Rhizomtomy

I'm going back to Johns Hopkins for a rhizotomey (sp) next Monday. Can any of you tell me what to expect following the procedure? It's only about a 50/50 chance it will help but at this point, that is all we have left to try...I'm flying from Wichita, KS to Baltimore for this with my husband & will fly back 2 days after the riz. Just would like any help anyone would like to give me on how I'll feel afterwards. Thanks! :)

All I can offer are my positive thoughts that this procedure offers you some relief at last!
I’ll be thinking of you Lori! Check in when you can!
((( hugs ))), Mimi xx

Look at groups tab above…there probably is a group for that…

Thanks Mimi! Kc Dancer Kc - I already checked - couldn't find anything.



Kc Dancer Kc said:

Look at groups tab above.......there probably is a group for that.....

What kind of rhizotomy they gonna have on you? Gamma or Glycerol injection?

Hi annable! Their going to do Glycerol this time, & if it doesn't help, they'll try the other later.

Hi Lori!

There you are!

http://www.livingwithtn.org/forum/topics/glycerol-injection-treatment

Hi just read your blog I am going to be at Hopkins on Monday for mvd this is Angela Moxley

Hi Angela! You are going to one of the best neuro-specialty hospitals in the world! And with some of the best neurosurgeons in the world as well! Wishing you a successful MVD on Monday! I'm sure you will be in excellent hands at Johns Hopkins - that's why I travel all the way from Kansas to be treated by Dr. Lim there! You will be in my prayers! :)

http://www.livingwithtn.org/profiles/blogs/pain-free-after-glycerol...

I hope it'll work for you Lori!

Hi Lori.

I had a radiofrequency rhizolysis done on March 1st of this year. It was my second one. I don't know if this is the same thing as yours except they are injecting yours with glycerol? Mine was an ablative procedure where they heat up the nerve to damage it just enough so that you don't feel the pain signals anymore. I had gamma knife done in 2009 which did nothing for me. I had MVD done in 2009 also. I got about a year and a half out of that. Had my first radiofrequency procedure done in 2010. And now just had the second one done this year. Dr. gave me the choice of second MVD or this again. I chose to go this route again because the recovery time is so much easier. It was done on an outpatient basis. I went home the same day and was at my son's basketball game by the next morning. It does cause quite a bit of numbness at first but it gradually wears off over time. I was very glad I did it again and will probably have it done again on the future if need be. I hope this was helpful to you. Laureen

I had a glycerol rhizotomy in April. You wake up from the procedure sitting up and have to sit like that for two hours. I was fairly sore, but they gave me pain meds for the pain. I did not have any long term numbness, although this is a possibility. I took everything easy for a few days following the procedure. The pain actually went away for a while, but it is slowly coming back, as the nerve does regenerate. If you have any questions, feel free to message me:)

Hello. I had radiofrequency rhizolysis in May and June. I was sore in my jaw for awhile. I’m not sure if this is the same but I am mostly completely numb which feels great. I hope this works for you. Best wishes

Thanks to each one of you for your help on this difficult road we travel...I really appreciate all of your responses! :) I really didn't want to do this procedure but the jerks I have to deal with in pain management kind of forced me into it. I had an MVD on 9/13/11 which failed horribly because the neurosurgeon here nicked my optic nerve causing me to lose partial vision in my right eye & some hearing in my right ear and now I also have TN in ALL 3 branches since the surgery.

I'm having the Glycerol Rhizotomy done next Tuesday if everything checks out OK in my pre-op tests. It should be outpatient but Dr. Lim said I may have to stay overnight since I get pretty sick with anesthesia. I know it's not a perm. cure but if it helps at all for awhile, I'll be overjoyed! :) We're all in this together...so again, I thank each one of you for commenting on my question! God bless every one of you! I'll check back in when I get home in a few days & let you know if I get any relief! :D Take care!

I hope everything goes well I will have mvd on Monday with dr lim I will be thinking of you

I had a MVD at Hopkins this Summer and flew in from AR. I was very pleased with my Dr., but the pain was only gone for about 2 1/2 months and since then I have been going back up on meds and nothing seems to cut the pain. I'm going back for the glycerol rhizotomy in 2 weeks, so I would love to hear about how you are doing now, what the experience was like (and recovery) and if you have any advice for me...including how long to stay in Baltimore post procedure before flying back home.

Thanks!!

Missy

HI I just had the glycerol rhizotomy on friday. I am feeling strange (head feels like in a fog) I was very nauseous after and for the next 2 days and vomiting with severe headache but now all of that went away and the head in a fog feeling started today. I was just wondering if you had any symptoms that you remember and would be willing to share?

Thanks

brbgrl1017 said:

I had a glycerol rhizotomy in April. You wake up from the procedure sitting up and have to sit like that for two hours. I was fairly sore, but they gave me pain meds for the pain. I did not have any long term numbness, although this is a possibility. I took everything easy for a few days following the procedure. The pain actually went away for a while, but it is slowly coming back, as the nerve does regenerate. If you have any questions, feel free to message me:)

HI I just had it done on Friday and was wondering how you felt afterward? I too have issues with anesthesia and think that was the issue I was having 2 days after procedure but I am now feeling like I am in a fog kind of like a head cold but not sure if this is how I am supposed to feel or if just me. I would love to hear about your expereince.

Thanks

Lori (Lefty) said:

Thanks to each one of you for your help on this difficult road we travel...I really appreciate all of your responses! :) I really didn't want to do this procedure but the jerks I have to deal with in pain management kind of forced me into it. I had an MVD on 9/13/11 which failed horribly because the neurosurgeon here nicked my optic nerve causing me to lose partial vision in my right eye & some hearing in my right ear and now I also have TN in ALL 3 branches since the surgery.

I'm having the Glycerol Rhizotomy done next Tuesday if everything checks out OK in my pre-op tests. It should be outpatient but Dr. Lim said I may have to stay overnight since I get pretty sick with anesthesia. I know it's not a perm. cure but if it helps at all for awhile, I'll be overjoyed! :) We're all in this together...so again, I thank each one of you for commenting on my question! God bless every one of you! I'll check back in when I get home in a few days & let you know if I get any relief! :D Take care!

Hello brbgrl1017,
My father is suffering from TN. He underwent radiofrequency 5 days back and the pain just shot back. He is unable to eat or drink and brush. The attacks are just not going. Doctor believes the machine did not work properly.
Any advice that you can give me. He is in India at the moment

You’ve pulled up an old thread, not sure whether those members are still active, fingers crossed.
I think the jury is still out on the true cause of TN, so personally I would not encourage any drastic interventions, there is a possibility that the pain felt is a side effect of the surgery and healing may improve things over time. Personally I do not buy the “maybe the machine didn’t work” theory, it really puts a question mark over both the doctor and the treatment. Before going back under I’d want to seem some hard data of how that happened, what are the statistics on machine failure and a guarantee that if the procedure is repeated that the pain will be fully resolved.
The other possibility is the machine did the job required, but it was the wrong job and now there may be further complications that need to be dealt with.
I hope you find speedy resolution for your father and others with more specific experience chime in with their thoughts.