Hi Jen....u need to find a NS that specializes in this area just like with chiari.....
I wish I had a bit more info to share.....please keep us posted on this.
"selma"
Surgeon reviewed MRI and feels there is nothing there for him to bec concerned with!
I'm going to have to take different route in figuring out pain then!
No phone call as of yet! But the review was done on mri and was told by nurse I've been referred to surgery! Not sure what that means, surgery for pressure or the chiari? Not a clue! Hope they get back to me soon!
eek, i hate to admit this....I don't have a NL! The last one I had said the Chiari is not a issue and causes little issues for people! If you knew me, you'd know how I responded!
I'll just say we had words! He didn't know much about Cavernous Malformations either, the blood vessles they had to remove in 06! He was a big waste of time and money!
I just have my family dr whom is more educated in Chiari then the NL was! She ordered MRI and said she is sending to surgeon to review and see what he sees. If he feels there is nothing then I go back on topamax, which does help a bit! I have a history of seizures, which could be from pervious surgeries.
I will share what I find out! Pet peeve when someone posts somethign but doesn't share the outcome which could point the rest of us in the right direction! :D!!!
I have not had that brain pain from coughing, sneezing, and laughing since four weeks after my surgery. But- these last couple of weeks- I have felt in my heart those pains were close to returning. My NL DID tell me when those pains came back- that would be a reason to call them. I had thought that I was in the clear after two years, but I guess the truth is we are never really in the clear. Good luck to you guys and keep me posted.
Hi...I was wondering about u....good to get an update, but sorry it is not good....I would call ur NL as soon as u notice new symptoms or old ones reoccurring...
When was ur last MRI?....sometimes we develop scar tissue that can cause some chiari like symptoms...so do keep ur NL 's # on speed dial so u can get checks every once in a while.
Jen...I also get the HA's when coughing, sneezing and laughing...ugh...was so glad it was gone...but I do have them back....
I really feel mine r a result of my other issues that remain un treated,.
"selma"
When I find something out I'll be sure to share that with you! The pressure on the face is difficult! I'd take it easy if I was you at this point!
I know stress does play a big role as well for me!
I have the same pains back again, from coughing, sneezing etc! that *****, i was so happy to get rid of those! not sure why they are back
So glad to find this post. I have been decompressed for two years now. The last couple of weeks I have told my husband I feel extreme head and eye pressure. Stress may be part of it (I am a teacher and sometimes the stress of the classroom takes a toll). But today- I went for a mile and a half walk and all day I have felt bad. Feel like someone is squeezing my brain! I also feel rather nauseaus! For the first time in over a year I thought today- maybe I need to call my Neurologist. What do you guys think??? When do I call? When do I just say..... oh its normal??? Any advice?
I think weather is a big role in things!! I've noticed it too, like my brain is a barometric pressure reader!
What I recall, same time last year I was having a lot of issues, only difference is this time I'm decompressed!
I live in the midwest, we just had 90s degrees on a thursday and then down to 40 last night!
My local hosipital is sooo bad! they did my mri and said it was clear and noted NO indication of Chiari, as they were to check the Chiari malformation!
WOW I do not have Chiari now! Wonder why I had surgery for that...maybe it disappeared! I'm laughing by the way! My NS was sent mri, his assistant called and said he's away but will look at it by Monday. But that assistant felt there was something wrong with patch. Monday I will talk to NS!
Have a great weekend!
For me, bending up and down repeatedly REALLY causes those pressure feelings. Other times, I just wake up that way and it lasts all day and I think it must be from the way I'm sleeping. In your case though, the fact that they can see there is pressure on your eye definitely does warrant investigation so I'm glad to hear that they are doing just that. I really hope that everything turns out ok and that the pressure will go down.
Good luck
Carolyn
that dose not sound weird, I also find that there is a connection between weather and symptoms.
Ray
I know this may sound weird and I have no proof but when the pressure outside is low my head pressure is high. Maybe you can have the same effects not sure your area or what the weather has been like but change of seasons is rough for me with all the ups and downs
Hi Jen, sorry you are having problems, I know you had quiet a few problems with CM and other medical problems in the past.
I think stress or any activity that will raise your Blood Pressure will cause CSF pressure to increase. Doing any thing strenuous even sneezing or coughing can cause problems for me. I know it is hard to avoid when you have kids lol but try and rest until you see your NS....
Ray