Yes, I do get postional headaches. The pressure in my head and neck upon rising or sitting is bad. Even layinf down for bedtime is rough. Crazy! I think most NL's suck quite frankly. Sorry to be so blunt! They are a waste of my time. My NL always has his stock statement, "WELL, WHAT DOES YOUR NEURSURGEON SAY?" Everytime I ask my NL, he always says that and never answers my question. Beyond annoying!! I do have alot of achiness in my back. Most of all, my left side is most afflicted. Alot of numbness from the top of my head to my toes. Along with facial drooping. Thought it was Bells, but now I'm being told there is so much pressure on my brain stem due to the leak (psuedo) that it's putting pressure on the cranial nerves. I'm friggin bummed about needing another surgery. First one wasn't too terrific. Alot of pain!! Frustration with Chiari goes beyond anything I've ever experienced in my life.
I hope you do better than me with getting some answers. Most of all, I do hope you get relief soon.
Gentle hugs,
CHRISTINE
Denise said:
So sorry Christine to hear you are suffering too.Do you get positional headaches? worse on standing with dizzyness? Im seeing my NS on the 15th may,he is so arrogant and acts like he is god!!! so not expecting much at all.My Nl like yours woudnt pass much comment either,he just said you need to speak to the NS there is nothing I can do for u.Surely if it was going to repair itself like I have read it can,it wouldnt still be there 6mths post op? I think thats what cause my chemical meningitis,had that for 8 weeks after surgery in which he wouldnt treat with meds but just multiple lumbar punctures!! think 12 all in all I had.Surgery was on the 8th Nov and I didnt get any steroid treatment for the meningitis till the 22nd Dec! do you suffer with lower back pain with you puesdomeningcele Christine? x
Christine said:
Hi. Im 8 months post op and I too have a pseudomenningocele. Neurologists tend to not comment about this and refer you to your NS that did your surgery. In my case, I went and got a 2nd opnion from another NS. My current surgeon was dismissive to my compplaints. Gid forbid he admit something may have gone wrong. New NS says I need another surgery. Said that I'm not decompressed ebough and the pseudo that was formed due to a csf leak. When the dura (covering of brain) was opened is when the leak occured. This is common. It's abnormal, but a common problem from this surgery. I'm waiting and getting more NS opinions. In alot of oain and the pressure in my head and neck are terrible. Hopefully I can hold out.
CHRISTINE
I know Christine,its a wretched illness!!! are you having your puseomeningcele fixed then the NS? my head feels like its getting tighter and tighter!!!! been on the steroids nearly 5 days and it seems to have made it worse than anything! nothing will shift it apart from lying down.The stupid garage door fell off its hinge yesterday and hit me on the back of the head!! and since its horrendous,suppose that hasnt done the pusedomeningcele any favours! trust that to happen to me!
Hope u are ok?
Denise x
Christine said:
Yes, I do get postional headaches. The pressure in my head and neck upon rising or sitting is bad. Even layinf down for bedtime is rough. Crazy! I think most NL's suck quite frankly. Sorry to be so blunt! They are a waste of my time. My NL always has his stock statement, "WELL, WHAT DOES YOUR NEURSURGEON SAY?" Everytime I ask my NL, he always says that and never answers my question. Beyond annoying!! I do have alot of achiness in my back. Most of all, my left side is most afflicted. Alot of numbness from the top of my head to my toes. Along with facial drooping. Thought it was Bells, but now I'm being told there is so much pressure on my brain stem due to the leak (psuedo) that it's putting pressure on the cranial nerves. I'm friggin bummed about needing another surgery. First one wasn't too terrific. Alot of pain!! Frustration with Chiari goes beyond anything I've ever experienced in my life.
I hope you do better than me with getting some answers. Most of all, I do hope you get relief soon.
Gentle hugs,
CHRISTINE
Denise said:
So sorry Christine to hear you are suffering too.Do you get positional headaches? worse on standing with dizzyness? Im seeing my NS on the 15th may,he is so arrogant and acts like he is god!!! so not expecting much at all.My Nl like yours woudnt pass much comment either,he just said you need to speak to the NS there is nothing I can do for u.Surely if it was going to repair itself like I have read it can,it wouldnt still be there 6mths post op? I think thats what cause my chemical meningitis,had that for 8 weeks after surgery in which he wouldnt treat with meds but just multiple lumbar punctures!! think 12 all in all I had.Surgery was on the 8th Nov and I didnt get any steroid treatment for the meningitis till the 22nd Dec! do you suffer with lower back pain with you puesdomeningcele Christine? x
Christine said:
Hi. Im 8 months post op and I too have a pseudomenningocele. Neurologists tend to not comment about this and refer you to your NS that did your surgery. In my case, I went and got a 2nd opnion from another NS. My current surgeon was dismissive to my compplaints. Gid forbid he admit something may have gone wrong. New NS says I need another surgery. Said that I'm not decompressed ebough and the pseudo that was formed due to a csf leak. When the dura (covering of brain) was opened is when the leak occured. This is common. It's abnormal, but a common problem from this surgery. I'm waiting and getting more NS opinions. In alot of oain and the pressure in my head and neck are terrible. Hopefully I can hold out.
CHRISTINE