Dr. Casey has added me to his calendar to have my surgery on October 31. Actually he said I'm on the calendar for the 30th/31st, which I'm guessing the 30th will be my pre surgery appt and then the surgery will be on the 31st.
I really wish I could have gotten it sooner but this is the earliest it works for my mother-in-law to come out and watch the kids all week, plus it wraps up football season for my cheerleaders, a 16th bday, and an Eagles concert.
I saw Dr. Casey on Monday and he was awesome! He spend about an hour and a half with me and he was the first doctor (I've seen 2 other neurosurgeons, 2 neurologists and 1 anesthesiologist these past 7 months) that saw the compression on my MRI. He showed me the vein that is clearly wrapped around my nerve. He also definitively diagnosed me with TN1. I have had TN1, TN1 w/ a little TN2, and Atypical all diagnosed but I know that Dr. Casey is far more knowledgable than all my other doctors combined. He has dedicated his career to TN and has worked over the years to improve the MVD surgery for greater successes and less complications. I trust him completely.
For those of you who have had the MVD surgery by Dr. Casey, could you fill me in on some details. Specifically, I'd like to know about the pre-surgery appt., how many nights you were at Oakwood, your experience at that hospital, and how many days you stayed in town after for a follow-up. It will help for my husband's work schedule and in booking my MIL's trip here.
I had to reply since no one else seemed to check in. I had my surgery with Dr. Brown in Long Island, NY and I live in Newark Delaware, so I had to travel for the surgery. Dr. Browns office had one of their people call me and they gave me the basic run down on the time frame etc. They also gave me hotels that worked with the hospital, where in the area and provided discounts. I also discussed the time frame of being in the hospital...3 days for me, surgery on Wednesday, was out on Friday, but luckily the doctors office had suggested holding the hotel for the weekend as well in case I didnt feel like the 4 hour drive home and that ended up exactly what happened, I stayed in NY until Sunday morning. I had some allergic reactions and side effects from the surgery ( you wont, I'm allergic to everything) so I was too exhausted for the ride, but by Sunday I was ready to go.
Feel free to message me if you have any questions about post op etc, I'm not sure if you are near the hospital or not, but if you are traveling and getting a hotel, I suggest asking for a handicapped room, it sounds weird, but I was woozy after the surgery and it would have been nice to take a shower with a seat in it!
Best of luck to you and let me know how everything works out
Thanks so much Wendy! I've actually connected with another gal on here who is having and MVD with Dr. Casey this week so she is filling me in on all the details and directed me to a great place to stay. I'm about a 4 hour drive from Detroit, which isn't great, but sure beats having to fly across the country. My surgery is now scheduled for Wed 10/30 so I plan to stay in town through the following Mon/Tues as I know now that he sets up a follow up appt for one of those two days. I've actually found a great temporary apt to rent for the week in a senior center. Patients from this hospital often stay there when they are coming from out of town. I'm sure it is equipped for handicapped since it's part of a senior center but I will be sure to ask.
You were able to take a shower right after? I had thought that you couldn't get your hair wet for a couple of weeks afterwards so I was figuring that baths would be my only option. I'm a shower gal so I'm hopeful for that :).
I had regular stitches in my head, so Dr. Brown actually wanted me to shower, but said not to keep it soaked and to dry it off quickly. Some surgeons dont allow it because they use glue or staples from what I have heard, you may want to ask ahead. That was one of the things I was worried most about, lol....I need my showers just to wake up in the morning!!!!
I also had my hairdresser shorten my lower hair, by my neck but leave the top longer. I showed her a photo from this site of the incision so she could see where he would cut, and that way she left the top longer to cover it. I went to a restaurant a week after and no one would have known I had stitches in my head!!!
I will be getting staples so I'm guessing no showers for me :( . Thanks for the hair tips. My hairdresser and I have already discussed my plan but I think I will improve it with your suggestions. I've had pretty long hair for years. I talked about maybe shortening it so there wasn't such a drastic change in length but she recommended keeping it nice and long so that my hair, and the weight of it being long, would cover the area. A lot of our convo was about my highlights and base color as I know that I will have to wait for a while before getting color/highlights after surgery. I will be in her chair though the Monday before my Wed surgery for that :).
I figure my hair loss and scar will always be hidden except when I wear my hair in a pony (pretty much everyday for my workouts). It will be my badge of courage though. You have to pretty courageous just to get through this disease each day and again full of courage to take that big leap with an MVD. When I tell people about this disease who don't know about it I say that the good news is that is a solution that will likely eliminate the pain but the bad news is that it's brain surgery.
I agree its a struggle, I have lost so called friends over this, but then again, the ones that didn't understand weren't my friends anyway.
My scar is hidden, but I can feel an indentation that wasn't there before, and I will warn you ahead of time, the area will be numb for a while, in my case it was the whole area and top of my ear, but now I just have one tiny spot at the top of the incision that is weird feeling, hard to describe. It also itches...but lately my indentation got deeper, and I talked to a few people who had the MVD and they said theirs did too, so I am going to assume that whatever they use to fill the whole shrinks? I work as an auto adjuster so I call it Bondo, lol, like we use for cars!!
