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Chari Help
I have a chiari 1 malformation and have been seeing a nerologist , mine is 5 cm and my symptoms are headache, vision problems, muscle weakness,Dizziness, tingling ,and fatique , and have passed out four times, I have been off work since Aug 2015, the doctors have ran tests and tests and everything I tell them they seem to say its a mild chari, and check for something else.I have had problems for over twenty years but have only gotten worse in last 6 months, I feel lost, I feel like they dont believe what I am saying, The back of my head feels like Ive been hit in the head with a bat, I wake up everyday with upper body numb, and spend the day with pain, headache, dizziness, and my hands hurting when i use them, I saw this forum and thought what wood it hurt, My wife works evey day and I hate complaining about it, I need to get on disability but doctors wont make a call..Just wondering what to do????
COMMUNITY LEADER
Hi Angelinri and welcome to the Chiari forum.
I can offer a name for your state but you will have to research them as we do not offer referrals or endorsements...we only offer names to help you with a starting point to research Drs.....so make sure to educate yourself on Chiari and ALL related and non related conditions ......
If you have any questions please feel free to ask ......
RHODE ISLAND
Dr. Deus Cielo
593 Eddy Street
Providence, RI 02903
COMMUNITY LEADER
Hi mkng71 and welcome to the Chiari forum.
We all can related to Drs not listening to us....and it is bcuz they are not taught more then 5 mins of info on Chiari...and they are not aware of ALL the related conditions that can come along with it.
Drs that call a condition "mild" are doing so blindly as they have no idea how it is until more tests are done but they are going by your herniation....you need to check CSF flow...figure out if it is congenital or acquired...and what other related conditions you may have.
Finding the right Dr is key ! if you need help, let us know what area you are in and we might have a list of Drs for you to research.
Know you are not alone.
1 Comments
I was just recently diagnosed with chiari, and increased crainial pressure. I'm looking for a good doctor here in RI. Do you have any suggestions for this area?
Hi and welcome to the forum.
I know how you feel and am sorry to hear that you are going through this. I have similar symptoms and have spent years trying to figure it out and get a dx. I think most of us have gone through the frustration of not being believed by our doctors. They just do not know enough about chiari.
My opinion is we need to educate them. After being told to pull up my socks by my doctor, when I told him I could no longer work and was in tears in his office worrying I'd become homeless -- now that he has seen the results of my last MRI which shows my CSF flow is blocked and that I might have hydrocephalus and there is a reason for my numbness, he has stepped up to the plate and seems to be feeling almost guilty.
So the one good thing out of this is maybe one more doctor has been educated. Maybe with the next chiari patient he will recognize the symptoms and get them the right help and support sooner. You need to keep going back and getting more tests done. Have they done a CINE MRI to check your CSF flow? Or checked for a syrinx?
But regarding disability, I don't know what it is like in the US, but here in Canada the amount you can get is so little I don't know how anyone can survive on it. They count your spouses income so if he is making more than something like $800 a month, I would get nothing anyway. It is just not worth applying. Because I have environmental sensitivities, I can't live in an apartment or a townhouse where there is cigarette smoke. I've tried and it was disastrous. I needed to go outside to get away from the smoke. And I am highly sensitive to molds, thus older buildings. So I cannot live on that little because I need a detached home and not an old one.
If your wife is working I am not sure it would be worth it for you. I know, it is very frustrating and disheartening. Because of my symptoms I am forced into early retirement and my 68 year old husband is having to work at a job he hates to keep us afloat. I don't see how he will ever be able to retire. But I am trying to work from home to make some money and hope eventually it will be enough so he can retire. There are things you might be able to handle from home.
Good luck, I hope you get the help you deserve!
I know how you feel and am sorry to hear that you are going through this. I have similar symptoms and have spent years trying to figure it out and get a dx. I think most of us have gone through the frustration of not being believed by our doctors. They just do not know enough about chiari.
My opinion is we need to educate them. After being told to pull up my socks by my doctor, when I told him I could no longer work and was in tears in his office worrying I'd become homeless -- now that he has seen the results of my last MRI which shows my CSF flow is blocked and that I might have hydrocephalus and there is a reason for my numbness, he has stepped up to the plate and seems to be feeling almost guilty.
So the one good thing out of this is maybe one more doctor has been educated. Maybe with the next chiari patient he will recognize the symptoms and get them the right help and support sooner. You need to keep going back and getting more tests done. Have they done a CINE MRI to check your CSF flow? Or checked for a syrinx?
But regarding disability, I don't know what it is like in the US, but here in Canada the amount you can get is so little I don't know how anyone can survive on it. They count your spouses income so if he is making more than something like $800 a month, I would get nothing anyway. It is just not worth applying. Because I have environmental sensitivities, I can't live in an apartment or a townhouse where there is cigarette smoke. I've tried and it was disastrous. I needed to go outside to get away from the smoke. And I am highly sensitive to molds, thus older buildings. So I cannot live on that little because I need a detached home and not an old one.
If your wife is working I am not sure it would be worth it for you. I know, it is very frustrating and disheartening. Because of my symptoms I am forced into early retirement and my 68 year old husband is having to work at a job he hates to keep us afloat. I don't see how he will ever be able to retire. But I am trying to work from home to make some money and hope eventually it will be enough so he can retire. There are things you might be able to handle from home.
Good luck, I hope you get the help you deserve!
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