My appointment this morning was absolutely awful! 
out of my long list of symptoms, he said "all i can potentially fix is your val salva headaches. Your other symptoms may or may not be related to chiari. some symptoms i describe have disappeared for people after surgery, and for others they dont." he's referring me to a psychiatrist because he thinks i could be "somatising"
well thats just great. do i accept the surgery offer in the hopes it would rid me of my neurological symptoms? or do i just let things lie... and accept it could be stress/anxiety?
i honestly dont know what i want to do.. i really dont.
my husband is furious with the way he spoke to me.. DONT EVEN GET ME STARTED on the other things he spoke about, saying "why do you work in a call centre, if you dont enjoy it? why dont you get a new job? .. i do this job everyday and i love it".. well good for you MR BRAIN SURGEON.. im sorry, but what land is he from to think its possible for everybody to just get a job they enjoy? FFS!!
just so you know, headaches for me do not affect my day to day life. although i get them daily and i do have val salva headaches. it is my confusion/brain fog/weakness that severely affects me and my work... i even struggle to look after my daughter.
if anyone could advise - i would greatly appreciate it!
Hmmmmm…they way my NS put it to me was that I wasn’t going to get better. I may not get worse, but I wasn’t going to get better. And I had to decide if life was worth living as I was living it. I didn’t have headaches everyday either. But I had the brain fog, weakness, drop attacks and I pass out a lot. He couldn’t guarantee how much surgery would help. But I knew I had to try. I can’t be 5 minutes from my husband at any time (we live on military housing so he works right around the corner thank goodness) in case I pass out. We have a hard time going out (even grocery shopping) b/c there is a good chance I’ll drop like a fly. So I knew I had to chance the surgery. I don’t want surgery, but I don’t want to not have it and never know if it would have helped.
I guess you just gotta ask yourself, if it doesn’t get better on it’s own are you ok living the rest of your life the way you currently are.
Or you could go see a ns who is a bit more compassionate and get another opinion. (which I would really really recommend).
I am sorry you had this experience with your doctor. Its scary enough dealing with the diagnosis and symptoms but then to have someone say you are making stuff up.........PLEASE why would ANYONE make this up? My family/friends always thought I was making it up/exaggerating or just trying to get attention. It was always so hurtful when they said as much.
If you can is it possible to find another doctor? I went to three different ones before I found one that was "ok".
Hang in there!
Thanks everybody for your replies. Now i've had a chance to calm down lol... I think it is highly possible that I do suffer with physical anxiety symptoms as well as chiari symptoms. Ive had a REALLY rough year if im honest and ive suffered with anxiety and depression many times before. He did say that my symptoms could be related to chiari but they could easily not be too (as we all know, most of the symptoms are vague and non specific)
so here's my plan: im currently trying to minimise stress at work. I'll go and see a psychi doctor.. after all, thats not gonna hurt is it? There's no pressure for me to have the decompression surgery - and i really really dont want to have surgery right now. i dont think i could mentally cope with the recovery.
i had my daughter by c-section last year and this got infected and re-opened on one side. i was so ill and in a LOT of pain with this. And although i know infection after surgery is a low risk, i couldnt cope with that again. so i think im going to try other things first and see how i go
i had a bout of rectal bleeding 5 weeks ago and its taking me a while to get over it, i had tonsillitis before then (i ended up in hospital) and in october last year i had appendicitis (but it was a grumbling appendix, so it took doctors 2 months to diagnose me after thinking i had crohn's disease initially)
i think my body needs to stop acting up! haha, then i can soley concentrate on chiari symptoms without other factors making it worse.
thanks again (especially if you read all of my message haha!)
I would definitely pursue treatment for the anxiety just to rule that out as factor, but also try to get a second opinion. Does this NS see a lot of chiari patients? Has he ordered a CINE MRI? If you are having a CSF blockage it can cause the symptoms he dismissed.
Ive only had a notma
Ive only had a standard MRI. he does a chiari clinic once a month and covers south yorkshire, north derbyshire and north lincolnshire. I’ve only heard good things about him. boy was i shocked! Lol!
I do have private care through my husbands work. so i might seek a different doctor privately. i dont necessarily need a 2nd opinion as such… just somebody who is a bit friendlier!
It took my first neurosurgeon three weeks to tell me there was nothing they could do for me. I didn't even get an appointment - I had to call *them* and they told me over the phone. Do people really think we're stupid, or making things up? All I want is for someone to take me seriously...
I sorry you had to experience that. I have experienced many doctors like that. I am not sure what to tell you, I am 4 years post op and it seemed to make my symptoms worse because before the surgery I was able to still drive and get around independently but since the surgery I am more dependent. Every case is different. My Doctor told me the other day that he does not suggest surgery to alot of people because it makes the conditon worse. I wish I would have known him before my surgery but I am a firm believer that everything happens for a reason, and nothing happens without God's consent.