Gamma Knife

General General TN & GPN (Old Site)
1

Hello, I'm new to this site. Seventeen years ago my pain hit while on my honeymoon in Ireland. I really thought perhaps it was dental, and my new contact lenses just did not seem to be working. My dentist ruled out a dental issue. The pain was so severe I ended up in the ER. The attending MD ordered an MRI. I was diagnosed with a benign meningioma near my optic nerve. I became a patient at Columbia Pres in NYC and underwent the removal of the tumor. Half my forehead was removed, my brain was collapsed by removing CNS fluid from my brain via my spine. I was told the pain would end and I was home in 5 days. The pain was incrediable, No sleep, no work, it was a dark time. I begged my husband for a divorce so he could go on and have a normal life. I really wanted many times to die. The neurosurgeon did not know why. I have lived in pain since. I gave birth twice with no pain meds because it did not hurt that bad compared to my head and face. I've had the following diagnoses....Migrane, Cluster Headaches, SUNCT, CPH. I've done oxygen therapy, anticonvulsents, and pain meds. I have had the pain that wakes me, the pain that comes when I'm happy, sad.. I've had epsisodes destroy vacations, holidays and events important to my sons. When I'm feeling good I try to shove lots of things into that time like shopping, cleaning and quality time with my family. I try not to plan things like people over for dinner because chances are I may end up in a far corner of my home sobbing. I have manage to work. I'm a director of a daycare and I have the very best staff.

My 7th neurologist viewed an MRI with a radiologist and it was suspect if my tumor was regrowing. I went back to Columbia and saw my neurologist because he is one of the finest people I know. I love him and trust him with my life. There are few that are like him. He said there is no tumor regrowth. We talked alot about the pain all these years. He talked alot about how neurosurgery has advanced since my tumor and refered my to another neurosurgon in the dept. Long story short, an MRI with done with "a trigeminal protocol" show my nerve being slammed. I sobbed alot!!! 17 years to get to this point.

I underwent Gamma Knife on Feb 1st. After 11 weeks I was no better. I was hopeful to maybe feel better 6-8 weeks and since my insurance was billed about $90,000. NY told my husband that the director of the GM program must have mispoke and it is up to a 6-8 month wait. AAARRRRGGGG.

People do not get this disorder. It is NOT a headache. I could live with that. These are attacks. I explain it as imagine...your teeth are being extracted, your eye is being removed, you are being scalped, there is a bear chewing the side of your head and face and a car has just backed over your head all at the same time....for hours at a time.

My husband is great. He manages all my appointments, goes on them with me, navigates the insurance companies and manages our boys (14 and 15) and the house. I would have died without them.

I know this entry is long so if you have gotten this far I thank you. I have never had any contact with anyone who may understand this. Anyone have GM that has helped?

Each day as each day comes! Thanks, Anne

2

Anne, the only thing I can say is...I hope the bear stops chewing. :(

3

Anne, you seem to have your hands full with a lot of complications of surgery that are really not TN, as well as the results of vascular compression(s) of the trigeminal nerve. If it will help you to read the practice and outcomes standard for Gamma Knife, then send me mail at ■■■■■■■■■■■■■■■■■■■ and I'll pass it along. With respect to Typical TN, the procedure has a common period of up to three months before it kicks in (IF it does -- in less complicated cases, the success rate when GK is the first procedure used, is about 80%). The further bad news is that about half of all TN Type I patients have pain recurrence by the end of three years. I personally believe that surgeons should be barred from using the procedure against TN as such (it is appropriate for otherwise inoperable tumors or AVM). The $90K figure also sounds rather high. Of course, MVD is even higher in the US.

I wish I had some sunshine for you, Anne. But let me know if you would like a private copy of a copyrighted paper on practice standards.

Regards, Red

4

it is true, in my case, after having the GK procedure, my pain came back with a vengeance and it only took a month ... God be with you Anne.

R/

Rebecca

5

i so sympathize with you - and one sentence especially - this is NOT a headache.. i've had (very) few headaches in my life.. and i could tolerate them... not this.

6


I'm not suffering the complications of brain surgery because all of my horrific pain now is the same as it was prior to my brain surgery 17 years ago. If GK can give me some relief, that is a blessing for me. If it gave me 3 yrs or less that is a bigger blessing, I will take what I can get. MVD is a high risk surgery because it is open brain surgery. GK offers the hope of relief with minimal risks Sometimes hope is all that gets you through a day. I love to see anyone who gets relief any way they can find it be it meds, gk, or mvd. Everyone is different, and different things work for different people. My neurosurgery teams will consider an MVD for me if need be. My case is TN2. I understand that my tx of such is a process. I have to entrust my care to a renound medical team and like all here face each day as it comes. From what I see patients have unseccessful Gk and unseccesful MVD. For each hour I do not have pain, I'm grateful As far as $90k, that's what my statements indicate...l Richard A. "Red" Lawhern said:

Anne, you seem to have your hands full with a lot of complications of surgery that are really not TN, as well as the results of vascular compression(s) of the trigeminal nerve. If it will help you to read the practice and outcomes standard for Gamma Knife, then send me mail at lawhern@hotmail.com and I'll pass it along. With respect to Typical TN, the procedure has a common period of up to three months before it kicks in (IF it does -- in less complicated cases, the success rate when GK is the first procedure used, is about 80%). The further bad news is that about half of all TN Type I patients have pain recurrence by the end of three years. I personally believe that surgeons should be barred from using the procedure against TN as such (it is appropriate for otherwise inoperable tumors or AVM). The $90K figure also sounds rather high. Of course, MVD is even higher in the US.

I wish I had some sunshine for you, Anne. But let me know if you would like a private copy of a copyrighted paper on practice standards.

Regards, Red

7

Anne I did have GK and after three years it came back. I was disheartened to say the least. But the pain that I had gotten it treated for was not as bad and is now controlled with Effexor. However I am now bilateral and have intense pain in another area in my chin. This area was/ is bad and is now controlled with amitriptyline. I do not even feel the original pain in my eye tooth because of the GK and effexor. I don't know if this helps, but I thought I would mention it. I am bilateral because I got a shot in January on the left side of my mouth to have my cap put on my back molar done...this triggered more pain and the pain in my chin. I don't know if I would only have to be on Effexor right now if it weren't for that... So long story short I had 3 really good years and 1 year of really good control with EFFEXOR. The rest is yet to come. Hope this helps. Min

8

MVD is not "high risk" surgery. It's not zero either, of course. But there have been almost no mortalities associated with thousands of tracked procedures, and the incidence of lasting side effects in CNS fluid leak or meningitis appear to be well under 3%. The most bothersome common side effect of MVD is permanent numbness. Less common and of true concern is "anesthesia dolorosa" -- a nasty combination of surface tactile numbness and underlying searing pain, which is very difficult to treat. Ask your neurosurgeon for his or her outcome statistics on all of these effects. If they don't know or haven't been doing follow-up surveys with their MVD patients, then tell them why you are going to look for another doctor.

Regards, Red