Has anyone had gamma knife?
Hi, Kelly. I had gamma knife January 2011. I'm different than many folks on here bc I have TN caused by a benign brain tumor growing in the nerve bed of the Trigeminal nerve. The procedure was successful in that it stopped the tumor from growing. The tumor is so close to the brain stem that surgery was the only option for me. However, there were some things that I wasn't prepared for, and I believe it's because the surgical team and the Neurosurgeon did a poor job in explaining what I could expect in the aftermath.
Prior to GK I had no pain. All the surgeons I saw were pretty amazed by this. In fact, they deemed finding the tumor an incidental find. However, last year, about 11 months after surgery I began having the most intense pain I have ever had in my life. I've since began seeing a whole new medical team for this and they believe that the pain was triggered by the radiation. Not sure how long the radiation is projected to cause my pain but I have seen some improvement within the last month or two.
When the pain started, I began taking meds to control it and they've been fairly helpful. Because of the location of my tumor, my only options were GK or craniotomy. I chose GK because it's not invasive and came with fewer risks. If I had to do it all over again, I would. However, I'd choose a different surgical team and I'd know which questions to ask going in.
My surgeon made me feel like the GK would solve the problem with absolutely no side effects or worries afterwards. I now know that that isn't true. I haven't suffered as bad as some, and for that I'm grateful. But I will say that the consequences I've suffered in the aftermath of GK have been no walk in the park; namely getting used to meds, side effects, swelling, scar tissue.
Be sure you're comfortable with the team administering your care and that you are comfortable asking them questions. My surgeon didn't have very good bedside manners. I think that's why I was timid with asking about the downsides of the procedure. I'm the second person I know who's had some setbacks with GK. I"m not on here much. But feel free to let me know if you have any questions. It's a "mostly" painless procedure. I'm a big baby when it comes to pain so for me the attachment of the halo was unpleasant. Beyond that, you shouldn't feel mush of anything else. Let me know if this all makes sense. Best to you.
KWMechelle said:
Hi, Kelly. I had gamma knife January 2011. I'm different than many folks on here bc I have TN caused by a benign brain tumor growing in the nerve bed of the Trigeminal nerve. The procedure was successful in that it stopped the tumor from growing. The tumor is so close to the brain stem that surgery was the only option for me. However, there were some things that I wasn't prepared for, and I believe it's because the surgical team and the Neurosurgeon did a poor job in explaining what I could expect in the aftermath.
Prior to GK I had no pain. All the surgeons I saw were pretty amazed by this. In fact, they deemed finding the tumor an incidental find. However, last year, about 11 months after surgery I began having the most intense pain I have ever had in my life. I've since began seeing a whole new medical team for this and they believe that the pain was triggered by the radiation. Not sure how long the radiation is projected to cause my pain but I have seen some improvement within the last month or two.
When the pain started, I began taking meds to control it and they've been fairly helpful. Because of the location of my tumor, my only options were GK or craniotomy. I chose GK because it's not invasive and came with fewer risks. If I had to do it all over again, I would. However, I'd choose a different surgical team and I'd know which questions to ask going in.My surgeon made me feel like the GK would solve the problem with absolutely no side effects or worries afterwards. I now know that that isn't true. I haven't suffered as bad as some, and for that I'm grateful. But I will say that the consequences I've suffered in the aftermath of GK have been no walk in the park; namely getting used to meds, side effects, swelling, scar tissue.
Be sure you're comfortable with the team administering your care and that you are comfortable asking them questions. My surgeon didn't have very good bedside manners. I think that's why I was timid with asking about the downsides of the procedure. I'm the second person I know who's had some setbacks with GK. I"m not on here much. But feel free to let me know if you have any questions. It's a "mostly" painless procedure. I'm a big baby when it comes to pain so for me the attachment of the halo was unpleasant. Beyond that, you shouldn't feel mush of anything else. Let me know if this all makes sense. Best to you.
Wow thanks so much for writing me yes, it makes alot of sense - and something told me that halo thing was going to really hurt my head. I am scared out of my wits - I cancelled it - I already had microvasscular decompression surgery and two months after that bam all the pain came back. So my doctor said Gamma knife would be next. He said you can only do it two times in your whole life - I smelled a rat right there..... trying to make light of all of this ya know.... I am sorry you are in pain and having such a hard time - glad you wrote me. They act like oh just do this no side affects and no pain - I told the doctor I would need to be sedated as much as possible cause I am so scared. He said he would as much as he could. Did you get anything like that? How long did it take them to put the halo on your head? thanks, kelly
Hi, Kelly
From what I remember, it took several minutes for them to put the halo on my head. I don't have a very high tolerance for pain so for me, it felt like it took longer than it actually did. He also told me that I couldn't be as sedated as I wanted to be because they do like to have you awake & alert as much as possible. However, during the actual procedure, I was asleep because the meds they gave me put me out. I'm sensitive to medication so it doesn't take much. What I can tell you is that it's helpful to ensure that your doctor gives you both the pros & the cons of this procedure. My surgeon didn't have very good bed side manners, so he had no tolerance or patience for my questions. I felt like I was nothing more than a number or just another patient to him. He's also done so many of these surgeries that, to him, this was just another standard procedure. Make sure you have a surgeon who makes you feel comfortable enough to ask questions.
