I haven’t been writing, but I have been reading and keeping up with everyone’s posts.
I had my surgery Sept 22nd and unfortunately didn’t have the pleasant experience that most seem to have. My NS was great as was the staff at the hospital. Long story short I’ve had 3 MRI’s and a CT scan as well as lots of blood work since my release. I ended up in the ER on Oct 30 th with Bell’s Palsey, I have had a Discoid Lupus flare ( bad enough I ended up with 9 cortisone shots in my scalp, and if that isn’t enough my memory still is bad ( and the newest thing is my mixing up of words…I’ve been calling quite a few of our pets by “dead” pets names…some have been gonecalmost 10 years and don’t look anything alike). And I am once again waking up with numb fingers and last week I had numb toes. On top of that my ear problems have kicked up and 2 weeks ago my ENThad to cauterize my ear because it was so inflamed it was bleeding.
Today I went back to the NS and he tells me that I check out just fine and that the memory/ numbness is not Chiari or surgery related and I should go see a neurologist.
I then go to my ENT and he says everything looks good today, but that we may have to cauterize every once in a while because it seems to be the only thing working.
Now for the best part. My state disability ran out 2 weeks ago, but I can’t go back to work yet. I can’t apply for ssi disability because I am cleared by the NS…and we don’t know if my hearing loss is bad enough to get it.
Needless to say I am at the end of my rope! My hubby is being so supportive even though I have either been crying or biting off people’s heads all day! I am starting to feel like a hypochondriac. I have so many little things wrong, but nothing adds up to any one thing, and people don’t realize I feel crappy all the time because I may recover from one thing, but then something else comes up.
Sorry for ranting, I am feeling so deflated today and can’t seem to pull it together!
Oh, boy...you have and still are going through so much..you ARE NOT A HYPOCHONDRIAC!!!!! Thant being said....You can still apply for SSDI even though you are "cleared' by NS....Question is is your NS in agreement with you that you still have major symptoms??? Same goes for your other doctors.
You can apply on line at www. SSA.GOV....I needed help doing it..my hubby read me the questions and I answered them..he typed. I will tell you, for me, it was an upsetting application to do......
My suggestion for you would be to get in touch with your doctors and tell them that you are applying..you cannot possibly work in your condition. I say this..so they will be aware you are applying and get the paperwork back to SSDI ASAP.
I was lucky and had a good relationship with my docs office staff ..that is so important, I have found..b/c they make sure the doc gets to the paperwork pronto!!!
I am glad you are back here..you need support..even though it sounds like your husband is great..I find that you guys are far more supportive and understand than my family members....I think it is b/c you all 'get it', LOL
You are in my thoughts and prayers..pls keep us updated.
Lori, thanks…I thought I had to be set up by the doc. I am going to see a new neurologist because the one I used to see was such a cold hearted witch when the Chiari came to light. I asked the NS to recommend someone else who I will see after the holiday, but I am sure they have to be more sympathetic then “what are you so upset about, your being ridiculous”…her EXACT words!
I too don’t want to fill out the ap…but I also need to be reasonable because I don’t know when I’ll be able to go back to work.
My hubby is getting better with it, for a little while he didn’t undated that I was taking so long to recover, but he is really helping me now!
Abby, I do have something, but try not to take it unless necessary…I’ve always suffered panic attacks, but try to control it first. I take so much now for all the different problems that I really don’t want to take any more Mede.
Thanks girls…i’m glad to be back. Tried to not be the negative one…I didn’t want to frighten any one that is waiting for their surgery…but I am so thankful for your support!
Hoping to stay positive through Christmas and remember that there are others that would love to trade their problems for mine!
Please know that you are not alone. We all have so many other health problems crop up in addition to chiari. I don't know who you have been talking to, but there are alot of people that have had the surgery and have not had great experiences either. Also check with disability, even if your NS cleared you, you can still be approved for disability. I was cleared by my NS and I got it. Don't give up especially if your conditions are keeping you from being able to do your job. Remember bthat our mental health is taken into account too. They added up all of my "little" symptoms and my depression, plus the chiari. I did get an attorney that deals with disability only. Usually those attorneys don't cost anything unless you are awarded a lump sum. Worth checking into. Hang in there!
Oh you said the “A” word…why do I feel like I’m doing something wrong. My mom and SIL were telling me this afternoon to call an attorney ( she used to work for one that does disability). I have such a bad tastevin my mouth from attorneys after my divorce, I feel like if I really needed it then SS would just approve it! But you are tight, all of the little stuff (and the depression) leaves one tired, sore, dragging girl.
Thanks for the encouragement…I will think about looking into it after Christmas. I’ve got to stop trying to act like everything is fine and ask for a little help.