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I need help
by Candace5440, Nov 04, 2009 07:56AM
by Candace5440, Oct 27, 2009 12:44PM
I was diagnosed with chiari malformation type I in 2003 in 2004 I had decompression surgey done. I have continued to have daily headaches with some days worse than others, but over the past 2 months all of my symptoms have progressed to become hardly even tolerable. I am not even working now because my nueroligist said i could not work nor drive until he figured out what was wrong with me. My problem is that my original nueroligists said once the surgery was done i was healed so i found another neuro for a second opinion, and he said i may not have even needed to have had the surgery because he thought it could have been something else all along. My symptoms are daily headaches to the point of my head feelin as though it is going to explode, muscle pain(burning,shooting), weakness in my muscles, dizziness, extreme vertigo, shortness of breath, fatigue, pins and needles in hands and feet, trouble swallowing, trouble sleeping, night sweats, skin feeling as though sunburned without sunburn, diarrea (diarrhea), brain fog, memory loss, trouble spelling, double vision,back pain, stiff neck, full ears, loss of balance and coordination. I have seen a cardioligist who's only abnormal finding was that my blood pressure did not rise nor change during a stress test. I had MRI of my brain and cspine which came back normal. He did exstensive blood work which came back normal. I am awaiting the results of the lumbar puncture from the lab, but the intercrainal pressure measure during the puncture was 26 he did say that was high. Could this still be my chiari should I go get yet a 3rd opinion? Any suggestions of anyone in the Louisiana area???
I was diagnosed with chiari malformation type I in 2003 in 2004 I had decompression surgey done. I have continued to have daily headaches with some days worse than others, but over the past 2 months all of my symptoms have progressed to become hardly even tolerable. I am not even working now because my nueroligist said i could not work nor drive until he figured out what was wrong with me. My problem is that my original nueroligists said once the surgery was done i was healed so i found another neuro for a second opinion, and he said i may not have even needed to have had the surgery because he thought it could have been something else all along. My symptoms are daily headaches to the point of my head feelin as though it is going to explode, muscle pain(burning,shooting), weakness in my muscles, dizziness, extreme vertigo, shortness of breath, fatigue, pins and needles in hands and feet, trouble swallowing, trouble sleeping, night sweats, skin feeling as though sunburned without sunburn, diarrea (diarrhea), brain fog, memory loss, trouble spelling, double vision,back pain, stiff neck, full ears, loss of balance and coordination. I have seen a cardioligist who's only abnormal finding was that my blood pressure did not rise nor change during a stress test. I had MRI of my brain and cspine which came back normal. He did exstensive blood work which came back normal. I am awaiting the results of the lumbar puncture from the lab, but the intercrainal pressure measure during the puncture was 26 he did say that was high. Could this still be my chiari should I go get yet a 3rd opinion? Any suggestions of anyone in the Louisiana area???
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I have no idea if ur dr was a chiari specialist or not, but there is no cure for Chairi only treatments .Surgery is a treatment to help low and or stop the progression of chiari and symptoms.
Inter cranial pressure and hydrocephalus can occur after having PFD.
There also have been failed surgeries where it had to be redone.
I would suggest u find someone that is a true chiari specialist to help u....and u may need to travel to get to one..... I know there is a dr in Nashville, but not sure about Louisiana. We have a list of drs that was made by the members of drs they have been to and liked...so it is by no means a complete list of all chiari drs, but a good place to start.Please research all drs u r considering. The list is available in the Health Pages ...use the icons at the top right to enter the pages.
Were u ever checked for chairi related conditions like tethered cord, syringomyelia, EDS, and such b4 ur orig surgery or since?
U deff want a true chiari specialist.
"selma"
U could have had some scar tissue form at the site of ur incision.....or developed other issues entirely.
Mayb u had TC and now it is really acting up.
Until u get the MRI's of ur thoracic and lumbar spine it is diff to say......
Remember u r not crazy...these medical professionals just do not know and in their opinion u should feel diff...so ignore that and keep pushing for answers to what u know is going on.
Research the drs to be sure they r well informed on chiari.
U r not alone : )
"selma"
I believe we have a list of symptoms for TC in the Health Pages would be found on the second page in the menu.
But lower pain pain...leg issues....bowel and bladder issues...and HA....teh TC pulls down on the brain stem...so most with an elongated Brainstem having a higher possibility that they also have TC.
"selma"