the never ending quest for relief

Hi everyone,

This has been a stressful week for me. I really feel like I am a ping pong ball, being bounced around from doctor to doctor to doctor. One doctor can't help, so he sends me to another, and then the next doctor sends me to someone else... I don't think a week goes by that I don't have multiple doctor's appointments.

I really need to learn not to get my hopes up, because I always end up hitting rock bottom when nothing comes of a new doctor. But I can't seem to help it. I need something to look forward to, and the possibility of relief & answers is too alluring.

That is exactly what happened to me this week. Earlier in the week I made a 3hr trip to consult with a "top notch" doctor who is head of pain management at a distinguished teaching hospital. My doctor had been in contact with her after she reviewed my files that he sent her & the two of them agreed to send me up for an evaluation. What a waste of time! I don't understand why she couldn't have told my doctor what she told me in the appointment over the phone! Instead I had to waste my time, money, and precious energy only to be disappointed.

I was first sent to see the pain psychologist. He didn't have anything useful to say, which was no surprise, as I've worked with a pain psychologist in the past & still work with a regular psychologist & psychiatrist and thus have already learned their techniques for managing pain and stress. Afterward, I was sent to see the doctor. As it was a teaching hospital, I saw a pain management fellow first. I really liked this doctor. He was energetic, on the ball, obviously caring & really seemed determined to help me out. Now I'm no easy case, I know that, but he seemed to have some ideas. After he finished examining me, he left to present my case to the attending physician before she came in to see me. Well, she must have shot down all of his ideas, because when she came in the room she said "well, it looks like you've tried everything already. I don't have anything to add." And why did you need to see me in person to tell me this when you have had my chart sitting in front of you for MONTHS????! I did not like her. She was very cold & curt and refused to "think outside the box" (which is what I need at this point & the whole reason why I was sent to see her!). Her only suggestions were lyrica, which she didn't think would help due to my history of non-responsiveness to similar medications (my doctors agree, as they ruled out this med long ago because of my history & its side effects/my lifestyle), & IV lidocaine. I don't know too much about lidocaine infusions & she was not too forthcoming, but I was told that it might possibly help, but would be something that I would have to repeat often & that I could have this done somewhere back home. Then she told me that she thought that my problem was something to be dealt with by ophthalmologists & gave me the name of an ophthalmologist near her who specialized in several areas that have nothing to do with my condition... Frustrating doesn't even describe it.

Fortunately I made out better with the neurosurgeon yesterday. Or, at least I liked him. Actually, I really liked him. I'm not sure that there is anything that he can do, but he at least has ideas (although frankly, they scare the heck out of me). I had to wait 2 hrs to see him following an hour and fifteen minute drive (he was stuck in surgery), but it was well worth it just because of the way he treated me. He took a long time to go over my history with me in complete detail & looked at my MRI's. He made me feel human.
When all was said & done, he did have two ideas 1) Gamma knife surgery (they essentially damage the nerves with highly focused beams of radiation, in my case, they would probably target the trigeminal nerve, as he thinks that my pain is due in part to trigeminal neuropathy), and 2) Implantation of a nerve stimulator. At the moment, he isn't sure if either of these procedures will help, as my case is pretty unique. For now, he is going to do some research & consult with colleagues across the country who have had more experience with treating eye/orbital pain and then get back to me. Apparently the gamma knife is commonly used with trigeminal neuralgia, but not with trigeminal neuropathy & so he wants to have a better idea of whether or not it would be successful before recommending it to me. As for the nerve stimulator, he wants to find out whether or not it would be possible to place an electrode on a nerve cluster behind the eye, as this would give me the best chance of relief. I didn't know until my father mentioned after we left, but this neurosurgeon is actually world renowned for treating facial pain & trigeminal neuralgia (I was referred by my neurologist & never researched the guy)! He is also apparently one of the world leaders in the gamma knife technology! I really really hope that he can help me, because it sounds like he is just about the only one left with ideas!

Skeye

Post Edited (skeye) : 8/22/2009 4:21:09 PM (GMT-6)

Skeye,
I and others here know how disappointing this whole process is for you - time and time again. Yet it only takes one doctor to make the right difference. I like the sound of this last one your saw - both in the way you were treated and in the creative thinking he did. I think too many doctors are just intellectually lazy anymore.

I believe the gamma knife was used on me for my fusion surgery - well for part of the process, as a way of doing a minimally invasive fusion. The NS I worked with is skilled in it, and I know a lot of doctors come to consult him, but he works with spines.

I'm going to hold out hope with you that one of these options will at least be worth a realistic shot for you!

Keep hope alive!

Hugs,

PaLady

((((((((((((((((((Skeye))))))))))))))))))))))

XXOO
Patti

Thanks for all the support & hugs everyone! It helps! It's so nice to be able to come here & not feel so alone!

Dani, I think my mother would like that. I usually go alone to my appointments, but I brought both of my parents along to these two appointments (partly because they had to drive me, since the appointments were too far for me to drive to with my eye, but mainly because I wanted the support). My mother was so angry that the PM made us drive all the way there and pay her just to hear something that she could have told my doctor over the phone after reading my records! Very frustrating, indeed.

Skeye

Thanks cbear. It seems that for every good doctor we come across, we have to go through a handful of bad ones first! I have some great doctors now, but I've definitely had my fair share of awful ones as well! It just makes the good ones all the more valuable.

Skeye

Skeye,

 

I went through the same thing although I have different medical problems.  I was shuffled from one 'specialist' to the next for two years and saw five in one month alone.  It is very frustrating to get your hopes up and then to be let down so quickly especially by a doctor who completely lacks bedside manners.  I had one run in and out of the room taking phone calls etc. - I had waited three hours to see him.  He pushed me off on a 'pain management' doctor he was partnered with.  He maybe spent 10 minutes with me!!! 

 

I was finally referred to a neurosurgeon who immediately ordered I think the only test I'd had not had yet and at my next appointment told me what we needed to do.  I have multiple medical problems including RA so my recovery time has been long however I do see some progress and am able to sleep in my bed for the first time in over two years. YEAH

 

I wish you the very best of luck with this neurosurgeon.  You have to respect a doctor who is willing to tell you he wants to consult with others who may have answers for your unique situation.   Some seem to have major ego issues

 

Tina52