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Living With Facial Pain

Recommend Dr Kenneth Casey


#1

I would highly recommend Dr Ken Casey. In Trenton, MI. He is the co author of: Striking back the TN Handbook. He is brilliant, progressive, thorough, and caring. The hospital is Oakwood Southshore. Great hospital, attentive caring staff. If I had to do it again, I would seek out Dr Casey, Definately!!! Plus, I would have done this 2 years ago!!! Good luck!!!


#2

He's a FIVE star general in the MVD hope army!


#3

I agree KC!!! I am very grateful that you recommended him last year!!! New and improved life, HERE I COME!!! : )


#4

How long has it been? I have 2-5% pain. 2x per week with

2 compressions done that day…This is recent…it’s the second round of it since MVD OCT 2011… It’s not perfect but wayyyyyyyy better to come and go and be easier to live with… Out of all those 18 months …12 were total pain free…odd huh?


#5

So happy for both of you!! Thank you both for inspiring the rest of us!


#6

KC- the MVD was done on Wednesday. I felt total pain relief in the recovery room. I was not expecting that!! TN is odd, no rhyme or reason. I’m taking each pain free day and week as a gift, and keeping a positive outlook. I’m glad that you had total relief for a while. Hopefully it continues to treat you well!!!


#7

Hi Tiffanie

I am seeing Dr. Ken Casey on Monday. Anything you recommend for this first visit? Was the hospital hard to find? I have never been to MI before. Thanks... Elvera


#8

The hospital is off the edge of town, easy to find.

Ask him as many questions as you want, he was so good to me. I flew there from missouri

Now second year after MVD… no pain

He IS THE TOP TN guru on the planet! Caring, funny, and you are in good hands!


#9

Love Dr. Casey too and would highly recommend him! I had my MVD about 2 1/2 weeks ago. My recovery is going very well but have not yet had my TN pain go away. Although I'm frustrated that it's not gone yet, Dr. Casey and staff have reassured me that the nerve often takes a bit of time to heal before the pain free days start. I know that I had the best do the surgery though so I will never second guess that decision.


#10

I think if I ever decided to have MVD I would try to fly to MI to see Dr. Casey. How long is the process between an initial consult and surgery? Weeks? Months? How many times do you have to visit MI before the surgery?


#11

wow, from Missouri huh, now I don't feel so bad coming from WI. Thanks so much Kc!!



Kc Dancer Kc said:

The hospital is off the edge of town,,, easy to find.

Ask him as many questions as you want, he was so good to me. I flew there from missouri

Now second year after MVD.... no pain

He IS THE TOP TN guru on the planet! Caring, funny, and you are in good hands!

#12

All great questions.... I would like to know the answers to these questions as well...

LGHiker said:

I think if I ever decided to have MVD I would try to fly to MI to see Dr. Casey. How long is the process between an initial consult and surgery? Weeks? Months? How many times do you have to visit MI before the surgery?


#13

For me, I emailed him personally because I was out of state. He had me fill out the McGill Pain Scale and send him back via email....and he also asked a couple of questions by email. I sent my records from neuro here in KC.

This all happened in August, 2011

Checked out the insurance, and Flew to the pre-consult, two days before MVD, October 2011.

8 weeks from start to finish!

Mayo takes months and months!

FLEW UP--- wanted to go have lunch in Canada - just for the hell of it, never been there - was just a short drive.

We stayed in the 2 bedroom apartment that the hospital rents out - like $90 per night, we went 2 nights early,

my family stayed there at the apartment the next two nights while I was in the hospital

Then before we drove home, we stayed one more night there to be close by, because I'm chicken little!

DROVE HOME - over the course of 48 hours + where I slept in a Kentucky nice Comfort Inn till we got to Missouri.

I sent him a picture via email - when my neuro took out my staples.... Did not have to go back to Michigan --- ONE stop Shopping !

LOL

I would have driven to Maine, Canada, Where ever the furthest point would be

where THE best MVD would be for me.



LGHiker said:

I think if I ever decided to have MVD I would try to fly to MI to see Dr. Casey. How long is the process between an initial consult and surgery? Weeks? Months? How many times do you have to visit MI before the surgery?


