Gamma Knife Radiosurgery

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Has anyone had this procedure done for trigeminal neuralgia? Would be interested to hear about your experiences.

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16 Replies

  • Posted

    Hi

    My Dad had this done in Sheffield in January.

    A bit of background. Over Christmas the pain was really bad, he had upped his carbamazepine to 700mg tablets, they weren't controlling the pain but were making him exhausted, disoriented and gave him double vision.

    The neurosurgeon confirmed he had classic TN via an MRI. The operation seemed scary but Dad said apart from a little soreness where the temporary halo was attached to his head for the op he was fine.

    At the point when he went in for surgery we think he was in a bit of remission. The surgery can take a while to be effective but he seemed to find relief immediately (perhaps the remission?)

    The operation hasn't cured the TN pain, however, Dad is now controlling the pain with 300mg a day. He feels a tightness in his face when the weather changes (stormy) or if he is in a stressful/tiring situation.

    He is so much better than at Christmas we are sure that the operation has been successful to some degree.

    Please ask any questions, I wasn't quite sure what part of the surgery you were interested in.

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    • Posted

      Do you know if he had above the eye, cheek and bottom chin nerves,

      I am asking because all 3 my major nerves hurt.

      Sometimes people just has a section

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    • Posted

      Thank you, Tmg72. I think you've satisfied my curiosity. It was never offered to me as an option. I had MVD, which didn't really work. My goal is to decrease my medications significantly, if not get off them. I am still on 1100 carbamezapine, 600 Gabapentin, and 150 lamotragine daily. It really affects my day to day function as I am always drowsy or low on energy. I've read a lot about this procedure so I was just interested in success rates, and wanted to find out if it really is as non-invasive and painless a procedure as it is said to be. It's just a day surgery right?

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    • Posted

      Yes, my goal is also to decrease meds because they cause you to be so tired. I rest so much and can not be active.

      Thank you also but would like to know if he had all facial nerve pain

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    • Posted

      Yes, my Dad was constantly tired on the higher dose.

      He had shooting pain, for the first 5 years it would be triggered by temperature changes, touch, and mouth movement. (Brushing teeth, eating etc) then by November the pain would come without any trigger.

      The pain shoots up his face like an electric shock. Usually it was just a few shocks at a time (although intensely painful) but a few times the pain lasted for 20minutes. I have no idea how he coped, just watching was horrendous.

      I hope you get sorted ok x

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    • Posted

      hi

      the surgery always is not going to work

      I've done twice , might be the surgen. he did not had have enough experience and i think , i was a mouse to get experince, he was the famouse, Eben Alexandria, that once, he went to Coma, and wrote the book, regarding the life after Death, anyways, the surgery was done 24 years ago, not once but Twice, each time 6-7 hours, took just in operation, before the first surgery, mu T.N had been control with TEGRETOL but I TOLD HIM , I AM IN SCHOOL. and this medication make me sleepy, he said do surgery, it's easy, and after the surgery, you might have little weaknes on your right hand but do not worry after 2 weeks you are going be fine,!!!!!!!!!!!!!!but After the surgery the pain got worse and Guess what?? I 'VE GOT PARALYSIS, and after 2 weeks he said with Second surgery you are going be really fine but my pain got worst and Horrible . 

      i do not want you to be disapointed but be careful. 

      i wish the worst thing happen to Dr. EBEN AlEXANDRIA. 

      i have misreable life right now. 

      take care 

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  • Posted

    Hello rsw,

    By the way, what does rsw stand for? Just curios, Anywho, remember that this was performed on ME(57 years of age, and in good health). It was performed January of 2014. I had it done bi-laterally. I guess I was meant to have it on both sides(Typical TN...names are still being debated). 

    First of all, "statistics are nothing more than a number to make the reader HAPPY or SAD at that moment in time". I WAS HAPPY! Unless you teach it and collect the statistical data youself, be skeptical. I say this because you do not know where they got there data from, or whom they got it from (age, health, family, etc...) Sorry, I am soap boxing from a Math Teachers' perceptive. 

    I now am experiencing the side effects from Stereotactic Radiosurgery, or Gamma Knife some 2 1/2 years later. I have weakness of muscles involved in chewing (8%), numbness on the side of the face that was treated (8%), pain on the side of face that was treated (1-2%), eye numbness on the side of face that was treated (8%), inflammation/irritation of the side that was treated  (1-2%), and injury to the cranial nerves that DID result in facial weakness. With radiation, there is a greater chance of LATERAL damage...as in my case. Hearing loss, double vision at times, hoarseness, gait is off (balance sucks), and difficulty in swallowing. These were the statistics from the Oncologist and Neurologist. I have no idea where they got them from, and when asked, they said it was a clinical study that was performed...from where? No answer. Red Flag!!!

    I pray this answers your question. PLEASE DO NOT MAKE A DECISION OFF MY FAILED ATTEMPT TO GET RID OF THE "MONSTER". Research until you are blue in the face, and you feel this is right for you. Everbody has a different nervous system. I wish I could be more positive, but I am just telling you MY story.

