My experience with Trigeminal Neuralgia-CyberKnife Info
Posted , 9 users are following.
I was diagnosed with TN in 2008. I was 47 and physically and mentally healthy. Initially I thought I needed a root canal, but dentist said he could not find anything and sent me to an oral surgeon who immediately pulled my tooth. So now I am missing a tooth and the pain is still intense. I finally diagnosed my condition and made an appointment with a neurologist who confirmed my diagnosis. He started me on a few drugs and we finally landed on oxcarbezipine which worked really well after it got in my system. I can't remember the exact length of time it took for relief, but I remember it did not happen immediately. This drug worked for years and I became accustomed to the side effects of memory loss, stuttering, fatigue. I made mysely run, bike and just stay as active as possible. I would actually take myself off the drug because I felt pain free and wanted to feel as normal as possible. Whenever I would feel a tinge of pain return, I would just go back on the oxcarb and it would work as it got back in my system. I continued this for the last eight years.
In late June and early July 2016, my son and I went to Philmont in NM for a two week backpacking trip at altitudes of 11,000 feet. I had not been taking my meds for a few months and felt great. Of course, it came back at the very worse time and I had no meds so I just had to tough it out. I got back home to Birmingham, AL and got back on my oxcarb immediately, but it had stopped working. Once I figured out that I was in trouble, I made an appointment with a neurosurgeon, Dr. Swaid Swaid, here in Birmingham. He was great and he knew exactly what I was going through. We discussed options and I decided to go with the CyberKnife.
He scheduled me for the next week for three sessions-Tues, Wed, and Thurs. Each session was about an hour long and there was no pain at all. I was comfortable, but a little drowsy after each session.
This was three weeks ago. I had a follow up with Dr. Swaid yesterday. My pain is still here, but it's a thud instead of an electric jolt. I even had a few hours two days ago when I felt completely normal and pain free and relaxed. My lip on the side of the pain is a little numb, but I can still smile and I'm not drooling. I am still having some electric jolts, but they are becoming fewer and far between. Dr. Swaid said all of this is expected and is even better than normal. He told me most don't feel relief until three months after the procedure. He told me to stop taking as much oxcarb as I can tolerate so I'm down to 1200mg right now. My sight is a little fuzzy, but passable.
Anyway, three weeks past the CyberKnife and my life is getting better and I'm optimistic it will continue.
I just wanted to share my experince with the CyberKnife as I could find very little info when I was trying to make a decision. I hope a cure is found for this soon. It's hard to decribe to pain and despair one feels to someone who has not experienced it.
2 likes, 31 replies
paul49262 michael41261
Posted
Thanks again Paul
michael41261 paul49262
Posted
michael41261
Posted
Quick update-
Two days ago, I was feeling great and the world was looking good. Next thing I know, here comes the electric pain again. It has stayed with me a few days now, but when I woke up just now, I feel a little better. I am carrying major work stress right now and that may have caused it. I don't want to sound alarming-I am just giving my experiences to everyone and this is also serving as a journal to myself.
michael41261
Posted
It's been seven days since my last update so I guess it's time for another. I'm still having pain and it's been five weeks since my Cyber Knife. I went to a college football game on Saturday and it was an all day event. I walked around the very big campus with my daughter and drank some beers and felt great all day. I took my oxcarb as scheduled and had no unruly pain. I was able to talk to friends and carry on normal conversations. Today (Tuesday) has been very tough. Terrible morning, but as day wore on I did feel less pain. But this morning was almost unbearable. I had to drive 5 hours to see a client and my TN pain was shooting through my head like electric needles. I was hoping the Cyber Knife would be helping more by now but I'm remaining optimistic that I will see good results in the future.
