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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