I went to my neurosurgeon today for my 3 month post-op visit, and left feeling worse than I have in a very long time! The upshot is that he considers my decompression a success, regardless of the fact that I'm still experiencing many of the symptoms I had before surgery, albeit not as intensely. I am still having to take pain meds daily, still not able to drive, still doing physical therapy, and still not able to function at a "normal" level. I was told that from here on, my symptoms would need to be managed by another doctor, but not given any referral, advice, or suggestion on who, or what kind of doctor to see. Just a "good luck", and "give it time". I DON'T HAVE TIME! I have 3 young kids to support, and NO means of income! My ex rarely pays his child support, disability denied me, and I have no idea who would even consider hiring me in my present condition! How am I supposed to take care of my kids?! Thank God my parents have been able to help the past year, but they can only keep it up for so long...I am just so frustrated and angry! I feel like the surgeon I trusted and put my faith in has let me down. I know that he's a surgeon, and what they do is cut, but really, no referral? No advice? Nothing? I don't know what to do now, or where to start, or what direction to go...I'm just SO TIRED of this...Does anyone here have any suggestions???
Jenny, I second absolutely everything Mandy said. I know you’ve been through a lot- this can be very hard especially with kids. My heart goes out to you. My decompression results were still changing at 3 months, my “new normal” set in at about 4 mos but I know many others were changing to about a year post op. but… If you know this not a work in progress and you need more help go get it. The Chiari institute screens for instability too- something all chiarians with a possibility of EDS should be aware of. Keep going Jenny. We are all in this together and want you to get better 
Jenn
Jenny, hang in there! Keep trying for social security. I had to go to a hearing after multiple denials it was all due to an error from my online form saying I went back to work when I did not. I would recommend finding a good Md. that can help manage your care and document your symptoms and situation health wise, this will help. And most importantly keep your spirits up, and look to county and state services for hell if you need to. Ssi is an option, I choose not to go this route, but may be good to look at the option and see if it works for you. I’ll say some prayers for you.
If disability was available why would they deny you? I would look to see if they have an appeals process…
Goodness! Who was your surgeon? I live in NYC too and have a few referrals I can give you that were given to me by my NS. Most NL here are unfamiliar with chiari and it’s various symptoms etc. You can pm me and I’d be happy to give you the refs. As for the living situation I think NYS has lots of options for single moms. I’ll keep you in my prayers. GL!
Get an attorney. Then u wilk get ssi. The.attorney.will.take.his.fee out.of.ur first payment.
My daughter is in the same boat! So frustrating that the S.S. Disability system declines people that have had brain decompression surgery for a Brain Malformation that is in curable but if you are depressed you get benefits! Keep your head up and keep on keeping on. Write your experiences down and know that your strength will inspire many!
I have extensive sryingomyelia and I experience different symptoms every few weeks. There was a time at around 3 months that I went back because I had symptoms that had never been present. Those also resolved in time. I was always told that they symptoms may not completely resolve I am sorry you are still having such issues.
There is a ssdi firm called allsup. Look them up on line. They will do all of the fighting for you and they only charge you if they win. They take $1800 out of your back payments when they win for you.
I have a handful of suggestions..I sent you a friend request. I would rather private message you. I get the impressioon you are in NY also?? I cant message you until you accept the request. Hopefully I will talk to you soon
YOU SAID IT JEANNEAN!!! & believe me, I am NOT disrespecting anyone, but alcoholics get SSI no prob!! I'm not exactly saying that is a choice, but at the end of the day, you ultimately DO have the control over taking that drink!! I have ZERO choices about my condition. ZERO!! DONT even get me going about who gets turned down & who does not!!! I actually know a woman who used to work foor the phone company ages ago. She decides she doesnt want to work, so she tells SSI that she has a nervous breakdown every time a phone rings. Also tells them she is agoraphobic!! (aka a shut in)...yea, tells us all at the bar I worked in because she was there every day. Its a joke. once you have your head cut open & your brain lining patched, I think you need to be taken seriously! The system is so broken, it needs to be torn down & rebuilt! I can not tell you some of the experiences I have had at the pharmacy getting my pain medication!! I MUST be a drug addict if I am picking up pain medicine! But all these assholes on medicaid seem to have no problems!!
Jeannean Miller said:
My daughter is in the same boat! So frustrating that the S.S. Disability system declines people that have had brain decompression surgery for a Brain Malformation that is in curable but if you are depressed you get benefits! Keep your head up and keep on keeping on. Write your experiences down and know that your strength will inspire many!
Thank you everyone! This si why I love it here...there is always support & understanding, and good advice! To answer some of your questions...I cannot get temperary disability through work b/c I haven't worked in about 6 or 7 years. I already have medicaid and food stamps through DSS, and don't qualify for any of their other programs. I have not applied through an attorney, I did it on my own and was denied, appealed and was denied again. I think at this point I will try to find a good attorney to help. Emmaline, you had asked if I had my surgery in Rochester...I did, at Strong Memorial Hospital.
Jessica, I accepted your friend request...and advice wold be fantastic! I look forward to talking with you!
Thanks everyone...I'm going to keep putting one foot in front of the other. There's not really any other way, is there?!