Sugery or Cyberknife?

I just left the Nerosurgeon's office and now have a decision to make. The meds are not working so do I have the Cyberknife , no down time and a 70% chance it works or surgery with 4 to 6 weeks down time and a 90% chance it works. The percents point to surgery but being the main wage earner (my husband is disabled)that won't work plus it is brain surgery. The Cyberknife sounds good because it means no down time and it is not surgery.

Help I don't know which way to go!!!

I will be seeing a Nerosurgeon in two weeks to discuss the same options, Did they discuss the side effects of either procedure, , in my mind, I guess I would try the gamma knife first, as you said it is not invasive surgery. please post your decision, as I am interested to learn from you experience

John

Hi can you clarify what is Cyberknife?

Does Cyberknife & gamma knife are offered only to TN type I?

Warning- if you have the cyberknife and it does not work -- when you go to have MVD - stats go less in your favor.

My very prominent surgeon said on a scale of 1-10 that MVD is a 1 for brain surgery risk.

I would go have another without hesitation with him.

Do as much research here as you can and on http://www.fpa-support.org/

If you have to- round up all the resources you can to survive for 3 weeks post surgery.

If you decide that the other is for you - that's fine too..... You must have TN1 for those answers you got.

Keep posting and asking!

Realize also, that many who come here have had failed procedures, so the negative picture here is skewed.

when the meds i was prescribed did not work, gamma knife was suggested ... i had the gamma knife and a month later the pain was worse than before the gamma knife

when the meds i was prescribed did not work, i was advised to have gamma knife ... i had the gamma knife and a month later the pain was worse than before the procedure

I faced the same exact choice, and this is what my neuro said, and please keep in mind this is just one doc's viewpoint, and many different ones have different perspectives.

Essentially, he said that if I went with the gamma knife and it doesn't work, then my only remaining option would be the MVD. However, he felt that the chance of success with the MVD in that case would be lessened, with a higher likelihood of complications.

His explanation was based on the idea that the gamma knife is essentially, intentionally damaging the nerve as the means to address the symptoms.

I spent some hard days going over this very decision, and ultimately I went with MVD with the mindset as follows: I felt like I had a gun with two bullets, one being the gamma knife and one being the MVD. If I shoot the gamma knife bullet and miss, it is more likely that the MVD bullet will never fire. If I shot the MVD bullet and it missed, I could still fire the gamma knife bullet with the same exact chance of success.

So, I went with MVD.

I don't know if that's helpful or not, but that's my own story. Good luck with your decision, because I know it's very difficult.

that is a verrrrrry good analogy --- That's exactly what I figured right out the gate -- thanks to THIS site !!!!!

i was in so much pain and not thinking clearly ... after trying different medications and not being able to tolerate them, my neurologist sent me to the neurosurgeon ... prior to being sent to the neurosurgeon, my neurologist told me that we had several medications we could try before the gamma knife ( obviously, we didn't try them) ... i did not know there were other options than gamma knife ... shame on me for not researching ... i was told by both, the neurologist and neurosurgeon that i had a high percentage rate of getting rid of the pain ... i was not told it would be short lived (one month) ... i have my first appointment with my neurologist this month since the gamma knife ... i don't know if i want to be confrontational with him and ask him why he told me my only options were gamma knife and why didn't we try all the medications ... i learned about the different medications on this support group ... i called my neurologist and asked for the muscle relaxer, baclofen ... the pain is still there but i can tolerate it ... i had two root canals a short time ago and now i am experiencing some "new pains"

Could you send me your experiences with MVD

surgery? I am going for MVD end of Sept 2012.

Thanks

Sara, ... i had gamma knife

Mstass, The first Neuro I went to suggested Gamma, but I was not satisfied, I want MVD,so I asking about that since he did not want to do MVD and found out that RF Rhizotomy may be better than Gamma, please see below:

If you're going to do one of the peripheral surgical procedures rather than an MVD, then I'd say that RF Rhizotomy has the best outcome statistics. About half of all RF patients are pain free for seven years. Many for longer. Glycerol rarely lasts longer than a year to two years, and Balloon compression is somewhere between the other two. All three tend to be associated with long term loss of sensation in the cheek -- a desired outcome for many patients. And not all patients get even initial relief, though RF tends to be around 90% successful initially.

Gamma Knife has much less predictable outcomes, ranging from numbness to parasthesia to almost immediate recurrence of pain. Anesthesia Dolorosa is somewhat less likely with GK. I've talked with people who have had up to four RF Rhizotomies over a period of years. In general, the outcomes are not as positive for second and subsequent procedures in any of these other "destructive" procedures.

RF Rhizotomy is vastly different from Gamma Knife. GK is a form of radiation treatment which delivers a large number of collimated "beams" of gamma ray radiation to a target zone from a wide variety of angles to the head. This procedure also creates a lesion on the nerve, but it is much deeper and wider than RF Rhizotomy, with potentially further side effects over time. There is a lifetime limit of two GK procedures because of the amount of radiation involved.

For ATN patients, the picture is less optimistic than for Typical TN patients. Some surgeons recommend against any of these procedures for ATN patients. One rationale for that recommendation is that ATN seems to be caused by a distributed mechanism that affects an extended section or sections of the nerve. It is thus more difficult to locate a discrete point where causing a lesion on the surface of the nerve is likely to conclusively reduce pain sensitivity.

The following large-scale study report on RF Rhizotomy may also be useful reading:

http://www.alisavas.com.tr/trigeminal_nev/Trigeminal%20Neuralgia.pdf

I would suggest that you seriously consider finding a better trained neurosurgeon who is NOT associated with a Gamma Knife Center, and who thus has no personal or institutional investment in recovering the cost of such a Center by referring patients.

