Who is able to work with Chiari? Is there any one able to drive with Chiari?
Hi kmgtm... I work full time and drive.
I've been off work since Nov. when I got real sick and have been since. My driving comes and goes. Some days the symptoms don't allow me to. And I can't drive or ride for long.
I work and drive and attend school. I have seizures with Chiari so I had to be seizure symptom free for 6 months . I really think it depends on your symptoms. I was very ill for five years and now I am able to return to school and work. I do get Social security because I was declared disabled, I had worked for 15 years so I was eligible. Hope this helped a little any questions I am here,.
Chiari usually doesn't cause you to be disabled to the point where you can't work or drive, that's part of the reason half the people are fighting to even be diagnosed properly!
I drive work and take care of my grandson I push myself to do all the things I dont want to give in to chiari. I have good and bad days and lately they have been bad but i get up everyday and give my 100%
Becki Bowling said:
I think it can in some cases. I don't drive at all anymore. I get severe dizzy spells that make me disoriented. They hit very suddenly. I can barely walk when they are
I had stopped driving before surgery because of the dizziness and brain fog. I worked up until surgery and was back to work part time at 4 weeks and full time 6 weeks. I was driving again at 2 weeks post op.
I’m back to doing almost everything I did before surgery.
What you can and can’t do really depends on the severity of you symptoms. Also, many people with Chiari have others things that are debillitating.
Diana
I work full-time and drive.
I rather feel like I have the flu or something most days but I get up and go to work anyhow because I need the health insurance. I think my life would be a lot better if I could cut back on work because I'm too drained to do any chores at home but what can you do?
Sometimes I have dizzy spells so I don't drive if I'm feeling off.
I want to thank everyone so far for your reponses. They have been most helpful. I even thank those that responded out of line. No one should ever feel like they are an outsider in this group, people's body responded differently because of different factors and should not be ridiculed just because someone else is not having the same problems. I do believe you are to push and press, but of course some of us even when giving it a 100% are still not able to do what you would like to do. I praise and thank God that it is as well as it is, because you never know what someone else might be going through! It's a blessing that some of you are still able to do what you want and not have to alter things too much or any at all. God is still good to those who do! He has a purpose for everything. Live life to the best of your ability and leave the rest to Jesus! Again thank you guys, I am a newbie here. It is a good feeling not to feel alone...I appreciate the support.
Everyone is so defensive - i said usually ...I didn't say always. Sheesh. I know everyone is different and there are different cases, but there is a reason chiari is so uncommon and so many people go "huh"? when I say I have Chiari...also, disability does not recognize chiari or many of it's symptoms and I've spoken with many chiari patients that have had to FIGHT with lawyers for their disability payments because yes, they could not work with chiari...but for the majority of people, they will live their entire lives not even knowing they have chiari, let alone having symptoms or being disabled, hence the reason it is so uncommon and everyone is on this board having such a hard time finding doctors, disability, insurance, etc.
Becki - I have been reading success stories online and I've talked to actual successful surgery patients from different doctors (I have family/friends in the medical field), and a LOT of people are able to drive and resume a pretty normal life within 4-6 weeks. My GP told me I should be up within 4 weeks like nothing happened because I'm so young. I asked him when I can dye my hair and he said 4-5 weeks after!!
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.
Everyone is so defensive because of your approach. After you explained yourself, now I understand why you seemed to be so harsh. You seemed upset...the exclamation and tone did not help. You are upset with the how doctors and social security respond to Chiari. I could not agree with you more. They don't understand it, so they choose not to help and look at it as if people are making excuses instead of taking time out and researching it. Your anger with them makes it come off to others that you are upset with them, but like I said I could not agree with you more.
doodledee216 said:
Everyone is so defensive - i said usually ...I didn't say always. Sheesh. I know everyone is different and there are different cases, but there is a reason chiari is so uncommon and so many people go "huh"? when I say I have Chiari...also, disability does not recognize chiari or many of it's symptoms and I've spoken with many chiari patients that have had to FIGHT with lawyers for their disability payments because yes, they could not work with chiari...but for the majority of people, they will live their entire lives not even knowing they have chiari, let alone having symptoms or being disabled, hence the reason it is so uncommon and everyone is on this board having such a hard time finding doctors, disability, insurance, etc.
