My mom

General General TN & GPN (Old Site)
1

My 79-year old mom has had TN for about 3 years. For the last year she has been on gabapentin, neurontin, lyrica, cymbalta, and a fentenol patch off and on. She hasn't tolerated the medications well, experiencing dizzyness, disorientation, sleepyness, confusion, and still hurting, too. She has had to give up driving and attending church at times when either the pain or the medication made it unsafe or too distracting. Her neurosurgeon did the percutaneous glycerol rhizotomy procedure on her in May, and she was pain-free for only 12 days following the surgery. The neurosurgeon has recommended Microvascular decompression, which my mom is very afraid to have done, but she is beginning to feel it is the only option she has left.

Is there any one who has experienced a successful outcome from Microvascular decompression who would be willing to share their experiences with my mom? She is mostly afraid of being permanently incapacitated, either physically or mentally, as a result of the surgery, although the neurosurgeon has told her that is very unlikely.

My mom is unfamiliar with blogging, but she does do email, so if anyone is willing to talk with her, I'll forward messages to her email. Her name is Gerry, and I'd appreciate any support any of you might be able to offer her. Thank you!

2

Gerry,

My name is Tammie and I am 29 years old. I have been suffering from TN for almost 3 years. I, too, tried every medication under the sun, and was unable to tolerate them. I am a 4th grade teacher, and I had to miss months of school due to drowsiness, inability to walk straight lines, speech problems, etc. All from the medicine.

In May, 2011, I had and MVD. I have type II pain, but my doctor said I had a 90% chance of success.

For me, the MVD didn't work, but now I am learning why. I believe, and so do my new Dr.s, it was due to the poor surgeon I was dealing with while out in Seattle. Now, my neurologist looks at my MRI and can't even find pillows! I am not trying to alarm you, but I want you to research your doctors. Make sure you have a well educated surgeon who is willing to sit with you and give you every detail you need before you have this surgery. It's worth having the best. I wish I would have gone out of network. But now I know.

On the positive side, I wanted to tell you about my experience with MVD in general.

The first 4 days are painful. Headache doesn't begin to describe it. But after that, the pain subsides little by little. I was home and walking around the block the third day. After about 5 days I started to feel like I could do small things around the house. You will need a lot of time to rest. Small activities like making a sandwich will exhaust you. But little by little they become easier. I went into work on day 10, just to grade some papers and see my kids. I think I finally started working again after 2 weeks.

My pain came back on day 12, but as you well know, this disease treats everyone differently. There are many success stories and that is why I agreed to have it done. Would I do it again? Yes. I will try anything and everything to be pain free.

I am currently seeing new neurosurgeons, and going to the Cleveland Clinic, which is out of state for me, but again, I will do anything.

The MVD was not any more major than my knee-reconstruction. It's hard, you're sore, and you will need someone to look after you for at least a week. But today, two months later, aside from the pain being back, and the problems with my previous surgeon, I am healed, the scar is barely visible, and if Cleveland Clinic tells me they need to re-do the MVD, I would say, OK.

I hope you do your research, and if this is right for you, I hope you have a successful MVD. Keep us posted.

3

I think she’s too old for such a major surgery. It’s often not recommended for the elderly. However, every individual is different, and she may be a very healthy 79. I’m just basing this off things I’ve read. I have never had an MVD.

4

I thought about it some more, and if the medication is effective and it’s just the side effects she doesn’t like, I would not do the surgery. However, if she is not getting any relief from the meds, and her quality of life is 0, then I would think she should get the surgery.