Doctor woes

General General TN & GPN (Old Site)
1

So frustrated at the moment. I've been seeing my neuro for 1.5 years, had an MVD, finally he kicked me off to the pain specialist a couple months ago.

The pain specialist is becoming a nightmare. In 3 visits nothing has changed, I figured he'd be an expert on pain and have all this stuff to try.....

Appointment #1 he says stop drinking coffee and smoking, and scheduled an MRI of my upper neck.

Appointment #2 is a follow up where he schedules a CT and xrays.

Appointment #3 he gives the results of the CT and xrays, says he doesn't know if it could cause my pain, and sends me to see a TMJ specialist and a psychiatrist.

I go to the TMJ guy, he says my pain isn't TMJ related, he gives me muscle relaxers and schedules a followup....to talk about what? I don't think it requires a follow up, if it's a med he thinks I should take I think it's the pain specialist who should be giving it to me.

I go to the psychiatrist, he makes me circle a bunch of numbers and asks if I have anxiety.

I said yeah I feel like I'm going to have a heart attack every time I open the mail and find a bill for $900 for the imagine the pain specialist ordered. No medicine change, nothing.....

So he says I'm severely depressed and wants to give me abilify or some bs, even though I'm only concerned about getting pain fixed, the rest of my life is awesome.

I say hell lets try something instead of cymbalta so he gave me Effexor instead of cymbalta and I'm going to give it a shot.

Then he wants to schedule a follow up for 4 weeks...I'm like wtf is this, I'll return to my pain specialist, but I seriously can't take off work to visit 5 doctors per month for follow ups, for complete BS....

And honestly I don't think I should have to see 5 doctors per month, I should see the pain specialist, maybe an interview with another doctor to rule something out, but dish out the medicine from 1 doctor rather than requiring me to see 5 people to get 5 refills. That's crazy.

I had to book a follow up with these doctors but I'm telling my pain specialist next Monday that he needs to be the point of contact and I'm canceling my follow-ups.

But my good neurologist is out of ideas, so I'm really screwed. If I cancel the pain specialist that my neuro referred me to I dunno what he'll say, he basically sent me to what's supposed to be the expert....

So I had to pay $320 to my neurologist because my insurance declined his bill twice and they were going to send me to collections. I got $900 in bills from the MRI, CT, and Xrays he ordered and he can't even tell if my pain is related to what he took pictures of AND MY NEUROLOGIST SAID NECK DAMAGE WILL NOT CAUSE TN so my pain guy is worthless.

EDIT:: Also I ran out of cymbalta a couple days ago and am still waiting on my medco shipment.

This morning I had to pay $50 for 5 cymbalta 60mg pills today because medco/insurance wouldn't give me a 5 day supply like I've been told they would on here...I'm prescribed 120mg/day but for $50 I could only get 2.5 days worth...so frustrating.

I still get my prescriptions all from my neurologist....the pain people haven't done jack s##t

2

Most pain clinics will not prescribe pain medications until they have ruled out all causes of pain. Depression is not a cause of pain, but it can make pain feel much worse. While I understand going to the shrink seems so off the mark, and comes across often as insulting I understand why they did it.

I am not sure what side of the country you live in, but when it comes to pain management for facial pain, I highly recommend Dr Brett Stacey at Oregon Health and Science University. He has made facial pain his specialty. He also knows how depression plays a part in pain, though he says it is not the cause. He is funny as all get out, and I tell you I have never laughed as hard as I did, at a doctors appointment, than the time I saw him. His research has shown anti-convulsants do not work well for TN pain.

3

I'm in Seattle. My Neurologist said the leading face pain guy is in Oregon, wonder if it's that same person....

4

Hi Shindig, sorry to hear of your continued struggles with a multitude of doctors / specialists and feeling like you’re not getting anywhere…
I’m not familiar with how Pain Clinics work so I can’t advise or comment.
I will say though that I think it’s time YOU took control again…at least you tried this route. If your Neuro can’t recommend anything more than maybe it’s time to research others who may be more specialized in TN or just have more ideas…
I know you’ve been through the gamut of doctors, MVD, meds, research etc already. We have to keep going though and advocate for ourselves.
Trust your gut as you go forward and hope for better days ahead!