#14

Scared and Angry- glad we connected, us Cheeseheads have to stick together:) Happy to answer any more questions.
Mybell- try not to get discouraged. It was a good 6-8 wks after surgery before my tn pain went away.I was also worried but knew it was in God’s hands at that point and I knew he lead me to Dr Casey for a reason. Hope you keep getting stronger and you wake up one day and wonder where the pain went, like I did.


#15

Hello ~ Does anyone with TN2 have experience with Dr. Casey? I've bounced all over Houston and would love to speak with a Doctor who really gets it. I have another Neurologist appointment coming up and if it goes like all the other appointments having a back up plan would calm my nerves!

I watched his video..... spot on. Not one Doctor here has even asked the right questions. I'm sure everyone here can relate. Thank you.


#16

Abby- I had type 2 & type 1 symptoms on my left side. Constant pain in temporal area with sharp stabs into eye, cheek, ear and side of head. Had MVD by Dr Casey in Aug. All my pain on that side is gone. I have bilateral tn with type 1 starting this summer on my right, will probably need right side done in future…there is hope!


#17

Kathy very happy for you. This is a tricky problem, huh? At this point I've had an MVD, Gamma Knife, etc. I have about 5 major week long attacks a year and everyday is different when not in severe pain. My gut is telling me any further procedures are wasting my time and just want to be kept comfortable. I never had TN1 and just realized it's all TN2. The problem is getting proper medication management. It's just a mess, but after viewing his video wonder if his recommendations could be taken to a Doctor here. I believe you there is hope and thank God finally found this site. All of you guys are remarkable! It has been the biggest help and the spirit of making a difference - the education alone has made me feel less crazy. I am armed for the next appointment, that's if she will keep an open mind. If not ready to go to Detroit! Bilateral that is tough.

Kathy said:

Abby- I had type 2 & type 1 symptoms on my left side. Constant pain in temporal area with sharp stabs into eye, cheek, ear and side of head. Had MVD by Dr Casey in Aug. All my pain on that side is gone. I have bilateral tn with type 1 starting this summer on my right, will probably need right side done in future...there is hope!

#18

I have the book. I had no idea he waws here in MIchigan. Wow thanks! I live a little south of Ann Arbor. THis would really help!


#19


Hi Kathy, I would really like to see the video of Dr. Casey, do you know how I can watch it? Thanks!
Kathy said:

Scared and Angry- glad we connected, us Cheeseheads have to stick together:) Happy to answer any more questions.
Mybell- try not to get discouraged. It was a good 6-8 wks after surgery before my tn pain went away.I was also worried but knew it was in God's hands at that point and I knew he lead me to Dr Casey for a reason. Hope you keep getting stronger and you wake up one day and wonder where the pain went, like I did.

#20


Thanks Kc Dancer, lots of valuable and interesting info. Thanks for letting us all know, you rock :)
Kc Dancer Kc said:

For me, I emailed him personally because I was out of state. He had me fill out the McGill Pain Scale and send him back via email....and he also asked a couple of questions by email. I sent my records from neuro here in KC.

This all happened in August, 2011

Checked out the insurance, and Flew to the pre-consult, two days before MVD, October 2011.

8 weeks from start to finish!

Mayo takes months and months!

FLEW UP--- wanted to go have lunch in Canada - just for the hell of it, never been there - was just a short drive.

We stayed in the 2 bedroom apartment that the hospital rents out - like $90 per night, we went 2 nights early,

my family stayed there at the apartment the next two nights while I was in the hospital

Then before we drove home, we stayed one more night there to be close by, because I'm chicken little!

DROVE HOME - over the course of 48 hours + where I slept in a Kentucky nice Comfort Inn till we got to Missouri.

I sent him a picture via email - when my neuro took out my staples.... Did not have to go back to Michigan --- ONE stop Shopping !

LOL

I would have driven to Maine, Canada, Where ever the furthest point would be

where THE best MVD would be for me.



LGHiker said:

I think if I ever decided to have MVD I would try to fly to MI to see Dr. Casey. How long is the process between an initial consult and surgery? Weeks? Months? How many times do you have to visit MI before the surgery?