hooray!! can't wait to hear your outcome victoria!!
Praying for you today Victoria! Let us know as soon as you feel up to it how things went! Can't wait to hear your success story!
Tina
Our thoughts are with you Vic xx
Hi I an just home from hospital, had my MVD Monday 9 th July at 10:30 a fantastic team took Me to theatre and I wasn’t scared because you guys had been there before me and survived to tell your tail. I awoke at 2:30 to a very nice Dr wha asked me how I was and I felt ok there seemed no pain where there was before, so I feel a successful operation I am getting twinges but have been told that it will take time to settle I am not to do anything like lifting house work ect for 4 weeks that will be the hardest thing to do, how do I feel well a lot better than I thought I would I am keeping up with the pain meds taking every few hours , I am hoping it doesn’t get worse , where they have cut my head open it is numb and I still have plasters on it but it was changed today and I got my husband to video and photo it, so will post it on here, I have got double vision but have been told this will go, ancient feel like there is cotton wool in my ear, I feel on tender hooks waiting to see if the pain stays away I am positive that it will… So all in all I feel ok I am going to do as you Tina and do a blog of each day for others I feel I can support others and advise on the op xxx
Woohoo! I am so excited for you! I had double vision too, wear a patch or something, it will keep the headaches away. It should go away by the weekend. Awesome! I am so tickled you got thru it, you waited for so long. You and your family will be shocked at how quickly you bounce back! Praying for quick healing! 
Victoria, fabulous news, you are so brave coming onsite and writing already. Get lots of rest and allow yourself to heal.
Victoria Swan said:
Hi I an just home from hospital, had my MVD Monday 9 th July at 10:30 a fantastic team took Me to theatre and I wasn’t scared because you guys had been there before me and survived to tell your tail. I awoke at 2:30 to a very nice Dr wha asked me how I was and I felt ok there seemed no pain where there was before, so I feel a successful operation I am getting twinges but have been told that it will take time to settle I am not to do anything like lifting house work ect for 4 weeks that will be the hardest thing to do, how do I feel well a lot better than I thought I would I am keeping up with the pain meds taking every few hours , I am hoping it doesn’t get worse , where they have cut my head open it is numb and I still have plasters on it but it was changed today and I got my husband to video and photo it, so will post it on here, I have got double vision but have been told this will go, ancient feel like there is cotton wool in my ear, I feel on tender hooks waiting to see if the pain stays away I am positive that it will… So all in all I feel ok I am going to do as you Tina and do a blog of each day for others I feel I can support others and advise on the op xxx
So glad you are doing well, Victoria. I am day 11 post op and feeling pretty good. Pace yourself and don't overdo. Your body will tell you if you've done too much. I was able to stop round the clock pain meds at one week. Still take something most nights as headache and fatigue sets in. But you will bounce back fast. I think day 8 was my real turning point. Hoping your recovery is easy and your TN pain gone forever!
Well done all you girls who were brave enough to go through with it, I wish you well, keep posting xxx
hi Tinah and Jess, how long were you told you had to rest before doing any thing i have been told up to 4 weeks ,, my hasband wont let me do anything and yesterday I slept all day and through the night,, this was good and felt better this moring for it am going to go sit and watch tv in a bit ,,, and i took my plaster of today and feel very exposed ,, im very worried that somthing will go wrong but it has been 7 day since the op it does go quick and the codene did bung me up and laxertives helped.. still have a little fuzzy vision how long did this last for you tinah ,, hope it goes soon,, would hate to have it for ever ,,,, am looking forwards to driving have to see the DR before i can so waiting for the appoinment thats all for know lots of love victoria xx oh and thanks for the support
hey Victoria! I hate to say it, but week #2 was the worst for me. I have no patience and the laying around was really getting to me. My dr. told me 4 weeks too, but I started doing little things about week 2. The fuzzy vision will go away, it just takes time. I know you get sick of hearing that. Once the surgery was over, I just wanted to get back on my feet and get back to life. We are stuck on the sidelines for all this time because of the pain and that last few weeks of healing seems to go forever. You know, something else you might not be prepared for, is that from here on out, you will be on an emotional rolller coaster. There is alot going on with you getting off the meds and the healing going on and sometimes it makes your head swim. I'm so glad to hear you are doing so well! Remember, to get to that nerve they cut through and moved around alot of other nerves and muscles and it takes a LONG time for those to heal. I still get sore neck sometimes. It is just glorious the first time you realize that you can get back to "normal". Keep your chin up and get plenty rest. You've just had major surgery on your head! Hang in there, one day soon, you will be zipping around like never before!
