First Neurologist appointment done.. and not going back there!

General
1

First let me say I went in with an open mind and really hoping I would get lucky and find a good one on my first try... I definitely did not get that.

The office staff was rude to begin with when I first got there. But still, I was hoping the doctor would be better.

He literally came in, asked a few questions, I got to ask one... i asked if he sees chiari patients often and he says yes. Literally the man would not stop talking, and even when he was asking me questions he wouldn't let me finish answering. As I am telling him what medications I am on, I had to repeat them twice because he would interrupt with a comment. And not an informative comment. I didn't even get through the list of migraine meds I have tried before he cut me off and started talking about something else.

He did not let me ask any questions either. The whole appointment was maybe 20 minutes. He felt my neck felt the bulging, and he says yea that hurts doesn't it, well this is the doctor and I will probably say and do things that you don't like and that hurt. And then went on to the lecturing. He says I need to quit smoking, that being on birth control and smoking I am just asking for a stroke. He said that about 10 times. No really.. about 10 times even in the middle of talking about something else, he would say quit smoking or I will be seeing you for a stroke instead. Even as I am walking out, you don't want a stroke do you? OMG

Then he said he will eventually refer me to a neurosurgeon because from the sounds and looks of it surgery is my best option. And then he set me up for trigger point injections on Thursday, and is setting up a sleep study, and an appointment with a bio feedback doctor?!? And another doctor that will help my insomnia for pyscho something logic specialist. However he says my insomnia is being caused by the chiari and my neck pain and from what he could feel he says he would think I toss and turn a lot and probably don't get good sleep. Oh and he wants me off xanax and or kolonopin, no benzo's at all, and if I have anxiety then the new medicine he gives me will help me and help me sleep but no benzo's. Which he gave me a script for doxipin.

Let me say I have been on xanax for 4 years, I do NOT take it during the day, I only take it at night. I do have anxiety and have for as long as I can remember. my doctor switched me to kolonpin last month because i have been on the same dose of xanax for over a year (1MG) and she does not like to prescribe anything higher then that. So I am trying the kolonopin instead. I do not take both and I do not abuse them and never have... i do not even take them during the day because I would prefer my anxiety of being half out of it.

So I sat and listened and then at the counter they couldn't even get my MRI open.. so he hadn't even looked at my MRI yet!!! But yet he says I will need surgery and made it sound like he had already reviewed it! Then when the girl couldnt open the file for him to look at the MRI he says well you are in IT, why don't you try to open it for her. So he had me sit at the computer and try to open the file for them which it wouldn't open and one of the bitchy girls then asked me to go back to the other side of the counter after he walked off. which i get because of the HIPPA stuff lol it was funny. I am in IT and I am in medical IT so I could not believe he had me come across and try to open in on her computer. He even made the comment "since we don't have an IT department maybe she could help us when she is here" Are you serious?!? I couldn't tell if this guy was real or not!

So I called my primary doctors office that set up the appointment and left them messages because he was already trying to call her office! Well one girl was calling my doctor and one was calling the hospital I had the MRI done at to ask them to print the images since they couldn't get the file open!

I let my doctors office know (called the nurse line and the referral line and let a message) that I want a second opinion and probably won't go back there. I am sure he was probably also leaving his opinion on taking me off benzo's too. I also said that I didn't feel we would be a good match, he wouldn't listen, I felt rushed, and it felt like he was a sales person!

I understand the sleep study because chiari can cause sleep apnea.. however I also find it ironic that they also are a part of a sleep center place.

Needless to say, I plan to call this afternoon and cancel the injections and tell them I am going to get a second opinion before spending all that money. No offense but if I need surgery I am not going to waste money on trigger point injections that are probably nice and expensive. i will live with the pain before doing that.

So I am a little frustrated already and it is only the beginning. At least I wasn't that late for work. I am hoping the neurosurgeon I see Friday is better and if I need a neurologist too maybe they can suggest one for me. I don't want to keep missing work and getting no where. I already miss enough work having two kids with special needs. Between school IEP's, counseling, tutoring, and their specialist, their testing, I don't want to play catch a neurologist lol Yes, I know that is probably going to happen any way. I am just a little bitchy right now :)

2

Definitely get a second opinion. That guy sounds awful.

What's really sad is that he sounds better than the two NL I saw. Both told me chiari has no symptoms and that I had chronic fatigue syndrome.

3

Oh yea he definitely did not dismiss it at all which is good. But I am not going to keep seeing a doctor that won't give me a chance to speak to ask questions or even answer his questions!

Hope you found one! Hopefully the neurosurgeon I see is better and can find me a neurologist if I need one for long term stuff

Anglyn said:

Definitely get a second opinion. That guy sounds awful.

What's really sad is that he sounds better than the two NL I saw. Both told me chiari has no symptoms and that I had chronic fatigue syndrome.

4

wow, I wouldn't go back there either. Hoping the NS on Fri is a thousand times better.

5

Beeba, that is exactly what I was thinking about the sleep study. I don't snore, (my husband is a night owl and I am always in bed before him) and yes I wake up a lot but I have for years. I have anxiety, my mind races at night which is I am on benzo's because even ambien couldnt keep me to sleep and then with ambien i felt awful in the morning and couldn't sleep at all when I didn't take them!

