Had my rhizotomy a week ago

Hello Everyone,

Soooo I finally got the surgery last week. My surgeon was going to do an MVD if there was a blood vessel lying on the nerve, but he said it was all clear, so he did a rhizotomy of the Glosso Nerve.
I woke up and immediately started throwing up, as I always have a horrible reaction to anesthesia. Let's just say throwing up after you feel like you've had your head run over is never a fun time haha.
A speech pathologist came in immediately and checked my swallowing. It was a little hard for me to swallow, but I could do it. Another Dr. came in to make sure all of my other motor skills were working.
Everything looked fine. They were planning on keeping me in there 2-3 nights, but after the first night I knew I had to get out of there. The staff and surgeons are extremely good, but the hospital itself is awful. It's UIC Medical Center in Chicago, where I live. I was in the IC unit and everyone around me was screaming and moaning and I wanted to be like, "I know it hurts, but PLEASE SHUTTTTT UP".
I was put into a small room with two other people. Two other loud people who wouldn't shut up hahah.
The next morning I knew I had to get out of there so I bucked up and tried my hardest to seem okay so I could be released later that day. It worked. They reminded me that there would be no morphine if I went home, and that was something I could take if it meant I could sleep in peace.

It's been one week since surgery and I am so confused about how I feel. I still have a lot of the same pain. A feeling that there's something in my throat and it's hard for me to swallow, still have pain at the angle of my jaw and cramping in my face, still have pain where my lower molars used to be, still feels like there's something like an ice pick in my throat, still have deep ear pain and pain at the base of my tongue. Whenever I sit in bed and read or try and watch a movie, the same pain of something in my throat is there. I don't seem to have the 'whooshin' feeling that comes over me when I have a severe pain attack-- stabbing in my right tonsil, along right side of my tongue, stabbing in my ear. So I'm confused. Do I have two different things happening? Or maybe the pain hasn't gotten so severe because I haven't been out in the real world or at work, or under any extra stress.

I haven't talked to my neurosurgeon since the surgery, but I see him on Monday, when I get my stitches out. My mom asked Dr. Slavin, "What if she gets this nerve cut (oh I got a rhizotomy and not an MVD. They didn't find any blood vessels hitting the nerve) and the pain doesn't go away?" He replied, "Then she probably never had Glosso Neuralgia to begin with.
Everyone keeps saying, "Maybe it's because you have phantom nerve pain or it's not been enough time" My neurosurgeon and others who've I've talked to who have had this surgery say if it's the Glosso Nerve causing the pain, the pain should cease immediately after they've cut it.

So I'm confused and mad and sad and don't know where to go from here. A lot of other people I've talked to who have had a rhizotomy of the Glosso Nerve and haven't had it worked, have another surgery where they have the 10th cranial nerve, the Vagus nerve, cut. There's no way in hell I'm having another brain surgery. This surgery has worked wonders for several people, but so far it doesn't seem like it's worked for me.

I used to think I had Eagle's Syndrome because I have a lot of the same symptoms and my stylohoid processes on both sides are elongated. All the ENTS I went to didn't know much about it and couldn't feel the ligament upon palpitation so they said I didn't have it. My neurosurgeon, Dr. Slavin, knows a lot about Eagle's Syndrome and Gloss Neuralgia, which is why I went to him in the first place. He said I didn't have Eagle's Syndrome, but that I had Gloss Neuralgia.
The two can go hand in hand (the ligament can be hitting the glosso nerve), but they can also be mistaken for each other. Maybe I never had Glosso Neuralgia to begin with. Maybe I do have Eagle's Syndrome. Who knows. No one seems to know what's wrong with me. I am getting something called Prolotherapy shots in my stylohoid ligament next week. It's a natural way to try and cure Eagle's Syndrome and something called Ernest Syndrome, which I may have. Obviously, I've just had brain surgery and it didn't work, so I'm not going to be too disappointed if this doesn't help either.
I'm going to try and do a lot natural remedies (again), as I just had brain surgery and don't want to jump into cutting anything else.

It's funny that when people see my incision, they're like "Oh my god, you poor thing it looks like it hurts soooooo much." And then I'm like, "It's nothing compared to the nightmare in my face."

I hope this helps some. I have a lot of anxiety right now and am kind of scattered brain so I'm sorry if this is all over the place. I've attached a photo of my head post surgery. Please let me know if anyone has any questions.

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Hi Jade,

I hope you are doin better. Have the pain subsided since your last post ? My mom is going in for the Rhizotomy on Wednesday and I would like to know if you still think the operation was not a success.



Hi Jade,

My wife is suffering from GPN, thats what doctors and MRI reports say. She already had Radiofrequency Treatment, but no use.

What is Eagle's Syndrome?? By what test and reports it can be detected ?


what is the scar like

I'm not sure why they would have done a rhizotomy when they said they could see nothing lying on the nerve? Sounds a little sketchy to me. But I don't know all of the details and so I will trust that your doctor knows.

I just had MVD done on January 11th. It was a rough ride as I ended up having a small stroke as a side effect. I'm fine now 12 weeks later. I had a blood vessel wrapped around the gloss/nerve. The doctor wasn't sure if he could get it - but he went in and tried. As soon as I was coherent enough to understand if I was having "that" pain anymore I knew I wasn't. I still had nerve pain (It takes awhile for everything to calm down) but I KNEW that pain was gone. I am now in the process of weaning myself off the last of the medicines (Nueronton).

I am a success story and the only reason why I am saying this is because there is hope and the right doctor WILL be able to help you. The book Striking Back was invaluable in my search for a doctor. Before that book I had a doctor put me through a glycerol injection - which has nothing to do with the symptoms I had been describing - which to a well trained dr. would have triggered them to think of the glosso nerve not the trigiminal nerve.

I went to Dr. John Alksne at UCSD here in my home town of San Diego. He was in the book Striking Back and that man is just amazing and so KIND. He knew exactly what to do and I am sitting here writing this, out of pain for the first time in two years.

Keep looking. Keep searching. There is a reason for your pain and the right doctor will know what to do about it. Praying for your relief from this horrible disorder. Sandee

I had eagle syndrome and had my styloid removed 2 years ago but know think it caused Gpn I get my mri results on monday it does seem they go hand and hand a panoramic xray from a oral surgeon who has delt with it before is the best way to find it that in a 3d cat scan if your doctor doesnt know that it will be missed and they will tell you ,you dont have it I got a panoramic from a oral surgeon and brought it to a ent telling him I have it he ordered x rays and a ct told me I was fine I went back got another panoramic it showed up again had my oral surgeon call the ent just to be dropped check out the livingwitheagles site we all have the same long stories of years not being diagnoised and there is alot of us who still have symptons after the styloid is removed Im just found out about gn and starting to think they go hand and hand but ent dont know much about gpn and neurosurgeon dont know much about eagles hope this helped

Thank you for sharing with us. I am sorry your surgery didn't .work. Sounds like we are all looking for something that will cure or help us. It is good to hear of those who have had success. My MRI has me very concerned but I am going to try Cleveland Clinic in Ohio before to long. You mentioned natural remedies. What have you tried? I haven't had surgery and still get mixed up. Just learning how to do this. Hope this gets posted to your comment. Good Luck with your treatment.