4 months in bed, I can honestly say I am unsure of my future. I need a REAL doc. I now have constant cycles of high pressure,followed by leaks through my nose. Doc finally gave me Diamox a few months ago…but there has been little if any change. In Sept. after i thought i was dying,had very high fever,could barely move my neck & hubby swears i was having seizures(especially in my sleep) I was convinced I had meningitis, called the doc & he ran a CBC- his nurse called me 2 days later & said it was normal …this went on for nearly a month until i decided to get antibiotics from a relative…sure enough after about 4 days on them i felt a whole lot better, then i log in online to view the test results & my white count was very high. I was def worried at this point..I requested a CT myelogram to find the leaks(plural) & doc. refused saying they were unreliable & they already confirmed the one through my nose, I’m convinced i have more. Had another appt. on Dec. 1st. Doc says to me I know how you feel.. after my last appt. HE started having really bad headaches & via CT MYELOGRAM it was confirmed he had a leak also..i say great let’s order the test so i can possibly get on with my life…he agrees & tells me he will email the instructions in a week or two. 3 weeks go by, NO EMAIL. I call the office & get nowhere,then get an email shortly after that says he’s not comfortable ordering it yet for another 4-5 months due to it’s inaccuracy & COST….OMG I email back & said let my insurance co. worry about the cost…please order the test ASAP. no response…. this should be illegal!!!!!!!
Oh, Hon, I’m so sorry this is happening to you. You need something positive to happen FOR SURE. You are right. You need a “real doctor”. It is possible that you have a leak because your pressure was high enough to form a hole so the fluid had a place to go! Personally, I suffer from high ICP (and it sounds like you may, also). If so, the doctors may decide NOT to seal the leak(s). But you DO need someone to help you. There are a cluster of EDS docs in the Baltimore/D.C. area. I know of a patient with at least 5 leaks who is seeing Dr. Daniele Rigamonti at John Hopkins. Perhaps he can help?
Meanwhile, are you taking an mast cell medications? I think it is worth discussing that with your doctor, my friend. We are seeing such a huge link between external communicating hydrocephalus and mast cell disorders, that it may just be the “shot in the arm” you need to get over this hump.
Please keep us posted as to how you are doing and feeling, OK? You are not alone, FOR SURE. The world is just realizing how much we struggle with this condition. But answers are coming! Did your doctor order a beta 2 transferrin test for your suspected CSF leak? And I agree. It’s time to do some doctor shopping!
Hang in there – we’re with you,
chiari 5-6, csf leaks,Intercranial hypertension/hypotension,swollen optic discs,dermatographia, vit d deficiency, POTS, & constant pain.