I defintely agree. The doctor that did my surgery said it was preventive not for correction. He said it was possible that it could help some things, but it was more so to prevent it from getting worse.
nicolee said:
Didn't find Chiari, but did find this, among other symptoms/conditions that come along with this pain in my head called Chiari.
11.19 Syringomyelia. With:
A. Significant bulbar signs; or
B. Disorganization of motor function as described in 11.04B
Found this on PA's SSD site. Everyone is different for sure! I am able to drive on good days, but they are few and far between anymore. I have serveral other conditions pre and post-op that have been caused by the Chiari itself. I have not worked since last June and I had my decompression this past December. I have heard of many having decompression and doing very well...and others having terrible symptoms after. I am hoping that this will eventually pass and I can get back to my life :) Oh, I do know a Social Worker that was awarded SSD due to the Chiari. If it is bad enough for individuals not to work, then they should apply and fight! The more that are awarded maybe then it will be more accepted.
I am on SSD at that time Chiari was notlisted . I also have several syptoms such as epileptic siezure disorder, headaches, hydrochephlus, hypothyroidism, and the list goes on. And yes they were all caused by a herniation of the cb tonsils “Chiari” causing spinal fluid flow /blockage. Iwas very upset by the uneducated comment of the person who wrote chiari doesn’t cause disabilities. Yes it does that is why we are all fighting for early diagnoses and treatment. Howevet some of us are treated and still have a multituted of painful/ debilitating symptoms. I ask in the future think before you type or speak, I am happy that you don’t have any painful symtoms. The 64 pts around my area do and fighteveryday to surfive. A headache can be debilitating.
I am really upset and disappointed in some of these comments I thought this was a support group. NoI understand that some people choose to type before they think. I am surprised that people make comments that can be hurtful to others. Please don’t write things if ur truly not educated yourself about the topic…just saying. Idk who wrote the comment thay Chiari was not dibilitating. I have fought the SSD fight. I was not diagnosed until latet on in life, but looking back it explained ha I had and other problems that I dealt with. If I am correct the person that wrote the comment obviously had some type of symptom or whoever they new had a symptomm severe enough to jender and a CT/ mri was preformed. That caused some kind of dibilitating condition made to dr preform the test. Also with Chiari the treatment we receive slows the process of Chiari it is not a cure. I have undergone several procedures from01-03, and did fairly well for awhile now 10 years later my symptoms are back… And there is nothing they can do. I know several neuro drs I was a neuro nurse. Chiri causes a blockage of spinal fluid flow and this causes a multituded of issues. Decompression allows proper spinal fluid flow, but if we all were not treated itcould become completely blocked and nerve damage andcomplete numbness would happen. So not being able to use our hands and feet is something that might happen. I am sorry to be so forward but the comment of that person really bothered me. I do apologize. But I felt somethings need to be addressed. I am sorry if I took the comment wrong.
I felt the same way you did, when that person made that comment. I thought maybe I took it wrong but, when I started hearing from others it let me know I did not take it wrong. You are very right Chairi surgery is not a cure it is preventive. Being a neuro nurse..Did it help you learn about Chiari? I'm in a situation where it helped me headaches not be so intense but it elevated other symptoms. I was told it probably was because they waited too long to have surgery. I take it moment by moment God is still good to me, because people that don't know me have no idea when I am in pain, helping others keeps my mind off of myself.
I have not driven since my surgery in 2008. My neck does not turn well, it locks up on me sometime. It is painful to over use it also. My legs hurt sometime also. I don't know if I do experience the dizziness when I drive or not, but I do experience it without being behind the wheel. epitomosity said:
I had my CM decompression surgery last November that also came along the removal of a Fourth Ventricular tumor. I had a secondary surgery the end of December to re-patch my leaking dura and to treat meningitis that I had contracted.
I haven't gone back to work yet and do not know if I am going to be comfortable enough to go back either. I have also made the decision not to drive because I can get dizzy and disoriented without any warning.
I do get to be a stay at home dad though, the Chiari hasn't taken that away from me at least. I do agree with everyone on here though that it affects everyone differently.
I am still trying to get through to my neurosurgeon because he seems to be really hesitant to look at the current symptoms I am feeling or try to offer any insight. So I am still waiting to see if I am able to return to work and be considered safe to be driving so I can resume normal functioning.