Bad neurologist appointment - to fire or not to fire?

So, I left my last neurologist earlier this year for reasons that I won't get into. I realize now that I should have stayed with him. Started seeing a new neurologist in late March. Ever since I started seeing him I've experienced more pain, more frustration, more dismissiveness of my Chiari, and brand new depression - I've never had depression before! I should have known after my 2nd visit when they started making me see his Physician Assistant instead of him, and the Physician Assistant said "well, I don't think there's anything else we can do for you" that there were going to be problems. I think my final straw was tonight.

This year I struggled with an extreme adverse reaction to Botox injections that took 3 months to heal (severe neck pain), quit Cymbalta cold turkey that left me horrendously sick for a month (my bad; I didn't know, so I accept full responsibility for this one!), a minor car accident, and then a month ago the neurologist administered an occipital nerve block. Unfortunately, I ended up having an extreme adverse reaction to that as well. Same thing as the Botox - severe neck pain. I feel like lightning struck me twice. The neck pain is unbearable, it's like a 8.5 or 9 on a scale of 1-10. It's writhing in agony pain. Can't lay down and can't sit up, can't sleep yet can't stay awake, can't be active yet can't sit still. I went to Urgent Care once I discovered that this was happening again (it took almost a week for symptoms to present), and then called my doctor's office for a follow up appointment. When I went in for my appointment, the PA said that the neurologist would not give me pain medication because I had "just stopped taking them." WHAT? Yes it's true, I had stopped taking them about 3-4 weeks prior after the pain from the Botox wore off, and I was doing fine. But this was a completely separate incident and I was in horrendous pain. What is WRONG with these doctors? And then making his PA come give me the news? I said fine, I'd go to pain management. I ended up going to my Primary Care Physician a week and a half later who gave me another small prescription, and I was feeling slightly better by this point so I had hoped it would help, so I didn't call Pain Management.

Today, I went back to my neuro (really, the PA). I have been growing severely depressed by this point, as the pain in my neck from the nerve block is just constant. Not as severe as the last time I saw the PA, but constant, and it's wearing me down. I'm honest and tell this to the PA. I cry a little. She feels bad and wishes she could do more, but she knows the neuro's stance (no pain meds). We talk some more and she realizes how depressed I am. She wants to help and offers to talk to the neuro again about pain meds. I say no, I don't want to make him mad. She said no, it's OK and goes and gets him. He barges in and says "I don't want to give you narcotics, I think it's a bad idea" and launches into this tirade and the whole time he's talking and staring at my hands. I can obviously tell he thinks I'm a druggie. I start crying because of this, then he demands to know how many pills I have left from my other doctor. I don't know, I haven't counted them?! He says he doesn't think two doctors should be prescribing pills for me and why don't I just go back to my PCP, blah blah blah. Why don't I just try relaxation techniques? You would feel better if you weren't so depressed. I'm so stunned that I can't even speak at this point. He finally relents and gives me a prescription but I can tell he just thinks I'm trash. When he left the room and the PA was actually writing the prescription, I just bawled like a baby.

I almost don't want to fill this prescription out of spite. But I hurt so badly that I do want to. I watch House MD and Intervention, I'm not stupid. I know Vicodin can be addictive. But if I had a problem I'm pretty sure the 20 pills I was prescribed 10 days ago would be gone by now, yet I still have a handful left because I've been forcing myself to only take one per day. I'm so afraid that this neck pain is here to stay and that my doctors will leave me in pain that so I'm trying to stretch out my medication as long as possible.

This is the same doctor that doesn't really believe I have Chiari, even though I have MRI's saying so. I had one MRI that showed 4mm instead of my other 5 MRI's that show 9-10mm's. He chooses to believe the one 4mm MRI so he thinks I'm "normal." Sigh. Every time I see him I dislike him more, but today was really the final straw. Your doctor shouldn't make you feel like trash.

I want to find a new neurologist but I've already had 3. I'm afraid if I find another one I'm going to have the appearance of "doctor shopping." I adored my first neurologist, but she left to go into teaching/research (so that shouldn't count!). I left neuro #2 as started in my first paragraph. I'm currently on neuro #3. This is in a 4 year timespan. Has anyone else had more than 3 neurologists? Was #4 the winner?

