If you google " ask Ken Casey" the video should pop up. Good luck, definitely worth watching. Although I couldn’t watch the surgery knowing I was going to have it:)
Scared & Angry gal said:
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.
Thanks Abby- there definitely is power in knowledge. The more I learned, the more in control I felt. I was going to sit by passively and be told what to do, without researching it. If I would have, I might have had a procedure that could cause more harm than good. Good luck at your next appointment!
Kathy spot on! I'm trying to avoid any procedure that might cause more harm. That said all that has been done to me so far has left me worse off and no better. It seems I have to figure out a way to communicate and educate the Docs to try to get on a plan that's appropriate. I also need some sort of emergency plan. Anyhow like so many of us just going from one Doctor to another. It's truly amazing what some of them have said and confronting a Doctor in some cases makes the whole mess worse. Anyhow, thank you. If I don't get anywhere after this appointment then I will see Dr. Casey too!
Kc Dancer - I felt the same way after viewing the video. Now have seen it twice and he nailed how things were going for me including the food cravings. Hell I was eating a cherry pie at 6am while watching it. It's a good view for anyone with TN and I think in particular TN2.
I also have TN 2 and just had MVD with Dr. Casey in July of this year. Mine is not completely gone but soooooo much better. I only take 1/2 the medication I used to take and the side affects are now almost nonexistent. I have to agree with everyone else here. Dr. Casey is the best!! I contacted him in April and he could have done it in May but I had other family obligations so waited until July. He's really great for those living out of town and makes sure you don't have to travel any more than necessary. He was absolutely wonderful to talk to and the only doctor I have ever seen that actually "got it". Everyone else told me my symptoms didn't seem to be typical (Duh! I have TN 2).
So wonderful to hear all the other success stories here too. Good Luck!
I have just been diagnosed with TN by an ENT who has me scheduled for an MRI. After the MRI he said I would need to see a neurologist. Would I need to go to a neurologist first or could I go straight to Dr. Ken Casey?
Dr. Casey was terrific, very kind and understanding. He couldn’t help me because my atypical is very atypical. I was disappointed, crushed. But it was nice to see someone who cared.
Ann- hugs, sorry to hear news that isn’t great. I hope that you have more good days than bad. He is truly a great Doc! I know that things are hard now, but I do believe that doctors like him are working for cures and help for neurological pain there’s a lot of people out there that suffer. Hugs to you!
I did finally get in to see Dr. Casey. So glad I did! He said I do not have TN but I do have trigeminal neuropathy with neuropathic face pain. I'm so glad for your recommendation. I've already recommended to someone who has recently been diagnosed with TN by a family physician.
Hello Friends..we are also planning to go for MVD...can anybody have Dr. Casey email-id then please share because before going we want to have first opinion from him...
Hi Honey, His office moved last month, here’s the new contact info that he gave: 18025 Fort St, Riverview, MI 48193 and an email to start a conversation/ questions: ■■■■■■■■■■■■■■■■■■■■■■■■■.
I had my MVD in 6/12/13. Was perfect from the moment I opened my eyes, for 13 months. I’m having a pain relapse now, and Dr Casey has been wonderful, troubleshooting medicine, and responsive since July. I might go see him again if this last trial doesn’t work. I have total faith in him.
Good luck ! Keep us posted!
Tiffanie
Tiffanie,
So sorry to hear you are having pain again. I hope them exchanges help!! I have occasionally pain but seeing a NUCCA chiropractor really seems to help. Will keep you in my prayers!!!
Kathy
Hi, I saw Dr. Casey as well in November of 2013 and he was wonderful.. He gets it!!! Like Michigander, he told me as well that I have trigeminal neuropathy so he couldn't do an MVD, however, he put me on the right medication for me, nortriptyline which has been wonderful and I am either pain free now or in just mild pain. I am so so glad I didn't waste precious time and I went straight to see Dr. Casey after I had my first symptoms in April of 2013. If I ever need to switch, it sounds like I could try Lyrica as well. I am curious Michigander, how you are doing on the Lyrica and if you like it?? Elvera
I did very well on Lyrica for the first month trial prescription. It only took a low dose for me to be pain free. The second month, when the dr was giving me a longer term perscription, my medical insurance changed from a corporate policy with BlueCross Blue Shield (BCBS) of California to an Individual Plan through BCBS of Michigan. BCBS of Michigan denied covering Lyrica for facial pain that it is not part of their coverage. I was stunned!!! Of course its all about the money because there is no generic for Lyrica and it's very expensive Anyway, my primary physician switched me to gabapentin which seems to be working also. I asked Dr. Casey about gabapentin for my diagnosis and he said generally not good results. He is willing to write a letter in support of an appeal if I need to go that route. I'm holding off on that since the gapapentin seems to be working so far.
Interesting, can I ask u what dose of the lyrica worked for you?? Its funny but I was taking a low dose of neurotin (gabapentin) when I met Dr. C (because my PCP prescribed me the neurotin) and he told me the same thing, that gabapentin is not the best thing for neuropathy. You can also try a low dose , 25 mg of nortriptyline. Most insurances cover that because its a fairly cheap medication, like $11 for a bottle and it has worked very well on bringing my severe neuropathy pain from severe to no pain or mild pain...One last question if I may: what is EMLA cream?? Thanks so very much!!!
EMLA cream temporarily numbs the skin and surrounding area. I have this cream also as a just in case matter. I have not used it yet. A doctor would apply it on a patient 1-2 hours before a minor skin procedure. My main trigger has been hot and cold food and liquids in my mouth and my attacks had been lasting a half hour or less so this is not really useful for me right now.
Forgot to add- Dr. Casey also has nortriptyline on the list he sent my PCP as a potential drug. Lyrica and gabapentin actually work very similar and are both anti-convulsants whereas nortriptyline is an anti-depressant. I'm hoping not to go the anti-depressant route. I'm worried about the side effects. Right now I believe I have a comparatively mild case of neuropathy versus many of the stories I have heard on this site. So for now the low dose Lyrica and low dose gapapentin have done ok. We'll see what the future holds.