I am headed to see a neurosurgeon tomorrow.(Dr. Casey) I have had tn for 3 1/2 years and it has progressed rapidly the last year.I am very nervous. I have done research and read stories about mvd. Surgery is not what anyone wants but I feel that living on meds will only last so long since this disorder is progressive Any advice I should consider or any questions I should ask please share with me. I am currently reading Striking Back I know every mvd is different and he may not think I am a candidate but something has to be done I want my life back my kids want their mom back and I have a job I dont want to give up...Luckily I am a teacher and I am done for the summer I barely made it throw the last two months of school as I have not had much relief from the pain
Please share anything I may want to ask the Dr or consider
Hi, By all accounts you will be seeing one the best neurosurgeons there is. Very experienced. If it's fixable, he'll fix it.
You are right, in my estimation, about the Med's. They work for some and for others not so much or can be ( as was my case) very debilitating. MVD surgery has a high success rate and low complications. I had mine about a year ago and have had no TN pain since.
The only advice befroe your visit would be to have someone with you ( if possible) to "pick up" on things you might miss as far and Q and A goes.Also write down your questions. Ask him how many MVD's he does every year and how many in total he's done. That should help you feel more confident, as I know he is one of the most experienced MVD surgeons on the planet.
Please try and focus on your new pain free life after your MVD surgery. I can tell you it's a blessing
Of course I am one of Dr. Casey's biggest cheerleaders here -- LOL
I would have walked to Michigan from Missouri - knowing how much better I feel 1.5 years later.
Consider yourself lucky - I'm excited for you.... I'm not sure what you want to know.
I know he does hundreds of these per year -- You can ask the outcome rate - but with his cases - I'm pretty sure it's the persons anatomy that is the largest failure factor - not his skills.
I asked him = when can I do _______? Any thing I asked - his answer = When your body feels ready. So that's very individual.
The day of surgery - I asked for NO catheter... I did okay with the bedpan -- that was just my preference....I was out cold before I even hit the operating room. The standard med they give you after you get out of the Recovery Room (1 night for me) is Narco/Vicodin - I can't take that - makes me ill.
My scar/opening was much shorter than some people on here. he will test your hearing while you are in operation so that they can check for what might take your hearing or lessen it .... mine turned out okay.... first thing I woke up barely - he whispered in my ear LOL.
Found 2 compressions -
Let us know how it goes! He has a great sense of humor - travels the world and teaches MVD --
Are you from there locally - or will you be staying in the hospital sponsored apartments?
Of course I am one of Dr. Casey's biggest cheerleaders here -- LOL
I would have walked to Michigan from Missouri - knowing how much better I feel 1.5 years later.
Consider yourself lucky - I'm excited for you.... I'm not sure what you want to know.
I know he does hundreds of these per year -- You can ask the outcome rate - but with his cases - I'm pretty sure it's the persons anatomy that is the largest failure factor - not his skills.
I asked him = when can I do _______? Any thing I asked - his answer = When your body feels ready. So that's very individual.
The day of surgery - I asked for NO catheter... I did okay with the bedpan -- that was just my preference....I was out cold before I even hit the operating room. The standard med they give you after you get out of the Recovery Room (1 night for me) is Narco/Vicodin - I can't take that - makes me ill.
My scar/opening was much shorter than some people on here. he will test your hearing while you are in operation so that they can check for what might take your hearing or lessen it .... mine turned out okay.... first thing I woke up barely - he whispered in my ear LOL.
Found 2 compressions -
Let us know how it goes! He has a great sense of humor - travels the world and teaches MVD --
Are you from there locally - or will you be staying in the hospital sponsored apartments?
I spoke with Dr Casey - yep…he actually took the time to correspond with me about my concerns / questions!!! I was so impressed! I live in Tenn and it was just too far to go to Michigan; he recommended Dr Tew in Ohio. after seeing him and having my evaluations - I had my MVD April 12 and have been steadily recovering. I was told it would take me a little longer since I was fairly advanced…I go back this Wednesday for my next check up. It is SO worth the 5 hour drive each way…I too would WALK to see Dr Tew! These two gentlemen know each other (over 20 years). My life is NOW worth living…now my family has the beginnings of the wife, mom, daughter and sister that had been missing and steadily ‘leaving’ for two years. I thank God above for Dr Tew!