I know that there are people out there that are in despair and feel hopeless. Believe me, I understand. Ten years with this horrible condition has made me think all kinds of terrible thoughts. I hope that some type of cure or even something that will give us some relief will come soon. Be strong and keep being thankful for your life.
anabelle36379 michael41261
Posted
I've just recently been referred to a neurologist in the UK for trig. So much pain all the time ! I woke up one morning at 2am with the pain and then my life changed. I'm 23 years old. It's great to see that other people are finding methods that help. I'm on naproxen and amitriptyline and ibuprofen paracetamol and codiene just to help and it doesn't always work, I'm just tired all the time because this is so exhausting! Today, this eve, I bought a really small headed toothbrush and was able to brush my teeth properly for the first time in a few weeks, this makes me feel sick and happy at the same time. This is such a horrific thing. Sometimes I'm in so much pain I can't speak i can barely breathe and I sit there dribbling and I just feel so terrible. I hope they offer treatments like yours in the UK, my life has totally changed because of this.
michael41261 anabelle36379
Posted
I'm sorry to hear of your diagnosis, Anabellle. You are right in that TN is a huge life changer. I hope your neuro is good to you. I had great luck with oxcarbezepine for many years. It eventually stopped working, but it kept me totally pain free for years. You can learn to live with the side effects of almost any drug if it takes away this horrible pain.
You'll find that codiene and other pain killers won't help. They will just make you very tired and nauseated.
You may have good days and bad days and may your good days be great and your bad days be few.
Stay strong.
anabelle36379 michael41261
Posted
Can I ask- what is cyber knife? The only 'long term' treatments that I have been given as options are insane. My GP was talking about resetting my jaw to relieve the nerves and potentially taking my back teeth out 😳 And keyhole surgery on the nerves in my jaw. This is a scary thought.
michael41261 anabelle36379
Posted
CyberKnife is a machine that uses radiation treatment to target the nerve with the goal of killing it. I believe Cyber Knife puposes are mainly used to destroy tumors. Do a Googlr search on it and you will find some good info on it. It's a big machine and the patient is secured on a table as the machine moves around your face and zaps the nerve from many different angles.
susan70485 michael41261
Posted
michael41261 susan70485
Posted
When the meds stopped working is when I saw a neurosurgeon and decided to get the Cyber Knife procedure. The Dr. got me in quickly and although I feel better, I'm still experiencing pain. I am still taking oxcarb just for safety purposes.
susan70485 michael41261
Posted
Thanks. I reread the chain. Sorry that I forgot the whole line started with your replay to me. I'm glad you are feeling better. Doctors have told me it takes several months -years to feel better. Sounds good that you are not drooling. Somehow that is most troubling to me. I hope you keep improving.
Susan
michael41261
Posted
I haven't posted in many weeks and wanted to give an update on my progress after my CyberKnife procedure. It's been almost three months since my last CyberKnife session (August 18, 2016). Life has really become almost normal again. I am still taking 1200 of Oxcarbezepine, but my Neuro told me to start weening off of it slowly. I saw him two days ago and and he has officially released me. He wants me totally off the meds over the next few months.
I am back to feeling comfortable at work and in society. I've started working out, riding my bikes, and running again. I still have minor pain when eating, but I've become so accustomed to it that I just deal with it.
Relief did take a few months and I really wasn't sure that I would ever feel right again. The normal feeling started coming back gradually, but it doesn't happen overnight.
The Neurosurgeon I saw was Dr. Swaid Swaid in Birmingham, Alabama. He's a great guy and I know he understands how horrible the pain is. He's a caring, positive doctor and I am so fortunate that I was able to have him make me well again.
I know the despair and pain TN brings. Don't give up. There are solutions.
fed-up michael41261
Posted
i shall certainly put this to my neuro!
mark59788 michael41261
Posted
Thanks for following up. Very helpful for someone early on as I am!
Mark
michael41261 mark59788
Posted
Mark,
It's now been a little over three months since my Cyber Knife and I feel like I'm almost 100% again. Yesterday was the first day that I've not taken my oxcarbezepine. Although I still feel the pain when eating or brushing my teeth, it's nothing like it was. Getting better every day!