Need advice about future
 

I was diagnosed with a right pica aneurysm last November after collapsing in the shower. I had a second bleed and developed hydrocephalus. They did an emergency coiling and a week later installed my shunt. In May I found out that the coils had compacted and my doctor recommended a clipping due to my age, 35 and relative good health. Seven hours into the surgery they determined that they could not clip the aneurysm as it is embedded in my brain stem. After the operation I developed a pseudomeningocele (spinal fluid leak), and aseptic meningitis. The doctor did another surgery to attempt to repair the leak and put me on steroids for 2 more weeks, had already been on them for almost 4 weeks. Two weeks later I was back in the hospital, this time I had developed a staff infection and pneumonia. I was in the hospital another 2 weeks and had 2 more surgeries. The first to remove my shunt as well as perform a fascia graft to fix the csf leak, the second to install another shunt.
Lucky for me the graft surgery performed beautifully and no more csf leak. I spent 2 months throwing up and having awful headaches. Now I am doing much better. I am worried that I won't be able to go back to working though. I was working at Wal Mart until I collapsed and have medical leave until November. But I just don't know if I can do it. I do not have any major deficits, just some minor vision problems, peripheral double vision. Also my neck is not working correctly from the surgery, they removed 1/2 of my 1st vertabrae and a big chunk of my occipital ridge. Also I have a lot of pain in my leg from the fascia graft, I can't stand for long periods.
My sister keeps telling me that I should file for disability, but I don't know if any of this qualifies as a disability. My doctor hasn't told me that I am disabled. I have to have another coiling in January. But the doctor said that other than that, which isn't as he calls it an emergency I should be fine. Can any of you give me any advice or wisdom about SSI. My husband and I are struggling with only his income, but I don't know what I will be able to do. I have a hard time right now doing a load of laundry. Although I do feel lucky to be alive and able to do laundry.
Any thoughts or advise will be greatly appreciated. Thank you all for your stories, they help me so much to not feel so alone in this!

Hang in there
 

Hi, I read your story. My God you've been through a lot. You should be so thankful you are still here. Talk to your doctor. If you can't stand for long periods of time and have problems with your neck you certainly are disabled. Your doctor can write you a note, he can put you on long term disability or permanent disability. Talk to him, let him know how you are feeling. I've actually lived through a lot of what you have through my family. My daughter at 5 days old go pseudomonis, DIC and Septic Shock. She almost died, she was in intensive care for 3 weeks. Diagnosed with Hydrocephalus at 5 months and was shunted. Just had a revision this past June, and we were in the hospital for 2 more week, 3 surgeries. Also, 8 years ago my husband had back surgery for a herniated disc. After about a week he came down with menangitis. The doctor had knicked her dura during surgery, so he too was leaking spinal fluid, it used to come out the incision in his back, it was terrible. They did numerous blood patches to try and stop it, nothing worked. They eventually had to go back in and do another surgery. After the 2nd surgery they had him on antibiotics that he was allergic to, he had an allergic reaction and his body spasmed and he was crooked for about 10 months until he went to a really good physical therapist who was able to straighten him back up. My advice to you is not to give up. See if there's help out there so that you can return to a normal life. You never know. Hang in there, life is good, your still here.....

(((((((((((((Jen)))))))))))))). :(

It may take awhile to receive disability, but I think you'll find you do qualify under these circumstances. Any condition that makes it extremely difficult to work will ultimately qualify you, but understand that they have to weed out the "phonies," so don't get discouraged if you are turned down multiple times. (Note: I have never received or applied for disability.)

Good luck to you, and please be in touch!

LIZARD :)