I go in on Tuesday for my cyberknife consult. Yes the Doc can spout all kinds of gobbletygook on what could happen but I want to know from a patients view. What have those who have been through it experienced? What different things can I expect? Will I look like I’ve had a stroke? What side effects happen most?
Veronica, I am so sorry things went so badly for you. It sounds indeed like someone messed up in your case.
I was given only 2 options for my TN, Gamma knife or cyberknife. Since there is no compression of my nerve theres nothing to do surgery on. The myelin around my nerve is just gone. They don’t know what caused the demyelination either. One suggestion of it was inhaling formaldahyde when I was living in a FEMAtrailer after Katrina, but theres no confirmation on that.
As on your comment about the immune system and shingles, yes I know those things all too well. It sounds as if the shingles actually got int your optical nerve and thats the cause of the blindness. Shingles can cause both blindness and deafness if it gets inside like that. I get if quite often on my back. I had a liver transplant in 1993 so my immune system is kept on the low side.
I dont really have any other options and it seems the cyberknife is better than the gamma, I guess Ill know more after the consult.
Again, I am so very sorry things went so bad hugs tight
This will my my 1st of any procedures on my TN. Like I told Veronica there is nothing pressing on the nerve, the myelin is just gone.
I can handle the lumbar puncture so long as they dope me up nicely. They did one on me in 1993 before my liver transplant.
I will post back up after Tuesdays consult.
I guess Im very lucky in that my fiance not only understands what Im going through, he has supported me 110% in everything. I am so sorry for the loss of your of SOs.
gamma knife and cyberknife have little to no long term data on the safety of either procedure. both treatments can cause radiation induced necrosis of the brainstem and/or brain matter as a long term consequence. this usually occurs after one year or later.
beware of any practitioner who pushes this procedure over all others, or tells you these procedures are your only option; this is sometimes because of political and financial reasons, such as quotas needing to be filled on the unit, or the practitioner being paid for utilizing the machine. seek a second opinion before making a final decision.
ask your practitioner for statistics on patients who have had this procedure. how many successes? failures? any catastrophic side effects? does the practitioner follow up with TN patients to see if they are still pain free? these are the questions i would be asking before i committed myself to a major destructive procedure.
good luck,
vesper
What they said, Christy!
I’m glad it’s a ONLY a consult. Please be certain to have many, many and many more questions.
As Vesper said; “ask your practitioner for statistics on patients who have had this procedure. how many successes? failures? any catastrophic side effects? does the practitioner follow up with TN patients to see if they are still pain free? these are the questions i would be asking before i committed myself to a major destructive procedure.”
I’ll be watching for your update! Take care, bob
Sorry to hear such bad and negative responses. Christy, I had Gamma Knife and it was a little tougher than I expected. The recovery time was a little longer. It took about a week for me to begin to feel better from the procedure. My TN pasin began to fade reather quickly at first and then it got real bad real fast. I began to think that it had failed and actually consideed repeating it as soon as possible. My doctor increased meds alot and told me to try to hang in 6 more weeks. He said he tought I would see a big difference. Boy was he right. My pain began to lessen and I began to back off some meds. I have found a balance of controlling pain with out being drugged out. As of now it has been 42 days since I had shocking pain. For the last 8 days I have felt like myself again. The anxiety is even getting better. I feel like I have at least part of my life back. I owe it all to Gamma Knife! Good luck, hope you have a successful procedure.
Ok so I went to the consult. It was a mixed bag. I feel better about the procedure as a whole BUT Im not so sure I am ready to be their guinea pig. Turns out that hospital has never used their cyberknife for TN. Granted the doctor in charge of the unit is very experienced… using it for cancer treatments. We both agreed I should wait until Jan. 1 when my insurance plan shifts to allow more doctor visits per year. He said to talk to the neurosurgeon and get a referral to Jackson for a 2nd opinion and a look at other options. He was in fact a little dismayed that I had only been offered cyberknife and Gammaknife. He also recommended I call John Hopkins and Stanford(even visit them if possible) and talk to other doctors and patients who had had experience. SO for now its wait and see.
I am very pleased with this doctor, hes very open, very honest and doesn’t BS or push a patient.
