While it sounds like you had some side effects from the CyberKnife, it also sounds like it may have worked for you. I hope it did. It’s the best “surgery” out there. No blood! Good luck with the rest of your recovery and I hope your pain continues to subside.
Lauren
Denise Petrillo said:
hi my name is Denise I am pepel27318@aol.com I had the cyber knife about 4 weeks ago. I would say my mouth is about 70 % percent better. I m still on some meds. I did have brain swelling and was put on steroids. Has problems with the steroids. Yes it just mask no screws in your head. It tool only about 1/2 hr. Only thing is I am really tired I just started feeling better and got sick again.
I hope it not from the radiation. I will keep you posted. It is so nice to not have the pain like I did. I am just hoping
I will feel better. I will keep you posted just email me again. I am not to computer savy.
I’m currently on Topamax and Tegretol. I haven’t been able to take the full prescribed amount because of conflicts with oral birth control, so I’m only taking them in the evening. If I take them enough hours apart from my morning pill, there is no conflict. The meds are mostly keeping things at a tolerable level, although I do have those days… With a 20 month old son, it’s very hard to have those days because I can’t stop and cry and shut down, so that’s why we’re still looking at other options.
In the past I’ve been on so many other meds I can’t even remember them all (I think I included most of them in my original bio). They didn’t work, so we went for the MVD. That, combined with the current meds, are making most days livable. It’s those in-between days that we’re trying to eliminate.
As for keeping strong…there really are no other options…especially with a baby! You do what you have to do! And as I tell people when they as me how I deal: It’s beats the hell outta some other things I could’ve gotten!
Head up! Tomorrow’s another day.
Lauren
Ro ~ said:
Hi lauren,
If i may ask, are you on medication for TN? If so, how well does that help you?
You mentioned your doctor is a very well known TN neurosurgeon and he has come up with some options for you including the very common balloon procedure.
Each person seems to be different just as medications may have different effects. I’m glad you speak to your doctor about it just like all the others should talk to their doctors when making decisions for their situations.
that being said, it’s nice to see that you’ve looked up some info and sharing.
Thanks and glad to see you’re keeping strong
Lauren said:
Hi Missy.
Unfortunately for me, no, there was no improvement. However, we had to give it a try. We’re looking at two other surgical options right now, both of which are in-and-out same day surgeries, so they’re nothing compared to the MVD.
Best of luck. Give it a full 6 months before you give up hope. It really could take that long.
Lauren
missy said:
I was just wondering if your Cyberknifer treatment was successful? I have been diagnosed with ATN and was treated in September but have not seen much improvement?? Thanks, Missy
missy said:
missy said:
Lauren said:
Hi JKL. Thanks for your reply. Unfortunately though, I don’t believe that Cyberknife is the same as Gamma. To begin with, and this is fortunate for me, there is nothing attached to my head during the procedure!!! This treatment is painless, bloodless, and takes an hour. The only “difficult” part is that you don’t know if it works for anywhere from 6 weeks to 6 months. Thankfully I have found relief with topamax for the time being, which prior to my MVD did nothing at all! I do have to have a mask fitted to my head for the prodecure, but it’s a loose mask and the mask is attached to the table during the treatment so my head can actually move a few millimeters which the robot accounts for during the radiation. It’s quite a new treatment and not very many hospitals even have it available, so even fewer doctors are trained in using it. It takes a team of doctors, physicists, technicians, and I don’t even know who else to do one treatment. Again, I’m keeping my fingers crossed. I’ve got about 5 weeks till the zap. I’ll know more by the end of the month if it can even be done as the plate in my head from the MVD may cause problems when trying to get accurate scans of the nerve.
I believe all of the info regarding my outcome is buried in this thread somewhere, but just to recap: yes, I did have the cyberknife for my TN. For me it did not work, but no, I did not have any side effects, so I still think it was well worth the try. It’s certainly a LOT easier than traditional surgical treatments. I think you should still consider it even though I did have success with it as most patients do see some, if not total, relief. My TN is not typical in any way, so nothing standard seems to be working. Fortunately for me, my doctor is one of the country’s TN specialists and has a few ideas that he can try with me. We’ll see if those work.
I hope you find relief soon. Best of luck, and feel free to ask anything else.
Lauren
Jimmy Works said:
Lauren, did you have the Cyberknife done for your TN? I’m considering it now…that is, if the doctor recommends it. Two questions: Was it successful? Are you having any side affects? You can email me direct if you wish. jcworks@bellsouth.net
Lauren, thanks. Yes, I did find it buried in the thread. I’m not real good at how to follow threads but I did read your results. I am sorry it didn’t work for you. The GK did work for me for almost 10 years. Now its back. So, maybe the CK will work…that is, if I have to have it done. I will pray for your success, as it sounds your case is more severe than mine. Thanks Lauren.
Lauren said:
Hi Jimmy,
I believe all of the info regarding my outcome is buried in this thread somewhere, but just to recap: yes, I did have the cyberknife for my TN. For me it did not work, but no, I did not have any side effects, so I still think it was well worth the try. It’s certainly a LOT easier than traditional surgical treatments. I think you should still consider it even though I did have success with it as most patients do see some, if not total, relief. My TN is not typical in any way, so nothing standard seems to be working. Fortunately for me, my doctor is one of the country’s TN specialists and has a few ideas that he can try with me. We’ll see if those work.
I hope you find relief soon. Best of luck, and feel free to ask anything else.
