I just got home from the pain clinic. I had an appointment with the pain specialists assistant.
When I got in there, she came in and asked if I knew what we were supposed to talk about, saying she didn't have any notes from the pain specialist.
Then she started telling me I need to get off oxycontin, saying it doesn't help for nerve pain and I need to stop taking it. I asked her what was going to take it's place and she said nothing. She said I need to stop seeing the neurologist who's prescribing the oxycontin.
Then she said I need to see a counselor in addition to the psychologist I'm seeing through the same clinic, and that I need to read a book about living with pain....that was her whole idea of helping....lecture me about meds, then tell me to replace them with reading and talking to a counselor.
So what do I have to do to see someone who specializes in nerve pain and she said that's them, the pain clinic where I was.
Then she said well it doesn't sound like you want to hear about the help I'm offering and walked out of the room all agitated. No follow up visit, nothing, I ended up just leaving.
Wow, I would consider filing a complaint too. That's just crazy. first she tells you she has no notes, so she doesn't know about your situation and then proceeds to tell you you need counseling!
Shindig, Completely unacceptable! Grrrr, this really frustrates me!
Whoever referred you to this supposed pain clinic needs to be advised…
First so you can now move on and be referred to people who will actually try to help you and second, so they don’t refer other patients there!!
if you’re up to it, I would call this pain clinic and speak to the manager/ owner and explain your situation and the treatment or non-treatment you’ve had there…the money you’ve spent the run around, disorganization etc
I’m so sorry…where do you stand with your Neurologist? I really feel that a good Neuro is one who should be working with you as well as supporting you.
Thinking of you…Mimi
Hey Mimi, I see the neurologist every 3 months. He has been the most understanding, but he said he doesn't have any more ideas to try. He mentioned gamma knife a few times. He mentioned the best guy in the region for facial neuropathy is down in Portland OR, next time I visit I'll beg for a referral and drive down there.
The neurologist is the best I've found despite not knowing what to do about atypical pain. He has the most experience of any I've found. He is a professor of neurology at the university. He said a while back he would continue to fill my prescriptions as long as I need.
TL from this site gave me the name of the guy who did her PNS unit, so I'm going to try to get in with him.
The best facial pain specialist I have seen is Dr Brett Stacey, at Oregon Health and Science University, here in Portland. Many doctors will recommend the head of the neurosurgery department, but he does not on a whole treat patients well. My neurosurgeon is Dr Raslan. Though he has only been in practice for 3 years I would highly recommend him. He is also at OHSU.
Shindig said:
Hey Mimi, I see the neurologist every 3 months. He has been the most understanding, but he said he doesn't have any more ideas to try. He mentioned gamma knife a few times. He mentioned the best guy in the region for facial neuropathy is down in Portland OR, next time I visit I'll beg for a referral and drive down there.
The neurologist is the best I've found despite not knowing what to do about atypical pain. He has the most experience of any I've found. He is a professor of neurology at the university. He said a while back he would continue to fill my prescriptions as long as I need.
TL from this site gave me the name of the guy who did her PNS unit, so I'm going to try to get in with him.
Mine has too…and similarly my Neuro, GP and my Neurosurgeon are out of ideas in a sense…I see my Neuro next week, I think he has one more med up his sleeve…otherwise surgeon is adamant I do no surgical procedures, as he feels for my specific case it could worsen not better my situation.
I’m losing my Neuro ( he’s closing his practice, retiring) so we’ll see if the new Neuro in Aug has anything new to add…
In the meantime I continue researching …
Good luck my friend,
Is your neuro the only one in the practice? I worry about mine retiring, he's a professor and only works a few days a week. He said he'll always write my prescriptions if I need, which was a relief to know you have someone you can go to. The other neurologists in his practice are older, but in the past when my neuro was out of town they wrote my prescriptions for me.
A big part of the problem is how do you explain to people who haven't seen you without meds, what it's like without meds? You see a new doctor while pumped up on meds and they don't see the magnitude of the problem and what you've been through....especially if you're young.
Oh my goodness, this is my biggest fear right now. I have finally got an appt with a face pain specialist in mid-May but I'm in a remission right now. I find that I can't even properly describe my symptoms while I'm doing good. I'm hoping I will be in remission till fall, which is how it's been the past 2 yrs but I really don't know how to start with the doctor!
Jessica
Shindig said:
Is your neuro the only one in the practice? I worry about mine retiring, he's a professor and only works a few days a week. He said he'll always write my prescriptions if I need, which was a relief to know you have someone you can go to. The other neurologists in his practice are older, but in the past when my neuro was out of town they wrote my prescriptions for me.
A big part of the problem is how do you explain to people who haven't seen you without meds, what it's like without meds? You see a new doctor while pumped up on meds and they don't see the magnitude of the problem and what you've been through....especially if you're young.
I'm so sorry you had to suffer through that whole mess. How can someone come so unprepared and then tell you what to do as if they have an understanding of your situation. I hope everything goes well for you and I agree with everyone else, report them to your doc and the head of that clinic