Scheduling MVD with Dr Casey

I saw Dr Casey on Fri. He was awesome!! He spent an hour and a half with us. He thinks I have compressions on my trigeminal, vestibulocochlear and facial nerves on the left. I have TN type 2 on the left and just started with TN type 1 pains on the right. I was misdiagnosed with Menieres disease, cluster headaches and vestibular migraines in the past. Now that I know I want an MVD, I want to do it ASAP!! Dr Caseys nurse is calling Monday to get me on his schedule.
Thanks to all of you that have shared your stories and encouraged me in this journey!

I am schedule to have a mvd with dr casey on thursday!!! Best of luck to you he is the best!!!!

Best of luck to both of you. My MVD was 7 months ago and I couldn’t be any better than I am now. My life is back to normal.

I’m so glad to hear it Kathy! I have a much better quality of life thanks to my recent MVD in April. All the best of wishes!!

@ayre, I’ll be thinking of you this Thursday!

((( hugs ))) Mimi xx

Thank you please send lots if prayers my way

Kathy !! So excited for you!!

You will be in my thoughts and prayers!! Only good things going forward!
I bet it feels good to have questions answered, and a direction to go in!

Keep us posted!!

Tiff

Ayre-that’s great!! Maybe I’ll see you there, if he has any openings this week I’m there:)



Mimi and Tiffanie- i am so happy for both of you. You’re success stories have given my the courage to go ahead with this ( and Kimberly’s success as well)! I am so thankful for the friends I’ve made on this site. I know as my anxiety increases, just reading your stories will help calm my nerves…and a little diazepam, doesn’t hurt too;)

Hi Kathy: I am thrilled for you. AND I read your positive report and it made me think since I have been on this site for about 9 months it seems to me that I see the medical community coming to realize there is a solution for TN issues. Both your situation and others are helping with this. So not only good luck but thank you. Anne

Thank you Anne, makes me feel good to think I might be helping others, when so many have helped me.

Hi Kathy!
Thanks for the comment, I agree that all the positive people and information make this forum such a helpful place. We all read, research, think, (or at least through our med-fog, we try!!) and it is such a relief to have a source of support!!

Kathy, and Ayre, I am so excited for you both! The procedure really is our best chance. Outcomes may be different, and not guaranteed, but the alternative- a life of increasing pain IS guaranteed! I thank God for fantastic doctors who can help us! I have total faith in Dr Casey.

I’ll be looking forward to hearing all the good news!!

Tiff

I just had MVD with Dr. Casey this past Thursday, the 11th. It went very well and Dr. Casey is AWESOME!! I'm going to post separately with more details but just wanted to say you have definitely made the right decision going with him. He was the first dr. who actually understood what I was going thru.

I am still in town but hope to head for home tomorrow morning (Tuesday). So far everything is going well enough that I don't think there will be a reason to stay any longer.

Kathy and Ayre - Good luck and please let us know how you are doing when you can!!

Deej-I was there on the 12 and he referred to someone having surgery the day before and was doing awesome! That’s great! I’ll watch for your post. Prayers for quick healing!!!

It’s all scheduled, MVD next Wed. July 24!!

Wow!!! Congrats!!! Hugs!!! High five!!!
Great news!!! You will be in my thoughts and prayers!!!
Tiff

Thanks Tiff!!! Hopefully, I’ll do as well you are!!

I had surgery on those exact 3 nerves too! I feel so much better. Hope all goes well!

@Ihold That’s awesome news, glad you are doing so well!! Just curious, what were your main symptoms? For me, the ear,cheek and eye pain are the worst, but the constant pulsating ringing in my ear really wears on me, too. All soon to be a thing of the past;)
Dr Casey did say it’s not uncommon for these 3 nerves to be involved.

The worst pain was in my left eye and left ear. For years I would say that it felt like a hot poker going in my eye and another one in my ear and were they met inside my head was where the pain was coming from. I also had a lot of pain on my cheek, left nostril, above my left eye and pain on the teeth on the left side of my face. I would have some pain in the back of my throat, but not that much. I would get really bad ringing, pressure and just plain old pain in my ear. Any sudden exposure to loud noises would bring on a full on attack of shocks and pain on everything. Anything cold in my mouth would cause a lot of pain. I couldn't even smile completely because that would trigger pain. The eye and ear pain were the more constant ones, even though they knew how to flare up and remind me there's always more pain to be had. lol I had been diagnosed with chronic migraines, cluster headaches, and a bunch of other things because they didn't know what I had. All my MRI/A/V were negative. When the neurosurgeon went in he found an artery wrapped around the 7th (facial) and 8th (vestibulochoclear) nerves and then went he went a little deeper he found another artery wrapped around my 5th (trigeminal) cranial nerve.

Please let me know how things go!

-i

Sorry to hear you were in so much pain, sounds exactly like my symptoms. I just found out my insurance is denying my surgery, going to appeal. Feeling a little hopeless at this point.

Kathy, I have terrible pulsating tinnitus too, and my ENT and neurologist said there is nothing they can do, I also have severe ear pain, have you found anything to help with the tinnitus?

Kathy said:

@Ihold That's awesome news, glad you are doing so well!! Just curious, what were your main symptoms? For me, the ear,cheek and eye pain are the worst, but the constant pulsating ringing in my ear really wears on me, too. All soon to be a thing of the past;)
Dr Casey did say it's not uncommon for these 3 nerves to be involved.