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My experience with Trigeminal Neuralgia-CyberKnife Info

Posted , 9 users are following.

michael41261
michael41261

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

31 Replies

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  • susan70485
    susan70485 michael41261

    Posted

    Thank you. That's what I wanted to hear about. Sounds as though your experience with cyberknife is positive. My Kaiser surgeon said it was once only. Why did you have three sessions?

    • michael41261
      michael41261 susan70485

      Posted

      Susan, my neuro told me that it may take 5-6 sessions based on the results of my MRI.  When he got the MRI back, he determined that three would be needed.
    • TrudysFaith
      TrudysFaith michael41261

      Posted

      Michael,

      Thank you for posting your uplifting updates on your experience with CyberKnife. I was just diagnosed today with TN and I'm devastated. I'm a 44-year old wife and mother of a 2 & 5 year old and am afraid of how this will impact my family. Everything I find online about TN is so negative; therefore, I found hope in your updates. I'm otherwise very healthy and determined to diminish the effects and pain of TN with diet and above all, with faith. I hadn't been to church in years, and this pain has brought me back to God. God bless all if you suffering through this pain. May a permanent cure be found soon!

  • susan70485
    susan70485 michael41261

    Posted

    Why did you have cyberknife rather than staying on medication?

    Do you feel more lucid/less dizzy now?

    • michael41261
      michael41261 susan70485

      Posted

      The meds stopped working so the CyberKnife was my next option.  I had to try something. 

      I am still dizzy and have pain, but it's more of a thud than the electric jolts I had before the CyberKnife.  

  • Stupid1
    Stupid1 michael41261

    Posted

    Michael 41 261

    I am happy that your neurosurgeon gave you a choice of the CyberKnife my surgeon only gave me one choice MVD.

    Thanks for coming to The Forum to share your experience with us

    I had MVD and I'm still getting slight pain in my gum, my head I'm hoping this crawling in my head will go away after the swelling goes down.

    If above persist, my next option will be gamma or cyber.

    I definitely will go to a different Neurosurgery I am thinking about oh you Medical Center in Oklahoma.

    So at least I won't have to wait on an appointment because I already had appointment schedule October 3rd of this year and I never cancelled it doctor there and I'll tell her of this year.

    God Bless

    us and keep us and give us peace

  • Stupid1
    Stupid1 michael41261

    Posted

    Michael 41 261

    I am happy that your neurosurgeon gave you a choice of the CyberKnife my surgeon only gave me one choice MVD.

    Thanks for coming to The Forum to share your experience with us

    I had MVD and I'm still getting slight pain in my gum, my head I'm hoping this crawling in my head will go away after the swelling goes down.

    If above persist, my next option will be gamma or cyber.

    I definitely will go to a different Neurosurgery I am thinking about oh you Medical Center in Oklahoma.

    So at least I won't have to wait on an appointment because I already had appointment schedule October 3rd of this year and I never cancelled it doctor there and I'll tell her of this year.

    God Bless

    us and keep us and give us peace

    • susan70485
      susan70485 Stupid1

      Posted

      I have been told that pain should be relieved right away after MVD so cyber/gamma may be the next step  rather soon.
    • Stupid1
      Stupid1 susan70485

      Posted

      Susan 70486,

      My shocks so far r gone, since out of hospital gums throb a bit, but not like b4 MVD.

      I am still on a lot of meds for my headaches , neck spasms, surgeon cut some muscle in neck. He has not informed me of this, it was his P.A. who told me. I was getting really bad headaches almost every 2 hours in the hospital, stopped a few days before I got out (I was pushed out.) The headaches were almost every 2 hrs., and gave me bad dreams from the narco. Lots of throwing up.

      Found out I had stroke from my neurologist not surgeon or his P.A, Lee Langley.

      Can't get doctor to call me with answers /some questions I have about should I still be taking a Norco for headaches, or

      Meds for slight pain in gum, numbness on labia and numbness top of thigh.

      This numbness has moved down to right lower leg. Called his nurse, she said she can't get him 2 answer my questions, so will be asking him on Sept., 13, 2016.

      Since I have bn home notice right nostril feels numb and stuffy. There is no nosal drainsge.

      Not hayfever my nose never gets stuffy I sneeze a lot until I use nose spray

      stops sneezing.

      I am not so drugged up so that I can't ask him when is the double vision going away, he never answered my questions when I was drugged up

      When is the numbness on top of my right thigh going away?

      When is double vision hoing away?

      When is the numbness on my labia right side opposite of where I had surgery going away?

      When is crawling under my scalp on my side MVD surgery was going away.

      I want 2 ask is it just sign of sensation returning to my scalp.

      I did ask these questions, but I was so drugged up I guess he didn't tell me because he cared only about MVD.

      My insurance company sent me to opthamologist, because my surgeons P.A., gave me one that was way out in October.

      I was in hospital from July 27, 2016, to August 8, 2016 Insurgent PA wanted me to go to a eye doctor on October 2016.

      So when I do go back to the opthamologist it will be on the Sept. 19, 2016, she last saw me August 11, 2016.