What I can tell you is that in hindsight I wish I'd had someone who would give me the full scope of what to expect afterwards. Gamma knife may cause swelling, inflammation, and scar tissue and it may take up to a year for you to feel the effects of that; depending on the seriousness of it I guess. No one prepared me for that or what it would feel like. I had no pain before the surgery. So, the theory is that GK and it's aftermath are what caused my pain. I met a friend last year whose husband has MS and had GK for his pain. Gamma knife made things worse for him. He then went on to have microvasscular surgery afterwards and that made him better. So, it all depends on the person. In retrospect, I'd have gamma knife all over again because I only had two options- GK or open brain surgery. The tumor is dangerously close to my brainstem so ding nothing wasn't an option.
I guess the bottom line is to make sure you're talking with health professionals who will be upfront and honest with you about the pros & the cons, potential side effects afterwards, and what you can expect recovery to look like. I didn't enjoy the halo experience. But that was a lot better than the effects I experienced afterwards. If your health professional isn't willing to give you the full picture so that you can make an informed decision about your health, consider finding another one. Not sure where you live but I'm on the east coast. I go the Johns Hopkins Trigeminal Neuralgia Center. They are phenomenal and hands down are the best. Dr. Ben Carson runs this center. If you're close and this place is accessible to you, I'd highly recommend making an appointment.
And sorry this was so long! Trying to give you the full picture. :-)
As stupid as this sounds I didn't know what to ask him but they handed me a CD and said look at the CD explaining the GK. My computer won't play it cause I bought a used computer from Liberty University here and it has no programs on it. I need to take it to someones house and see if I can see it. I knew it wasn't a simple as they were playing out to be. Since the MVD didn't work and I am left with a plate in my head and big scar down my head from top to bottom the cut was only suppose to be like 2-3 inches I had 200 stitches in my head. No lie. Why I am not sure. UVA University Of Virginia in Charlottesville is a really good hospital but they do alot of teaching there. I feel like a guinny pig however you spell it....LOL After that didn't work I have fear of messing myself up even more. For something else that will not work. I really am thankful you wrote me you are the only and I mean only person I have spoke with that has had GK so all your experience and knowledge is helping me. After I cancelled it I got a letter out the mailbox they made me another appt to come back in May and didn't even ask me they set me up for a MRI like 12:15 then appt with them at 2:15 what nerve I thought? Seems like they could have called me or something? What do you think aabout that? Kelly
I understand the fear you have. I can "hear" it in your post. I'd say keep an open mind about it and realize that you are starting off at somewhat of an advantage because at least you know what to expect going in. That's a lot more than I had going in. You have the benefit of being able to talk to others who've experienced this and you can ask questions. It sounds like the GK procedure is not really an option for you. It sounds like your health care professionals are saying that you have to have the procedure. And, it would be a good thing to listen to them if they believe 1) you have to have this for your health, 2) it's the only option that you have because there are no other alternatives. Communicate to them that you want them to treat you with care as they provide your care. You want them to recognize some of the apprehensions and fears that you have and you need them to be patient with you. As skilled as they are, and as routine as this is for them, it's a first for you. So, let them know how they can better serve you by listening, responding, giving feedback, and alerting you before they schedule appointment. How does that sound?
Hi Kelly, I had GK surgery on sept 25,2012 and for me it has been a blessing. I had terrible pain and swelling on left side of my face because of TN. GK itself is not that bad . . before my doctor Barnett, La Jolla CA, Green Hospital, put the Halo on I received numbing shots where the screws from the Halo would be on the forehead. The shots were the only pain I felt during the whole procedure and I understand that they will give you something to relax you in case you are nervous or anxious. Now eat like a normal person ( I was only able to slurpe my food through a straw before the GK) also before the GK I could not brush my teeth . . . now no problem!
