No Gamma Knife for me...I have to have brain surgery

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I went yesterday to meet with the doc that performs the Gamma Knife surgery only to find out that I am not a candidate. He said that I was the youngest patient that he had ever seen with TN and that I am on a toxic level of medications. Also, I was told that if the Tegratol did not work for me, which I was on for 2 years, that any other med only had a 20% chance of working. He gave me two options from here…one I ruled out since its surgery that won’t last long…so my only option now is something called microvascular decompression (MVD). I won’t go into details, but its brain surgery. I am seeing the top docs now at Beth Israel in Boston and I trust them with everything, but I am so scared.
I have to go back next week for my final MRI to rule out MS, which I know and he knows I don’t have, and a new tumor that did not show up on my last MRI, and then next week I will schedule the surgery which the doc wants to do asap…which means in the next two to three weeks.

I cried literally all day yesterday…thank god my mother came with me to ask questions, but she was in total shock! She didn’t even know what to say…I have never been in this much pain in my life, and this surgery has a 95% success rate and I will not have to be on any meds which is huge since the last 4 years of my life has been nothing but medication!!! But it is still major surgery and I don’t know what I am going to have to do to prepare myself for this… :frowning:

Does anybody have any stories to share about this??

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P.S. I am not a candidate for Gamma Knife because I am too young. He said that I will develop tumors at some point in my life because the radiation is so strong. He said he would do it if I said so, but needed to tell me the risk, which I think is too risky and something that I don’t want to deal with later on. Also, it will take up to 3 months for me to feel relief and that it will slowly subside, if it even does. Forgot to add that.

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Seek a second opinion. But MVD is the option I want. I personally think since it has the best success rate, I am willing. But I realize you are so young and I’m not so maybe that is something to consider. I am waiting on an appt with the neurosurgeon. I had my MRI this past Thursday so maybe soon. And since I had this relapse after 2 wonderful weeks, I can’t wait. I can’t believe the pain came back this severe and so quickly. No warning. But I’m not feeling any stabs unless triggered by eating, drinking or talking. I have had periods where just breathing causes them. So once again I am thankful that even though these triggers can’t be avoided, I’m not having constant pain only severe pain when they happen.

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Gins…perhaps you should make arrangments to chat with Sarah Hobbs, Aleshia or Tamara regarding MVD. All three of these ladies have very recently gone through this surgery. There are several other members as well but the names are not coming to me right now.
I’m sure they will be able to give you lot’s of information as far as what to expect and help you through some of your fears.
take care and I wish you the best…Judy

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Thank you all for your comments. This is my last resort. The doctor said that I have been on every medication possible to treat TN and have had no success. I have also had several procedures that have had no success. I know I need to do this, but I am petrified. The doc said that I will wake up with no TN pain at all! I’ll have a massive head ache and surgical pain but no TN pain…it doesn’t even seem possible…it has been so long that I have had pain. Its just so scary…and the hospital is an hour away from home which is where all of my family and friends are. My mother, I’m 29 and still want my mother, lol, is going to see if the hospital will let her stay over at all…i am so scared…
I heard from the doc’s office today…last MRI appt is 3/17 and the surgery will be in less than 2 weeks…either 3/24 or 3/25. I started crying…its actually going to happen…

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Hi Gina,
I know in part what you are going through. I had MVD surgery on 2-12-09. Right now , the most important thing I can say to you is…breathe…breathe…breathe… Once you catch you breath, remember, you have a choice. You do not have to do anything that you don’t want to do . Unless you have a medical problem that is life threatening, it is not necessary to make a decision today, tomorrow or in two weeks.

Take some time to think about what you want. Learn as much as can about TN and MVD. Ask questions of your doctor. You have the right to know about his expertise and experience with this surgery. What are his credentials? You are entitled to a second opinion or a third… whatever it takes to set it right with YOU! There are probably an infinite number of thoughts , fears and concerns racing through your mind right now. One thing you might want to think about is keeping a notebook and jotting down your questions and concern as they come to you. When you think about it write it down!. ASK, ASK, ASK ,questions, no matter how silly or out the box you think they are. It is your body! It is your life. You are driving the bus!