Lauren
Jimmy Works said:
Lauren, did you have the Cyberknife done for your TN? I’m considering it now…that is, if the doctor recommends it. Two questions: Was it successful? Are you having any side affects? You can email me direct if you wish. jcworks@bellsouth.net
24 hour count down until Cyberknife. The Trileptal isn’t working well enough and it is making me a ding dong. I hope this works. 2 weeks to months to know. I’ll update you all. Wishing you all a pain free day.
Lauren, I had the cyberknife (CK) done 2 weeks ago. It is painless, and very easy. I just laid there for 45 minutes while the CK did its thing. When I got up to go home the technician told me to give it 2 - 3 weeks before I should expect anything. After a week I talked to my neurosurgeon’s nurse and she told me to not expect any change for 2 - 3 months. So, it has now been 18 days since I was treated. I am still taking 3 pills of Tegritol / day. Thats a total of 600 mg. I still have symptoms: a burning feeling in lower jaw, other times like dozens of small electric shocks in the cheeks and/or lips. Other times its a feeling like when you hit your funny bone real hard and that nerve sends painful feelings down your arm…except of course, this is in the face. I am not having attacks as severe as I did originally, but that may well be because of the med. I upped it from 2 pills/day to 3/day about the time of the treatment. As it comes time to take the n ext pill is when I get most of my symptoms. But it is nothing I can’t tolerate. I’ve been to what I call level 9 or 10 before. I’ve experienced the mind-numbing stabbing pains 10 yrs ago. Symptoms I have now are no where close to that. I had a Gamma Knife treatment for it 10 yrs ago and it worked. It took 6 months for it to work, but it did work. The symptoms I have now are not nearly as bad. In summary, I can’t tell you if my CK treatment will work, but I think it will. It takes time ! I have high hopes and prayer that it will. The CK is a more modern version of the GK-- and the GK worked on me for 10 years. Oh, one other thing. If you look around on the web you can find all kind of stuff about people who have had treatments by CK, MVD, whatever. Some will complain their hair fell out in spots after the CK, but it does come back. Others complain about headaches or facial numbness. Those are possible side affects. I went into it willing to accept ANY of that to get rid of the pain and shocks. The neuro will determine whether to give you from 1 to 5 treatments. They determined I needed 1. I lost no hair. I had one headache a few days after the treatment. Took care of that with a couple of tylenol. I had no numbness. I have had basicly NO side affects. Even if I lost all my hair, and had occasional headaches, or some facial numbness ----what is that compared to ongoing shocks and pain? I’d take any of those over the pain.
In summary, I can’t tell you if it works for another 2 - 3 months. If your neuro says he wants to do it, I would strongly consider it. But thats me…and my TN is apparently not as severe as others. Good grief, I just made an argument for doing it without knowing it. If my TN was far worse than it is, I would try anything they offered me. The reason I think others have it worse than me is I am on 600 mgs Tegritol. Others are on far higher doses. Hope this helps.
Good luck with it, Lisa. After getting an email of your post, I just realized I gave a lengthy reply to Lauren when Lauren has already had the treatment. I’m not good at following threads and like you the meds make me a little foggy-headed sometimes. So…sorry for the error Lauren :). And good luck to you Lisa.
Lisa Marie said:
24 hour count down until Cyberknife. The Trileptal isn’t working well enough and it is making me a ding dong. I hope this works. 2 weeks to months to know. I’ll update you all. Wishing you all a pain free day.
I had cyber knife in December and it has helped me greatly. I had a few problems in the beginning. Brain swellin they just put me on steroids two times. I am 98% pain free. iT WAS well worth it. I am doing well as of now.
Denise I had CK less than 1 month ago. I can tell a difference already. No electric shocks. Still having some aching-like feeling from time to time, or sometimes I can touch my lip and feel tiny weak pin pricks on my cheek. But as for the big electric shocks they are pretty much gone. I was told not to expect success for 2 - 3 months. Looks like it is well on its way. I am taking Tegritol still and will continue till my next Dr. appointment in June. The CK treatment is looking good for me too.
Denise Petrillo said:
I had cyber knife in December and it has helped me greatly. I had a few problems in the beginning. Brain swellin they just put me on steroids two times. I am 98% pain free. iT WAS well worth it. I am doing well as of now.
I had cyberknife done. They make a plastic net screen to fit your face to hold it still during the treatment. that is attached to the table so your head won't move during the procedure. There are so many holes (screen) that it is very comfortable, and I just said "spa" softly to myself to stall any thoughts of claustraphobia. The only uncomfortable thing was the back of my head after not moving for over an hour but there is no avoiding that and not a big deal. They told me I could return to work that day, do not follow this advice, I was wiped out, and spent the rest of the day on the couch. Able to return to work the next day. I have been able to gradually cut meds down to 1.5 oxycarbazeprines twice a day instead of 4 twice a day. Yay! The cold is still bothering my face, but overall things are better.
I had cyberknife done. They make a plastic net screen to fit your face to hold it still during the treatment. that is attached to the table so your head won't move during the procedure. There are so many holes (screen) that it is very comfortable, and I just said "spa" softly to myself to stall any thoughts of claustraphobia. The only uncomfortable thing was the back of my head after not moving for over an hour but there is no avoiding that and not a big deal. They told me I could return to work that day, do not follow this advice, I was wiped out, and spent the rest of the day on the couch. Able to return to work the next day. I have been able to gradually cut meds down to 1.5 oxycarbazeprines twice a day instead of 4 twice a day. Yay! The cold is still bothering my face, but overall things are better.
Winegal, I had good results from CK also. I still have issues with neuropathy, and occasional manageble shocks. But its no big deal. Before CK it was like an electric jackhammer in my face. Now I take 2 Lyrica/day, 1 Elavil at night. No big deal.
