I understand ur frustration as I know there is no care once the Drs feel the incision is healed.....
It does not mean u r healed or not having an issue....but the Chiari specialists are surgeons and can and will help if u require surgery, if not u will need to locate a NL that can DX what is going on....
How far along post op are u?
I'm almost 6 months now .. and I don't know of any Chiari specialist where I live :( only seen the one NS who seems to think it's all better now I've had the op :(
Well that Dr is wrong, some of ur symptoms may be better and hopefully ur CSF flow restored....have u had a post op MRI?
May I ask when do u see ur NS again?....
Yeah I had one about 5 week after my op but not had another one since and supposed to be this month but haven't got an appointment yet x
I'm sorry you're dealing with this. I *completely* understand. My NL actually had the stones to tell me that the tingling in my limbs could be from sleeping on them wrong. Yeah. Is that what you learned in med school? I wanted to slap him.
You probably need to look for a different neurologist. Talk to your family doc and let him know you've lost faith in your neurologist and ask for a recommendation to someone else, preferably someone you've researched that has a clue about Chiari.
U may want to contact ur NS, set up that appointment and ask him/her whom they suggest u see regarding a NL....as they would know which ones in ur area know Chiari.....
Call and set up ur visit.
Thankyou for your response..
As if he actually said that! I'm sure some of them don't have a clue ..
And the Dr thinks there's nothing wrong with me too so not even sure she would help but I will try and will have to keep trying until I get somewhere.
I hope your feeling okay x
Thankyou I will do, I will ring and try speak to him.
Usually can only get his pa and she's no help lol x
That is so horrible. Docs who don' care should be thrown out the window immediately:)!
I'm in kind of the same situation but diff too. I haven't had surgery and my neuro won't even won't consider surgery cause he says the only symptom I have that is Chiari-related is trouble walking and I haven't had that happen often therefore I don't need surgery. He says that since my "main" complaint is migraines & he doesn't believe they have anything to do with Chiari he will treat with medication....and the kicker is when I mention other symptoms he won't even treat them, he doesn't act like he hears me. This pre-surgery!
Oh for pete's sake. The headaches are a symptom. My first neuro was convinced my issue was migraines, too. I'll go ahead an spoil it for you: none of the migraine meds will work. Even those that average out to $20+ bucks a pill. Because it's probably not migraines.
Walking into walls? This makes me want to punch a kitten.
I had a few medical professionals in my back pocket to help me through this process (my mother is a 30+year ER/ICU nurse; my great uncle is a retired neurosurgeon; my sister is a family doc) so I had some good advice and second opinions. Is there anyone you know and trust that you can take with you to your next neurologist appointment? If you were closer, I'd go with you...
One thing I've learned through this process is that the only person responsible for your health care is YOU. Time to get obnoxious. It's for your own good. Ask your doctor for a referral to a surgeon. Let him look at your MRI and tell you to your face that's not the issue.
He refuses to give me a referal to a surgeon til we "exhaust all medication options first". :(
Both my parents have gone to appts with me but they trust him sooo they won't listen to me.
There is someone close that has Chiari and knows about but, I only met her through facebook and we hae only chatted a couple of times so, I dont know her well.
I agree with ZiZil. But on the other hand, what if the doc is right, which he probably is not, but anyway. Do you really want to have a surgery if you can find some meds that work?
I think it is a good idea to try a few meds first, just to be sure. But it is important that your doc also keeps an open mind if you do. You can not try meds after meds for several years with the doc convinced that you have migraine. But to set some timeline and try a few meds, if just to be more certain on the diagnosis, might be a good alternative. I would do that.
Either way, a second opinion is never bad and you might want to consider that if you have the possibility.
Good luck, either way!
There is no question on diagnosis, Chiari was seen on MRI.
I don't mind trying meds first before surgery. What makes me uneasy is the fact that he refuses to believe migraines are a symptom of Chiari.
And I've already been on med after med for migraines for the past 4 yrs with my PCP....it's getting old.
You could try diamox which lowers intracranial pressure. If it makes you better then you know your symptoms were caused by your chiari and not migraine.
Otherwise you need to change doc.
The Dr's told my daughter the same BS for nine years, seven of them to be exact. Thank god she found a NS who knew what he was talking about. She has been well every since. Same for me, I can't tell you how may ignorant Dr 's told me the same BS even when it's identified on MRI! By the way, headache is the main symptom! I think we should all start to report these Dr 's to their respective medical boards. Then maybe they will take notice and properly treat our condition. Don't let them push you around. They hold a license. Lisa