I’m currently adjusting meds ( reducing one and adding a new one) with my neurologists guidance…it’s a rough road. I’m trying to find a balance between minimal pain and a less drugged up state ALL with the intention of finding a way to function and have the least pain possible. If it’s not the pain, it’s the high level of drugs or both keeping me as inactive and unable to function.

My doctors /specialists are running out of options, but both agreed to my proposal of reducing the Dilantin and increasing the Keppra. The Tegretol CR remains at 1400mg. It’s been hell, but I need t try something…
Positive thoughts being sent your way, hope you find a new direction…
(( hugs )) Mimi

5

Hi Shindig.

Quite a trek you are on with all those doctors. I am sorry that all you searching has been fruitless thus far. My adult daughter has been on Effexor for many yrs for her anxiety. It is not a pain med! It is used primarily for anxiety and also depression. It is very effective but an absolute bear to wean off of.

I am unfamiliar with pain doctors so I can offer no advice but I do feel frustration for your situation. It be very overwhelming to go to the mail each day. I could offer to find you a bride in Canada; we have great health care. Hope that made you smile. There are so many of us who care and are walking each step with you. I wish I could do more. Hugs my friend

6

Hey, Shindig
Sorry to hear things have not improved for you. I have to agree with Mimi, though. It may be difficult, but I urge you to seek doctors who are specialists in this TN monster, even if it means leaving your area. As you know, I traveled out of state for treatment, and even though my doctor was out of network, he and his staff worked with me and my insurance company to make my fees manageable.
Please let us know how things are going !
Christine

7

Sorry to read about your frustrating experiences. As a former therapist, for whatever it is worth, I want to remind you that you are a normal person having to cope with abnormal pain and crap from all your health care providers. Anybody having chronic pain will be depressed, there is no way around it, and I imagine all of us, if our pain was taken away today and we KNEW it would never come back ever again, WE would be the most happiest , non depressed folks on the entire planet, lol. I agree with Mimi, its time to find another neurologist, or atleast have your existing one consult with another one to brain storm some new directions to take with you. Sounds like because you and your neurologist have invested so much time together you are bonded to them, but there has to be other good ones out there as well. I think we have all been there at some point in our lives where we are so desperate , we are o.k with throwing a lot of money at our problem, only to find out that what we "bought" did nothing, and now our lack of funds is another problem. Hang in there and let us know what your next choices are :)

8

Had a follow up with the pain specialist today who wants me to still see the other doctors and a physician assistant to keep track of stuff that I can go to for meds.

He gave me a prescription and refills to get stuff at the local pharmacy and magically when i got home my meds were here after 9 days after they arrived at the seattle post office.

The effexor has made a huge difference. Much less pain after switching to it from cymbalta.

Specialist said still no idea and no closer to determining what my pain's from, let alone a fix. I told him hashish from the dispensary helps and he said great, he said they can't use it but encourage people to use it if it helps. He said he had an 83 year old woman using pot oil on her neuropathic pain as topical and had a lot of help. I told him about oil I made and rubbed on my face that helped but only for 10 minutes... I stopped drinking a couple months ago, so why not!

9

Hey, that's great! Some good news: your meds were there when you got home and your Effexor is working better than your last medication!!! Now you just have to work on your pain dr. to stop suggesting even more providers like the physican assistant, lol. If your insurance is not so great with high copays, the added financial burden is a legitimate added stressor as well. Only YOU can weigh the pros/cons and figure out what is best for you. Glad to hear some positive news though for sure :)

