Thank you very much for your response, all the answers I’m getting help me to get te comfort I need right now, and as you said, somehow I feel I’m not all alone with this situation.
cindy68 said:
Hey Lourdes, I have experienced facial numbness. The neurologist and surgeon doesn't feel that there is concern nor do they feel I need surgery just manage thins on my own. I have a 7mm cyst which as I have found it really is no issue of the size. This site and those that discuss their symptoms and how they deal with is a lot of help and comfort, but always run everything past your physicians. Just remember your never alone and sharing your concerns with the forum will help reduce your anxieties. Best of luck.
Oh yes, we DO have muscles at the base of the skull!! FYI...every surgeon I "interviewed" all told me that the most painful thing after the decompression surgery is the fact that they have to cut through that muscle to get to the skull!!! I never knew that either... but ohh its there!!! The thought of cutting through those muscles creeps me out way more than the thought of removing some skull!!! goingcrazy said:
i get those feelings sometime in the back of my head and neck it does feel like something has just shocked me
Lourdes said:
Thanks for your response, I didn't know we have a muscle at the base of the skull; on October 25th I felt like an "electrical shock" on my head in one specific area (back of head) I felt it 3 times,I don't know if that is related with all this or the Chiari or not.
goingcrazy said:
Lourdes
when I first found out I had chiari my right side of my face went num then my whole face was num along with my whole body after my surgery it was good but I started having right side of the face to go num my dr put me on muscle relaxers and it has got better according to him there is a muscle at the base of the skull and I have bad muscle spasms and that's what causes my face to go num it is very scary.
My numbness in my arms and cinsations in the face,neck and head.There have been for a very long time,over the years there hasn’t been anything life threatening because of it.I have cinsations in my chest when this happens I get so hot all over.Does anyone have anything like this? My surgery is a year out and these are some things left to deal with. There is still headaches but not like before,I’m still glad to have found help and I’m hoping some of these things will settle down.The NS says that it can be another year or more before we know for sure.Hope you get to the bottom of the numbness,I think it is part of the chiari illness there’s always weird feelings because of nerve involvement.There have been pain and strange feelings in my neck and head since the decompression too.
Beeba... what is dysautonomia?? I see it is brought up here a lot.I have never heard it mentioned by any doctors, but then again, I had to fight through over a dozen doctors just to find out how many mm's i am! Beeba said:
Lynn, not numbness related - have you had any treatment for the dysautonomia? It won't make everything perfect but you sure can feel better than untreated
Lynn Messer said:
My numbness in my arms and cinsations in the face,neck and head.There have been for a very long time,over the years there hasn't been anything life threatening because of it.I have cinsations in my chest when this happens I get so hot all over.Does anyone have anything like this? My surgery is a year out and these are some things left to deal with. There is still headaches but not like before,I'm still glad to have found help and I'm hoping some of these things will settle down.The NS says that it can be another year or more before we know for sure.Hope you get to the bottom of the numbness,I think it is part of the chiari illness there's always weird feelings because of nerve involvement.There have been pain and strange feelings in my neck and head since the decompression too.
Yes Lynn, I get the feeling of heat. I have always just equated it ti nerve damage Beeba said:
Lynn, not numbness related - have you had any treatment for the dysautonomia? It won't make everything perfect but you sure can feel better than untreated
Lynn Messer said:
My numbness in my arms and cinsations in the face,neck and head.There have been for a very long time,over the years there hasn't been anything life threatening because of it.I have cinsations in my chest when this happens I get so hot all over.Does anyone have anything like this? My surgery is a year out and these are some things left to deal with. There is still headaches but not like before,I'm still glad to have found help and I'm hoping some of these things will settle down.The NS says that it can be another year or more before we know for sure.Hope you get to the bottom of the numbness,I think it is part of the chiari illness there's always weird feelings because of nerve involvement.There have been pain and strange feelings in my neck and head since the decompression too.
Beeba,thanks for your reply,I haven’t been treated for the dysautonomia.Dr.Rosner put this dx in the report he sent me a after the 1 year ck.up he didn’t really talk to me about what I need to do. I will probably talk to his office and get his advice on where to go from here.Does dysautonomia ever get better or does it progress? It would sure be nice to get relief from some of these remaining symptoms,I can live with less than perfect just improved would be good.Thanks Lynn
Interesting, thanks. I actually had a tilt table test done back in the day when i was being treated by a bunch of morons who should have caught the chiari. The worst part for me by far was that crap they injected me with to speed up my heart rate (yes, mine is very low). the said they were looking for myocardiosyncophy. Now i wonder about POTS. But if I do have it, is there anything to do about it anyway??? Beeba said:
So many symptoms I guess I forgot to mention - racing heart for no reason. A normal dr will say anxiety. But you have to ask yourself and be clear - which came first the chicken or the egg? Anxiety your mind starts to panic then your body follows along. With dysautonomia all the physical things happen then I only think it is normal to start worrying "why is my heart beating at 120 beats a minute yet I am watching Seinfeld with a totally blank brain?!" Mine was actually waking me - oh yeah I am anxious - NOT!!
