help me please

[ambyj]

i just got diagnosed with acm1 nov. 6, 2012. i have all these symptoms that are just making my life a living hell. i went to a neurologist who i feel like is barely taking me serious because i have a "mild case" that is "only" 9mm. i was sent to a NS who was a complete jerk and said im not eligable for surgery. and yet no one is telling me how to get rid of my symptoms. i feel so completely alone right now. im only 21. i shouldnt be feeling like im 90. i am such a liability my school is making me take a medical leave of absence for my safety. will it ever end? how do i get these doctors to listen?!

[adventurer53]

I have had several leaks without having surgery. In my case it's because of prior surgeries to the mid and lower back, both inside and outside of the spinal cord. It happens for me if I take a bad fall. The scar tissue that is attached to the dura tears a tiny hole that leaks spinal fluid. I don't know if this is very common though. I have one right now and have had one blood patch. I feel for you. You feel like your life is being drained from you. For me, it's always the left side of my head and it's all the classic symptoms. I try to lay down, then get up and do a few things and then lay down or go down in the recliner. But I also have pain meds to help with the symptoms. Hope you find a doctor that can help you!!!

[cewilcox]

Clinical trials.gov. Do your research on the doctors

[Dicon]

How do they test for a CSF leak?  Can you have a CSF leak without ever having had surgery?  I definitely have horrible neuro sx and the only relief I get is from laying in a recliner. I have had incidents where if my head is turned in a certain position I get almost like a pressure build-up feeling and have tasted metallic in my mouth..... I was afraid of a leak but didn't think you could have one without having surgery in that area.  How did they treat yours and did your sx go away?

[ambyj]

appt for dr heilman is Feb 4 at 4pm! wish it was sooner but ive waited this long havent i?

[ambyj]

i will. its just sad when you have to push so hard to find answers when it is there job to figure out what is going on

[selmaS]

  I am glad u got the referral...good for u !!

Sad that u had to push for it and that the NL has no idea....I had a CINE and do not have hydro....very sad they do not have a clue what is going on in their own field.

  Keep us posted.

[ambyj]

so, i saw my NL today. she said there was some water buildup near the "herniation" but that is "normal" as well as some water on my spine. also "normal" which is what is causing my tinglyness. i asked about a CINE MRI but she said "we only order those with people who have hydrocephalus(sp?)" she also said that my trouble with my walking is basically all in my head even though she saw a "lag" when i was tracking her finger. but i insisted on a referal to dr heilman up at tufts and they are sending my records today. and surprise surprise she gave me NOTHING for pain even though i told her every over the counter medicine ive tried doesnt work. its just annoying when you can tell your dr is talking circles trying to hide the fact they know very little about ACM1. hopefully i see dr heilman soon though

[ambyj]

i dont know.all i was told is there is no fluid on my spine from the mri on my back. ive had headaches/migraines, nausea, and been "clutzy" since i was little. the first migraine i remember is from when i was 6. and then the other symptoms started very mildly about a year ago and have been getting progressively worse for the past 6 months or so

[teeners]

how long have you been experiencing symptoms and do you have a syrinx? or csf blockage?

[padrssuck]

i feel ur pain. I was told by one neurological that my herniation was an "incidental finding" and it had nothing to do with my symptoms (which by the way are almost identical to urs ) after traveling 3 hours to a true chiari specialist, i have a dx and surgery scheduled for next month. Not only did the neurologist i saw read my scans wrong (herniation was twice the size he told me) my cfs is almost completely blocked and i was told surgery is my only option. Good luck to u. Don't give up. I almost did and Im ao happy i didn't. There is some end in sight for me (i hope!)

[joyce42063]

I was feeling that I was dying, but doctors either thought I was mental or they had no idea or they gave FM or migraine..  If your symptoms are less severe with bedrest, you definitely have CSF leak, not CM.

[joyce42063]

I had the same symptoms, it was a CSF leak not CM

[ambyj]

i have had a lot of these symptoms for a while.theyve just been getting a whole lot worse in the last 6 months.

constant headaches (the 1-10 pain scale, my headache is at a 7 on a good day)
im getting 2-3 (sometimes 4) bad migraines a week that wind up making me vomit and staying in bed all day
stiff neck since 11/26/12
tremors in my hands (started about a year ago)
very weak hands
balance problems
walking difficulty
trouble with my fine motor skills (i.e. doing my hair, doing buttons, starting a zipper)
constant nausea
falling,tripping,and bumping into things all the time
falling in the shower
a little difficulty swallowing (not too too bad though. food gets stuck when i first swallow it)
and sleep problems. one day i wont be able to sleep at all or im constantly tired all the time  

the symptoms seem to get worse by the week and theyre wearing me out

[joyce42063]

Anyone with CM diagnosis has to insist on excluding CSF leak to the doctor before even considering a brain surgery, especially the surgery might not help even though you have a true CM.  How many mm of CM is in significant because it could change 4 mm for the better in my case in a short time, and it turned out I have recurrent CSF leaks from an auto accident.

[teeners]

hi! i know how frustrating it can be! i am 22 and had to take an extra semester and will just graduate this winter. i have been dealing with terrible symptoms for 2 years, and due to the error of a radiologist and doctors overlooking my mri results as "incidental findings", i too am having problems. my first appointment with a neurosurgeon was supposed to be tomorrow but it was cancelled today and rescheduled for january. im so scared and frustrated because symptoms are worsening! what kinds of symptoms are you experiencing? can your regular docs order any of the tests?