Hello everyone. I am a new member and currently terrified. Has anyone had rhizotomy. I have no obvious compression. My neurosurgeon is planning on doing 9, sectioning 10, and looking at 5&7 during the procedure. I had Chiari decompression 3 years ago. Please let me know your experience. My drugs are starting to become ineffective and I am having problems caring for my child with the side effects. I want to live again. I have CNS lupus, which is most likely the cause of this. Thank you for your help. I am taking a huge amount of drugs.
Hi Nicole, Sounds like you're having a tough time of it. Any one of the conditions you mention is bad enough all by itself. And you have a little one too.. A number of folk have had the procedure in the community and I'm sure they'll share. To check out earlier posts check out this link. http://www.livingwithgpn.org/main/search/search?q=Rhizotomy
or to search any topic (in case my link fails) go to the black banner at the top of the page and type in the search box.
All the best.
Smiley.
Hi Nicole- am giving you a big hug. Just had rhizotomy 8 weeks ago at MassGeneral in Boston. Blood vessel pressing on nerve not visible on MRI, but there it was! Dr Barker used a titanium pledglet as a buffer, cut 9, trimmed 10, and voila, I feel great after 15 years of intermittent pain. Am off gabapentin completely, next will be Lyrica, then Cymbalta! Was taking max. Amt. of the first two, which were not helping. Don’t be afraid of the surgery. My first surgery ever (I’m 70), and no after effects to speak of. Thank God for Medicare. Take care, be brave.
Thank you both to Maine member and Smiley. Maine Member, you are an inspiration and comfort. God Bless.
Hi , I 1st had the microscopical decompression to separate the blood vessels and the nerves which did not work for me and before the surgery I was up to 14 pills a day which was not working either which is why I decided to go through with the surgery once it was over and in the hospital still I could tell right away it did not work . 2 months later I had a 2nd surgery for the lazatomy of the 9th nerve and during the surgery they were able to test the 10th nerve to see if the were to also cut this one what type of reaction I would have and it was not a good one so they left it alone . The 2nd surgery was easier then the 1st . After the 2nd surgery I still have pain but not as much as before and down to 4 pills a day but even at that I still have pain . I wish you the best of luck !!
Hi. I had a left occipital rhizotomy on March 16 at MassGeneral in Boston. It's been nearly 8 weeks, and I feel wonderful. Blood vessel pressing on 9th cranial nerve did not show on MRI, but doc saw it. He cut the 9th completely and trimmed some little somethings from the 10th. I was taking 12 gabapentin plus Lyrica and Cymbalta, and still pain and/or pinching. The sessions lasted an hour or more, sometimes many a day. Couldn't take it anymore after 15 years. I feel great but will only know for sure after a year, I think. How can everyone have different pain and react differently to same meds? Experts are hard to find. Good luck to us all. It's a tough deal.
I am on 3200mg Gabapentin, 2800mg Trileptal, and 400mg of Lamictal. I will need to wait at least 3 weeks for my surgeon to get back into the country. How do you take your medicine if you have problems swallowing? I worry I will wake up, need my meds and not be able to get them down.
Hi Nicole
I am sorry to hear about your condition.
I did not have a rhizotomy of the 9th and 10th cranial nerve, eventhough I asked for it many times. I had 2 MVD on 9 and 10 with a big blood vessle compressing the nerves. Both MVD had no positive effect.
I recently had a rhizotomy of my V1 branch of the trigeminal nerve and this one worked 100% perfectly fine .... the pain even dissapeared during the surgery (I was awake during surgery).
To be honest with you, there is no "one size fits all" medical procedure regarding GPN. Some people had fantastic results with rhizotomy and some had no improvement at all. Some people even lost their ability to properly speak and swollow after cutting the 9th and 10th cranial nerve.
The only thing you can do, it to try and see if it helps or not. There is great risk, but on the other hand you might get your live back. Do whatever you think is best and also remember that in general your suregeon and healthcare team want the best for you and they have the knowlege and experience to determine, what might be best for you.
May I ask you about your surgeon`s contact details, because it is hard to find a guy that still performs rezothomy of the 9th and 10th cranial nerves.
All the best
Mike
Hello Maine Member
May I ask you about the contact details of Dr. Barker? I am still looking for a good surgeon to perform a rhizotomy ... noone in Europe performs this surgery :-(
Did you have any speaking or swallowing disabilities after your rhizotomy of the 9th and 10th cranial nerve? I am really afraid of these side-effects.
Best Regards
Michael
Maine Member said:
Hi Nicole- am giving you a big hug. Just had rhizotomy 8 weeks ago at MassGeneral in Boston. Blood vessel pressing on nerve not visible on MRI, but there it was! Dr Barker used a titanium pledglet as a buffer, cut 9, trimmed 10, and voila, I feel great after 15 years of intermittent pain. Am off gabapentin completely, next will be Lyrica, then Cymbalta! Was taking max. Amt. of the first two, which were not helping. Don't be afraid of the surgery. My first surgery ever (I'm 70), and no after effects to speak of. Thank God for Medicare. Take care, be brave.
My surgeon is Dr. Frederick Barker, Massachusetts General Hospital, Boston, MA. (1-617-724-8772). You can find out more about him on the Internet. I highly recommend him and his staff.
No, no side effects. Voice is fine, swallowing is a bit compromised--have to take smaller bites. Since meds are still giving me serious dry mouth, I think part of my problem is that I have no saliva to help get food down. Have to sip between bites. Small price to pay considering the alternative. Staying positive is half the battle.