Good luck

Has any one have any experience that can share about MVD surgery. Meds are not working for me any more after 8 years. I am going for MVD surgery in late Sepetmber.

Thanks for all your support and advise.



Mitzi said:

Mstass, The first Neuro I went to suggested Gamma, but I was not satisfied, I want MVD,so I asking about that since he did not want to do MVD and found out that RF Rhizotomy may be better than Gamma, please see below:

If you're going to do one of the peripheral surgical procedures rather than an MVD, then I'd say that RF Rhizotomy has the best outcome statistics. About half of all RF patients are pain free for seven years. Many for longer. Glycerol rarely lasts longer than a year to two years, and Balloon compression is somewhere between the other two. All three tend to be associated with long term loss of sensation in the cheek -- a desired outcome for many patients. And not all patients get even initial relief, though RF tends to be around 90% successful initially.

Gamma Knife has much less predictable outcomes, ranging from numbness to parasthesia to almost immediate recurrence of pain. Anesthesia Dolorosa is somewhat less likely with GK. I've talked with people who have had up to four RF Rhizotomies over a period of years. In general, the outcomes are not as positive for second and subsequent procedures in any of these other "destructive" procedures.

RF Rhizotomy is vastly different from Gamma Knife. GK is a form of radiation treatment which delivers a large number of collimated "beams" of gamma ray radiation to a target zone from a wide variety of angles to the head. This procedure also creates a lesion on the nerve, but it is much deeper and wider than RF Rhizotomy, with potentially further side effects over time. There is a lifetime limit of two GK procedures because of the amount of radiation involved.

For ATN patients, the picture is less optimistic than for Typical TN patients. Some surgeons recommend against any of these procedures for ATN patients. One rationale for that recommendation is that ATN seems to be caused by a distributed mechanism that affects an extended section or sections of the nerve. It is thus more difficult to locate a discrete point where causing a lesion on the surface of the nerve is likely to conclusively reduce pain sensitivity.

The following large-scale study report on RF Rhizotomy may also be useful reading:

http://www.alisavas.com.tr/trigeminal_nev/Trigeminal%20Neuralgia.pdf

I would suggest that you seriously consider finding a better trained neurosurgeon who is NOT associated with a Gamma Knife Center, and who thus has no personal or institutional investment in recovering the cost of such a Center by referring patients.

Good luck

I have the same decision to make I guess. I am going for MVD surgery late Sept. please, let me know any info you have about this surgery?

any info is appreciated.

Sara -- is your doctor very very versed in MVD? Have plenty of TN patients? On our list of favorite docs here?

Sara, So far I have read Yvette's and KC Dancer's story here, I also have a coworker who had MVD surgery on both sides of her face, within 8 month apart, she is doing very good, just a few mild shocks from time to time, no mediation. Her Neuro told her that it takes a while for the nerve to heal 100% from the handling during the surgery. I'm scheduled for MVD surgery this Wednesday the 8th, I will try to keep everyone posted when I can.



sara said:

Could you send me your experiences with MVD

surgery? I am going for MVD end of Sept 2012.

Thanks

Thanks Mitzi for the additional info.

I am going to Stanford Hospital in California Neurology Dept. for my surgery. My Dr. had done thouands of MVD surgery and is very capable based on the info I have researched about him. I have no worries about his capability. Its just I am so much in pain now and very scared at the same time.

Please, keep us posted on your surgery and I wish you best of luck.

Mitzi said:

Sara, So far I have read Yvette's and KC Dancer's story here, I also have a coworker who had MVD surgery on both sides of her face, within 8 month apart, she is doing very good, just a few mild shocks from time to time, no mediation. Her Neuro told her that it takes a while for the nerve to heal 100% from the handling during the surgery. I'm scheduled for MVD surgery this Wednesday the 8th, I will try to keep everyone posted when I can.



sara said:

Could you send me your experiences with MVD

surgery? I am going for MVD end of Sept 2012.

Thanks

I believe gama knife surgery, radio frequency, glycerol & alcohol injection all involve destroying partial or all the three nerves, however with such treatment my experience tells me that pain comes back within 2 to 3 years, although I was temporarily relieved of TN pain with the injection in trigeminal ganglion, I ended up with 24x7 anasthesia dolorosa (annoying slow burning pain)
I understand with MVD the surgeon don’t destroy the nerves but he relieves the pressure on the nerve by placing Teflon between the nerve & offending blood vessels.
I did not have option of MVD as in 1963 this treatment was new & very few surgeons were skilled & practising it. I was not even aware of it. Hence I had nerves severed.

Met with Neurosurgeon yesterday, no guarantee either will work and
neither offers a permanent fix. was told the following MVD (high risk, but
offered the longest relief - average 10-15 years, Gamma knife, low risk, relief average time 7-10 years, but the nerve is damaged and when pain comes back, options are limited. like others indicated lower chance the MVD would help and
the older I get, MVD surgery would not even be an option, I am 51 and need to work another 15-17 years, and meds are making that difficult to do successfully.






John said:

I will be seeing a Nerosurgeon in two weeks to discuss the same options, Did they discuss the side effects of either procedure, , in my mind, I guess I would try the gamma knife first, as you said it is not invasive surgery. please post your decision, as I am interested to learn from you experience

John

Sara, go to the MVD group on this forum. There are many experiences of MVD shared there, including my own.

For what it is worth, my neurosurgean was strongly against Gamma Knife. I had already come to this conclusion in my research as well. I had successful MVD on June 30th at Duke and have not felt TN pain since that day.