to get better for us huh? I am hopeful that after I have the revision (shunt) done I will feel better. I am highly considering applying for disability. Thank you for responding and the good wishes.
Jenny
Kalie Stern said:
Hi there, I had my decompression in 2004. This was followed by multiple shunt revisions for my hydrocephalus. In Jan. I had another revision, also unsuccessful. Most of the symptoms you have, I have too. I wish I had an answer. Just know others out there have the same condition. Your doctor's recommendation sounds reasonable. Good luck with it and please post your progress.
I see Dr. Ulrich Batzdorf (he doesn't perform surgeries anymore but is the surgeon of record), at the UCLA Chiari Center. He did recommend a shunt but I opted to wait on the surgery due to work obligations. As mentioned, my symptoms did not get worse until I had the very bad cold a couple of weeks ago. I am hoping to had the surgery done mid June. Thank you for your good wishes.
Jenny
Grandma Carol said:
Who did you see at UCLA? And why did they not recommend a shunt if you have fluid build up? I have a shunt for that very reason and shunt can be a pain in the rear but they are certainly better than the alternative.