Chiari Malformation type 1

Posted by anorwalk @anorwalk, Jun 19, 2013

Hi,

I've been reading all the post on chiari and wondered if anyone has a good out come of the surgery. I have been to 4 neurologist and 1 surgeon and keep getting different answers. 3 drs say I don't need surgery and the last one said that i really need it or could be paralyzed by any straining. I have a headache all the time and can barely function. Balance problems, numbness and burning in my hands and legs My hurn. Is only 5mm. Any advise? Thank you.

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lwoodbrey | @lwoodbrey | Oct 4 8:48am

Ouch!! Yeah I know how painful it can be. I had to stop working in 2010. Sorry to hear about your other underlying conditions. Recently had cataract surgery in both eyes in January of this year. They said the cataracts can come back even with the new lenses. I also had a fluid collection in the subdural area but they never called it a hygroma; it’s on my MRIs, but until I started taking medication for my autoimmune disorder I didn’t know that was causing some of the headaches. I get all of the types of headaches. Tension, chiari, pressure, migraine, the ones in your eyeballs, etc., etc. I did have a retinal tear in the past, but it healed. I have to do every six month eye checks. And I just qualified for disability this year for chiari and all the other diagnoses that I have. Making the decision to have surgery is something only you can do and it’s very hard. You can always message me if you need some support surgery or no surgery.!

tisme | @tisme | Oct 4 11:43pm

In reply to @lwoodbrey "@tisme I guess it really would depend on how debilitating your headaches are. I have suffered..." + (show)

@lwoodbrey I just read the xray report from the local hospital and its got me freaked no wonder I am having headaches yet no one is doing anything

gratefultoall | @gratefultoall | Oct 5 1:48am

I’m saddened to hear of your troubles. I was diagnosed with DDD over 20 years ago. It has progressed to the point that I am bedridden 18-20 hours a day due to pain. The medication I’m prescribed helps me move around for approximately 1–2 hours(max) 4 times a day. They say they don’t want to provide more medication because I’ll become dependent. My life is usually misery now but at least I can still move. I’m not about to have surgery that could totally paralyze me. My prayers are with you.

tisme | @tisme | Oct 5 3:14pm

these headaches are bad, I ended up at the ER and sat there for 7 hours I asked what was going on , They said they'd lost my file . anyway did nothing sent me home with a message to come back if needed . This was saturday. since then the headaches are bad. I mean bad. to the point I am willing to risk surgery. I see a family doc tomorrow with the ER reports. first time I did a couple of years ago with non stop headaches I ended up travelling for over an hour to see the ER doc at our major hospital from there I was diagnosed with chiari. This time I have to see a family doc that charges fees like ............ if he sends me to the large hospital I dont know how I will get there , the train journey is hell not just rock n roll pain with chiari but arthritis. need to take anti inflammatories but they are bad for my stomach and liver. if the illness doesnt get you the treatment will I was banned from facebook by AI for impersonation , of what or whom I dont know.

tisme | @tisme | Oct 6 3:59am

been a good day today, assume its because I slept without a pillow now I dont know what to do , do I tell my family doc and maybe see the neuro who wanted to operate last time , or do I leave it and hope the headaches dont come back , but judging by the report ( xray c/t ) I read I really wonder 🙁