kmgtm, you have to remember, that us on this board, fighting for the relief of our symptoms, we are a minority! ...saying does chiari do this, or do that you know as well as I it is impossible to say! For a lot of people with chiari, there are no physical limitations - and a lot of people with chiari go their entire lives not knowing they have it - that's why so little is known about it ...and then there are us chiarians that have no physical limitations, and we have to beg doctors to believe in our invisible symptoms...then there others that do have physical limitations, I can't speak for them because I haven't experienced any physical limitations, but I do believe that MOST chiari patients have no physical limitations, and honestly, most times I've met people or read stories about physical limitations, it has been based on the fact that the person had chiari for so long without surgery that they now have irreversible nerve damage and/or coupled with another illness or disease.
Why are you talking to me as if I am attacking you and others? The tone in your messages are totally off. I am aware of all this stuff of course I was asking the question in general to know what others go through. I am not your enemy. God Bless.
doodledee216 said:
kmgtm, you have to remember, that us on this board, fighting for the relief of our symptoms, we are a minority! ...saying does chiari do this, or do that you know as well as I it is impossible to say! For a lot of people with chiari, there are no physical limitations - and a lot of people with chiari go their entire lives not knowing they have it - that's why so little is known about it ...and then there are us chiarians that have no physical limitations, and we have to beg doctors to believe in our invisible symptoms...then there others that do have physical limitations, I can't speak for them because I haven't experienced any physical limitations, but I do believe that MOST chiari patients have no physical limitations, and honestly, most times I've met people or read stories about physical limitations, it has been based on the fact that the person had chiari for so long without surgery that they now have irreversible nerve damage and/or coupled with another illness or disease.
Not sure why this thread has taken such a weird turn because I'm pretty sure we are all on the same page! I think it is interesting to know of others experiences. Sometimes it helps to ask if chiari can cause this or that because if someone else has the issues you don't feel so alone! Plus as it was pointed out this is rare and doctors don't see a lot of it, so with most conditions you could ask your doctor if you were worried, with this condition your doctor probably knows less than you do! It helps to ask others so you don't needlessly worry or pursue expensive testing to find out it was chiari all along!!!
Whoa kmgtm I’m sorry if you read a tone in my writing, I didn’t mean anything to or against you at all, I was just saying my opinion I’m sorry if it came off in a different way. I’m on you’re side lol I was backing up what you had said previously…not sure how I offended u
kmgtm said:
Why are you talking to me as if I am attacking you and others? The tone in your messages are totally off. I am aware of all this stuff of course I was asking the question in general to know what others go through. I am not your enemy. God Bless.
doodledee216 said:kmgtm, you have to remember, that us on this board, fighting for the relief of our symptoms, we are a minority! …saying does chiari do this, or do that you know as well as I it is impossible to say! For a lot of people with chiari, there are no physical limitations - and a lot of people with chiari go their entire lives not knowing they have it - that’s why so little is known about it …and then there are us chiarians that have no physical limitations, and we have to beg doctors to believe in our invisible symptoms…then there others that do have physical limitations, I can’t speak for them because I haven’t experienced any physical limitations, but I do believe that MOST chiari patients have no physical limitations, and honestly, most times I’ve met people or read stories about physical limitations, it has been based on the fact that the person had chiari for so long without surgery that they now have irreversible nerve damage and/or coupled with another illness or disease.
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.
It's ok doodledee No worries! I just felt attacked... instead of you answering the question for what it was...a question about your personal experience, (if any) you made as if you were attacking me for asking the question. I thought maybe I read you wrong until I heard from others. Everyone of us are upset about how doctors treat Chiari believe you me I am just glad I found a group that understands what I am going through. Doctors have a funny way of making you feel like you are crazy when you know you are not lol.