Hi Trrryd and welcome to the Chiari forum.
It is comforting to hear you went quite some time pain free and were able to get disability....many of us have not been so lucky on that front....but so far I am almost 8 yrs post op and am doing better each year that passes.
It is possible for you to have had scar tissue form and that could be causes some of the return of symptoms....OR you may have related conditions that have similar symptoms...so do see a Dr for testing to see what is going on...
Do you know what all was done during your decompression surgery....did you have a dura patch placed?
Make sure you find a true Chiari specialist and have ALL related and non related conditions ruled out.
I was 48 when I had my surgery and I am dong well....with the right Dr, I am sure it is possible to get answers b4 you worry of setbacks. Hang in there.
Horrible! And so very scary! I just had surgery to fix my patch so hoping I can get back within the next month or 2. If not I don't know what will happen... But thanks for the info and the support and I hope you find relief soon!
I hear you. My medical bills are outrageous. Dx'd and decompressed in 08 and have been a testing guinea pig since. Doctors keep saying by the book you should be cured. They test me for something and put normal on it because it didn't show what they thought but they don't put any footnotes in there saying what happened. Examples. EMG showed no carpel tunnel but didn't show that I have continued numbness, pins and needles, feeling of arms and legs, hands and feet went to sleep. Had a tilt table test and at 5 mins I had tremor and at 27 mins had an episode the nurse said she had never seen that looked like a seizure...but the report said normal for cardiac. My marriage fell apart, haven't finalized divorce because of insurance. Was short a few working credit hours for disability so they sent me down the SSI road. Been denied a few times and waiting for my hearing. Got the letter saying could be 20 days up to a year.
I can relate as I had been earning a wage since I was 11...babysitting, but I was getting paid and have worked ever since...so it is hard to not be able to do it .....we live on my DH's income which is hit and miss as he is self employed...we are lucky in that out house was paid off b4 all this happened.
My DD has to pay off all her student loans as I can not longer help her...but she is doing well for herself so when she can she has helped me out....
One thing u may want to try is to do fund raising...there are sites on FB and others that u can set up for medical and living expenses....
I never had to do it...my DH has found ways to cut back on expenses and I no longer drive so no need for gas ....lunches....so it is a savings....
God does not hate u, he is helping u thru even if u do not feel him.....he would never abandon u in a time of trials.
Keep the faith, and know u r not alone <3 ((hugs))
Thanks.. so if these things take a year.. how do you live until then? Good Lord... we just filed bankruptcy (with well over 50k in medical bills and that is WITH insurance and exhausting our savings to try to prevent it), will be losing the house we are in, my husband is a seasonal worker for the first time ever at his job and will be having to use unemployment for 2 months.. I am overwhelmed. I have worked since I was 15 and have my fancy bachelors in nursing degree I busted my tail to get and never would have thought I would be here right now. I have always worked so hard and feel like a failure now because of all of this. My daughter is a senior in HS.. can't afford any of what she will wants like pictures or anything and now she too is having chiari symptoms and something going on in her abdomen they can't figure out. I'm trying to figure out why God seems to hate me right now when I have done so much to help other people. Sorry for the rant but I am tearing my hair out right now.
U r welcome, I know there was yet another thread but I have not had luck in locating it....I will keep looking
BUMP this is for SSID< I am still looking for a link or info on emergency aid....
I'm so happy for you. I am not so fortunate. I went to my hearing and I was denied, but I had a judge that only approved 8 out of 76 cases so I am hoping and praying that this appeal will work. They sent me a letter saying this process can take up to a year and it has already been a yr and a half, but patience is the key I guess. I just take one day at a time and hoping for a better tomorrow.
Linda :)
U r welcome...glad u found it : )
Found it Selma, thank you!!
Angie