Just trying to save you a step or two in the healing process!
9 months later and the "hole" creeps me out. LOL I notice that when I have neck pain (from the muscles being tight) the dip in my head seems very deep. If I take a muscle relaxer, it becomes more shallow. I think the indentation gets deep because there are a lot of muscles that connect in that area so when there's tension, they get rigid and lift. Just my theory. The surgeon didn't seem concerned and the pattern I've noticed seems to correlate so I don't worry about it as much anymore. It's freaky though! haha
Thats wild that a muscle relaxer makes a difference...I never noticed that, but I do look like a dog scratching its ear with it hind leg when it starts itching, lol.
wendy
ihold said:
Wendy,
9 months later and the "hole" creeps me out. LOL I notice that when I have neck pain (from the muscles being tight) the dip in my head seems very deep. If I take a muscle relaxer, it becomes more shallow. I think the indentation gets deep because there are a lot of muscles that connect in that area so when there's tension, they get rigid and lift. Just my theory. The surgeon didn't seem concerned and the pattern I've noticed seems to correlate so I don't worry about it as much anymore. It's freaky though! haha
I wonder if they will dress up for Halloween in the hospital....I could see myself waking up and thinking I was in the land of the dead or a bad cartoon or something and freaking out.....
I'm sorry , I have a twisted mind...I always look for the humor in everything
Wendy
mybell said:
I will be getting staples so I'm guessing no showers for me :( . Thanks for the hair tips. My hairdresser and I have already discussed my plan but I think I will improve it with your suggestions. I've had pretty long hair for years. I talked about maybe shortening it so there wasn't such a drastic change in length but she recommended keeping it nice and long so that my hair, and the weight of it being long, would cover the area. A lot of our convo was about my highlights and base color as I know that I will have to wait for a while before getting color/highlights after surgery. I will be in her chair though the Monday before my Wed surgery for that :).
I figure my hair loss and scar will always be hidden except when I wear my hair in a pony (pretty much everyday for my workouts). It will be my badge of courage though. You have to pretty courageous just to get through this disease each day and again full of courage to take that big leap with an MVD. When I tell people about this disease who don't know about it I say that the good news is that is a solution that will likely eliminate the pain but the bad news is that it's brain surgery.
Actually, my surgery is now scheduled for Oct. 30 (they called and gave me the choice of those two days) so maybe now I'll be awake in the hospital to enjoy and "costumes" but no candy for me of course :). Not looking forward to that big dent in my skull. At least as a woman, it will be always covered by hair I guess. I'm willing for that big dent though and more to rid my self of TN.
Yeah, a dent in my head is worth it....plus you get used to it, unless you decide to pull a Sinead O'Connor, lol
mybell said:
Actually, my surgery is now scheduled for Oct. 30 (they called and gave me the choice of those two days) so maybe now I'll be awake in the hospital to enjoy and "costumes" but no candy for me of course :). Not looking forward to that big dent in my skull. At least as a woman, it will be always covered by hair I guess. I'm willing for that big dent though and more to rid my self of TN.
Mybell, don’t worry too much about your hair. When I have my hair down, you can’t tell I had part of it shaved or see the incision. Dr Casey made my incision right along my hairline and its healing nicely. Got staples out Thurs, after 3 wks. You will actually shower at the hospital before you go home. You can wash your hair right away. The bandage comes off after your shower and they leave it uncovered from that point. You can shower and wash your hair just avoid the incision. Showering actually helps with the itching. As for a dent, I haven’t noticed one, maybe it depends what they fill the opening with. Dr Casey uses a bone substitute called HydroSet.
Glad to see you got in at Oakwood Commons. One of our bathrooms had a corner seat, so I was able to shower there. Let me know if you have any questions:)
mybell said:
Thanks so much Wendy! I’ve actually connected with another gal on here who is having and MVD with Dr. Casey this week so she is filling me in on all the details and directed me to a great place to stay. I’m about a 4 hour drive from Detroit, which isn’t great, but sure beats having to fly across the country. My surgery is now scheduled for Wed 10/30 so I plan to stay in town through the following Mon/Tues as I know now that he sets up a follow up appt for one of those two days. I’ve actually found a great temporary apt to rent for the week in a senior center. Patients from this hospital often stay there when they are coming from out of town. I’m sure it is equipped for handicapped since it’s part of a senior center but I will be sure to ask.
You were able to take a shower right after? I had thought that you couldn’t get your hair wet for a couple of weeks afterwards so I was figuring that baths would be my only option. I’m a shower gal so I’m hopeful for that :).
Thank you, Thank you, Kathy, for all the great tips and what to expect! I will probably message you in a while to get some of the nitty gritty details. I have just over 7 weeks now . . counting down the days :)!