I am a 26 year old with two amazing children My son will be 5 in march and my daughter will be 10 in june. I have Always been clumsiness, However I've had medical issues since my son was born in 2011. Had a lot of headaches but never thought anything of it they didn't start off bad just annoying. Over the last five years ive have 9 surgeries which started with my c-section with my son, then from there it was an abdominal lap to look and maybe find a cause to my abdominal pain, nothing was found. my C-section was in march 11, the lap was in December, then in feb 2012 i had to go in for my appendix which was abnormally long and had a self contained infection, pain and headaches and other things i didn't really think about due to the pain i was in all the time. July 2012 went in for a tubal thinking it would help, it didn't. Went in September for hip repair. This seemed to help for a time i still had the pain and headaches but my Clumsiness seemed to get better. I moved in 2013 to Indiana from Missouri and honestly i am glad i did because i have gotten better healthcare here. I dealt with all the issues seeing a doctor here and there and getting told i was depressed so put on medication for that and B.A.C tablets for my headaches which was the only thing that seemed to ease them up for me. I went to a GYN in jan of 14 and on Feb 14th of 2014 i had a hysterectomy to try to get rid of the pain. It helped for the most part. The headaches didnt seem to get any better and nothing helped got told they were just migraines so i didnt think anything of it. I went to see a ENT and ended up having to have my tonsils removed because i felt like something was always in my throat, thinking this would help which it did at first but it had come back. Within 3 week i was having issues with my gallbladder and it sent me to the ER in an ambulance which lead to another surgery to have my gallbladder removed. then in may i had a knee surgery to fix an issue that had been caused from a fall. I'm Always falling over thin air or nothing like there is something there, I've started having issues walking, my neck and back hurt all the time to the point im in bed more then i want to be. The headaches have gotten worse, i have numbness on my entire left side and loss of sensation on the same side, I end up with pain on my left side as well. In July i went to my PCP who was worried that i have MS so we started the work up for that... at least we tried couldn't get the MRI approved, sent to a neuro who got it approved and i got it done mid September. Within a week and half the neuro called and told me he didnt see any MS, tumors, stokes or anything like that what he did say was " We did find a Slight malformation, but some people have it and some people dont it wont cause symptoms we will discuss this more at your next office visit" he said he wanted to get a cervical spine mri done. I havent heard a word from him since nothing. I got into my PCP November 20th and she gets the MRI results and reads what my neuro failed to tell me " Chiari type 1 malformation. I have a friend who has this so i had a slight idea what it was, my PCP had no idea what it was and went to look it up to try to explain it to me. My neuro and the person who read the MRI believes that it is not large enough to cause any issues. So i began to do my research and EVERYWHERE i have read there are people with mild cases that have severe symptoms and ones with large herniation's cause no symptoms. So i am currently looking for another doctor who will listen. My PCP wants to finish the work up for MS but i cant help but think the cause of my symptoms has been found and now its time to get me to a doctor to treat me. My PCP said if all the tests for the MS come back negative then we can looking into the Chiari further and i dont see her for another 3 months. The headaches are daily once again and now its affecting how i can interact with my children thinking its time to push to be sent to a doctor who knows about this condition.
This has taken everything out of me, I am a Writer but since things have gotten worse i havent been able to focus on writing and its not helping me finish my 2nd book at all, but due to my medical history doctors seem to think im just after pain meds and that im what they call a surgery addict. Most of the people who call themselves my friends keep telling me after mentioning that i want to see a neurosurgeon that " Surgery is not the answer you cant go to surgery to fix every issue that arises. I dont know if surgery is the answer or not but someone who knows this disorder would know how to treat me better then someone who knows nothing. Fusteration has set in and i know having people to talk to would make things better and having people who know what im going through would help me even more i believe. I do know that the fact that my neuro just brushed it off like this isnt something that causes issues so its not a big deal means hes not the neuro for me. Ive heard some very hateful things during this process from people who dont know what this condition means.
" Well I havent heard of Chiari so it cant be that big of a deal"
" The doctors dont see a big deal with it so i would listen to them"
" I havent heard of that are you sure its real"
" Oh its just a slight malformation which means its not that big of a deal"
I wish i could have these people live in my shoes for one day and see if they think the same thing afterwards.
Current syptoms
Headaches
Neck pain
Back pain
numbness in my left side
Pain in my left side
Random numbness in my hands and feet
the feeling of something caught in my throat which causes some issues swallowing
tongue numbness
lip numbness
Issues Getting up after sleeping
I have to be careful how i move my neck when it is hurting really bad or i will have numbness in my legs preventing me from moving.
weakness after doing tasks with my arms or walking for long periods
I just want my life back i want to be able to take my kids to the zoo and not have to sit every 5 steps because my back and neck hurt.
I have to take a pillow to family events because theres a chance of me getting a horrible headache that wont go away and i need support to my neck
I'm tired of spending most of my time sitting or laying down because of pain.