Do your homework…ask EVERY question you can think of…don’t be afraid to be afraid!
I wish the best for ya!!
Cris - 2 weeks off ALL TN meds and learning to LIVE again!!!
How many compressions did they find did any of the show on your mri
cris said:
I spoke with Dr Casey - yep...he actually took the time to correspond with me about my concerns / questions!!! I was so impressed! I live in Tenn and it was just too far to go to Michigan; he recommended Dr Tew in Ohio. after seeing him and having my evaluations - I had my MVD April 12 and have been steadily recovering. I was told it would take me a little longer since I was fairly advanced...I go back this Wednesday for my next check up. It is SO worth the 5 hour drive each way...I too would WALK to see Dr Tew! These two gentlemen know each other (over 20 years). My life is NOW worth living...now my family has the beginnings of the wife, mom, daughter and sister that had been missing and steadily 'leaving' for two years. I thank God above for Dr Tew! Do your homework...ask EVERY question you can think of...don't be afraid to be afraid! I wish the best for ya!! Cris - 2 weeks off ALL TN meds and learning to LIVE again!!!
Hi, By all accounts you will be seeing one the best neurosurgeons there is. Very experienced. If it's fixable, he'll fix it.
You are right, in my estimation, about the Med's. They work for some and for others not so much or can be ( as was my case) very debilitating. MVD surgery has a high success rate and low complications. I had mine about a year ago and have had no TN pain since.
The only advice befroe your visit would be to have someone with you ( if possible) to "pick up" on things you might miss as far and Q and A goes.Also write down your questions. Ask him how many MVD's he does every year and how many in total he's done. That should help you feel more confident, as I know he is one of the most experienced MVD surgeons on the planet.
Please try and focus on your new pain free life after your MVD surgery. I can tell you it's a blessing
MRI is usually for ruling out MS and brain tumors… Docs like Casey don’t use them to find compressions…only very few super duper MRIs can see them… Casey knows they are in there and will go find them! I had 2… And I had / have TN1
I had 2 compressions, the largest was in the back and the smaller one in the front with a “large amount of scar tissue on both”. Neither if these showed up on my MRI. When we talked, Dr Tew knew I had to have something done. After doing my own homework, I knew the one and only solution that was worth pursuing was the MVD. I’ve never regretted this decision and for choosing my doctor - not simply accepting the ones close by.
Be strong in your resolve… Only you know what is best for you!
ayre said:
How many compressions did they find did any of the show on your mri
cris said:
I spoke with Dr Casey - yep…he actually took the time to correspond with me about my concerns / questions!!! I was so impressed! I live in Tenn and it was just too far to go to Michigan; he recommended Dr Tew in Ohio. after seeing him and having my evaluations - I had my MVD April 12 and have been steadily recovering. I was told it would take me a little longer since I was fairly advanced…I go back this Wednesday for my next check up. It is SO worth the 5 hour drive each way…I too would WALK to see Dr Tew! These two gentlemen know each other (over 20 years). My life is NOW worth living…now my family has the beginnings of the wife, mom, daughter and sister that had been missing and steadily ‘leaving’ for two years. I thank God above for Dr Tew! Do your homework…ask EVERY question you can think of…don’t be afraid to be afraid! I wish the best for ya!! Cris - 2 weeks off ALL TN meds and learning to LIVE again!!!
Well not as I expected but that happens when you are going to see the best of the best...He had an emergency in trauma so I never got to meet him.....I finally got to see his pa Jennifer???? Very sweet nice lady.. I talked to her she did some feeling test on my face asked questions what she could not answer she said to email him she did however say something that was interesting that I have never read at least yet and wondered if you heard this that once you have the nerve removed from the artery over time other nerves will do the same thing that the nerve(s) that was wrapped?// Does my description make sense also she said that trileptal has more side effects than tregotol???? so she did give me a cream to put on my face he did call last night after 8 but I was in bed..lol he apologized and said he would call sometime today so we will see!!! I still would like to meet him before I commit to anything!!! I asked about switching meds and she said not at this time????To see if cream helps!
I know MVD can have a long life… I don’t know if she was talking about same nerve getting recompressed later or what…did you try the cream? Please post when you talk or meet with him…have you watched any videos he has done?
Tegretal and trilepetal are cousins… Go to drugs.com and compare side effects list…around here seem to be quite similar…memory slow processing and tired!
