Ugh, this is SO depressing ... looking for advise

Every morning I look at my hand full of pills — Tegretol, Topamax, Lyrica, Citalopram, Indomenthacin, Baclofen, Omeprozole (for the indomethacin) ... I've got my afternoon and evening doses too.

It's been 4+ years of this. I MVD, I have no compression. But for whatever reason, after my surgery I was able to live 13mo pain free and it was awesome, but it all came back. I'm a very positive person. I'm surrounded with such incredible support from friends and family — my husband is awesome. But I feel so terrible for him. His wife sucks. I feel bad for my boss, who deals with this constant moving target — ME. Everyone who surrounds me is absolutely incredible.

But all I do it sit in bed all day, get waited on. Try and get some work done. Feel like crap.

I am over it — I'm over the regular appointments with my neuro, when we add in more med, higher doses. At some point I am suppose to go in to remission. But my pain has really gotten so much worse in the last 3-4 months, its changing. I use to have pain in my jaw. Now I have all of this pain around my eye (I'm going to see a neuro-opthamologist the end of April) and I get shooting pain and aching up my skull behind my ear. what is that about?? My pain has changed and evolved so much in the last year since it came back.

I did research into going down to UCLA and spent the last 3+ weeks getting my records down to them — and they've been awesome. It has been sounded awesome. Waiting to have a consult call with them. It was suppose to happen last night and then nobody called and finally 2 hrs later a nurse called and just said that the head of the neurosurgery dept, who my call was suppose to be with looked over everything and said I need to find a facial pain expert in my area. WHAT DOES THAT EVEN MEAN?! What do they think I've been doing for the last 4 years?! And that since I already had MVD, even thought I had no compression, a neurosurgeon wouldn't do another surgery on me. OK, that's fine. That's not what I was asking for.

This is where I'm at ...

- my current Dr. is super nice, supposedly the highest here where I'm at ... he swears that I should go into remission at some point, but what the current strategy is to add in more drugs on top of what I'm taking + higher dosages (ie: I'm SUPER MISERABLE)

- I do not have a compression, I already went in for MVD

- my pain is evolving and changing and now I get a lot of pain around my eye, my left eye tears, twitches, aches as well as my facial pain

- I haven't had an MRI since 2011, nobody seems to think that is an prob?!

I was thinking about looking in to the Mayo Clinic or Johns Hopkins — however it would be easier to go to Stanford, anywhere in LA or in Seattle as I have family there and have places to stay. I live in Salt Lake City.

Hi Jessica,
Reading through your post, I could relate to so much of what you share…Great family support, great doctor /specialist support, higher doses or new meds etc etc and still the ever changing pain.

…I did have compression found during my MVD and I only got 4 months pain free. My MVD was a year ago…

But here’s the thing, compression or NO compression is not the question…MVD is not always the answer…
In my opinion…
The question remains…What “really” causes TN?
“they” don’t know.
Why do some procedures work for some and not others?
Why do some meds or combo of meds reduce or completely cover the pain for some and not others?

Why are there people walking around with compressed Trigeminal nerves and no TN pain?
Why are there people like yourself with no visible compressions or other possible causes with TN?

This line of questioning can go on and on…
I research ALOT…and still no answers.

But WE have to keep trying whatever we can and when the burden of it all overwhelms we need to take a step back and breathe…

My advice to you would be to push for a fancy smancy updated MRI .
I would also contact the Mayo as well as John Hopkins and send your abbreviated history to the TN specialists ( including surgical reports, meds and doses and current status) asking for opinions and advice.

I like you am over it…I’m taking a little wee break from research and advocating and trying to regain some strength and will power to go hard again…if it’s not the pain it’s the meds…that hinder my ability to function.
But we can’t give up!
((((( hugs ))))) and positive thoughts, Mimi xx

Mimi thank you so much for your reply — it means so much to me. It's so awful that we are going through this but it's nice to know that there are others who "get it".

My family is constantly wondering what is the next fix and I'm with you — why do I have this? And the pain is complicated, it changes constantly.

Today I'm going to look at the good:

- I am very lucky to have wonderful medical insurance via my husband's company

- I'm currently sitting on my front porch enjoy some sun and breeze (which doesn't bother my face)

I've got an appointment with my current neurologist a week from today — I do need another, newer MRI. And then I can get that + my other records sent over to Mayo and Johns Hopkins.

OK, I'm going to breath ;) HUGS, Jess

Hi,

I’m so sorry about everything you are going through. I’m so sorry that you are on a lot of medication and had a MVD and still in a lot of pain. I live in Central California and used to go to Stanford and am now at Cedars-Sinai. I saw Dr. Jaimie Henderson at Stanford and he was amazing. He also has a really good physical assistant. When I saw Dr. Henderson I couldn’t have surgery at the time I saw him, so he referred me to neurology until I was ready for surgery. Sadly, things went very wrong with neurology, so I went to Cedars-Sinai. I saw Dr. Wouter Schievink in neurosurgery at Cedars-Sinai and he seemed knowledgeable in TN. When I decide surgery is right for me, he is on my short list for neurosurgeons.

Hope you are able to find a neurosurgeon

I went to Johns Hopkins and had 3 surgeries. I cannot recommend it. Disorganized and little compassion from neurosurgery group. Former head was terrific but he has retired. What about someone at Intermountain Heath Care?

Please go lightly on yourself.