This is for anyone that has had Gamma Knife. When did they start weaning you off your meds, how long did it take to work, if it worked and for how long and did any of you have to stay in the hospital overnight and why. That's all. LOL Thanks.
Had Gamma Knife in 2009, Since I am bilateral there were no med changes. It was a terrifying experience since I am clastraphobic and could not stand the cage over my face-massive panic attack. It did work for about a year but the pain is back.Not quiite as bad. The ear and the phantom toothache are back with a vengence. Have you ever had problems with you nose. on the side of the tip of your nose. It is not painful, just annoying. I think the biggest disappoinment of Gamma Knife was my expectations. When the ear pain came back i just cried. All the best to you as you go through this journey.
It was done as an out patient. Out the door as soon as they were done. Zero follow up with doctor. Very disappointing experience.
i had gamma knife in 2012 ... my symptoms were worse after the treatment ... i then found this group and learned about the different medications to take to manage the pain ... i went to my neurologist and told him what meds i wanted to be on ... he wrote me scripts ... within a week on the combo of meds, i was feeling better ... i always know when it's time to take my meds ... my face lets me know
Thank you all for your information. I really do appreciate it. Rebecca, do you mind me asking what kind of meds you are on now and where you had your gamma knife done?
I have had problems with my nose. Blowing my nose was an electric shock trigger and also, the side of my nose itches all the time. ONe time it itched for 15 hours. I thought I was going to lose my mind. I feel so sorry for you having it on both sides of the face. OMG!
Mary, i had my procedure in Jacksonville, FL ... i take gabapentin 600 mg, 2 pills, 4 times per day, baclofen 20 mg, 1 pill 3 times per day ... i also take citalopram 20 mg 1 pill in the AM and clonazapam 0.05 mg, 1 pill in the evening ... i take the last two pills for vertigo and take them in the AM & PM, like my hearing and balance doctor prescribed them ... the first 3 pills are prescribed by my neurologist ... i suggested adding the baclofen to my neurologist after i had the gamma knife and my symptoms became worse ... within a week of the baclofen added, my pain is manageable ... oh, i almost forgot, my neurologist increased my citalopram too 1 1/2 pills a day because i was getting break thru pain ... one thing that needs to be taken into consideration is that what works for one person may not work for all
I have had Type 2 TGN for almost 5 years. I had ablation surgery 2 years ago with little effect.
I had Gamma Knife last Thursday- 6 days ago- and the pain has been nearly unbearable. I take 800 mg Gabapentin 3x/day, Soma 3x/day, Topiramate 50 mg at night. I have missed 3 days of work because I am in too much pain to move my face to even talk. I have been laying with ice packs on my face as this is the only thing that takes my mind off of the pain. I have an area on the top of my head (my scalp) that is completely numb- not tingling just numb that the doc said is normal. I do not have a follow up until November.
I am hoping this pain will settle down but when you are in it, it feels like forever. I just want the pain to stop.
I was cold turkey from the start. Pain free for 6 months then back with a vengeance. 2 yrs. later I had an MVD< ended up with anesthesia dolorosa. Back on 2700mg. of Neurontin and 20 mg. of baclofen. I hate this thing we all have We need a cure.
I'm so sorry you are still in pain, annoyedinaz. Thank you for responding, along with the rest of you.
We really are all in this together. I have learned so much from others and the resources available. Hang in there! Had Gamma Knife in 2009. It failed for me and I had MVD 2010. Got nearly 4 pain free years. Now it’s back. I’m accepting I’ll need to probably have MVD again I’m not entirely sure till I see neuro 10/16. Day by day friends…
Thank you, Jillian. What works for one, doesn't work for another, and vice versa. I've had two MVD's and compressions found at both but got no relief from either. I am so afraid the gamma knife won't work either. The MVD is your best chance. I'm still glad I did it.