Talk with others who have gone through this surgery. Read our stories. Just remember, we are each individual and unique. Our medical conditions, physical capabilities, lifestyles etc. are very different. Why one person experiences this complication and another doesn’t, is what makes us uniquely human.

I will be happy to talk with you anytime. I came through my surgery with flying colors. I had no complications before, during or after my surgery. My surgeons have a proven track record of success with this type of surgery which made it a little easier to maintain a calm composure.

The most important thing they did for me is that they both recognized me for the woman I am. I am very optimistic, still I am very serious and straight forward. When it comes to the medical profession, as much as I love words, I am very much a mean what you say and say what you mean kind of woman, if can’t do that well then it is better to say nothing at all. They respected me and treated me with dignity from the first moment I walked in the office. They both honored my right to make my own decision.

My only goal going into the surgery was to get busy living fully again. While in the throes of active Tn attacks, I felt like I was living 1/4 of a life. I happily and very gratefully report, outside of the traditional after surgery headache, I continue to be pain free. I am off all medications. And the best part of it, I am getting my life back day by day! It feels awesome! I am here for you and if there is anything I can do help lighten your heart and mind let me know.

Peace and tenderness sent your way,
Aleshia

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Hello Gina

I am sorry that you have received such difficult news.
I too, have had an MVD. It was 7 weeks ago on January 20, 2009.

There are a lot of people here who have experienced the MVD. YES it is scary stuff. And for me, it was the second time in my life I experienced brain surgery.

I’d like to share with you something my neurosurgeon said to me. He does probably 50% of the MVD’s in Canada, and is considered the top guy in the field.

I went to him because he mentored under my original neurosurgeon, and everyone in that department suggested I would get the best opinion available.

I thought I could get a Gamma Knife procedure, because they have one at this hospital. But my doctor explained something to me that I found quite interesting. This might help some of your anxiety…

He said that when treating TN, the BEST course of intervention is usually through an MVD. It has the highest success rates of all the other procedures.

But, he said, because people freak about “brain surgery” they always want to try the other stuff first: gamma knife, rhizotomies, balloon decompression, glycerol injections, radiofrequency lesioning. All of these procedures, by the way, have LOWER success rates than MVDs.

The problem is, that once people have 1 or more of these other procedures, it LESSENS the effectiveness of the MVD. And so people come to him having already had some of those done, and so their chances for success lessens considerably. So when he goes in to do the MVD, instead of 90-95% chance of success, he’s looking at 50-60%.

The other factor that decreases the success of the MVD is the length of time the patient has had TN. Any more than 7 years and the percentages drop considerably.

He was very straight with me. I could try the other procedures and hope they worked (some only last for a short period of time). or, we would go straight to the best possible outcome: MVD.

I’ve had 2 brain surgeries. One for a brain tumor 15 years ago, and one this year for the TN. And can tell you that WITHOU T A DOUBT the hardest part of all of this is the fear you experience before the operation. Once it is done you will look back on it and think, well, that wasn’t impossible to endure. No, it’s not fun having a hole made in your head. But neither is TN.

And if you have the option of going for the best possible surgical outcome, well, you have to decide what’s best for you. I can only say what was best for me.

Feel free to ask any of us lots of questions. There are quite a few mentioned above who are recuperating from MVDs in the recent past. We are happy to help you. Even through the fear and anxiety.

Hang in there. It will be OK.

CAT

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I thank god for this website!! You all are unbelievably kind and your words are going to help get me through this!
My doc wants to do this asap because I have been in excruciating pain since December 13th this time around and nothing is touching the pain anymore. I wanted to make the decision fast so that I didn’t have too much time to think about it…I want to get it over with as soon as possible so that I can be on my way to recovery and put this in the past…hopefully!
Thank you all for all of your support! It means more than you’ll ever know!! :slight_smile:

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Gina:

We cried too. We were scared too. We doubted ourselves too, at one point or another.

You have to go with what feels right to you. We can only relate our experiences to you, in the hopes that it helps somewhat.

When you get scared, sad, or doubtful, come here. We’ll walk alongside you.

CAT