Aa
I need help
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, 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, 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???
COMMUNITY LEADER
Hi ...so sorry u r having all this pain......I understand how u feel.
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"
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"
What are the symptoms of TC? I am really concerned what is going on! I am going to see a new nueroligist soon that i have been referred too. I don,t know if he is a chiari specialist either but I figured I would see what he had to say. Then I am gonna get a copy of my records and go find a chiari specialists. I just have to find out what is wrong I almost can't take this anymore. I am on no pain meds and they just give me topamax and zanaflex. They are constantly wanting to give me steriod injections. They did a cervical epiduriol on me just 2 weeks ago. My back and shoulder blades hurt so bad. My spine feels like it is breaking. When I try to stretch my back out it just cracks unbelievably.
COMMUNITY LEADER
I understand ur frustrations...it is from dealing with drs that r not well informed for this and it's related conditions.
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"
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"
No and that's just it. I keep telling the doctors that I have only had an MRI of my cervical spine and my brain. I have been out of work for over a month because my job asked me to take a leave because I have missed so much work over the last year. I mean I just don't get it. All of my symptoms are the same as before my surgery but I was better for about 2 years then it all came back with a vengence I feel like a pin cushion cause they have done every blood test imaginable but swear since I had surgery my chiari is healead. But something is causing the pain and high csf pressure. I asked about a syrinx in my lumbar or thoratic (spell?) spine and they said my symptoms would be different. I just don't know anymore I am tired of people acting like I am crazy!!!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
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"
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"
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