10

So sorry....This is when it becomes very difficult not to drop the f-bomb all over this page....but let me tell u something. I am or was for many a year a nurse in NY and pain management is THE LAW. Go elsewhere...Call your Congressman. Believe me. That's what they are there for. Peter King Helped me on 2 very controversial levels, went to bat for me, and we won. They love this s##t. It keeps them connected to the people. But back to PM being a law. It is in most states. You can not be denied. Of course there is evaluation and monitoring but THE LAW STATES that no one can say that u are not feeling the pain that u are in. Please be your own advocate. Make calls, demand help. Cymbalta is great for nerve pain as well as depression. You sound like you need more at this time dear. You are entitled. Own it. We are all routing for you. God bless....Joya/eva

11

that's a good point Joya... I just read that somewhere recently too, that pain management is a law and it is unethical to let folks go while they are in pain with out atleast actively doing something to relieve it , Then and there, at that moment!!

12



Shindig said:

I'm in Seattle. My Neurologist said the leading face pain guy is in Oregon, wonder if it's that same person....

Most people when they think of a leading TN doctor in Oregon they are thinking of Dr Kim Burchiel, in neurosurgery, at Oregon Health And Science University. (OHSU) I have as my neurosurgeon, at OHSU, Dr Raslan. I highly recoomend him to anyone considering surgery. Dr Stacey runs the pain management department through the department of anesthesiology. He does a lot more than just nerve blocks, and works with the neurosurgery department as well.

13

I have never seen a pain management department that was run by any department than anesthesiology. At OHSU there pain doctors, neurologists, and neurosurgeons who all work in the facial pain division. It is nice to have the doctors all in house working together to try to find a solution. Never once was I offered nerve blocks. I have always been very limited on the medications I can take, but all the doctors tired their best went the surgery route, and am doing very well. I sense part of the problem for many is they do not have the all the doctors in one place, and they are sent running around.

As for the senator helping, I can not help, but wonder if maybe you missed the point of what was being said. No, they can not do anything to treat the pain, but if one is having trouble getting access to care, a big political muck like Peter King could possibly open some doors.

Cleo said:

I hate to drop an f bomb episode here. but -- there are several different types of pain specialists out there. For example, some are only anesthesiologists who inject nerve blocks. And how many here benefit from nerve block? Many here only wish there was A then and there magical wand treatment for instant relief (like there is for most normal everyday run of the mill pain).They wouldn't call it suicide pain if it was controllable. Yes we all "own" our misery in this and I seriously doubt any congressman can help kill it on any given day.

14

What surgery are you referring to? I had an MVD and it didn't work so they're not really offering it anymore.

saraiderin said:



Shindig said:

I'm in Seattle. My Neurologist said the leading face pain guy is in Oregon, wonder if it's that same person....

Most people when they think of a leading TN doctor in Oregon they are thinking of Dr Kim Burchiel, in neurosurgery, at Oregon Health And Science University. (OHSU) I have as my neurosurgeon, at OHSU, Dr Raslan. I highly recoomend him to anyone considering surgery. Dr Stacey runs the pain management department through the department of anesthesiology. He does a lot more than just nerve blocks, and works with the neurosurgery department as well.

15

I have had 2 MVD, 1 Radio Frequency Rizotomy , and a Internal Neurolysis over five years

Shindig said:

What surgery are you referring to? I had an MVD and it didn't work so they're not really offering it anymore.

saraiderin said:



Shindig said:

I'm in Seattle. My Neurologist said the leading face pain guy is in Oregon, wonder if it's that same person....

Most people when they think of a leading TN doctor in Oregon they are thinking of Dr Kim Burchiel, in neurosurgery, at Oregon Health And Science University. (OHSU) I have as my neurosurgeon, at OHSU, Dr Raslan. I highly recoomend him to anyone considering surgery. Dr Stacey runs the pain management department through the department of anesthesiology. He does a lot more than just nerve blocks, and works with the neurosurgery department as well.

16

you stated you are doing very well now, Saraiderin. Which surgery helped you the most do you think? I take it that nerve blocks don't help much? As you can tell, I know nothing about the surgeries, nerve blocks, etc.

saraiderin said:



Shindig said:

I'm in Seattle. My Neurologist said the leading face pain guy is in Oregon, wonder if it's that same person....

