specialist update

[irislita]

Hey guys...i think i am really falling in a deep depression.i had the specialist appointment and i am still crying.i was really nervous this morning.my bf was not a big help as he looked at me like garbage and i would have needed a shoulder.the hospital the specialist works for is sooo big.it took ages to go to the right spot.finally after a long while.i got in and he was so cold and started really strange questions.why are you here and who brought u here.well my nl and my pcp...well thats strange he said.than he started to ask me about my first symptoms.i told him about the pain and than he looked at me not believing me i have pain in this area.how was the pain the first time?i told him it was a massive pain in this area...but how was it and in which direction it was running from eye to ear or the other way around???!!!i really dont know and told him i dont know.he said u need to know that!!!! I started to get more nervous and not feeling comfortable.he said why i got operated...and i said,because i was so bad and had faith in my doctors...he said u made the wrong decision too quick.might be right...but i had no one to help me.than he told me i am not properly prepared as i dont have the info of operation.ok...i never got one...i swear.and he said u have to have one per law.i started crying and he said u are angry at me and u need treatment as u r too nervous.i know i am a nervous person...but thats not why i was there.my bf used this occasion to tell him yes she is nervous...and later to tell me i am crazy!!!! The ns even asked me why i didnt go to germany...thats none of his business i guess...he told me he has to start from 0 and run much more tests...ok this is right.i will be in hospital for one week soon.i dont doubt he is a specialist...but i am so disappointed about the wat he treated me like a crazy girl.he said my chiari is special and is now chiari 0,but i have a strange pathology.i ask him if he can have a look at my flexion xrays and again he asked why are you here????!!!! I told him that i need help thats why.he said ah yeah u have craniocervical instability....i knew that!!!!and left it like that.he told me i dont want to know how ur symptoms are now again and again...i dont get it.i am crying rivers as my bf really made everything so much worse....i dont get a thing...or i must be wrong or this was really happening.

[Rahe28]

Please please let us know when your testing dates are so I can make sure and ssay a special prayers for you. You are always inn my pryaers but, I want to ay a more specifive one,,so please do tht for me ~~~~~   a rose for you my beautiful friend <3

[irislita]

Thanxxx my sweet ladies for ur support.it feels good to have u there.i am still a bit shocked.but to put in sum...this doctor realized i still might have chiari 0 issues.he will get all the testing done that is so long over due...and from there he will take his decision.i really needed a doctor that feels responsable for the case and introduces the necessary steps.i do need these tests and any other ns will need them.
I sometimes wish things could be a bit easier...but well thats life i guess.
Cash u are a fighter and it is a martyrium to live with daily neuro pain.my vertebras burn like fire...but again as it is not visible its harder ro make people understand.
I am so scarred if they will fuse all these parts i will lose so much mobility....but if it needs to be done...i have to go thru this.
U r all in.my thoughts and prayers.have a great day

[Rahe28]

All I can say is that my tears are flowing for u. I am so sorry my sweetie. U deserve so much more than this !!!!! I would  just go ahead and get the tests, even though he has an awful manner....and go from there. U have to start somewhere my darling. Hugs, loves, and prayers <3

[cash242]

Selma is right he is a means to an end. I do understand your pain as I had the instability in c5 c6 can't imagine all of the levels you have...and then occipital neuralgia on top of it.  Which after my fusion I found was causing a large part of my pain and still is. Just think of all of us with you as you go through these appts and know that your pain is real whether they understand that or not.  I am fighting to change pain drs right now to have one closer but he wont see me without jumping through lots of hoops which led me to crying on the phone with his assistant who is helping me get into him, she apologized and I told her this is a battle I have been fighting for 8 years but I am not giving up and will get into him I just wish it was easier.  I have realized though that drs have to earn my respect and prove that they are worthy of being my dr this dr is worth that so I will keep bugging them.  Hang in there and never give up on yourself or doubt your pain it is more real than any dr can understand!!!

[selmaS]

  I agree with u 100% but only wish u had a nice Dr to deal with instead of this  codfish.....ugh

The tests r needed, so keep us posted on what u find out, better still what this Dr learns from u and ur tests : )

[irislita]

Selma as arrogant as it sounds.i know that the instability is my issue number one.but how could he figure out not wanting to know the cause of my symptoms...my instability is c1-c5!!!! Anyhow i go into hospital...get sleep study,conduction test,csf flow test and other stuff...if i like him or not...thats tests that are necessary.i have to try that his arguements dont touch me and just box myself thru it.so thankful i have u all

[selmaS]

  Hi Iris, I am so sorry u had this experience...Drs can be such ignorant idiots at times...sigh....

The instability can be all ur issues, and along with that can come other aches and pains....

I just wish u had a Dr that had the sensibility of a human being instead of a stone....Please keep us posted

[irislita]

P.s. i have to add other weired things he said.he asked me where i work.i said i cant work as i am too bad.and he said no i want to know if the company u work for is catalan(catalunya is a part of spain that want to get independent from spain.i said no its an amercian firm and he said aha like i knew it was not catalan u just dont fit in here.and he added in panic.but u do have insurance here....mmmhhh obviously as i am with u guy.and why do u also have private inssurance...wtf is he asking me about and made me feel as if i do inssurance betrail.he asked if chiari is running in my family.i said i dont know of any case.i told my twin doesnt have it...do u have her mri he asked.i said no she lives in germany.and he seemed looking at me like why dont u have it.sorry i have a whole bunch of my own fotos so i dont run around with other pics.anyhow he didnt even care about my own flexion xrays...oh i am so angry

[irislita]

Thank u cash...i just cry as i think u understand exactly how i feel and that helps.i called my twin sister who is still in hospital crying and she told me she completly understands me too.i reached my ver limit...facing one lost year and i really dont trust doctors anymore.i couldnt even sit without pain and vertigo to wait to see this man and then this.thank u cash for ur words.

[cash242]

Reading your post broke my heart for you. Please do not give up on yourself, this specialist sounds so mean any one if us would have cried. I also had cervical instability and neuralgia and it hurts so bad! I am sorry your bf didnt give more supportive as I know I take my husband to all my appts for support as I am scared of how I will be treated. Your symptoms are real and very painful and we are here for you! You should never be treated that way no matter what! Hang in there and am here for you!