    Final words, from the book "Sriking Back", (I did not buy it until I saw it on a reply from this forum) it says that a MVD is to be done first, I did it backwards. They say this because with radiation, you zap the nerve (and others in my case), then you come in with MVD and work with a zapped nerve, your chances of being pain free are lower.

    May God Bless you in making the right choice for YOU,

    Greg

     

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  • Posted

    yes. had it done last year. What would you actually like to know? I don't want to give you heaps of info you dont want and miss telling you what you would like to find out.It was successful.

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    • Posted

      Hello, Greg,

      I had the Gamma Knife in July 2015 and was told that for some it gives immediate relief and for some it takes up to 6 months. I flew to Sydney twice (I am in Australia) for consults and an MRI with contrast which they said showed nothing but that they often can still help a patient. Then on the day of the op I went in early and two neurosurgeons came and told me what was going to happen and immediately stood either side of me and proceeded to inject my head in four places with a local anaesthetic and attach a titanium head frame to my head with small screws which I did not feel at all. Then I had to wait my turn in the gamma knife machine which was about an hour wait. They then came again and offered me a sedative as a person can be in the actual machine for 3 to 4 hours or longer for some and the sedative helps you to sleep. After I had that I went down to the op suite and they got together with the Gamma Knife technician and I was wheeled into the machine room. You lay on a bed a bit like for the MRI but they actually bolt the head frame into the bed platform so you are absolutely still. Then they give you a call button so you can ring if you need to go to the toilet or anything. They then slide you into the machine and there is complete silence for the whole thing. I fell asleep. Some places have music but this place did not. When I was taken out they helped me to a bed and I had the head frame taken off. They bandaged my head to stop any bleeding and I had to wait about an hour before they let me go back to the hotel to sleep. My op did not work immediately and it was not until April this year (9 mths later) that all pain suddenly stopped and has not started again. I am now slowly reducing my meds down at the rate of 25mg per week. This will take a long time.

      I have had no side effects and was told that there are none other than perhaps a headache on the day of the op from the headframe they put on. I did not get a headache myself.

      I hope this info helps toward your research. I have photos but I don’t think you can post pictures to a forum.- regards, Valkyrie

       

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  • Posted

    Hi I had TN for 15 years.I went to pain management clinic over 3 years ago in York England I was offered a balloon compresion.They knock you out with this procedure but go home same day  I have had one or. two blips but overall I have my life back It was April 2013 when it was done. Just a slight numbness but it's nothing I can do everything I used to before TN  

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    • Posted

      Hi

      This is Maryam

      I saw your massage

      Can you explain more, what exactly you did.

      I had 2 stupid crianotomy c1-c2 that was not necessary but Dr. Eben Alexandria that I want to do something that all the world know what he did to me.

      The other neurosurgeon told me" do not do it"" these surgery are very major, but he said is nothing "" I have mesrable life now, those surgeries were done on 1996 , I think I can not do anything, I've done and tried everything because stupid liar Eben Alexandria aggravated the facial from back of my head severely

      He opened my head and went inside the hypothalamus and my brain not once but twice and each time 6 hours just in operation room. . That's why I think

      Nobody and nothing can help me. Please let me know what you did. Thanks and I really appreciate you .

      Maryam

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  • Posted

    I guess what this means really is that there are a few procedures out there and as in the drugs, one's relief might be hell for another.

    I know the feeling of being so desperate that you would try anything that's offered to you. But as greg66242 says, we must do our research before committing to anything. Greg, rsw are my initials 😏

    I personally want to research and understand more about the gamma knife procedure. Not sure yet that it's the right thing for me after having had MVD, but it's definitely worth learning more about.

    As always, good luck to everyone, and I wish you all the best!

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  • Posted

    Hello RSW. please see my repy to Greg below. I have described the procedure in detail. The only thing I forgot to say was that they shoot gamma rays (or something) through holes in the machine and into your head which is a very precise op and that is the reason for the bolted headframe so you can't move. The rays kind of damage the side of the nerve a bit so it makes scar tissue which feels the impulses less. They can also use it to fix the problem if its a blood vessel pressing on the nerve but mine was for a small tumour which they zapped so that it shrunk and will eventualy collapse. Well worth having this op which has helped me tremendously (and did not hurt)

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  • Posted

    Hi,  I had Gamma Knife Radiosurgery July this year.  Takes a full day in hospital, having the frame put on was the most painful - the anaesthetic injections but over quite quickly.  The rest is a bit strange (mainly having the frame on for a whole day) but not painful.

    For 2 days after I had no pain at all!  Then I had awful TN almost constant electric and burning pain.  I was told it might trigger the nerve for a bit!!!  This week the pain has changed more like tooth ache with occasional bursts of electric but it is bearable.  I am having trouble eating, that is a bit painful but life is considerably easier than before.   I hope it will carry on getting better.  If however it stays like this I can manage its much better.

    I also have progressive MS and was told that the Gamma Knife would only last 2 to 3 years because of the MS, however, it should be easier to manage.  What that means I do not know!!  Good Luck I would recommend the procedure. 

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