I am in need of some opinions and advice. I have suffered from TN for a little over 3 years now. I had the MVD procedure on 2/5/2009 and felt absolutely no relief from that procedure. I lost health insurance for a year and had trouble getting coverage due to the pre existing conditions that TN brought along. I finally got coverage and went back to my neurosurgeon this past Thursday. Within a matter of 20 minutes I was told that I had the Atypical TN and that the next step was to have Radiofrequency Thermal Rhizotomy performed and that he had an opening for me on Friday morning. After 3 years of living in misery I jumped at the chance to have some relief....sadly it didn't occur to me to ask exactly how I would feel afterwards. I had an oral surgeon that had done a nerve block on my left cheek several months ago and it was the only day that I had any relief from the pain and it was heavenly even if it was just for 8 hours. When I mentioned this at the neuro appointment I was told that it was a wonderful sign that I responded to the temporary block and that the RF should work just as well. I went in Friday morning and everything went very smoothly. I woke up feeling hopeful for the first time in months...went home and waited for the numbness from surgery ease up so I could assess how it was going to feel long term and I am sad to say that none of the numbness has gone away at all. I cannot feel the entire left side of my head. From the middle of my lips, my tongue, the left side gums, roof of my mouth, inside my left cheek, my left eyebrow, left eye, left ear, left hairline from my forehead down to my chin...nothing. Occasional painful bruised feeling that shoots up my left side next to my left eye...other than that no feelings....just a miserable numb, tingling feeling that is like half of my head has died. This is not how the short term block felt and to be honest I am scared to death that this is not going to get any better...that for the rest of my life half of my head will feel like it belongs on a dead person.
Is there anyone out there that has had this procedure that can tell me how I am suppose to feel??? Please contact me or leave a comment...I am pretty freaked out and I am not really comfortable calling the neurosurgeon until I hear some other opinions...he is not overly approachable.
Thank you all for reading and for any input you might have.
this is very recent and the numbness may lessen ,I would talk to your neuro about this .
I have had three rhizotomies after the first two I was very numb but it faded after a few weeks and was completely gone .
the last one was about three years ago ,I still have numbness from that ,half my tongue ,roof of mouth ,and half my chin ,I know you don't want to hear that ,yours is new ,the numbness may fade ,if not ,you do honestly get used to it ,and if it dosen't fade completely it does get better .
mine only really gets to me when I am tired ,my cheek feels stiff and I feel I lisp with my numb tongue ,but it is early days ,give it time ,try to relax .
Here is a link to the Face Pain Info where the procedure is described and possible outcomes. All the best and I do wish you had a more approachable Neuro!
I'm in the same boat - a neurologist I've been seeing since November has me scheduled for an occipital nerve block next Thursday, and if that works, then a radiofrequency ablation (I know, not the same as rhizotomy). I'm still curious if this is the right choice. I can't think of any medications I could try...I've already done 4 stellate ganglion blocks that didn't work, and we've tried Lyrica, anti-convulsants, tricyclic antidepressants and opioids. I'm very nervous about the procedure and nervous that it won't work.
Hey AKParham...I am sorry for all that you are going through, I know how you feel and it is miserable. I would highly recommend having them do a temperary block first to see if you can live with the way it feels. Make sure they tell you every area that could possibly be effected from the procedure so that you are not taken off gaurd. I didn't like to ask and I have been pretty upset with the out come of my Radiofrequency Rhizotomy. I have lost feeling to left side of my face and up in to my scalp. It is driving me insane. The procedure it's self is not too bad, menimal pain. Just ask every question you can think of so you can have no regrets.
Good luck to you and I hope it helps you and gives you your life back. keep us posted.
Kimkow
AKParham said:
I'm in the same boat - a neurologist I've been seeing since November has me scheduled for an occipital nerve block next Thursday, and if that works, then a radiofrequency ablation (I know, not the same as rhizotomy). I'm still curious if this is the right choice. I can't think of any medications I could try...I've already done 4 stellate ganglion blocks that didn't work, and we've tried Lyrica, anti-convulsants, tricyclic antidepressants and opioids. I'm very nervous about the procedure and nervous that it won't work.
I'll definitely ask all the questions I can. I just feel like we've tried all the medications, and I'm getting desparate. I hope this will work, but if not, I know I'll keep trying other things and letting you guys know what happens.
Greeting, on April 23, 2013 Ii had a Trigeminal Thermal Rhyzotomy that didn’t turn out as expected. I was supposed to have an area about the size of a dollar coin, above my left lip and adjacent to my nose frozen. I was asked if I could live with a small area on my face with no feeling? No problem, after more than ten years of living with the pain of electric shock, a little numbness would be a welcome relief.
Within a few days of the procedure the entire left side of my head, face, mouth and tongue were frozen solid and the intensity of the numbness grew over the following weeks. It is so bad it extends all the way down my throat making eating and drinking impossible in the early days. I was hospitalized for three weeks while I regained the confidence that if I swallowed food or liquids I would not choke to death. Eating is still difficult and I struggle with every swallow.
I also have a yeast mouth infection since the surgery that will not clear up even after taking several oral medications. If I could get this cleared up I think it would help a lot in dealing with the frozen left side of my head. It’s as though a mad dentist has gone crazy with a freezing needle and applied everywhere on the left side of my head, face and mouth.
It has also affected my left ear with the feeling it is flat. It feels like I’m breathing through my ear and it echoes when I talk.
This is not what I was expecting prior to the surgery. I’ve also had two MVD’s, the first in Winnipeg in 2009 which lasted for about one year and the second in Vancouver in 2012 which lasted about one week. After the second MVD’S I was referred to another neurosurgeon who performed the Trigeminal Thermal Rhyzotomy.
If I had known that this could be the result, there is no way in hell I would have gone through with it. If you’re thinking of having this surgery ask lots of questions and try to prevent what happened to me and now dealing with severe anxiety/depression and suicidal thoughts. If you think the pain of TN is bad, this outcome of a Trigeminal Thermal Rhyszotomy isn’t much better and it’s 24/7 with no relief. Well there is some relief but contact me about that. I would only recommend this if all other attempts have failed. There’s no turning back from this one. Now to learn to make this my new normal. Wish me luck.