The fuzzy vision will go away, but it may take some time. Do you have blurry vision or double vision? Is it in both eyes? My surgeon told me that some people just heal differently and it effects different things. He said that he was no where near my optic nerve, just a side effect of healing. I still have double vision a little when I open my eyes after having them closed for any period of time. ( Hide and seek is a difficult game for me! HAHA! ) But it is slowly getting better too. I also get dizzy going down stairs. I think its just the depth perception. It makes me so dizzy that I have to go down them one step at a time and hang on the wall. He said it could take 6 months for me to get over all that. Jessica said she was still healing about that time too. Try not to get discouraged. Just keep thinking that healing takes time and you have earned some rest from all the time you spent in pain before. Wish I was there to give you a big hug for being such a trooper! You made it! Now you are almost done with TN! Yay! :D
Thank you Tina and thank you for e instant chat that soo made me feel better having instant answers helped a lot I will keep you posted and I’m sure I will have many more questions thanks again and big hugs back xx
blder1 said:
I hope ur still doing well I am know 7 days in the pain is getting better butt then I am on pain meds all the time took my plaster of today and the scare is healing well, how is yours ? Still haven't washed my hair but it's not as bad as I thought it would be dry shampoo is great , I have been doing nothing just watching tv and sleeping which is great have good family support to keep me postedSo glad you are doing well, Victoria. I am day 11 post op and feeling pretty good. Pace yourself and don't overdo. Your body will tell you if you've done too much. I was able to stop round the clock pain meds at one week. Still take something most nights as headache and fatigue sets in. But you will bounce back fast. I think day 8 was my real turning point. Hoping your recovery is easy and your TN pain gone forever!
I am now 2 weeks post surgery and feeling good. I was able to wash my hair the day I got home from the hospital. Tape over wound came off on day 10. My scar is less than 3 inches and healing very well. We go to the Caribbean this week and dr. said I can swim as long as I don't "soak" underwater. My energy level seems to be bouncing back. Still need an occasional nap, but overall doing what I want/need to do within reason. I have had times this weekend where I felt pretty much normal and didn't think about my head. If I get tired I feel it, but overall the headaches are gone and I am finally able to get comfortable in bed. That was really hard the first week. Best of all for me, still no nerve pain!! I hope you continue to improve daily, Victoria! It is so helpful to have this board where we can all compare notes about the ordeal that is TN!
I am scheduled for MVD on Tuesday the 31st and reading everyone's posts helps make this seem like I am doing the right thing. I have ATN and don't get the spasms all day long, but when they DO come, they are awful! I even wondered if I had TMD rather than ATN at times. Apparently I have a "vascular loop" and they are thinking this is where the pain is coming from. I hope so... and I hope this works!! My son is getting married on Sept 2nd and I would hate to think I have done this for nothing!! I have been taking Gralise (gabapentin) since April and it only helps for about an hour after I take it, as does Cymbalta and Trileptal. I have been taking Vicodin since last October and I am more than ready to be rid of that ugly beast, too.
I think that you're doing the right thing and will feel really good by your son's wedding!! I think that you'll still be healing, but will really be heading towards the right direction and well enough to be dancing and having fun!!! Looking fwd to hearing from you after surgery!! It's going to be great ... I had ATN too and I'm feeling AWESOME and drug free. HUGS! Jess
tnt1230 said:
I am scheduled for MVD on Tuesday the 31st and reading everyone's posts helps make this seem like I am doing the right thing. I have ATN and don't get the spasms all day long, but when they DO come, they are awful! I even wondered if I had TMD rather than ATN at times. Apparently I have a "vascular loop" and they are thinking this is where the pain is coming from. I hope so... and I hope this works!! My son is getting married on Sept 2nd and I would hate to think I have done this for nothing!! I have been taking Gralise (gabapentin) since April and it only helps for about an hour after I take it, as does Cymbalta and Trileptal. I have been taking Vicodin since last October and I am more than ready to be rid of that ugly beast, too.
