Hello to all I know very well, in my heart,this suffering even if i am not the patient GNP,for this I embrace you strong all I would like to ask if anyone has experienced Gamma Knife for GPN? The results it has achieved? For how long the disease goes into remission? There are possible damages? We have done (family) the MVD in 2009, and now the pain is back ... Someone of you has experienced Vidatox 30ch to alleviate the pain? This is a remedy made from the venom of the scorpion .... Heartfelt thanks to all of you for your support GOD BLESS ALL OF YOU
I have undergone the Gamma Knife procedure for GPN in NYC. It was an experience that I may or may not choose to have again. Unfortunately, the initial relief was little or none, in fact, it actually irritated my condition at first and I was sick from the pain killer that they administered, However, as time has passed, I do believe the procedure has begun to work on a gradual basis. From what I've been told, the radiation can continue to work over time, even if it didn't work initially. From my experience this is what seems to have happened. Now, don't get me wrong, I still have events but they have lessened in severity.
I wish you much luck if you decide to try it. There have been many success stories with Gamma Knife and the very similar condition of Trigeminal Neuralgia but GPN patients are more rare and the medical field really doesn't have a ton of experience to show patients. If I can answer any other questions please don't hesitate to ask.
My mother had the Gamma Knife procedure in October of 2012 for GPN. She has been pain free now for 1 1/2 years. It probably took about 6 months for the pain to recede completely. However, it was better within a few weeks after the procedure. Her voice improved almost immediately. (she had almost lost her voice)
She still takes Gabapentin (although her dosage has been lowered) and she also takes an anti-depressant.
The hospital staff kept telling us that they had performed the procedure frequently, which gave my father the wrong impression. After I pinned them down, they admitted that they had only used the procedure on one other patient for GPN. My reason for pointing this out is that the Gamma Knife procedure was fairly safe, considering their extensive experience with it....but whether or not it will help GPN was still in the experimental stage at that time at that hospital.
I have undergone the Gamma Knife procedure for GPN in NYC. It was an experience that I may or may not choose to have again. Unfortunately, the initial relief was little or none, in fact, it actually irritated my condition at first and I was sick from the pain killer that they administered, However, as time has passed, I do believe the procedure has begun to work on a gradual basis. From what I've been told, the radiation can continue to work over time, even if it didn't work initially. From my experience this is what seems to have happened. Now, don't get me wrong, I still have events but they have lessened in severity.
I wish you much luck if you decide to try it. There have been many success stories with Gamma Knife and the very similar condition of Trigeminal Neuralgia but GPN patients are more rare and the medical field really doesn't have a ton of experience to show patients. If I can answer any other questions please don't hesitate to ask.
------------------------------------------------
Hey :-)
Thanks for the response
I wanted to ask you ... how long ago did you GK? The procedure is painful? Have you had any side effects or damage ?
My mother had the Gamma Knife procedure in October of 2012 for GPN. She has been pain free now for 1 1/2 years. It probably took about 6 months for the pain to recede completely. However, it was better within a few weeks after the procedure. Her voice improved almost immediately. (she had almost lost her voice)
She still takes Gabapentin (although her dosage has been lowered) and she also takes an anti-depressant.
The hospital staff kept telling us that they had performed the procedure frequently, which gave my father the wrong impression. After I pinned them down, they admitted that they had only used the procedure on one other patient for GPN. My reason for pointing this out is that the Gamma Knife procedure was fairly safe, considering their extensive experience with it....but whether or not it will help GPN was still in the experimental stage at that time at that hospital.
No, she did not have any complications from the procedure. She was very frightened and a bit traumatized by the procedure. However, she has a very high anxiety personality and she was not on any anti-anxiety medications at that time. If you decide to do this, I would suggest that you familiarize yourself with what to expect and mentally prepare for the procedure, if you are a fearful person. I've posted a link below that will explain the procedure and what to expect.
Please let me know if you have any specific questions about the procedure. I was with her from start to finish. The cage that they will attach to your head looks scary, but it did not hurt her when they attached it to her head. It healed up very quickly afterwards too. God's blessing to you.
No, she did not have any complications from the procedure. She was very frightened and a bit traumatized by the procedure. However, she has a very high anxiety personality and she was not on any anti-anxiety medications at that time. If you decide to do this, I would suggest that you familiarize yourself with what to expect and mentally prepare for the procedure, if you are a fearful person. I've posted a link below that will explain the procedure and what to expect.
