Hi everyone! I was wondering if anyone on here has seen a pain management doctor. My primary doctor referred me to one a few weeks ago and I hadn’t heard anything from them so I decided to call today. When I called I was informed that doctor doesn’t deal with trigeminal neuralgia. I called another pain management doctor just to see if they take patients with tn and the receptionist had never heard of it before. She said she thinks the doctor does take patients with it so now I’m just waiting. I was just wondering if anyone had a positive experience with a pain management doctor, or what did the doctor even do for you? Thanks!
Hi kayli,
i am hoping to be referred to a pain clinic this fall and will keep you all posted as to how that goes. all the best. i wish you many pain free days ahead.
My experience with a pain specialist was a nightmare. They knew less about nerve pain than the neurologist who referred me there.
I'd look for one that is in some way related to treating nerve pain.
I "graduated" from a headache clinic to a pain clinic when I had tried every medicine under the sun to control my ATN. I am now a consistent pain patient that receives a variety of different procedures to ease the pain. Nothing has really worked so far. I am in a battle with the insurance company to get approval for a peripheral nerve stimulator. The pain clinic has been my lifeline though. Here I feel safe, believed and cared for. They don't bat an eye when I request a Percocet refill. I highly suggest finding the right pain doctor. Like Neurologists, you have to go through a ton to find the right one. Good luck!
I saw a pain management doctor about a month after my diagnosis last year (my first neurologist referred me). I loved him as he pointed me in the direction of having an MVD (had that surgery last Oct and remain pain and med free!). He said there were a ton of things he could do to help me manage my pain and that he has treated many patients with TN. But he said I was too young to go that route at 45-years-old. He knew all about TN and the treatments, surgeries, MVD, etc. . . more than my original neurologist. He literally told me "run to an MVD" and then referred me to a respected neurosurgeon here in Indy. I ended up setting a total of 3 neurosurgeons and then ultimately choose to travel to have Dr. Casey preform my surgery. I have a ton of respect for that pain doctor though because he educated me a ton and pointed me to MY solution.
I’m 21 and had mvd back in December. I was pain free for about 2 1/2 months and then the pain came back. No one knows what to do anymore so they said I should see a pain management doctor. I just didnt know what to expect when I finally see one.
My best advice is to go in with as much knowledge as you can. I too had an MVD. I got some relief from my ATN pain, but it is still very severe. When I visit the pain doc I always go in with questions about new treatment possibilities post MVD and any medications that you have seen that have worked for others with related problems. This TN site is a goldmine of information. I have gotten so many suggestions that I have given to my doctor. I have tried a lot of things with them. Constantly research your condition. I really feel like these days you need to take your healthcare into your own hands.
kayli said:
I'm 21 and had mvd back in December. I was pain free for about 2 1/2 months and then the pain came back. No one knows what to do anymore so they said I should see a pain management doctor. I just didnt know what to expect when I finally see one.
Hi
I have seen a couple
The last was great, and performed PRFN on both. Sides for me (bilateral TN)
I think that the education of the medical professionals differs greatly.
Note the pain specialist I went to is in Australia, I’m not sure if it’s the case elsewhere but the ones here are aesthetics and they branch out from there.
Hope you get some relief
Simon
I hate them. I hate all of them! At least they are used to people with anger so you can just let go of your internal emotional pain because it’s their job to deal with you. I had a positive time when I went to 12 free therapy sessions, but they are used to reading peoples pain by looking at their chart and immediate hesitation. As far as face pain goes, since we hide emotion every second, they don’t get a feel for our desperation and just don’t share any information from their glorious university degree.
Try it out but don’t give into their “come back in two months” bs, take charge with a little knowledge and get everything you can in as few visits as possible. They are after all, employees that are EMPLOYED to help the public. Don’t put them on a pedestal and end up years down the line wondering if they care about you because they honestly have 20 minutes to look at you and they do not think of you again. You are a face less customer so take care of yourself even though it’s hard with this giant distraction.
Besides that little rant, yea it’s good to go. Unfortunately they do know what’s best and as long as you write down something to say them prior so you don’t forget, it might be very positive. Good luck with your pain and stop holding it in! Retaliate !
I was sent to one and he was very nice. Kept thinking I suffered from headaches. It was hard trying to explain the kind of pain I now have after an MVD. I have Anesthesia Dolorosa. The trigeminal nerve is severly damaged. Nothing can be done for it. So I suffer on. He really wasn't much help. I just wasted my money.
The pain management doctors are great for a lot of pain problems except neurological pain. The one I went to said "That's a tough one." when I told him I had TN. And couldn't do anything for me but at least he was honest with me. He knew that opioids were not going to help me and that meditation was not going to make this kind or pain "manageable" or that group therapy that people could exchange ideas on what helped them might help others. This kind of pain isn't just on another planet. It's in another universe. . The pain doctor for TN is the neurosurgeon. They are the best "pain management docs" for TN because they understand it and have options to actually help you.
I see a pain managment doctor. At this point he is the doctor I see the most for managing my pain. It took me a few tries before I found my current PM doctor. I would advise going with an open mind, be prepared, and have a list of questions to ask. Not just do you have any other tn patient or have treated others with tn in the past, but other questions like; why did you decide to go into this field of medicine, what procedures do you offer and other services, how can I reach you after hours if I’m having a pain crisis, how long have you been in PM, how will I be able to communicate with you if I’m unable to speak, how long typically do appointments last, will I be seeing you or someone else for each appointment, if it’s someone else who will that be, what are your thoughts on opioids or long term opioid treatment, what is your goal with my treatment, and any other question/s you think to ask to help you gauge if this doctor would be a good fit for you and your treatment.There is also a list of very good questions to ask under the face pain info tab (top right on your screen).
Also be honest with them. For example I told my PM doctor on the very first appointment that I knew I was a hard case as what I have is not very fixable or curable. It is important to build a good patient doctor relationship as well. This takes time and won’t be done in one or two appointments.
There are some things to look out for and be leery of. Very full waiting rooms (where every seat is taken and there are a bunch of people standing around), if they only take cash, are located in a strip mall, offer to do procedures they are not qualified to preform (I had one that wanted to do an MVD on me and had no credidentals for neurology or neuro surgery. I ran away so fast from that one), and so on.
All of the PM doctors I have seen will not take walks ins, patients must be refered by their GP or other doctor/s the patient is currently seeing, all medical files on the patient must be forwarded to the PM doctors for review pior to first appointment, and all patients must be approved by the PM doctor to be accepted as a patient. Yeah that’s steep, but this keeps drug seekers out of their pratice, plus this helps you know it is not a pill mill.
To answer the original posters question on what my PM doctor does for me, well my PM doc has a tough case with me to be short. I’m not a candidate for surgery or and injectable treatment, so that puts me on medications only to manage my TN. So basically he manages my medications and makes adjustments when needed. That might sound easy but it’s not. It’s frustrating for both of us. A couple of months ago I was diagnosed with another chronic condition that of course involves pain. I have yet to discuss about my options for that. So I’ll see what he is going to suggest at my next appointment for that.
I hope this helped answer some questions you may of had. Have a great day that is pain free everyone and take care:)