Wow! My whole message got eaten! Darn, and it was a good one too. I'll never be able to craft one like that. Long story short. I've been reading this thread, and this thread was what made me join. I am having MVD on 8/9- or 9/8 for our UK friend. What I was looking for was everyone to chip in with what I can expect from when I wake up until I make it over that magical hump. You can leave out the driving part as I broke my right leg on June 22 and had a rod and screws placed. At least I will be forced to rest and keep my leg up to reduce the swelling, something I have not been doing. But it did make the MRI interesting- even though I was told the hardware was MRI compatible I still held my breath the first minute!
I remember about the constipation part- something I remember well from having kids (my boys are 8, 7 and 6) and something about wax in the ear. But is that on the affected side?
I will be staying with my dad, something I am already doing since I broke my leg. He works out of the house and I can live on one floor. My wonderful husband has been taking care of the kids and doing a great job playing Mr. Mom. I see the kids all the time. They love to come to my dads house and play Wii- something we don't have at home. Also by staying with dad, I will be away from all of the stress from feeling obligated to do things around the house.
I am hoping to not get too worried about the upcoming surgery, I already pushed the date back because I have front row seats to see my favorite band. One of my closest friends is flying in from London to see the show with me (I love when she does this, and it must be nice to be able to do it). She will be here for a few days prior and she even managed to get us both meet and greet passes! So I have that to look forward to as well. So I will go to the concert on 8/7, she leaves on 8/8 and surgery is 8/9.
I am looking for what medications I will be taking after surgery. I am currently on Tegretol- although I was told to stop taking it because it no longer worked, I was too scared to stop. What if it started working again, or it worked a little... And it didn't interact with my new medication, Which is Lyrica. How long do I have to be on these before I can stop them? Or do I have to keep taking them for a while? What is the shower and hair situation? And how much hair did you guys have shaved off? I have long curly hair, will it show? What about pain meds- in the IUC and beyond. How bad were the headaches? I suffer from migraines, I was told that mine would be worse. Anyone with migraines here?
I'm just looking for some condensed, quick and dirty info! You all seem so nice and willing to help. I need all the help I can get, trust me!
Hey!! I think spending time with your bestie right before, going to a concert, etc sounds like a fabulous way to celebrate! I threw myself a party and even had a cake that said celebrate your big day. I think life is more fun when we can laugh at ridiculous situations, ie: TN surgery. Plus, they will probably schedule your pre-op appt. the day before your surgery and you can take your friend with you.
I was also on Tegretol and Lyrica. I actually didn't wean off of those for weeks after and I slowly, slowly did so one drug at a time. I started with Tegretol first and once I was off, I stayed on Lyrica for a few weeks long and then weaned off. So it really took me probably 2+ months to be drug free completely. My Dr. advised me on all of that.
Regarding the wax in the ear — that was me. I woke up and couldn't hear out of my left ear, which I had the surgery on my left side. I was freaking out, but I guess it's just standard (at least in my case) they padded some kind of wax into my ear canal or somewhere in there to make sure there wouldn't be any spinal fluid leakage and there wasn't. It took about 5 weeks until it completely dissolved on my own. It was more annoying than anything.
They removed much less hair than I thought, not nearly as bad as I planned on. It was just a few inches and it has since grown back . I think it was 2 weeks until I could actually like really get in the shower and really was my hair. So I would otherwise take a bath everyday and my Mom or best friend would wash my hair in the sink. I could have water kind of run over my scar, like if my hair was washed in the sink, but not like heavy water like the shower would be. For the time that I couldn't get it wet at all, my best friend diluted baby shampoo in a little spray bottle, and she would spray that into my hair while I would lie with a towel on several pillows propping me up. And then she'd use a wash cloth and kind of massage my scalp and then rinse it all out with a spray bottle with clean warm water. It wasn't like super clean perfect hair, but it was better than 5 day old unwashed hair. Made me feel more normal too.
It sounds like your hair is long enough, you won't even see your scar.
As far as in the hospital, just be prepared to not be able to move your neck. It will be really stiff for a long time, but it gets better and better each day. Use your abs to pull yourself up ;) They gave me some good drugs in the hospital. Be sure to take what they offer you , don't let it go too far between doses. That's my opinion. You're in the hospital, if they say you can take another something and you're not in terrible pain, I'd take it anyway. I do not have migraines so I'm not sure about that, but I'm wondering if surgery will help with those too??
