Home from the New Neuro RE: Pain relief from TN

[michelleric]

Well, I had a long visit with The Neurologist who is the Director,at the Center for Headache/facial pain. He spent about 1 1/2 hours with me. He was fantastic.  I am coming to find for myself, that Cleveland Clinic has the best doctors, for me. I have heard mixed reviews of the CCF, but for me, I have found nothing but superior care in all my medical care from them.  Yes, the prices are high, as well as the parking, but the quality of care I have received and am receiving are top-notch. I am listened to and feel important to them, and not a # but a person with a name and they understand me, and if they dont they try to figure it out, and help me find a solution. Nothing but good things to say about them.

Anyway, after speaking with the doctor 1st, answering and asking LOTS of questions, he then gave me a full neuro exam. Went over my recent MRI's with me in detail and here was the basic summary:

I am not an easy fix. (I already knew this). All my "problems" pain related to my head/face/scalp/ear all are related to demylination which is all coming from the brainstem.  This is why it is not just called TN, but Atypical face pain.  It is my 5,7,8,and 9th cranial nerves.  I have Occipital Neuralgia, Trigeminal Neuralgia, Glosspharangeal neuralgia and I think there was 1 more neuralgia.  Basically this is not good, nor easy if possible to treat.

The fact that it is coming more frequently and lasting longer, is also not a good sign for the future. It is an unknown as to what happens next, but his gut feeling it this is not going to get better, and most likely will continue to worsen if we cant find the
right" treatment.

Treating this is lots of trial and error. I have been trying to treat this with my MS neuro for the last almost 2 years. She has tried all the right things so far, he will take over from here. He is now D/C the Topomax and starting Lamictal. He did make me a bit nervous about this med, but explained it in depth about side effects and what to watch for. I will see him in 2 months. He also gave me a script for a pain med, in case I ever ran out, but I shouldnt worry about using them. I told him I try to take it sparingly, but he said when I am in the pain, to take it as directed and he increased that as well.

He told me to not worry, that he is not sending me away without options. If this doesn't work we can try something else.  He "might" have to consult with 3 other physicians about me, to find out what they think. There are other more invasive options if needed, someday. (I told him if this ever got to a continuous pain without a break, I would be calling Dr. Kevorkian. I couldnt live with this. I meant it, and he understood.).

I told him it is if I am bipolar, with 2 very distinct personalities. The "normal" one, he was seeing today, and the "other" me, who cant function. He said he liked this one, I was funny. I told him he should see me on a good day. We laughed a lot. He has a great sense of humor as well. Basically I came home in fairly good spirits. I told him he was my last hope, so he needed to wave a wand or do whatever he does, because I need to feel good.

A visit all in all. I feel I am in good hands.

Michelle

[essdipity]

I'm in there pulling for you, Michelle. You deserve a break today, but at someplace much better than McDonald's!

hugs,
ess

[sllowe]

What a wonderful write-up of your day!

I'm so happy to hear about the good relationship and visit and also the details of what cranial nerves and demyelinantion is causing. Sounds like no matter what, he'll keep working to find out the right combo and consult w/the other drs too...

Sleep Well, Michelle
-Shell

[michelleric]

Thank you for your comments, so much support here,. Always is...so appreciated.

So, the pharmacy had to order the Lamactil, and the pharmacist went over with me how to take it. Well, I got home and looked at my neuros handwritten directions and it is taking 3 x more than the pharmacist said to do, I called pharmacist, and she said take it the docs way, but to bring everything in on sat. and she will call him and go over it.

Anybody on this med?

Gotta go to sleep. Nite   ~  Mivhelle

[Lulu54]

M- your post makes me want to cry  for/with you. Although the news s*cks, at least it is identified and you can understand the complex nature of treating your pain.


This has been so horrendous and near-impossible for you.  Having someone who understands this particular problem and is willing to work with you is so important.  It sounds like this doctor is the one for you.

I'm hoping for better days ahead for you.

hugs, L

[figuerpa]

I am very happy for you, although I am sure you are happier.

Sounds like you found someone who actually understands and is willing to do what it takes to help you.

I have heard many good things about the Cleveland Clinic, don't worry about the mixed reviews as long as you know that the doctor you are seeing is the right one for you.

Good luck and I really hope he helps with the pain you are experiencing.

I am with you on the not liking to take pain medication. Everytime my doctors want to prescribe me medicine I always tell them preferrably no narcotics. Addiction scares the heck out of me, but sometimes those medicines are necessary for the pain.


Please keep us informed on how your treatment is going.

Best wishes,
Paula

[steph74]

That sounds great.  I'm glad he was careful and thorough with you.  If my pain gets worse, and my neuro keeps saying I don't need a pain specialist, I may have to get the name of this doctor.  :)  Heck--Cleveland is only 7 hours from DC...

[rendean]

Michelle,

I am so happy for you that you have found a WONDERFUL, caring neuro. He sounds fantastic!! I like docs who aren't afraid to consult other physicians and don't let their ego get in the way of your care.

I hoping the Lamactil will do the trick. I was given it for migraines and yes, the side effects are scary  but you are an alert sensible woman who will react quickly should the side effects occur.  

I also like that he shared all of his thoughts with you. A patient needs to know the who, what and why of their ailment.

The pain management department at my facility s ucked. They told me that my TN and other pains are the types of pain they send to neurologists. You are so lucky to have a great doc working with you!!

Hugs,
Ren

[missy72450]

Michelle,

I am so glad you had a good visit. The Cleveland Clinic is one that my Neuro mentioned and I was apprehensive.

I am glad to know you were treated well and got answers. I hope the lamictal works for you keep us posted on that. Topamax seems to be doing less for me.

I am with your Dr on the pain meds. None of wants to take them but take it from someone who taught pain management to healthcare professionals. If you need it you need it so do not be afraid to use it. It is those who use without need that have a problem.

Love and Prayers,

Missy