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6346533 tn?1441299047

So Frustrated

I feel like the DRs and NS dont care anymore now i have had the op!
Was sent home from work last week by the first aider as i was not good at all..
So i took a week off work and went to the DRs and i feel like she just wanted rid of me..
I had made a list of all my symptoms and what had got better or worse lately and anything new since the op and she wouldnt even read it :( ..
She just focused onthe HA which yes is a huge part of this but not all of it and other thigs have been getting worse but she wasnt interested at all..
She just kepts saying my chiari is not the problem as ive had the op so its better now!
Grrrrr!
I started to get upset as i was so mad with her and also in pain and she just said "you seem a bit teary your prob just depressed now that can make you feel like you dont want to do anything"!
Im not depressed i dont feel it anyway and if i was it would only be because i feel im getting nowhere!
And i dont "feel like i dont want to do anything" im just in too much pain or too worn out too.
And i feel like my NS doesnt understand as he said i was all better now and fit to resume the duties i did before with no restrictions!
When how can i when im in far too much pain to do most things.
And i feel like people just thing im lazy, i even feel my family dont get it, they seem to think im putting it on.. And because of what the NS said they excpect me to do alot more than i can :(
I dunno what to do.. No1 but you guys understand..I dont know how to explain it to work or my family when the NS says am fine i just look like a liar :(
I dont know what to do anymore.
And im soo sick of been dizzy/ lightheaded now too its gettin worse and worse its everytime i stand up i get lightheaded and my head goes fuzzy and i struggle it keep myselp stood up :(
I mean im sick of all the sypmtoms as im sure you all are too, but this just gets worse and worse :(
16 Responses
620923 tn?1452915648
COMMUNITY LEADER

  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?
6346533 tn?1441299047
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 :(
620923 tn?1452915648
COMMUNITY LEADER

  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?....
6346533 tn?1441299047
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
7595610 tn?1397467772
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.
620923 tn?1452915648
COMMUNITY LEADER

  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.
6346533 tn?1441299047
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
6346533 tn?1441299047
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
Avatar universal
That is so horrible. Docs who don' care should be thrown out the window immediately:)!
Avatar universal
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!
7595610 tn?1397467772
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.  
Avatar universal
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.
Avatar universal
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!
Avatar universal
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.
Avatar universal
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.
5640779 tn?1375813366
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
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