If you have any other questions feel free to message me. It's going to be great!! 2013 will be your year! No more broken leg and no more TN!! HUGS, Jess
hfavorite said:
Wow! My whole message got eaten! Darn, and it was a good one too. I'll never be able to craft one like that. Long story short. I've been reading this thread, and this thread was what made me join. I am having MVD on 8/9- or 9/8 for our UK friend. What I was looking for was everyone to chip in with what I can expect from when I wake up until I make it over that magical hump. You can leave out the driving part as I broke my right leg on June 22 and had a rod and screws placed. At least I will be forced to rest and keep my leg up to reduce the swelling, something I have not been doing. But it did make the MRI interesting- even though I was told the hardware was MRI compatible I still held my breath the first minute!
I remember about the constipation part- something I remember well from having kids (my boys are 8, 7 and 6) and something about wax in the ear. But is that on the affected side?
I will be staying with my dad, something I am already doing since I broke my leg. He works out of the house and I can live on one floor. My wonderful husband has been taking care of the kids and doing a great job playing Mr. Mom. I see the kids all the time. They love to come to my dads house and play Wii- something we don't have at home. Also by staying with dad, I will be away from all of the stress from feeling obligated to do things around the house.
I am hoping to not get too worried about the upcoming surgery, I already pushed the date back because I have front row seats to see my favorite band. One of my closest friends is flying in from London to see the show with me (I love when she does this, and it must be nice to be able to do it). She will be here for a few days prior and she even managed to get us both meet and greet passes! So I have that to look forward to as well. So I will go to the concert on 8/7, she leaves on 8/8 and surgery is 8/9.
I am looking for what medications I will be taking after surgery. I am currently on Tegretol- although I was told to stop taking it because it no longer worked, I was too scared to stop. What if it started working again, or it worked a little... And it didn't interact with my new medication, Which is Lyrica. How long do I have to be on these before I can stop them? Or do I have to keep taking them for a while? What is the shower and hair situation? And how much hair did you guys have shaved off? I have long curly hair, will it show? What about pain meds- in the IUC and beyond. How bad were the headaches? I suffer from migraines, I was told that mine would be worse. Anyone with migraines here?
I'm just looking for some condensed, quick and dirty info! You all seem so nice and willing to help. I need all the help I can get, trust me!
Welcome to the boards! So glad you are going ahead with the MVD! It will be great for you! Jessica pretty much covered all the good stuff. She helped me get thru mine, she's such a blessing. :) I have suffered from migraines since 1999. About 4 or 5 hours after I woke up after surgery I had the WORST migraine ever. They gave me some good drugs and then put a heat pack on my eyes. I slept thru the night and it was gone by morning. I still have them every once in awhile. It's basically like before, but mine are usually triggered by an allergy to pollen or dust. I definitely suggest you tell the anesthesioligist if you get queasy from motion sickness or from any prior anesthesia (like epideral). They can add some great stuff into your IV and keep you from being sick after. The pain meds make you so nauseas. I have long hair and the only time you could see my scar was when I pulled it up in a ponytail. Sometimes I just make a low bun on the left side behind my ear. Got my hair off my neck and hid my scar. Alot of your questions depend on how your surgeon finishes your incision. My stitches were on the inside and he glued the skin shut so I was able to shower as soon as I got home. Be prepared to not have much appetite while you heal that first week or so. I lived on pudding cups and mini bagels. It was the only thing I could stomach. Please keep us updated on how things are going! I will be praying for you here in Tennessee!!
Victoria, thinking about you today. How are you doing? Keep us posted on your recovery! :D
Hi tinaah I’m ok I’ve just got out of hospital was in for 7 days due to a CSF was leaking out of my Scare was very scarry I went to my dr who sent me strait back to the hospital which was 100 miles away and was admitted wound re-stitched and lumber drain to drain the fluid so all could heal better, I had to lay for 5 days but this did make me relax and I couldn’t do anything, hopefully it all ok know am a little scared it will come back , I can’t do anything for another two weeks so back to doing nothing they were brilliant at the hospitaland made me feel at ease , I have got pain in my tooth but it’s a sensitive feeling so hope it will go in time so a bit of a set back, funny thing was the was a young girl in the bed next to me who had TN and had the same op , she had a tumer pressing on hers though , she got menengites and was in for two weeks but also has a leak was nice chatting about TN ans swapping story’s acant believe that would happen , so that’s the reason I have been quiet and not on here am starting to get a little more energy so may go for a little walk tomorrow xx 