Seen Dr. Casey for my GPN. Wanted input from those who had successful surgery from him

General General TN & GPN (Old Site)
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Hello All,

I was diagnosed GPN by Dr. Kenneth Casey a few weeks ago. I'm 23 years old and had this pain come on about a month before my graduation. It is the most debilitating pain you could possibly go through. Sharp stabbing pain in my tonsils, back wall of my throat, and neck pain along the jaw which is all on right side. Also have palatal tremors that happened the same time this pain came on. Its when my palate muscles contract and causes tinnitus in the ears. I try not to talk as much because the pain is unbearable when i speak. I went to his office and he walked into the room and said "so tell me what you think you have". I told him i don't think i have trigeminal neuralgia which one neurologist thought i had and he goes your right you have glossopharyngeal neuralgia. He looked over my mri and said he seen a blood vessel coming into contact. He was pretty upset that the radiologist and the doctors didn't pick this up in the MRI back when I had it in September. He told me that no medication helps glossopharyngeal neuralgia and for me to be pain free is to do MVD. He was really nice and helpful in answering all the questions I had for him. He sat with me for about 45 minutes just answering all my questions. I seen his video on the web of him doing the TNA conference answering all of those who had Trigeminal Neuralgia related questions. Fortunately he only lives 5 minutes away from where I live. I was hoping to gain input from those who have had Dr. Casey do their MVD and how their outcome was with the procedure. I'm just afraid to go through based on the risks he explained to me. It also didn't help that my mother was in the room when he explained the risks and my parents are adament for me not to do the surgery and to bear the pain. I think they just don't want to see me go through the whole surgery process and them wait those few hours to see how I did. Maybe Gamma Knife could be a possibility even though theres only about 30 reports of those who did this for GPN and I'll bring this up to him next week when I see him again if he thinks this could be another alternative to MVD. It's just not fair because this pain is not allowing me to live a normal quality of life. I wish I could get this all situated before I start my career after graduating. I just want at least the slightest relief of pain from this. Maybe I'll just start working for a full year, save up the money myself to pay for the surgery myself, not take off any days and use those recovery days and vacation days for me to recover from the surgery.

Any input from those that had Dr. Casey do their procedure on them would be greatly appreciated. Thanks.

Tony

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Dr. Casey performed my MVD 6 months ago and honestly changed my life. I am 100% pain free and med free. I was diagnosed with TN last January, luckily just 4 days after my terrifying symptoms started. It didn't take me long to decide I wanted an MVD to fix the problem I spend some time on Trileptal (up to 1800mg) and then switched to Tegretol and was on 1200mg of that at my surgery time last October. I visited Dr. Casey (traveling from Indy) last July after already having seen 2 other neurosurgeons, 2 neurologists, a pain specialist and after having had 2 MRI/MRAs. He also spend about 45min with me and was the only person who clearly saw 2 compressions on my MRI. I knew he was the right neurosurgeon for me and had complete faith in him. I had to wait until October for my surgery just to work it into my own schedule to have help lined up, etc. for my recovery. Honestly, the surgery wasn't nearly as bad as I had thought it would be. It was a rough first day in the Neuro ICU (mostly the nonstop nausea from the anesthesia) but after that, it was a fairly speedy recovery. I had a bad headache for about a week or two that was controlled pretty well with meds and honestly, I was back to my routine by the 2 month mark, including teaching my 4 spin classes a week (I'm a fitness instructor). I am 6 months out now and have had zero complications. I am going to the Regional Conference for TN here in Indy on Saturday. Dr. Casey will be there and I am going to attend, mainly so I can thank him in person and also so I can offer others hope.

I do have to say that I was afraid of the risks of surgery but I was more afraid of the pain and the meds. I was willing to take the slight risk of complications. Dr. Casey is among the best, if not the best (in my opinion), neurosurgeon for TN cases. You are in good hands.

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Hi, I’ve not had Dr. Casey but heard great things. When diagnosed at your age, much better outcome. Many people with TN, it took years to get diagnosed and much older. All of my doctors have said much better outcome with MVD when you have not done the other procedures due to scar tissue they create. You made comment “this pain is not allowing me to live a normal quality of life” Quality of life is so important. Your parents know u r in pain, but really have no idea just how bad. Nice to read mybell’s comment above. Any time I have a procedure, I tell anesthesia that I get very nausea. They now give something during surgery so I don’t get. I was recently visiting Tampa mall and went in a Tea store, curious if any help nerves since so many teas have benefits. The young man that helped me, early 20’s. I could not believe it, when I mentioned TN, he he showed me his scar, he had MVD himself. He is doing great! I have not logged on in a while but decided today I need to. Your comment was 1st I’ve read. I keep everyone in my prayers with this difficult condition. My doc always says you will know when it’s time. You’ve had enough. Also, there is a doc at UCLA that specializes in TN. He will come up if you Google that. I think he will look at an MRI for his opinion but it sounds like Casey is really good. Prayers as you decide what to do.

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I agree with Daryla . . do consider MVD ahead of other procedures as MVD has better success if it's the first procedure/surgery that is done. I also recommend reading "Striking Back", which is co-authored by Dr. Casey. Prayers to you!

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Yes…success… ,!!

Most here with casey, are not on here any more… They are out living life!

I suggest you and parents google and watch casey’s video
" the tides of neuropathic pain"

I watched that two hour video and flew to michigan from missouri!

Saved my life
2.5 years later, no meds, no pain

I was worried about risks, but they are small compared to brain surgery… This is cranial surgery!

And he has been doing this since 1970s… He is a national treasure!

Your parents cannot comprehend this pain…nobody can

They need to support you or get out of your way! LOL

You or them can email me at ■■■■■■■■■■■■■■■■■■■■

I only had meds for one year, before i researched him and made up my mind. I actually got on the table in remission! But i knew it was…is…progressive.

You are sooooo lucky to live right there! People come to him from all over the states!

If you do gamma first, your success of a later MVD goes way down.

I was in ICU one nite,
Regular room one nite
This is standard

We drove home
Went to bed for three weeks and
did NOT bend, move or shake my head around

After a year all the things in your head get back into place! But life can begin again in month two post-op.

I could type all day about this man who gave me my life back.

He is in top 5 world wide MVD gurus as far as i can tell!

Keep posting!

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I'm in total agreement with KCDancer. I was at the Indianapolis TN Conference this weekend and saw Dr. Casey there along with several other great neurosurgeons. It was so clear that Dr. Casey was the most seasoned one among them and just reinforced in my mind that I picked the best. I will be at 6 months post surgery in 2 days and am 100% pain free and med free also. I met a woman at the conference who had an MVD by Dr. Casey 8 years ago (a more complicated one than I with several veins involved versus my 2 arteries) and she is now and has been 100% pain free and med free since the surgery. I was also just under a year with TN when I had the MVD done. It was one of the best decisions I made in my life and I feel blessed that I found Dr. Casey.

Do keep posting! Let us know how this pans out for you. Our prayers are with you.