physician delays Increase grief

[phoenix63]

Has anyone else had trouble with getting into the neurosurgeons and neurologists, only to be told they don't treat chiari? Or how about doctors and staff that don't communicate to you and or just vague about scheduling your surgery? Well welcome to my world!The first neurosurgeon I went to had to look at my mris online and then I was told yes he wants to see you next week. I get in there and he said Oh I won't treat you until you get your tremors treated.
what a joke, Oh before this I waited 2 months to get into a ns up at the u of u, then when I got in there it wasn't the doctor that I was suppose to see, well this guy barely touched me He was in the room 5 minutes we had been waiting 1 1/2 hours, left the room and he didn't come back for another hour.When he came back in the room , he said basically I can't find anything to treat but not sayingtheir is nothing wrong, but I can send you to the pain clinic, by these comments both my mom and I were really upset, and I started crying, I had had it, we left right then.This neurosurgeon, now I waited 1 1/2 months to get into him, and then when I got in to see him he said well it looks like you've had all the tests and no all the information, lets get you into surgery, I'll have my girls get in touch with you. I said okay and that was that I thought. I never heard from "the girls" so I called them 2 1/2 weeks later. The office manager told me she was trying to get preauth for my surgery that was set tentatively for aug 27th.she would let me know. 2 weeks later still hadn't heard anything, so I called back, she said oh we don't need to worry about the preauth he wants you to see this other neurologist, no other explanation, I asked her why this doc hadn't said something when I saw him in the office? I don't know but he wants you to see him before he operates. I will spare you some of the drama,I did get an appt with him,a few days ago, he had no idea what he was seeing me for, nor did I. akward...
I went to the next desk and asked to speak with my ns. I left another message for him to call me.that never happened,I asked if they need any blood tests done before my surgery in a few days, she said oh we're not doing surgery on the 27th,  I said when is he planning on doing this. She said he's not at this time, I flew off the handle and again the tears and my mouth began to flow again.Yesterday I called back saying he didn't call me, she said he will before the end of the day, he didn't. Again today I have left a message, I need some answers as to why she had told me all these things, and she told me he has you scheduled for sept 21, I was not happy, but what's to say she won't chaNGE that date again too. I am getting worse every day, I didn't think I could make it as long as I have. I am bedridden, I use a walker to get around, etc etc. The doctor never calls me, or communicates with me about anything. For me to go to another doc right now is going to add 2-3 months waiting period.They have over a barrel as my mom would say!What would you do? what can I do?sept 21 is 1 month away.My  latest symptoms are apnea,facial and body numbness.gaggin, choking.etc, etc. I don't know where to turn or if their is anything, at all I can do to hurry this process up ? Should I start at the beginning again and get a new doc? I don't feel I have the time. anyone know I should do?
suzanne  

[phoenix63]

I am going to attempt this again, I typed forever telling you what happenend last nite and it lost it all, how maddening, Yesterday I called my patient advocate lady for my insurance co,  well she got results alright. dr.N called me last night he wasn't too happy that I called her, too bad though. He asked me how come I called her, I said because I was getting nowhere with your office, furious was more like it. But I told him the communication between him his staff and giving it to the patient was just not up to par and I had referred patients to him too, he said he appreciated that, but I think you are right it;s not going to get better only worse. So I think I will let the patient advocate find me another ns. thank you for your advice, this is a great forumn for people  like us and you are a great advocate yourself, much love and appreciation,
Suzanne

[ChiariWolf]

Suzanne, so sorry! Definately can empathize with your situation and even the feelings of "but I don't want to do anything that will delay potential relief". But Suzanne, in the realm of reality, if this guy won't give you a glimpse of humanity now before the surgery. What makes you think he will in the event that something does go wrong? We don't like to think that way, but really it's irresponsible not to consider if our choice of NSs would care for us in the rare occ that they make a mistake. If the guy/gal won't communicate now they will not later touch you once their dollar bill is made. Please, I know it's hard belive me many here on this forum do know how hard it would be but please consider if this really is the right choice for you. Perhaps if your comfortable sharing where you are located in a general sense someone here could help steer you in the right direction??? Your choice all the way obviously just please consider the long term before this Dr makes one more buck off of you. IMO a DR who doesn't see his/her patient as a human being first and a patient second isn't a Dr at all.

[phoenix63]

thank you for your advice, I think your probably right but it delays my surgery even longer I may have permanent damage if I wait much longer, I am scared to death.. but you are probably right, and thank you for your advice.
lol'suzanne

[alexiwildchild]

WOW! i'm so sorry to hear about this----FIRST thing that comes to my mind--is you should probably find another doctor.  there is no way in *heck* i would allow this guy to operate on me for any reason (just my opinion).  I know it's taken forever to get into this guy--but it sounds like he is not the best doctor for what you're dealing with.  he sounds like his bedside manner is awful...that right there should say alot--or it does for me.

i think the majority of us, including myself, have had a long road of these ridiculous "doctors" that seem to be horrible with this condition (or in my case, diagnosing this condition).  I am pursuing TCI and Dr. Oro for this reason.  I do hope you get the relief you need with this and I would research another doctor if possible--just my opinion :)