Has anyone had a Trigeminal Rhyzotomy procedure? I had a left side Rhyzotomy that has left the left side of my face, mouth and tongue not numb but completely frozen. It’s like a dentist has permanently frozen the entire left side of my head.
It is very distressing and makes eating and swallowing extremely difficult. Being in your face there is no escaping it.
My neurosurgeon has tried both Lyrica and Gabapentin to try and dial down the intense feeling but they only turn up the feeling of being frozen.
This has turned out to be a living nightmare for me and I don’t know where to turn to next.
I would be very interested if anyone one else has had a Trigeminal Rhyzotomy and what the experience was like and how you are coping with it.
Thanks in advance for any replies.
Hi James, I am so sorry to hear you are having such a hard time. I have had 3 failed Rhizotomies that have left me partially numb on the left side of my face. It has left severe burning on the left side, part of my tongue, the roof of my mouth and part of my teeth are numb as well. It has taken me quite some time to be able to eat and drink without drooling all over myself. I drink with a straw... that helps. They say in time some of the symptoms could lessen but that has been over two years for me now and it is still the same as it has always been. I have not found any drugs that help lessen it either. I find that when I am more tired or stressed that the symptoms are much worse. I try to make sure I get enough sleep at night or day lol and keep the stress level down as much as possible.
The only thing that I can say is it does get easier to cope with over time as you get use to all the symptoms from the procedure. I know that isn't much and in the beginning I was very upset and stressed all the time. We just have to learn how to do things a little different then most people now.
Please know I am always here if you want to talk.
Hug,
Shelley
Hi Shelley,
Thank you for the quick reply to my post.
To say that this is stressful is an understatement and not at all what I was expecting. I was told I would trade the drugs I was taking that were controlling my TN pain 100% for a little numbness in my left cheek, not a totally frozen face and mouth. If it where just in my face it wouldn’t be so bad but its in my mouth and the difficulty eating and swallowing that is most stressful.
I see that you live in Nanaimo where my Mother who is 95 lives. She is at Berwick on the Lake (Long Lake) seniors retirement centre.
I’m wondering if we might have had our Rhyzotomy procedure performed by the same neurosurgeon?
I know another fellow in Nanaimo who had the same procedure done by the same doctor a few days after mine and he does not seem to be having the same degree of trouble as I am.
Thanks again, James
You are so welcome James,
I am just sorry I could not be more help. Yes I agree to say this is stressfull is an understatement and totally what I was not expecting either. I spent a lot of time in the beginning crying all the time because this was not what I was told it would be like. My first Rhizotomy worked for 8 weeks and I was almost off all my meds and pain free and then all of a sudden it came back full force. My second Rhizotomy made things much worse, and my third one I got about 7 weeks of pain free and it returned. We all respond to surgeiers differently and that is what makes this disease so hard to treat.
After 3 my neurosurgeon Dr. Cameron in Victoria sent me to see Dr. Honey in Vancouver for a MVD. After meeting with him and lots of thinking I finally agreed to it and had it done May 2012. 5 months pain free and off all my meds and it slowly has returned again and I am in as much pain as before the surgery. I am currently waiting for another MRI to see if the Teflon in my head has moved or there is another compression. Praying for one of those and another brain surgery.
I had to start out be learning to eat soft easy to swallow things first. Jello, pudding, mashed potatoes and gravy, things like that. I still pretty much only eat those things as they are easy when the pain is so bad. Please be patient. It does get easier with time.
When did you have your Rhizotomy done?
Shelley
Hi Shelley,
It’s so nice to be able to talk to some who knows exactly what I’m going through. When I try to explain to my friends and family they look at me and can’t see anything wrong and wonder what my problem is. Thank God for my wife Juvy who is so understanding and caring, I don’t think I could make it through this without her.
I had two MVD’s the first by Dr. Kaufman in Winnipeg in 2009 which gave me about one year of pain free and no meds. The second MVD was done in 2012 by Dr. Redekop here in Vancouver at VGH, I got no relief from that one at all. I was then referred to Dr. Honey who performed the Rhyzotomy on April 23, 2013 which brings me to today.
I tried to see Dr. Honey before I went to Winnipeg for the first MVD but I was looking at 24 months just to see him for a consultation and then another year for the surgery. I wasn’t willing to wait that long so I went to Winnipeg. Dr. Honey said he wished he’d seen me before Dr. Redekop did the second MVD. The Teflon had not moved from the first MVD but it had compressed so Dr. Redekop added more Teflon to it.
This Rhyzotomy is probably the last procedure I’ll have as I sure the hell won’t have a second and there’s not much chance of a third MVD.
After your last Rhyzotomy did the pain come back to the same location?
My fear now is that the TN will find a new location to strike. Last week Dr. Honey put me on Lyrica in an attempt to relieve some of the frozen sensation I’m experiencing. It had the opposite affect and increased the frozen sensation to the point that I thought I was having an allergic reaction to it. After spending the day in ER at VGH, I was told it was an adverse affect on the Rhyzotomy and I would have to just learn to live with it. That shot my anxiety through the roof and now the freezing is even worse than to start with. He has now put me back on Gabapentin to dial back the freezing sensation but so far no luck.
What meds are you currently on? Are they working at all to keep the pain in check?
What drives me crazy is that my meds were working and I had the Rhyzotomy to get off them only to end up like this.
I know another fellow who also lives in Nanaimo and had a Rhyzotomy just a few days after mine and his results are what I was expecting. His situation is quite a bit different though as he also has MS. But as you mentioned, no two people react to these surgeries the same. James
Hi James,
Currently I take 800mgs of Carbmazepine twice a day and 80mg of Amitriptylene a night and 20 mg of long acting morphine twice a day. It all helps but I do have breakthrough pain at least once a week that puts me in the ER for a large dose of morphine injected in my arms. Higher doses of Carbabmazpine for sure help but then I am unable to function and I am still working full time. I am a single mom and have to work.
Dr. Honey is hoping that the new MRI will show something so I can have another MVD and if not he wants to do another Rhizotomy and increase the numbness I have now to the rest of the left side of my face. But where I am numb now I have a great deal of burning underneath which is here to stay and cant be controlled by anything. So he is afraid of spreading the burning to the rest of the left side or intensifying it or both. I am very scared to have another Rhizotomy..... But he said if a MVD is not possible the Rhizotomy is my last hope and after that he has nothing left for me. So I am trying to come to terms with this is how my life is going to be. Very depressing and alone.
I understand the feeling of people not understanding or thinking you look fine on the outside so there cant be anything wrong with you. I have lost many friends over this and all of my family live in the states. I have a great support group at work and have a great support group of facebook. If you have facebook you can add me Shelley Duncan Jay and I would be happy to add you. It is for TN. Also feel free to email me anytime at ■■■■■■■■■■■■■■■■■■■■■■■ if you want to talk and dont want it posted.
Hugs
Shelley
I’m off to see a surgeon tomorrow to discuss this procedure. Can you please describe what they did?