I was in the hospital due to falling/not being able to walk about a week ago. it was chalked up to a bulging disc in my lower back and pain. I had my consult (2nd neurosurgeon) at hopkins the very next day, I was told that judging the "anatomy" of my chiari and his exam I do not need surgery but to follow up with a neurologist. I saw my 3rd neurologist yesterday and she said she has the answer to this entire journey for the past 5 years....get ready....Conversion Disorder.
I am so tired and I am not even sure how people go through this discovery process and keep a job - I am so discouraged and upset. I feel like this will never end. I work a mile from Dr. Fraser Henderson but i cannot afford him - he seems to be the next logical step.
Praying for anwers soon, trying to accept that I do not have the end in sight just yet and holding on...
Thank you both for responding…I live in Germantown and I have seen neurosurgeons Caputy at GWU and Weingart at Hopkins. Weingart was at least very nice, he could not see all of my MRI images because there was an issue with the disc which is getting cleared up but from my CINE MRI he thought it did not look like the chiari was in need of surgery, I also do not have the classic headache and from what he said that always happens if it is “active” so I am just lost. Caputy was very dismissive and arrogant, Weingart was very nice to me and my family but he could not comment or speculate further on my balance issues and urged me to get to a neurologist. I have had bad experiences with GW docs anti only went back because their satellite office for neurology is close to work and the first neurologist I saw who was also dismissive had apparently left the group so I thought maybe I will find someone decent. The doc I saw is also a professor who teaches on brain misfires and psychological issues so she was very excited when I came in and although I clearly have other avenues to follow up on she wants me to be a part of a program that is privately funded which her mentor happens to head up…long story she said all of my issues will be solved with psychotherapy. I was stunned.
I agree about trying to see Henderson, I do not understand why there are so many doctors in the DC/MD/VA area and I cannot find any answers. Part of me wants to believe her, that it is all in my head. The other part of me is afraid that one day soon I won’t be able to pick up my son or work, or have a normal (well, that is being used loosely) life. I know in my heart that there has to be more to the story.
Beeba you make me smile, thank you so much for the encouragement. You’re right, I do need to find a way to get to Henderson …I actually had a dream last night that I saw him…tells you how much all of this is consuming me lol. So, upper Rockville/Gaithersburg is now North Potomac which actually isn’t far from Germantown. My moms side of the family is from Bethesda, my dads side is from Silver Spring area so I was born in DC and I grew up in Silver Spring (Springbrook High). Actually I’m trying to avoid the surgery because my mom died at 44 of sudden cardiac death while driving me to school my senior year of high school. She had Wolff Parkinson’s White syndrome and lived a healthy life but one day her heart just literally stopped and she could not be saved. My father took care of my sister and I, and iN my mid twenties he suffered a dissecting aortic aneurysm and ended up paralyzed in one leg and suffered a subsequent stroke. He is alive but as you can imagine I’m at high risk for heart issues/stroke and brain surgery may be a higher risk as I also have a heart defect where my natural pacemaker isn’t working, my heart has formed it’s own from a group of cells and tha is how it beats. I’m fine but I don’t take chances with it. I also have a (high functioning) autistic 5year old and I’m terrified of being it of commission for a long period of time.
Ok enough blabbing sorry lol…so Weingart apparently had trouble seeing my brain MRI images, saw the cine just fine and could see the chiari on that, but couldn’t open the original MRI images that show the still images of the chiari. I did tell him about my bulging disc at L5-SI and he couldn’t comment, he did say my balance was bad. What I’ve read about Henderson is that he is good at looking at the entire picture when it come to chiari, the entire spine, and any potentially related disorders. I do not know what dysautonomia is but I’m googling it ASAP. I also (and I know this is common) have tons of symptoms of MS…but my past MRI did not show that. I’ve had a positive ANA test but I do not know…nor can anyone figure out what kind of autoimmune condition I may have on top of the chiari. I don’t ever present strongly for anything although my labs always give hints which most docs do not have the patience to chase down. I know something is wrong when I am spent to the point of having to lay on the floor tonight, unable to get to the couch after running to IKEA this morning to get small items and then came home and tacked up a few picture frames on the wall. You would have thought I just ran for an hour, I could not move. My husband brought me water and my ipad, along with a snack and I recovered and am now on the couch. Fortunately my son was in bed but it is scary how fast I run out of steam. I’m 32. As for the quack doctor I just saw, I think I’m going to send her a note letting her know that the little voices in my head told me I’d be better off with a glass of wine and a movie than letting her reel me in to her studies. Which, by the way I think are risky as someone could very much miss getting to the right diagnosis just because some doctor sees a chance to dump them into the “bandaid diagnosis” bin!