Mike said:
Hello Maine Member
May I ask you about the contact details of Dr. Barker? I am still looking for a good surgeon to perform a rhizotomy ... noone in Europe performs this surgery :-(
Did you have any speaking or swallowing disabilities after your rhizotomy of the 9th and 10th cranial nerve? I am really afraid of these side-effects.
Best Regards
Michael
Maine Member said:Hi Nicole- am giving you a big hug. Just had rhizotomy 8 weeks ago at MassGeneral in Boston. Blood vessel pressing on nerve not visible on MRI, but there it was! Dr Barker used a titanium pledglet as a buffer, cut 9, trimmed 10, and voila, I feel great after 15 years of intermittent pain. Am off gabapentin completely, next will be Lyrica, then Cymbalta! Was taking max. Amt. of the first two, which were not helping. Don't be afraid of the surgery. My first surgery ever (I'm 70), and no after effects to speak of. Thank God for Medicare. Take care, be brave.
I had rhizotomy about 5-6 years ago at the Cleveland Clinic. The surgeon,who specialized in lower brain issues, is no longer with the clinic, albeit i have no reason as to why. But he was definitely a specialist in that area where the nerves come off the brain stem.
To make a long story short, man do i wish i had done it years prior. There was not that much pain or discomfort with or following the surgery (although i was comparing it to two open hearts i have had, not related to GPN). After the surgery, i had no problems with swallowing, nerve pain, sensation, or anything. I was able to get off very high doses of at least three drugs immediately. I considered it a complete success and have had no problems since then. keep in mind it is still major surgery, so there is some discomfort just from that.
my only suggestion is to make sure you are working with a surgeon who specializes in surgeries and problems associated with the lower brain. Although it is helpful to have someone who had done a lot of these GPN rhizotomy type surgeries, i doubt if you will find many. They appear to be somewhat rare and if the surgeon does at least a few each year, you might be lucky. Perhaps this has changed over the past 5-6 years. But i remember asking my surgeon how many he had done, and he said only 2-3 a years because of their rarity.
Good luck. RBH
Thank you Ron. This may seam trivial, but I was told there may be a need for a ng tube after surgery. I am going forward with the procedure. I had a doctor try to place one once and I pulled it out :(. I have a super strong gag reflex. How do I deal with this. If I am unable to swollow at first, they will need it to administer my seizure drugs. This is a silly fear, but it is a fight or flight response in me. I want to make sure I do everything correctly to heal after surgery.
Don’t know much about an ng tube. Did not have one nor was it ever mentioned.
God luck
Ron
Hello Ron
Thanks for sharing your story.
I am amazed how many people have no swollowing problems after the rhitotomy. I am just verry afraid of not beeing able to speak and swollow anymore :-( On the other hand it might be the best solution to get my life back.
I take a ton of meds and the dosage gets higher every few months.
Finding a surgeon that performs a rhizotomy on the 9th and 10th cranial nerve is verry hard, especially in europe it is impossible.
I had 2 MVDs and I have to say that they where a terrible experience.
All the Best
Michael
Hi Nicole
I fully understand your fear/concern ... I do have the same (not beeing able to swollow anymore).
Did you have surgery already?
Ciao
Mike
Hi Mike, I am so sorry to hear what you are going through. It so closely resembles my experience. My surgery is currently scheduled for July 20th. I may need to move it closer. The pain and medication just got worse. I recently fell, broke two ribs and bruised my spleen because I was off balance. The screen I am typing on is hard for me to see because my vision is bouncing. I am just so afraid. I have accepted, 90% accepted, that this is my only choice. It is scheduled as a MVD, but if he sees no compression, he will do a rhizotomy. It may work. That is a possibility. If I do nothing, everything will stay the same. That is definite. I want to know it is the right choice. There is no way to have that. These are all things I am thinking. I will post more. At least we can cheer each other on. I’ll keep you posted. Please let me know how you are feeling.
Hi Nicole
I whish you all the best for the surgery. I hope that you are doing much better and will be pain free afterwards.
Please keep me posted.
cheers
Michael
Hi Michael and everyone,
I had surgery on June 23rd. I have tapered a bit on Trileptal, but we are taking it slowly. I have sensation, but not pain in my throat so far. Fingers crossed. Good news! I can speak fine, as well as swallow! Both were checked immediately after surgery and there was no problem. There was no compression seen on my MRI, but during surgery, my surgeon found compression of both the ninth and tenth nerves. He moved the artery away from the nerves, cut nine, and decompressed ten rather than cutting the upper rootlets. He said this helps lower the chances of the speech and swallowing issues while maintaining the benefits of removing the upper rootlets. This is not something we had discussed, but I know he did not expect to see compression of both nerves. I wish I was jumping up and down, but some symptoms remain and are TN in nature. The throat seams to be better. Maybe I am just afraid to get excited. Getting off of these meds, even just a little, would be enough to make me cry with happiness. The surgery went well. I came home after 2 days. The pain was bad in the beginning, but if there is a TN issue, I am heading back in to do this again. It is worth it. I appreciate his approach regarding rhizotomy of nine and decompression of ten. I hadn’t read about that in any case studies. I hope all of you are doing well. I hope this info is helpful. Thank you all for the support and information.
Nicole
I had my RZ in 1993 and it has been 100% effective until just recently. My recurring facial pain is minor and is a 3/10 compared to what was a 10/10 in pain level. It has been a blessing and given me 23 pain free years. If the pain escalates then I will schedule another with no qualms. My procedure took maybe an hour and I drove myself home ( 300 miles ) 2 hours later .
Uncle Al