I am 17 years old. My MRI shows no compressions. And I have to get brain surgery. What could be more scary?! :(
Any tips, suggestions, warnings for me would be helpful. Anything!!! I want to be as emotionally prepared as possible - I tend to think of worst case scenarios..
Thanks so much for anyone and everyones support!
I am 51 years old and in the same boat. Age does not matter when faced with brain surgery. Let’s be brave together. It was suggested that I get a recliner for home. Makes recovery and sleeping much better they say. All the best. Keep us posted.
Hi there
You should both go to the groups tab ,under specific groups, and read through the posts by members that have had MVD. You will find lots of helpful info. Although it is frightening to think about brain surgery, I will tell you that it is not as bad as you expect it will be. I had mine in January, spent two days in ICU, and flew home five day slater. You will be sore, and weak, but I for one felt much better than I had anticipated . The recliner is a great idea! I slept in one for about two weeks after coming home.Rest is very important for recovery, so make sure you have a good support system in place so you can relax.
Best if luck to you both
Christine
Good luck to you both. I wish lots of pain relief for you.
17 is a hard age to have to face something like this. I bet you have many loving, supportive people in your corner. Take advantage of it. You will be surprised of what you are capable of and how strong you are.
Keep us posted. xoxo
I will be praying for you, sweety! I’m having my MVD a week before you on the 14th. I’m sorry you have to go through this at such a young age. I just keeping reminding myself how much better I will feel, when this is all over. You are too young to suffer any longer, you have a lot of years ahead of you to enjoy!
Actually it’s cranial surgery…that made it 10% more bearable for my scared butt! The younger you are most likely will bounce back good and soon…take it verrrry easy for 2-3 weeks.
Your MVD could last 10 weeks or 10 years. Or anywhere in between… After 2 years my pain stays at 95% gone…and that is good. Don’t read the MVD group stuff, those are larger percent people who were not helped.
I might have to have a second one someday…
But in your lifetime there might be a cure…or an easier path. The TNA website is where the long term research is.
Keep up to date on latest and greatest treatments as you go thru life. Do look under regional groups above on groups tab…there might be a support group in your area.
Keep posting!
I disagree, there are tons of helpful suggestions for people just about to undergo neuro-vascular surgery on the MVD page. True, not evryones results last, or even help. Sometimes it's the skill of the surgeon, sometimes they have more than one type of TN. I thought my TN was mostly type 1 because the other pain wasn't 24-7, it would go away when I slept. My MVD helped 100% with the shocking, electrical pain, and I rested, took pain meds when needed for weeks, didn't want to disrupt anything. But it wasn't long after being off narcotics and lowering/weaning off my Gabapentinn, that the other part of the face pain came back and as time has gone on has gone on has become worse.
The surgery itself isn't near as bad as you think, I sat up in ICU the next day eating breakfast, two more days in the hospital with a BAD headache and sent home with the headache, which eventualy went away. So even though my pain isn't all gone, the electrical pain is. Tips for your hospital stay. bring pajama bottoms, so when you walk in the hall you are more comfortable, I felt better in bed with them too. Bring a favorite drink, mine was gatorade, chapstick, throat lozeneges,..you might have a sore throat for a day. a small soft pillow helps, I made a cover for mine, so if it got stained I could wash it. That's about it I think for the hospital stay. you will read more tips on the MVD page. Just skip over things that are not tips and you'll be ok. Don't worry, really, not as bad as it seems.k
Hi brbgrl,
It’s completely normal to be nervous. I was very nervous and anxious in the 2 weeks prior to my surgery, and then the morning of I just felt this wave of calm surround me.
Definitely read in the MVD group, I read ALL of it, there’s so much valuable info in there. Knowledge is power and it made things less scary, I knew what to anticipate and felt way more comfortable going in for my MVD after reading everyone’s experiences.
We’re all different, but it will give you a general idea on what to expect and how to prepare etc.
I agree with kg, the surgery itself isn’t near as bad as you think…I woke up in icu vomiting, but only vaguely remember as the anaesthetic was slowly wearing off, the nurse at my bedside was so kind and caring.
I remember in the 2 days to follow, I just felt vey uncomfortable as my head felt bruised where they had attached the halo to keep my head still for surgery, and sore because my head had been in one position for over 3 hours in surgery. Ask for more pillows to get comfy, I too brought a small pillow from home.
Make sure you are getting your pain medication on time, as well as your TN meds . I wrote my meds and doses down as well as what times of day I take them and had them add it to my file.
I wasn’t interested in reading, tv or anything while in hospital, I really just wanted to sleep or rest. I was pretty nauseous and only drank tea, sucked on ice chips and by day 2 tried some toast.