I began having symptoms about 2 weeks before Xmas 2007, it wasnt until March that I was finally diagnosed with TN and tis was only after I went back my old clinic. The clinic using kept telling me it was a sinus infection. AND they REFUSED to give me any pain killers. It was pain that drove me to drive 90 mins away back to my old clinic. They knew me and knew I would not ask for anything I didn’t feel I absolutely needed. My doc then knew I hated pain killers due to the damage they can do to the liver, a big deal for a post-liver transplant patient.
I had Gamma Knife, which I think is annother name for the same thing…It was a breese for me, because I had to be put out for it - I also have Parkinson’s and we don’t tremor when asleep, so I was put under.
Anywhoooo, no facial drooping, but be prepared for quite a bit of facial swelling from the frame. I looked very much like Shrek without the green coloring! This goes away in a few days.
I had temporary numbness on the side they worked on, but really no other side effects.
No, they are different. Theres no frame with cyberknife, these a mesh helmet that is not screwed into the skull.
Yes, to formulate thoughts…
I could ‘cut and paste’ articles containing Cyberknife vs Gammaknife / Gammaknife vs Cyberknife until those proverbial ‘cows come home’.
I had two (2) Stereotactic Radiosurgeries, using a Gamma-type machine.
I also had a prior MVD (sounds criminal - bad driver at best).
“Talk To Your Doctor”… about BRAIN SURGERY! ; ) bob
Sadly they do know what causes the demylenation of the TN nerve it’s call M.S. There are only 3 ways to get typical TN 1. M.S. 2. tumor or 3. Compression from a vessel or something of the sort. My CT, MRI and every scan known to man showed nothing - yet when they opened me up there was tumor and a compression from a vessel and then the nerve was so diseased from my 6 yrs of MS dx.
jan
Christy Lightfoot said:
Veronica, I am so sorry things went so badly for you. It sounds indeed like someone messed up in your case.
I was given only 2 options for my TN, Gamma knife or cyberknife. Since there is no compression of my nerve theres nothing to do surgery on. The myelin around my nerve is just gone. They don't know what caused the demyelination either. One suggestion of it was inhaling formaldahyde when I was living in a FEMAtrailer after Katrina, but theres no confirmation on that.
As on your comment about the immune system and shingles, yes I know those things all too well. It sounds as if the shingles actually got int your optical nerve and thats the cause of the blindness. Shingles can cause both blindness and deafness if it gets inside like that. I get if quite often on my back. I had a liver transplant in 1993 so my immune system is kept on the low side.
I dont really have any other options and it seems the cyberknife is better than the gamma, I guess Ill know more after the consult.
Again, I am so very sorry things went so bad **hugs tight**
They told me I had no lesions so there was no MS. I am going to another Neurologist hopefully soon and will get a 2nd opinion. I have shown some of the early onset MS symptoms tho.
Sorry Veronica, Things went so badly for you. My mom suffering with right side pain in her chin since 2003. More than 40 doctors diagnosed since pain started, 3 time RF done in 2006, 2008, 28th may 2010. after the third RF she got a severe pain through out the day, screamed and struggled for life. She done CF in 16th June 2010 in HCG cancer centre (Banglore, India). Sever pain starts again at 22nd June 2010. We shifted to the nearby hospital in our town, treatment doesn't works, again we shifted to Erode Trus Hospital on 1st July 2010. She slowly recoverd at 28th July 2010. Now She's doing good with lot of medicine and drowsiness. Slight pain occurs once in a month.
- She had given 56Gy radiation @ CF treatment, I think that might be high for u while CF treatment. Anyway past cannot be rewind. Discuss lot of things with this support group, that may help to control ur pain. While i discussed here i got some idea and my mom stopped eating fatty diets (Cheese, butter, ghee, Oil, Cake, fried foods, and some bakery foods), that too helps to control her pain.
So pls. don't loose any hope. We keep u in our prayers to get well soon.
Regards
- Rajkumar & Family
Veronica Yee said:
i had cyberknife and I wish I never did it and went for brain surgery instead. However NOT with Kaiser.
Cyberknife did the following 4 t hings to me:
1) increased my pain triple-fold for 3 months, numbed my right side of my face (where TN affecged) and my rt eye went dry and therefore help cause #2.
2) weaken my immune system and the viruses in my system (measles, chicken pox, whatever you had growing up spread. I am now blind in my right eye. It is diagnosed as shingles from the chicken pox. It is also known as herpes symplex 1 (i.e. chicken pox) I have been taking medication 5 huge tablet a day for 5 months now and to no help. Now I am on some steriods to help get rid of the shingles. Presently, I am blind in my right eye.
