NeuroTalk Support Groups - Update on frustrating pain doc

First off..when I refer to Jeff, that's my boyfriend. He was working on Tuesday so his mom came with me to be my advocate (she has a lot of experience with this since Jeff's dad passed away when he was in high school and spent a lot of time in hospitals). I know I need to learn to be my own advocate but it's so hard when you have reached your limit in pain lebel.

So now for my adventures yesterday. I think I told you all that the bloodwork was normal because my family doc called the day after drawing the blood to tell me. So I don't have an infection according to the pain doc. This is good news but when I asked if it would show a bone infection he wouldn't answer. He said (direct quote), "The ONLY complication that you can get from a lumbar sympathetic block is an indectio. I teach this stuff so I know." Forgetting the fact that I have done lots of research on lumbar sympathetic blocks on the internet, he himself and the paperwork that I have to sign before each block list several other possible things that can go wrong like bone infection, chemical menengitis, and CFS (spinal fluid) leak. So that bold faced lie really upset me.

We talked a lot about what to do for the pain NOW and he just said there was nothing he could do for me. Jeff's mom had his office pamphlet in her hands and quoted from it that they are the best in Illinois at "diagnosing and treating pain." The doc dd not like that one bit and he just looked at her and said that this was beyond his expertise. BTW...my heart rate at the office there was 150. They used a machine to get that. After the doc was done answering (or not answering questions) he had a nurse take my pulse manually. First she yelled at me for moving my arm too much (the doc was in the room at this time). Now...my hands have been shaking as a part of whatever it is I have so it's not like I had any control...but I think her real problem was that she was trying to take my pulse with her THUMB! She finally said my pulse was 40. You can probably imagine the look on the doc's face when she said that. He rolled the stool over and took it himself...it was 132. How can you run a place like this with SO MANY incompetent nurses? Seriously...

So at this point Jeff's mom was adament that he needed to do something for me NOW because I couldn't wait until the 23rd in this sort of pain. The crying and emotional breakdowns and inability to even get off the couch without assistance. So they moved up my neurologist appointment to Friday and changed it to the neurologist that my family doc recommended. They told me to call my insurance to make sure that this new neuirologist was covered. When I called...not only is a preferred doc...but he is in their premium class of preferred docs. If I was using work comp I would be worried about rhat...but since it's my regular insurance I find that information very comforting. So after this Jeff's mom and I left. Took a wheelchair out because I am SO unsteady on my feet and Jeff's mom has severe pain in her knees so I didn't want to cause her any additional pain either if I fel with too much force.

So then we went to the ER. Not the ER at the hospital we were already at, but back to the one I saw a week and a half ago. I figured that they aready have all my information about the back and neck pain that they would be the best move. She drove me there but then has to leave to pick up her grandson for lunch and then would pick me up later. I was okay for this because talking to ER docs always seems easier to me. I actually had two bags when the day started...my little one with my wallet, phone, and questions for the doc. The other was in case I ended up having to go to the ER. So I made sure to take that one with me as well and took a wheelchair in. I had already made a list of my current medications, when they were last taken, and mu recently stopped medications and why they were stopped (not effective or just finished).

I had a very long talk with the ER doc about my situation and the pain level I was in. He told me that pain docs generally frown upon their patients using the ER...but that in my case I was right to do so. I told him used to see Dr. Magee who still works at the hosptal but who no longer works in the pain clinic. The ER doc said that's left a large hole in the care of a lot of patients. I showed him the business card for the Illinois Pain Institute and apparently they are seeing a lot of patients from these guys since Magee left who are not getting the care they need. So it's not just me apparently. So the ER doc asked what I wanted from him today. I told him that I had 3 serious concerns about what might be causing the pain based on what i had read on the internet. I went through each and he said he didn't think any of them were the case, but he also told me why and what he would see if I DID have any of those things as he didn't see any of it present. So now I have those things off my mind.

Then I told him that what I really need is to get some pain relief to at least get me through until Friday. Since I would have a ride home they gave me an IV and 2 seperated injections of pain meds. Now...I brought along a photo album with the pictures from my parents vow renewal in Disney (including the ones they took in the Magic Kingdom with all of is in out classic Mickey shirts). It was my way of being there with my family and Jeff even if they weren't physically there. I guess that's sort of pathetic...but it did help because the pain really was intense. The IV meds didn't help with the pain but they sure did make me sleepy and that was distacting too. If I laid on my side then it was a little better than laying on my back...though that's always been the case. Then the doc presribed a strong dose of Norco to get me through Friday. He said take 2 if I need to. So Jeff's mom came back with Daniel (Jeff's nephew) and they took me home and dropped off prescriptions at Walgreens and then Jeff picked them up on the way home from work.

But the best thing I got out of the ER doc was his recommendation that I:

1. Never see my current pain doc again.
2. Get a referral from the neurologist for a pain doc that HE works well with. That was I have a "team" working to help me instead of just random people who are not on the same page.
3. He said he was glad that my family doc got me back on the pain meds that acrually help my ankle but that I need to understand that my family doc is not trained or equipped in any way to really help me with my pain condition.

I really felt like this guy cared and was giving me some good solid advice.

Also...Jeff's mom said that she was going to do some research to see if there was any way to maybe get me into the Mayo clinic because then (again) there would be that "team" treating me. And since my mom doesn't work it wouldn't be hard to get someone to stay with me there to get me around.. Again...it feels so nice to know people really care and want me to get the proper care and treatment so I can get back to being my old happy self.

So I am heavily drugged up right now and I don't even know if what I wrote made any sort of sense. But even though the drugs don't really help with the pain, they DO keep my out of it and help me rest. I probably shouldn't be typing but I wanted to let you all know what happened. I really feel like I am on the "right" path now.

Thanks so much for yout thought, prayers, support, and good vibes! They mean so much to me.