Feel free to message anyone of us with further questions, but please do read through the MVD group as most answers can be found there.
Thinking of you, Mimi
Thanks so much everyone! You have no clue how much help your kind words mean to me...
I will keep everyone updated once the big day comes! Wish me luck!
Good luck to you!
Please keep us posted!
i just had it last week...and the tn pain is 100% gone!
the bummer is that they let me out too soon and i have been sick since, and today discovered that when i blow my nose fluid squirts out lol.
all in all the surgery is easy, your asleep. the first day in icu you are medicated, (a little too much i think) so it is no big deal either. for me the dilauded made me very nauseous, so my sister asked that i be switched to a pain pill, since really i just had a lite headache and nothing more...they gave me norco and in about 4 hours i was feeling great. now like dummy i told the dr i felt good, so he said "do you want to go home?' i said sure! lol bad idea, stay in the 4 days to make sure
Mace - If you are only 1 week post-op and have fluid leaking from your nose...you should probably call your doctor ASAP! It could be a CSF leak.....not good.
Mace said:
i just had it last week...and the tn pain is 100% gone!
the bummer is that they let me out too soon and i have been sick since, and today discovered that when i blow my nose fluid squirts out lol.
all in all the surgery is easy, your asleep. the first day in icu you are medicated, (a little too much i think) so it is no big deal either. for me the dilauded made me very nauseous, so my sister asked that i be switched to a pain pill, since really i just had a lite headache and nothing more...they gave me norco and in about 4 hours i was feeling great. now like dummy i told the dr i felt good, so he said "do you want to go home?' i said sure! lol bad idea, stay in the 4 days to make sure
lol yea the fluid is squirting out of the scar, so really not good! i will see the surgeon in about 4 hours to get the birds eye low down on this caper.
i posted a vid of it squirting too, very weird
Of course you are scared! I was petrified leading up to the surgery. They couldn’t tell from my MRI if there was compression or not-so I was unsure of the outcome. (I was 55 yo last year when I had surgery). However, after a few years of unbearable pain I was willing to give it a shot. Like others have mentioned it is not as bad as you might imagine. The great news for me ( and I hope you too) is that it worked wonderfully!! I have not had ANY TMG pain since I woke from surgery. It also turned out that mine may have been caused by scar tissue on my brain stem! Go figure how that happened. It has been just over a year since the surgery and no pain. I hope you have a similar experience. Take it easy after you get home. Don’t rush it. Let your loved ones take care of you. The only thing besides tenderness around the scar-still sensitive sometimes-that I have noticed is a change in the way some foods taste. Mostly a sensitivity to salt. Foods can sometimes taste VERY salty for no reason. Otherwise, the best decision I have ever made medically. Good luck to you. I hope happy pain free days are ahead!
I was very scared before the surgery also, but beleive me it's not as bad as you are probly thinking. Good luck, waiting to hear your out come.
It's very normal to be scared before surgery. But you are very young and have that on your side.... recovery is faster and easier when you're 17 versus when you're 57!! Where are you having your procedure done? Find out if you will be in an ICU after surgery. After my first MVD in Pittsburgh, I was in a neuro ICU and the care was awesome. After my second MVD in Cleveland, I was just on a regular neuro floor after a few hours in recovery room and my experience was horrible. There just were not enough nurses to go around and my family was not there. Had I known in advance that I would not be in ICU, I would have hired a private duty nurse. You need someone close at hand.
A 14 year old just had MVD and she did great! It Is so normal to be scared. I would be too. But hundreds of people have this surgery all the time. She is on Facebook. Would you like me to see if she would talk with you?
That would be great!
Debbie said:
A 14 year old just had MVD and she did great! It Is so normal to be scared. I would be too. But hundreds of people have this surgery all the time. She is on Facebook. Would you like me to see if she would talk with you?
I am having my MVD done in New Orleans and will be in ICU for a day or so after.
Not Again said:
It's very normal to be scared before surgery. But you are very young and have that on your side.... recovery is faster and easier when you're 17 versus when you're 57!! Where are you having your procedure done? Find out if you will be in an ICU after surgery. After my first MVD in Pittsburgh, I was in a neuro ICU and the care was awesome. After my second MVD in Cleveland, I was just on a regular neuro floor after a few hours in recovery room and my experience was horrible. There just were not enough nurses to go around and my family was not there. Had I known in advance that I would not be in ICU, I would have hired a private duty nurse. You need someone close at hand.
Hi brbgrl. The girls name is Abigail Miller. You can find her on Facebook. I will tell you she has a teal pic that says Team Abigail. Her mom is Dawn Neumann Miller. You can friend her too. Dawn said they are happy to call you even. It will be nice to hook up with anoth teen. She literally just went home yesterday from her MVD.