      Any others out there who have had MVD surgery and the doctor actually did follow ups?

      How many here sent their surgeon running away from questions? Dr. Phillips act like he didn't really want to have anything to do with me once I started complaining.

      Same problems I was having in hospital, and he let me go home with.

      I saw my surgeon before my surgery one time two days after and about 5 days before I went home. My husband saw him twice before surgery and close to the time that I went home.

      Hubby kept asking to talk with surgeon but he was to busy with other surgeries 2 take time out, not even one minute to come visit my hubby

      Oh! I forgot we saw him and follow up on August 11th 2016.

      That visit was scheduled because I was only supposed to be in the hospital for 3 days

      Only. No more MVD for me I have learned my lesson.

      If gums persist I'm going to a doctor who does gamma or cyber.

      God bless

      us and keep us and give us peace

  • michael41261
    michael41261

    Posted

    Sptmber 11, 2016.  So it's been a little over three weeks since my last CyberKinife treatment and thought I'd give a follow up.

    I have continued to have the normal TN pain since my CyberKnife, however it does seem to be subsiding.  Some days are better than others and I finding that the electric shocks continue to get less frequent.  I still have the thud thud thud pain, but that's tolerable to me.  I feel really good this morn-better than I've felt since the procedure.  My face is relaxed and the pain is with me, but it almost feels good compared to what I've been experiencing.  Talking still brings the electricity back, but it's getting better.  It's wierd how I've learned what to do in certain situations to keep the pain at a minimum.  I'm certainly not as talkative as I once was.

    I also had a few glasses of wine last night which is something I have not done since late June.  I don't really think the wine affected the TN in any way.

    I have a HUGE week at work this week and I will have to travel six hours from home and make numerous sales presentations.  I have a major meeting with a high level VP of an account that my company is pushing me to get on Tues at 930am.  I don't think I could have handled this last week, but I'm optimistic about getting it done this week.

    So anyway, I feel quite good about my direction with the CyberKnife and I can only see it getting better as time goes on.  I hope this helps anyone with questions on the CyberKnife treatment.  I will continue to post as time goes on.

    • susan70485
      susan70485 michael41261

      Posted

      Thanks. Good luck. I would appreciate continuing updates. In theory pain should subside in a couple of months, right?
    • michael41261
      michael41261 susan70485

      Posted

      The neuro said pain relief varies from patient to patient as does the numbers of treatments.  He was expecting me to start getting relief at six weeks and was very happy with my progress at three weeks.  He said some see relief at three months while others see relief at nine months.  He said overall success rate has been good for his patients.

      It was hard for me to find any good info on the CyberKnife treatments so I will continue to post in hopes that I can help others in my situation.

    • Stupid1
      Stupid1 michael41261

      Posted

      Michael41261,

      Hope everything is a great success and all the pain is gone from everyone on

      forum. If I had only known about this for him I wouldn't have had the MVD.

      Neurodurgeon only told me how the other ones were not lasting and that MVD would last for 10 years.

      If the others did not work I would not be able to get MVD, because of laser burning and cyber cutting.

      I see now that what I needed was to do as I said get that one opinion a second opinion a 3rd, 4th, 5th and even at 6

      Sometimes you have to look at life this way it definitely made me a better person.

      I will be going through my neighborhood and my community passing out flyers about the choices with horrible diseases like this.

      God bless

      us and keep us and give us peace

    • michael41261
      michael41261 Stupid1

      Posted

      Don't be hard on yourself.  There is no surefire cure and I'm not postive that my Cyber Knife will work and if it does, then how long will it last.  I think we are all taking our chances and I'm hoping that a cure will happen soon.  If my relief is temporary, so be it.  I have faith that other things are happening.  

    • Stupid1
      Stupid1 michael41261

      Posted

      Michael41261

      I was in perfect health, but since MVD, I have had MRIs, MRAs, bubble test and

      EKGs, just tired.

      Everything shows that I'm healthy in heart, brain in veins. I am a healthy person sitting in bed using a walker so as not to bump into things. I can't drive. and I'm sitting in a bed everyday can't walk 12,000 steps a day.all bcause like I had some stroke and they can't find out where it came from. My neurologist not the neurosurgeon. Is one that believes I had brain stem stroke ( Mini stroke). No One can tell me about the numbness. I really miss walking, I can't walk with one eye. My neurologist and primary care doctor say I am in perfect health. Primary care doctor wants to put me on high cholesterol drug, yet blood work came out good no diabetes, no high cholesterol but since neurologist said I had a stroke (brain stem stroke). PCP said to b safe take colestrol drugs, she even told me it runs in my family, but none of my family has high cholesterol . I do have Uncle who is 115y.o. LOL.

      These drug companies make a lot of money with these doctors.

      I'm going to get a new primary care doctor, and c neurosurgeon I had scheduled with in October. Who wants to c a doctors P.A., instead of doctor, his P.A. didn't operate on me.

      Not MVD that I am angry about it is surgeon no doing his job right. I was lead a stray.

      Is it safe to take cholesterol drugs if u don't have high cholesterol?

      God bless,

      us and keep us and give us peace

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