Please let me know if you have any specific questions about the procedure. I was with her from start to finish. The cage that they will attach to your head looks scary, but it did not hurt her when they attached it to her head. It healed up very quickly afterwards too. God's blessing to you.
I have had two MVD procedures. The first, a “Teflon pad” for my GPN did not work. The second, was a re-sectioning of #IX, the same nerve.
I also had Gamma last Dec. for Trigiminal or TN…CN #V. From my research and the information from UCSD, Gamma Knife would not be an effective procedure on the glosso nerve. Excellent for Trigiminal, but Glosso? Not so much. It wasn’t even offered as an option.
Hello everyone interested in gamma knife and GN. I live in England. The neurosurgeon I am seeing whose name is MR NIEL KITCHEN ) You can find out information on him using the internet, does gamma knife for GN patients. A book has been written based on his life as a neurosurgeon at The National Hospital for Neurology and Neurosurgery which is one of the UK’s leading neurology and neurosurgery hospitals. I indent stand that the first operation offered to GN suffers is an MVD because it has better success rates than other procedures. However if you can’t have an MVD for example be causes your health is not good enough to let you have a general anaesthetic , then gamma knife is a good option as for some people it can entirely stop their pain or reduce it and it can be repeated. Also with patients who have GN as result of cancer etc. it might be the first operation which is recommended. The point is be causes the sulk is not opened up their will be no risks of all the problems which can result from just that procedure taking lave . Also it can be carried out as a day patient with no stays in hospital etc. however I understand it’s very difficult in GN to" latch on" to the right parts of the brain to get the right targets in the brain whereas with TN suffers it’s easier. I am considering whether to have Gamma knife also rather than an MVD because it’s less risky. Hoe that helps. Please let us know what you decide to do. With love from S.
where was your re-section / rhizotomy of the Glossopharyngeal nerve performed? did you have any side effects like problems swollowing?
I am still searching for a surgeon to cut my Glossopharyngeal and sensory part of the vagus nerve.
Thanks
Mike
Sandee said:
I have had two MVD procedures. The first, a "Teflon pad" for my GPN did not work. The second, was a re-sectioning of #IX, the same nerve.
I also had Gamma last Dec. for Trigiminal or TN...CN #V. From my research and the information from UCSD, Gamma Knife would not be an effective procedure on the glosso nerve. Excellent for Trigiminal, but Glosso? Not so much. It wasn't even offered as an option.
Does Dr. Nile Kitchen also perform the rhizotomy/cutting the Glossopharyngeal nerve? MVD will not help in my case and I decided against the gamma knife since the success rate is very low at 70 percent and the pain comes back after some time.
Does Dr. Nile Kitchen also perform the rhizotomy/cutting the Glossopharyngeal nerve? MVD will not help in my case and I decided against the gamma knife since the success rate is very low at 70 percent and the pain comes back after some time. Hehe
He may well do or another neurosurgeon at The National Hospital For Neurosurgery and Neurology may do so. You can consult neurosurgeons privately as a fee paying patient at the private consulting rooms next to the hospital in Bloomsbury, London. Look up what neurosurgeons practice there on the internet. There are many and it will tell you the areas they specialise in. May I enquired why an MVD won’t work in your case as doubtless that will teach me something because like all GN sufferers I want to find out as many things as I can about GN and the possible solutions for it. Xxxx
S
Sandy said:
He
Mike said:
Hello Sandy
Does Dr. Nile Kitchen also perform the rhizotomy/cutting the Glossopharyngeal nerve? MVD will not help in my case and I decided against the gamma knife since the success rate is very low at 70 percent and the pain comes back after some time. Hehe
Please let me know
Hi,
No used to this type of forum, so I hope I’m replying correctly. I had it done at UCSD by Dr. John Alksne. He has done hundreds of these procedures and is quoted in the book Striking Back. He is an amazingly kind dr. who knows his stuff.
I have never heard of Gamma for GPN. Only for TN. I have never heard of the other procedure.
Yes, I had swallowing problems at first, mostly choking while eating. Did not need a tube or anything like that.
Not used to this type of forum, so I hope I’m replying correctly. I had it done at UCSD by Dr. John Alksne. He has done hundreds of these procedures and is quoted in the book Striking Back. He is an amazingly kind dr. who knows his stuff.
I have never heard of Gamma for GPN. Only for TN. I have never heard of the other procedure.
Yes, I had swallowing problems at first, mostly choking while eating. Did not need a tube or anything like that.