Beeba said:
Dysautonomia - in very unscientific terms is the autonomic nervous system going haywire. There are a lot of symptoms but one of the most easy to recognize is what I called my "hour of death" upon waking. Other symptoms include but not limited in anyway - these are just mine. Also should preface by saying mine is the opposite of what most people have. Most have very low bp. Mine is very high but not heart related - it is neurally mediated hypertension. After eating stomach goes crazy gurgling and growling and I feel like I could fall right to sleep (blood goes to stomach leaving head) exercise intolerance - large muscles are most affected. Squats can make you pass out. Feeling somewhat out of body. After riding in a car - you feel sort of dizzy and shaky because body doesn't react normal to bumps and vibrations. To be technically diagnosed you need a 30 point drop in bp from laying down to standing. Just an interesting footnote - I can make my bp do it just by extending neck - showers can bring it on because we all keep our head back. I thought everyone needed to sit for 5 minutes after a shower!! Who knew. I now shower leaning forward and not to hot of water - again body does respond correctly. I was put on one beta blocker but it made me worse so being as educated as the medical field it they doubled then tripled it. It was god awful and none of it was lowering my blood pressure. With in 48 hours on bystolic I was back to being functional (did 14 hour days in Disney actually) and before that would have killed me for the next three. Now I was tired but It was a long day!! But after a good nights sleep I could go again. It was like night and day. If you pass out that would be the strongest indicator of POTS - and you should have a tilt test done to document the condition. Just a warning though and I have had lots of crappy tests - this one stinks!! They don't poke ya or jab ya but you are in a position that is trying to make you pass out so all the little tricks you may do so it can't happen are taken away. They strap you to a table - you lay flat for 10 minutes and they monitor bp. Then they bring you upright and see how long it takes you to pass out - fun huh? I believe there are videos on here demonstrating dysautonomia but if not go to youtube and look up girl doing lunges passes out. Would never recommend doing but you see it happen. If you do have a tilt test check with dr before stopping meds but you are not suppose to be on any as they mask the results. Also have results checked by an electrocardiophysiologist not just a regular cardio dr because they are more informed on what the signs are even if you don't pass out.
jessica said:
Beeba... what is dysautonomia?? I see it is brought up here a lot.I have never heard it mentioned by any doctors, but then again, I had to fight through over a dozen doctors just to find out how many mm's i am! Beeba said:
Lynn, not numbness related - have you had any treatment for the dysautonomia? It won't make everything perfect but you sure can feel better than untreated
Lynn Messer said:
My numbness in my arms and cinsations in the face,neck and head.There have been for a very long time,over the years there hasn't been anything life threatening because of it.I have cinsations in my chest when this happens I get so hot all over.Does anyone have anything like this? My surgery is a year out and these are some things left to deal with. There is still headaches but not like before,I'm still glad to have found help and I'm hoping some of these things will settle down.The NS says that it can be another year or more before we know for sure.Hope you get to the bottom of the numbness,I think it is part of the chiari illness there's always weird feelings because of nerve involvement.There have been pain and strange feelings in my neck and head since the decompression too.
oh, & is dysautonomia the same thing as POTS or am I not understanding this? Beeba said:
Dysautonomia - in very unscientific terms is the autonomic nervous system going haywire. There are a lot of symptoms but one of the most easy to recognize is what I called my "hour of death" upon waking. Other symptoms include but not limited in anyway - these are just mine. Also should preface by saying mine is the opposite of what most people have. Most have very low bp. Mine is very high but not heart related - it is neurally mediated hypertension. After eating stomach goes crazy gurgling and growling and I feel like I could fall right to sleep (blood goes to stomach leaving head) exercise intolerance - large muscles are most affected. Squats can make you pass out. Feeling somewhat out of body. After riding in a car - you feel sort of dizzy and shaky because body doesn't react normal to bumps and vibrations. To be technically diagnosed you need a 30 point drop in bp from laying down to standing. Just an interesting footnote - I can make my bp do it just by extending neck - showers can bring it on because we all keep our head back. I thought everyone needed to sit for 5 minutes after a shower!! Who knew. I now shower leaning forward and not to hot of water - again body does respond correctly. I was put on one beta blocker but it made me worse so being as educated as the medical field it they doubled then tripled it. It was god awful and none of it was lowering my blood pressure. With in 48 hours on bystolic I was back to being functional (did 14 hour days in Disney actually) and before that would have killed me for the next three. Now I was tired but It was a long day!! But after a good nights sleep I could go again. It was like night and day. If you pass out that would be the strongest indicator of POTS - and you should have a tilt test done to document the condition. Just a warning though and I have had lots of crappy tests - this one stinks!! They don't poke ya or jab ya but you are in a position that is trying to make you pass out so all the little tricks you may do so it can't happen are taken away. They strap you to a table - you lay flat for 10 minutes and they monitor bp. Then they bring you upright and see how long it takes you to pass out - fun huh? I believe there are videos on here demonstrating dysautonomia but if not go to youtube and look up girl doing lunges passes out. Would never recommend doing but you see it happen. If you do have a tilt test check with dr before stopping meds but you are not suppose to be on any as they mask the results. Also have results checked by an electrocardiophysiologist not just a regular cardio dr because they are more informed on what the signs are even if you don't pass out.
jessica said:
Beeba... what is dysautonomia?? I see it is brought up here a lot.I have never heard it mentioned by any doctors, but then again, I had to fight through over a dozen doctors just to find out how many mm's i am! Beeba said:
Lynn, not numbness related - have you had any treatment for the dysautonomia? It won't make everything perfect but you sure can feel better than untreated
Lynn Messer said:
My numbness in my arms and cinsations in the face,neck and head.There have been for a very long time,over the years there hasn't been anything life threatening because of it.I have cinsations in my chest when this happens I get so hot all over.Does anyone have anything like this? My surgery is a year out and these are some things left to deal with. There is still headaches but not like before,I'm still glad to have found help and I'm hoping some of these things will settle down.The NS says that it can be another year or more before we know for sure.Hope you get to the bottom of the numbness,I think it is part of the chiari illness there's always weird feelings because of nerve involvement.There have been pain and strange feelings in my neck and head since the decompression too.