Kelly, I had Gamma Knife and was pain free and cold turkey on meds for 6 months. Then it came back 10 fold. 2 years later I had MVD and have awful nerve damage. They think it is due to gamma Knife. Wish I had not done it. But each person is different. Quite honestly it is all a gamble. I don't think anyone knows to much about TN. After 13 years of so many drugs and so much pain and misery, one truly suffers in silence. It is a curse. People have no idea of how we suffer. I know I'm tired of it all. Just plain wore out with it all. No one has a clue.
sorry to report that i had gamma knife and the pain was worse after ... i joined this group and learned a lot, one being a combo of medications ... i told my neurologist what medications i wanted to try and he wrote a script for them ... after being on the combo, within a week, the pain was manageable ... it's been six months and i am in pain again but i do have an appointment with a new neurologist this month @ mayo clinic in jacksonville florida ... everyone responds different to treatments ... if you choose gamma knife, let's hope it works for you !!
Hello all,
I had GK in October of last year, relief for about 6 weeks, then pain returned 100 times worse. Then had cyber knife this year, as I didn’t want to wear the halo again. SPG block in June and now have total numbness on entire left side of head (mouth, neck, eye, scalp, etc.) I wish I knew then what I know now; may have just suffered through.
Get 1st, 2nd, 3rd opinions if you can.
Good luck and let me know if you get any answers .
Christine
I had gamma knife in August of 2012 and it is worse now. My surgeon wanted to do MVD right from the start but we wanted to try the less evasive way. If given the choice again, I don't know if I would have had it done.
The research I have done online is that gamma knife damages nerves and in some cases MVD was not an option after the gamma knife.
Consider all the options and make the best decision for you if you have not already done so.
I feel from much research that if you have TN1 especially, that you might want to consider a "correct" MVD from a TOP surgeon who has done thousands of them-- you should not have been opened up that much unless tumor or something!
If it has been less than a year since MVD, - you are supposed to wait 12 months and let the nerves heal for full effect.
There is a Gamma Knife group under the groups tab here
Keep Posting!
I explored both options and was leaning towards Gamma Knife because I had met a woman who had a successful procedure at Univ of Pitt. I loved the idea of being pain free without having the recovery time of MVD. However, when I met with the Neurosurgery group at West Virgnia Univ, they were very honest about the downsides of Gamma Knife surgery. They told me that GK is usually reserved for elderly patients or those who would have difficulty surviving general anesthesia. The main problem is that they can overtreat the nerve and cause permanent damage that can't be repaired. If this happens, you can be left with a painful numbness that is sometime worse than the TN pain, but isn't treatable. They also told me that if the GK failed, MVD would likely not be an option. This information came from the GK surgeon who is world renowned so I trust his expertise.
I put off having my MVD because of the recovery time, but now that I have had it, I am so glad to be pain free. I'm happy that I explored all of my options and weighed them based on what I could live with for the rest of my life. Good luck to you.
How long did it take you to become pain free?
Norby said:
Hi Kelly, I had GK surgery on sept 25,2012 and for me it has been a blessing. I had terrible pain and swelling on left side of my face because of TN. GK itself is not that bad . . before my doctor Barnett, La Jolla CA, Green Hospital, put the Halo on I received numbing shots where the screws from the Halo would be on the forehead. The shots were the only pain I felt during the whole procedure and I understand that they will give you something to relax you in case you are nervous or anxious. Now eat like a normal person ( I was only able to slurpe my food through a straw before the GK) also before the GK I could not brush my teeth . . . now no problem!
Kelly
Hi I have a suggestion for you too. The last I had heard was that Dr. Carson was retiring so I don't know if you can still get in to see him or not. I am very happy with the team that did my procedure. I am in NC. I have my surgery done at NC Baptist Hospital Wake Forest School of Medicine in Winston Salem. For you it would be a couple hour drive. I went to 3 neuros before I found this one and I love Dr. Stephen Tatter. I highly recommend him to anyone close enough to see him. My experience with the surgery went great and we are already planning the second GK for the other side. Sorry to interrupt ya'lls talk but I thought it may be helpful for you to hear about dr. Tatter.
Jeritta
Kelly Hatcher said:
As stupid as this sounds I didn't know what to ask him but they handed me a CD and said look at the CD explaining the GK. My computer won't play it cause I bought a used computer from Liberty University here and it has no programs on it. I need to take it to someones house and see if I can see it. I knew it wasn't a simple as they were playing out to be. Since the MVD didn't work and I am left with a plate in my head and big scar down my head from top to bottom the cut was only suppose to be like 2-3 inches I had 200 stitches in my head. No lie. Why I am not sure. UVA University Of Virginia in Charlottesville is a really good hospital but they do alot of teaching there. I feel like a guinny pig however you spell it....LOL After that didn't work I have fear of messing myself up even more. For something else that will not work. I really am thankful you wrote me you are the only and I mean only person I have spoke with that has had GK so all your experience and knowledge is helping me. After I cancelled it I got a letter out the mailbox they made me another appt to come back in May and didn't even ask me they set me up for a MRI like 12:15 then appt with them at 2:15 what nerve I thought? Seems like they could have called me or something? What do you think aabout that? Kelly