3) after the cyberknife, I also suffered skin infections and ache all over the RIGHT side of my head and face. To date, I cannot get rid of the skin disease. I tried everthing.
4) I am suffering from short term memory and it started a month or so after the cyberknife.\
5) I fell into a deep depression and did not want to live anymore. For a long time, I think they missed, but I have no recourse. NO lawyer will take my case because they make you sign a release of liability.
6) Dr Adkins, the one who invented CyberKnife is who I consulted with and it was his assistance who did the radiation treatment. I should have stopped it; I felt strange in the tube I was put in but I had no idea what was going on. The pain tripled the next day.
7. I am now on long term disabilty, my career is ruin, I can barely pay my bills and I have an 11 yr old son. His father deserted me when the pain got worse. He did not love me enough to help me.
8. I had this done in 2008, August and to date, still feel the TN and now I am blind. Last, I lost a lot of hair on my right side. All my leisons are on my right side; I am blind iny right eye. I broke my right arm due to bone weakness.
The fact that I never had any of these symptoms since the cyberknife tells me it is the direct cause of my condition today. I ,ay have to undergo cornea replacement if the steriods do not work. It will be months ntil I find out. I had CyberKnife done in Standford Hospital and by the inventor of the damn thing.
He lied to me. He said I could be cured as little as two weeks. It is going on two years and I have not yet recovered. Also, my liver is bad from all the medication I had to take. I don't know what will happen to me but it is my son who keeps me going.
Think twice the procedures is not 85% successful. The mesh put on your face is plastic and if aligned wrong, they can miss and I believe that is what happened to me.
Excuse my typos, I can see very well and my right hand does not work very well.
Good luck if you still plan to go with brain radiation. It is worse than you think a million folds.
v.
Veronica Yee said:
i had cyberknife and I wish I never did it and went for brain surgery instead. However NOT with Kaiser.
Cyberknife did the following 4 t hings to me:
1) increased my pain triple-fold for 3 months, numbed my right side of my face (where TN affecged) and my rt eye went dry and therefore help cause #2.
2) weaken my immune system and the viruses in my system (measles, chicken pox, whatever you had growing up spread. I am now blind in my right eye. It is diagnosed as shingles from the chicken pox. It is also known as herpes symplex 1 (i.e. chicken pox) I have been taking medication 5 huge tablet a day for 5 months now and to no help. Now I am on some steriods to help get rid of the shingles. Presently, I am blind in my right eye.
3) after the cyberknife, I also suffered skin infections and ache all over the RIGHT side of my head and face. To date, I cannot get rid of the skin disease. I tried everthing.
4) I am suffering from short term memory and it started a month or so after the cyberknife.\
5) I fell into a deep depression and did not want to live anymore. For a long time, I think they missed, but I have no recourse. NO lawyer will take my case because they make you sign a release of liability.
6) Dr Adkins, the one who invented CyberKnife is who I consulted with and it was his assistance who did the radiation treatment. I should have stopped it; I felt strange in the tube I was put in but I had no idea what was going on. The pain tripled the next day.
7. I am now on long term disabilty, my career is ruin, I can barely pay my bills and I have an 11 yr old son. His father deserted me when the pain got worse. He did not love me enough to help me.
8. I had this done in 2008, August and to date, still feel the TN and now I am blind. Last, I lost a lot of hair on my right side. All my leisons are on my right side; I am blind iny right eye. I broke my right arm due to bone weakness.
The fact that I never had any of these symptoms since the cyberknife tells me it is the direct cause of my condition today. I ,ay have to undergo cornea replacement if the steriods do not work. It will be months ntil I find out. I had CyberKnife done in Standford Hospital and by the inventor of the damn thing.
He lied to me. He said I could be cured as little as two weeks. It is going on two years and I have not yet recovered. Also, my liver is bad from all the medication I had to take. I don't know what will happen to me but it is my son who keeps me going.
Think twice the procedures is not 85% successful. The mesh put on your face is plastic and if aligned wrong, they can miss and I believe that is what happened to me.
Excuse my typos, I can see very well and my right hand does not work very well.
Good luck if you still plan to go with brain radiation. It is worse than you think a million folds.
v.