Recurring symptoms

[bstnana]

Hi,

I have had two Chiari surgeries, the most recent 9 months ago.  The worst of the symptoms are gone, but the headaches are back and seem to be getting worse.  I am on Gabapentin which makes me dizzy and tired and am having a very hard time working because I drive a lot.  I am being encouraged by family to go out on medical leave and was wondering if there is any one out there with Chiari that is on long term disability.  I really don't want to do this, but am running out of medications to try.

[selmaS]

  Yeah I am not 100% and did not expect it....but I also knew it would not be immediate as it took yrs for me to get as bad as I was.....and I also knew for me personally I heal slowly so, I was hoping to just stave off progression and restore CSF flow the rest is a bonus and as I said I have seen more improvements with each yr that passes.

Once of the best is my balance, I could not walk on uneven surfaces like a lawn, as I was all over the place...

Give it time and do not rush to get back to doing things let your body tell you when it is ready.

[bstnana]

Hi Sarah,

I am so sorry to hear that you have had such a battle.  My local doctor has been great and does whatever I need, but I can see what a struggle it would be for disability because this is somewhat rare.  

May I ask, did you have the surgery?  What symptoms do you have that disable you?  There are so many pieces to this puzzle.

God Bless

[bstnana]

Thanks Selma,

They did do a Cine CT (I think that checks CSF) and it was fine.  I am glad you continue to see improvements, that is good to hear.  I am looking forward to improvements.  I am one of those who believed that I was going to be 100% relieved of symptoms shortly after the surgery.  I think I am experiencing a reality check :).

Thanks for your help

[SarahY79]

I have been disabled based on my Chiari for over 12 years. It's not much of a life, I did it for the insurance. The checks are well below the poverty limit, and I don't suggest it to anyone! If you don't have any other financial help, it's next to impossible to survive on disability! Also,be prepared to fight for your benefits! I suggest getting an attorney, you will not have to pay them unless you get your benefits. They normally take approximately 33% of your back pay, so it's in their best interests to let it drag out for awhile. My advice is to apply as soon as possible. Keep in mind that 99% of applicants are denied the first time or first few times. That's when you get an attorney involved. Most of the time with unusual illnesses, your attorney will have to ask for a hearing before you are awarded your benefits. I hope this helps! Send me a friends request if you have any more questions.
Good luck and God bless!
Sarah

[selmaS]

  My surgery was 5 yrs ago this past May.....time is flying by...and with each yr I continue to see more benefits from my surgery....

Yes, it can get old....and b4 you decide to go back to work make sure you do not have a CSF obstruction and any new symptoms get to your Dr asap as it can indicate a change .....

Whats worse then how everyone around us acts, is just dealing with the pain and not knowing how long we can go on....

[bstnana]

Thanks Selma,

That is good news about the memory issue.  How long ago was your surgery?

I am hopeful that if nothing else the nerve blocks will make the pain manageable and I can get back to work.

I hate feeling like this and I really want my family to stop worrying about me.  I appreciate the love and support ( I am very blessed), but having people ask me about my head all the time gets old as I know you are aware.

[selmaS]

  Yeah, many times scar tissue can put pressure on certain areas and cause  different issues like neuralgia....but sometimes with time they symptoms may lessen and I pray this happens for you.

I also had major memory issues and I am just a few yrs older then you....but the further I get from my surgery date it is getting better....so it may be that you are still healing...give it more time...as it can take the nerves up to 2 yrs to heal completely .

[bstnana]

Hi Selma,

Thanks for the reply.  During the first surgery, they did not open the dura.  I went three years and felt really good.  Almost exactly at the three year mark the symptoms came back worse than they had ever been. I was able to get in to see Dr. Oro and after many tests we opted for the second surgery.  There was a lot of scar tissue, he had to increase the width of the opening and opened the dura.  I thought I was doing better and most of the symptoms are gone, but the headaches are getting worse again.  I trying to get into a pain specialist because the medications don't seem to work and they seem to make me very tired and dizzy.  I am also experiencing memory problems (thought it was an age thing, but I am only 53 and have been told it shouldn't be this bad....yet LOL).

Dr. Oro thinks it may be Occipital Nueralgia, so we will see what the pain specialist says.

[selmaS]

  Hi,,,may I ask why a 2nd surgery was required?

There are some with Chiari that were able to get disability, but it can  take up to 2 yrs to get it....finding a Dr willing to say you are disabled and can not work is not easy and Chiari is not on the list of conditions so it makes this even harder.

But if you have documented reasons as to why more then one surgery was done and you can not work it may go easier for you.

It also seems those with an attny have a better chance at getting this passed.