Most people when they think of a leading TN doctor in Oregon they are thinking of Dr Kim Burchiel, in neurosurgery, at Oregon Health And Science University. (OHSU) I have as my neurosurgeon, at OHSU, Dr Raslan. I highly recoomend him to anyone considering surgery. Dr Stacey runs the pain management department through the department of anesthesiology. He does a lot more than just nerve blocks, and works with the neurosurgery department as well.

17

I had pain along all 3 branches, and each surgery took care of all the branches, so all but the 2nd MVD worked. I had bone compressing against the nerve, and it was understood chances were I would have nothing new compressing the nerve. As the surgeon was going back in to do the Internal Neurolysis, he did another MVD as a precaution, and he did not find anything new. The one surgery I would come close to not recommending is the Radio Frequency Rrizotomy. Though I was only awake for a second, I will never forget the pain. I have birthed two children, natural child birth, and had TN now for 18 1/2 years, and that pain did not come close. My partner came close to taking me to the ER because he said I was in shock, and really out of it for 3 days. I do not remember that, but I do remember thinking the whole hospital heard me yell.

Never had any nerve blocks as they were never offered, and there was no way I was wanting needles stuck in my face if they were. I also read to many horror stories about them to be comfortable with the idea.

Please feel free to ask me any questions.

Scared & Angry gal said:

you stated you are doing very well now, Saraiderin. Which surgery helped you the most do you think? I take it that nerve blocks don't help much? As you can tell, I know nothing about the surgeries, nerve blocks, etc.

saraiderin said:



Shindig said:

I'm in Seattle. My Neurologist said the leading face pain guy is in Oregon, wonder if it's that same person....

Most people when they think of a leading TN doctor in Oregon they are thinking of Dr Kim Burchiel, in neurosurgery, at Oregon Health And Science University. (OHSU) I have as my neurosurgeon, at OHSU, Dr Raslan. I highly recoomend him to anyone considering surgery. Dr Stacey runs the pain management department through the department of anesthesiology. He does a lot more than just nerve blocks, and works with the neurosurgery department as well.

18

As far as King helping my pain....well he did not directly do so. After being turned down for 4 appeals from my insurance for a 400 thousand dollar surgery that comes with a life time of monitoring with medtronics because it was not FDA approved...he made it happen. I brought my file in, presented the facts, told him how they destroyed my life with the GK(cut my 5th nerve) and now at 54 this was my only option to maybe get some relief from the pain. It was more involved then that, but u get the idea.He took a week and came up with a plan. Notified the state as well as my insurance. Sent my file to 3 diff. NS across the country and 2 out of 3 overruled the insurance company saying at 54 you cannot leave this woman in pain. I remember how proud Dr. Brown was of me. Another time I was refused disability. Incensed I went to his office ready for a a fair fight of all the years I have given this community as well as always being at the bedside as a nurse of those in need...now it was my time. I brought every factual thing I could about TN and AD to him. Not enough to bore him, but enough to make him want to read it. Two weeks later the same judge wrote me a letter and said that your case has been re-evalulated and u will be getting your check next month. As for my pain. I get a different assortment of pain pills. they work with me b/c I do not want to feel impaired, but yet I have killer pain. So we work with the opiates to help me. Be your own advocate. Use everyone in your path to help you. God bless us all...


19

This is terrible. I wish those doctors could walk a mile in your shoes. I hope you get some relief.

20

To Joya-Eva.... wow, what a story... I am glad you told us your story more in detail. It is a powerful and inspirational journey you have had!!!! I know I am more inspired to not let anybody or any system stand in my way from leading the best life I can still have regardless of TN. Am I correct that they cut your 5th nerve, which is the trigeminal nerve right? so, that takes away one kind of pain only to give you a much worse pain with is the anesthesia dolorosa pain I believe. I think I will ultimately go the same route. If my pain gets to bad, instead of going on all these zombie making meds, I will just try to get opiates and just pray I don't get addicted to them. God bless you Joya-Eva and thanks again for sharing your story!!!!