I don't ask for much. I just want to feel better when I leave the doctor, not worse. :(

SparkysChick,

First of all I am so sorry that you are in so much physical and mental distress. I have had bad reactions to many treatments that flaired me up for weeks. It's awful and frustrating. So few doctors will actually take the time to listen and learn about what we go through. I would definitely change doctors. You do not deserve to be treated like that and be dismissed and abused thay way. We have all gone through similiar situations with doctors treating us like we are hypercondriacs or drug seekers or looking for attention. There is nothing wrong with trying to find a doctor that will help you. That is not doctor shopping in the negative sense. You are not seeking drugs you are seeking help, answers and compassion. I would explain the situation breifly to any new doctor you see. You don't need to bad mouth your previous doctors but you can just say that you hardly ever saw the neurologists you saw the PA and it wasn't a good situation. Having a few small prescriptions for pain medicine should not be a red flag. You are in pain you need something to help with the pain. A good doctor will understand. Many of us have never had very good luck with nuerologists. The doctors that know about Chiari are nuerosurgeons. A pain managment doctor or clinic may be able to help you with medicine or a good PCP. I found my PCP by asking at my small family run pharmacy for a list of good doctors. They gave me a list of 3 and the first one I went to was great. She didn't know that much about Chiari but she did some research and she listens and believes me. Finding good doctors is hard. Abby posted a few links to doctors lists under the doctors tab above. On the Chiari Connections International list there is 2 doctors listed in Oregon. and on the World ACM Assoc. List there is 3 listed. I would research them on the sites that grade doctors and then Google their name with Chiari in the search. Sometimes that brings up personal stories of Chiari patients with that doctor. It still may take a few visits to different doctors to find a good one. It's really hard but when you find a good doctor it's amazing. You deserve to be taken seriously and find some help. I will pray for you to find help. ..............Wendy

Sorry you are not doing well. I agree with the others about getting into a NS. My Neurologist does not prescribe and pain meds. If I need something, I now just go through my PCP. The copay is cheaper and she listens to me. The only reason I saw may NL this year was to show him how well I was doing after surgery since is doubted that Chiari could be causing my problems.

My had excrutiating neck and hip pain before surgery and thankfully I can say that it is gone now.

Hang in there! Hugs!

Diana

I saw 52 specialist until I found the "right one". Please don't think you are Dr. shopping. Pain Mgmt is very important to a Chiarian. I have been exactly where you are. Do Not Think You Are Being Weak! Most doctors are not educated about all CM's. You are not alone....We really understand !! I am going to check your area and see who else we have as members that might be able to give you some good referrals.

Praying for you !!!

Tracy Z.

Thanks all. Unfortunately, I do really need a neurologist. My PCP is almost impossible to get in to see (I usually have to wait between 1-2 months for an appointment, no matter how urgent my issue is) and while she's very kind and wants to be helpful, knows next to nothing about Chiari. She's a Family Practice doctor. In hindsight I should have gone with an Internal Medicine doctor but I've been with her for a long time and don't want to switch.

I saw a NS about a month ago, which I posted about. It was a disaster. He was extremely rude and only spent about 5 minutes with me. He said he didn't think surgery would help me, as he only saw reviewed the 1 4mm MRI instead of the 5 10mm MRI's I had before that. The 4mm MRI also did not show my syrinx because it was only a brain MRI, not a neck MRI like the others; when I told him I also had a syrinx he said the other MRI's were basically probably "lying" and I didn't really have one. I gave him the other MRI's to review and he said he would and call me back but he didn't think he'd change his mind from his initial thoughts. It's been 3 1/2 weeks now and he hasn't called me back, so I doubt he will.

Thank you all for your compassion. I have decided that I am taking that vicodin prescription back to the doctor's office and returning it to them. You might disagree with me or think I'm crazy, but I was just treated so poorly that I can't stand it. If there's one thing I have, it's my pride. I would rather suffer in pain than let that ******* treat me like trash. I am going right after work today to return it and inform their office that I am no longer their patient. I will be polite and controlled.

Tracy - 52?! You are one courageous woman! You give me hope. Thank you for your kind words.

You are so very welcome. I have learned so much from the Member's here. The Best lesson I have learned.....Is we are not alone anymore !!!! No matter how bad things get there are friends here that help me even if they have no idea what I am going through at the time. I am truly Blessed !!!