Should I include this in my Neurologist packet?

[Pennyann]

I won't be seeing the neurologist until June 16th but they sent me a packet to fill out and fax to them ahead of time. I filled it out but I want to include a little blurb regarding my last experience with TN. I'm talking about the part where the Humana doctor blew me off, lied to my face, denied me treatment, treated me for problems I didn't have. I was traumatized by how they treated me and I am TERRIFIED of seeing the neurologist. It has been 12 years and I am still apprehensive that I'm going to go in there and not be believed or be lied to. I can kind of tell from seeing my primary physician that more is known and they take it seriously but I am still nervous. I am actually afraid to admit I feel pain on both sides because I read that you can't have it on both sides and I am afraid by telling the truth it will cause them to not believe me.
The first time I felt it on both sides but it was the left that was the side that caused me the most pain and when I had the MVD on the left side, poof! the right side was fine too, until now.

So would it be helpful to mention why I am apprehensive in my packet- I express myself best in writing, or wait until I see them in person? I have a list of questions I will be taking when I go.

[gene1950]

Well I say give them the whole nine yards now so the neurologist has some time to think about it.

[allih]

I would include it. And I think more is known now about bilateral TN. I have Type 2 TN with some lovely stabs when it really acts up. I've had pain on both side for over 18 months and have had no idiotic comments about how you can't have TN on both sides.

I would definitely tell the neuro how you feel as you can use his response as a gauge of how well you will work together. Remember he works for YOU. If you don't have a good rapport, it won't work. Any doctor who is treating someone for long term chronic pain has to be able to listen to his patients concerns and fears so that a good working relationship can be established. If you don't have that, YOU have the choice to seek a better doctor.

You are your best advocate and know your body best. You deserve a doctor who works with you, not against you.

Good luck and I hope he works out for you.

Alli

[bilateral]

Hi,

I have bilateral TN too, both sides typical TN.
I don't have pain on both sides at once - it's either one or the other.

It's important that you say exactly what it is like for you as the neurologist is supposed to be helping you, which he can't do if he does not have the complete picture.

I agree with Alli: if this neurologist does not appear to be working well with you, you have the option of going elsewehere.

I hope for you that you will find that some things have moved on over the last 12 years and that you will have a better response to your TN than you did then.

Take care,

Anne

[Pennyann]

Thanks all for the input. I am going to include why I am apprehensive this time so she will understand what is going through my mind in case I walk in and am hysterical before anything is said. I can't help it. It is an involuntary physical reaction I have that was imprinted on me so strongly.

[baywatcher]

I do think it's important for this doctor to hear that you are apprehensive - better that there's a clear understanding that you have had a terrible experience, and that it has certainly colored your feelings about treatment - but that you want to work with the situation and not allow it to stand between you and whatever ideas the new person has.

I'm sure doctors all know that there are some terrible bad actors out there. They may not volunteer anything ( almost universally medical professionals feel some need to hide or justify these bad incidents). I imagine the more dispassionately you can present the story the easier it will be. But to be fair to the doctor and to yourself say it and then move on to the new situation. Good luck. Nancy

[chasingmytoddlers2]

I am going to the neuro tomorrow to discuss some new pain areas. I will also be talking to him about the pain starting on the 2nd side w/ in 2 months of the TN starting.
I will also ask about the theory of no one being able to have pain on both sides at the same time.
This is my personal exp w/ pain on both sides. 3 different scenarios.
1. I get sharp shooting pain, jabs thru out the day, all day.
2. I get more constant pain that lasts for minutes at a time. During those times of lets say a 4 min. curcuit of pain I also get jabs of pain on the other side.
3. I can get a jab by my right cheek and then my teeth may hurt on the left side and then I get a stab of pain by my eyebrow on the other side. Then it all dissapears.

It does bounce back and forth and they may not be happening at the same second but w/ in seconds of each other.

The only episode that I can say happened at exactly the same instant was when I was having a longer attack on my right side around my jaw/cheek area and I felt like I was getting stabbed above my left eyebrow. AT THE SAME TIME!
Hang in there, we are all in this together.
Will post tomorrow evening PST.
Stephanie