I was more flabbergasted that he hadn't even seen the MRI yet and made it sound like he had. And didn't even want an MRI of my entire spine or the cine flow one. It was just injections and off benzo's, quit smoking, and see this PPI doctor for biofeedback therapy to help with insomnia! I wonder if they get a kick back off referring patients lol

The lady did call me to give me the names and numbers of the 2 doctors he wanted me to see.. both do the PPI therapy thing.. and I told her I wanted to put that on hold and the injections canceled until I got a second opinion.

I have quit smoking for 2 years.. i picked it up again during my divorce. but I have to want to quit to quit, and right now I have too much going on with my kids alone to even think about it.

And I do know how doctors can be. At one point when I had my second son, we were up to 18 specialist at Riley between both kids and 8 therapists at our house each week. With my first son I got walked all over at appointments until I learned that my time is important and so are my questions and concerns. I ordered copies of their medical records every 3 to 6 months so I had them all myself and I was prepared for every visit with my list. I put a stop to the guinea pig routine at my oldest son's appointments too. He has a really rare genetic disorder and it was just getting to be too much having 6 or 7 students sit in on his appointments.

This office just made me so uncomfortable I couldn't say anything! But they did call to give me the numbers for the PPI therapy stuff and sleep study info and I told them I was getting a second opinion for doing any of that.

Thanks for the replies!



Beeba said:

Well I did say go in with an open mind and I was hopeful for you but I would not do another thing based on this guy!! You already have the ns appointment set up so just focus on that. As for a bunch of tests that confirm you have difficulty sleeping?? Why??? You know you do. If after you still have a problem then it might be warranted but to just throw money out the window?? Now that is crazy!! Funny how drs want you to quit smoking to extend your life... Why would I really want to do that in this current state??? If you feel better obviously you should quit - but hell there are times I have raced the train across the tracks, I haven't gotten a mammo and yes I have 5 orders on the fridge. Ask them if they have ever had the flu - I do t know a person alive who doesn't pray for death - yet they will get better!! People are funny!!! May be time for a daytime Xanax after that. I am afraid in the process you need to get very thick skin and really dig deep in yourself and acknowledge what you are made of. They can only beat you down if you allow them to. There are assholes in all walks of life yet you can blow them off - but a dr says it and we give it validity. Obviously you are an extremely strong person who deals with a great deal - don't let this guy get you down!! On to the next.... Can't wait to hear how much better the next appointment goes. Just as a precaution - call the radiology place and tell them you need your actual films for next appointment. And if all else fails at least you know you can go work at the nl's office. Lolololo
6

I understand sleep apnea can go along with Chiari, not arguing that at all. But I don't think that is the first test I need done in my opinion. Or better yet, from a doctor that wouldn't listen or take any time with me. I am sure a sleep study might be needed eventually, but again, when the right doctor orders it.

Thank you for the information though, it is more then I thought it would be



Abby said:

Chiari malformation and sleep related breathing disorders.

Source

Service de Neurologie, Hôpital Gui-de-Chauliac, INSERM U888 Montpellier, France.

Abstract

OBJECTIVE:

To estimate the frequency, mechanisms and predictive factors of sleep apnoea syndrome (SAS) in a large group of children and adults with type I (CMI) and II (CMII) Chiari malformation (CM).

BACKGROUND:

The anatomical and functional integrity of both respiratory circuits and lower cranial nerves controlling the upper airway is necessary for breathing control during sleep. These latter structures may be altered in CM, and a few investigations have reported CM related sleep disordered breathing.

METHODS:

Forty-six consecutive unrelated patients with CM (40 CMI, six CMII), of which 20 were children (eight males) and 26 were adults (12 males), underwent physical, neurological and oto-rhino-laryngoscopic examination, MRI and polysomnography.

RESULTS:

SAS was present in 31 (67.4%) of the patients with CM (70% of CMI, 50% of CMII, including mainly children). Sixty per cent of children with CM exhibited SAS, including 35% with obstructive (OSAS) and 25% with central (CSAS) sleep apnoea syndrome. SAS was observed in 73% of CM adults (57.7% OSAS, 15.4% CSAS). Severe SAS was found in 23% of CM adults. Multiple regression analysis revealed that age, type II Chiari and vocal cord paralysis predicted the central apnoea index.

CONCLUSION:

SAS is highly prevalent in all age groups of patients suffering from CM. CSAS, a rare condition in the general population, was common among the patients with CM in our study. Sleep disordered breathing associated with CM may explain the high frequency of respiratory failures observed during curative surgery of CM. Our results suggest that SAS should be systematically screened for in patients with CM, especially before surgery.

7

Wow, I think we might be going to the same doctor! I got a 40 minute lecture on how I needed to be happier, control my stress levels and excersize more! I also have 3 kids with special needs so I feel your pain. Between the my appointments and their appointments it doesn't leave much time in the day! This NL also wants me to get off the Oxycodone (which I only take at night) and the muscle relaxers. What?! That is the ONLY thing that gives me any relief. And then he dismissed me! Told me that there was nothing more that he could do for me. He actually said that if I had come to him before I had the decompression surgery that he could have "helped" me. And that I should call him if I needed to come back in. I don't think I'll be doing that any time soon. Some of these doctors are UNBELIEVABLE! I hope the NS can give you some straight answers!