well went to my doctor today for a check up and was very disappointed. I filled out all the pain sheet and lets just say my little guy on the page was covered in ink. I waited 10 minutes before I got called back and then waited in the room for 15 before my doctor came in. When he came in I told him about the stabbing pain that I have been having where my shunt is and the pain in my neck, and how my Chiari headaches have come back. I also told him how my legs go numb after standing or walking for a period of time. So now it was his time to talk and it was VERY disappointing. He started with since I don't have insurance there is nothing that he can do, because no radiologist will do my images without insurance. He went on to say that he can't explain the numbness and tingling in my legs because he didn't operate on my back and that my abdominal pain could be caused by misplacement of my shunt but that is very unlikely and that the images will probably show nothing at all. Then we started talking about my headaches and he went straight "what did we set your shunt at?" I told him that it was set at 100 but I wasn't having pressure headaches, that it was Chiari headaches that start at the base of my neck and don't go away. When I told him that his response was "it can't be a Chiari headache, I fixed your chiari problem." Then he spent 15 minutes telling me that even if he did an MRI and CT that he probably wouldn't find anything and then to make his point he showed me the space between his pointer finger and thumb to say very little. He then proceeded to tell me that if the pain got bad enough then I could go to the Emergency room but if they didn't think it was emergent then they would send me home. Then he said well, if you get medicaid call me or if you don't then go to the county hospital, they can't turn you away. I walked into his office in pain today and I walked out in pain and very upset ready to give up. I am starting to feel like brain surgery ruined my life, I went from being able to drive, work, and have a life to feeling like a prisoner in my own home. I can't do anything because I am in constant pain all day everyday. My pain meds just barley take the edge off but since I don't have insurance any more I can't see my pain specialist. I can't sleep I feel like a walking zombie and to top it all off I have to muster up enough strength and will power to take care of my 3 year old because I can't afford daycare because I have no income, I have applied for medicaid but they have 30 days to approve or deny me. I have started the long road of filing for disability but that weighs heavy on what my doctor says and that scars me because according to him today he fixed my chiari. I am sorry for the rant but I feel like no one else understands what I am going through or how I feel. Does anyone have any suggestions on what I should do or references for a neurosurgeon in the Fort Worth or Dallas Texas area.
Id like to start off by saying Im so sorry you're having to deal with this. I've had similar problems with the no insurance thing. I go to doctors in the DFW area my neurosurgeon was great!!! Dr Anthony lee at fort worth brain and spine,i was able to go to him with no insurance and he order me Mri and CT scans and got the radiologist to bill me instead of making the payment up front. As far as neurologist Dr. Linchon Chin at Tarrant neurology associates(i believe thats the office) is ok, but i just started seeing Dr Debroah Friedman at UT southwestern which so far seem like she really listens! But took me forever to get sent to her. As far as hospitals i was told if im having a worse headache ive ever had, to go to the ER. I have and once you tell them you have had brain surgery they normally do a CT or MRI to make sure everything is ok. So if you feel something is wrong then dont just sit there in pain, go to the ER! Im not sure where you are located but JPS in Fort Worth will give you help with medical bills and cheap doctors appointments if you live in Tarrant county. Im sure Dallas county has a program like that as well, just calls the hospitals and ask. And with the disability lawyer up, they will denied on the first go around more than likely. i used Kraft and associates in Dallas and you dont have to pay anything unless you are approved. I hope all my info help
Amy,
It sounds if we are in similar places however I am off to pain doctor and one of CM symptoms is blurry vision. I will read more and get back to you later hopefully my eyes have settled down.