Approved for surgery in 24 days :/

1

Hi everyone. I have finally been approved for MVD surgery!! I am truly the most excited I have been since I found out I was pregnant 6 years ago!! Now, after a few hours the realization has set in that I am now going to undergo brain surgery... Insets the pure fear!

I am terrified of having surgery. terrified... I worry something's going to go wrong.. Is there anything anyone can recommend I have prepared before surgery? things to make my recovery easier/faster? I also read that you can't wash your hair? UGH!! I'm a clean freak I can't handle going 24 hours without washing my hair.. any suggestion? Is that true? I was truly worried at the beginning of the cutting of my hair and my scar but I'm not so worried about it anymore.. just how to wash or handle my hair..

I have a 5 year old, is there anything I can do for him? I know he's nervous about my surgery, I don't give him details but he knows I'm going to have surgery (and what that means) to make the pain in mommy's face and head go away.. but how do I comfort him. how can I comfort his fear of me being gone for a few days in the hospital, when I rarely am without him.. ever? I have been having nightmares and panicking now about complications.. is this normal?!

Is there anything anyone would recommend to make me most comfortable after surgery? pillows? drinks? food? Thank you for your help!! Sorry for the rambling!

2

Good for you....the next step in your TN journey. It's only natural to be terrified - my surgery was 3.5 months ago and I still look back on it and can't believe I was brave enough to go in without a thought (I was at desperation stage though). It is a huge operation, and recovery needs to be taken slowly, no matter how great you feel afterwards.

I don't know about others, but I HAD to wash my hair from day 3 every day with pre-op body/hair wash until the stitches were taken out, then had to wash in a specially medicated foam for another few days. (I was in hospital for 8 days which I think is the norm in Australia ...??...) It was still gross though because every morning and night the nurses would put Chlorsig on my wound to prevent infection, but that makes your hair gooey and oily. So, I just wore my hair up the whole time (also, I couldn't stand the feeling of my hair touching my scar or the back of my neck).

I also have children, aged 13, 11 and 6. They handled it well, and I prepared them for me being away and they understood that it was something that I just had to do in order to get rid of the pain. After weeks of watching me cry at every mealtime due to facial spasms, they knew I had to have the surgery, even my 6 year old. Before I went into hospital, I didn't make a big deal of it (I also only had 5 days to prepare, from seeing the neurosurgeon, to going into hospital).

It's normal to worry about the possible complications from surgery, particularly if your neuro did what mine did, which is give me the statistics of what could go wrong. But I think you have to remember that the odds are in your favour, as most TN surgeries are successful - you just probably hear more from people who's surgeries didn't work...

Take your own soft pillow into hospital...you'll need it as hospital pillows are crappy, and you'll have a headache for a few days. I felt sick and off my food for the whole time in hospital, however I ate crackers pretty much for the first few days breakfast, lunch and dinner. Take a lip balm...hospitals can be drying to your lips. Take a pair of comfy socks...if your feet are warm, so are you. I took an ipad with games loaded on it.....you don't always want to read, and I found playing games good for my brain! I also took one of those hair towels that you wrap your hair in after you wash it....So that I didn't have wet hair, and you can't really towel dry your hair because you'll be nervous about the stitches. I think I found this and my pillow the best two things I took in to hospital!!

Good luck with your surgery. When is it, so that we can be thinking of you on the day. I hope I've been a little helpful. Remember, it's good to feel nervous, but try not to over-think it too much. As long as you feel you are doing the best thing for you, you'll be fine. xx

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Hi Princess: Not sure I can add anything to what you are looking for except for support. The surgery works fine and I presume you have checked out everything. ONE THING HOW LONG IS IT SUPPOSED TO TAKE FOR MVD SURGERY? I am curious. I had 5 hrs of brain surgery 4 months ago today in Seattle. I had trigeminal neuralgia which was caused by a benign brain meningioma so not your surgery at all. I found recovery both in hospital and home challenging. But this was due to some other health issues, not the surgery. I would do it again in a heartbeat. I am pain free from TN and that is worth a lot. Good Luck. I think if this MVD relieves the pain of TN it will be well worth it. The success rate with a good neuro surgeon is high. Thanks for sharing and let us know what happens after the surgery. Anne

PS On the hair. I could hardly tell except by feeling that I had any hair removed near the ear. My surgeon did a good job leaving most hair in place. I am not in the habit of washing my hair every day, but I was told I could wash in 3 days. No particular precautions. I waited for 5 days for my first hair wash. I did the wash in the shower with all my other cleansing. The wound healed without incident, and my hair was not a problem for me. I can understand your concern. Everyone has their own techniques, but my experience with hair was not a problem.

b

4

Hi Princess,
I’m happy for you! MVD=HOPE
Here’s a link to a long thread with tips and tricks for preparing for an mvd,
http://www.livingwithtn.org/group/mvds/forum/topics/questions-about-preparing-for-surgery

My surgery was a month ago, here are my suggestions;

I made sure to write down what meds I was taking and when and gave it to the pre-op nurse on the day of my surgery so they could include it in my file. Just to be sure.

I wore yoga pants and a tank top and hoodie on the day of and only brought with me a small pillow,some lip balm, hand lotion, toothbrush and toothpaste, slippers and a pair of socks.

At home I made sure we had a bed set up on our main floor just in case I needed it.
I did, although I could do the stairs to get to my own bed, my sleep was restless the first 2 weeks, hard time getting comfy with my head and restless legs. So it was better for me and my husband I didn’t want to disturb his sleep. This way I could turn on a light read for bit, toss and turn and rest during the day, not far from everyone else. We also ensured we had some groceries in the house for nausea, like crackers, ginger ale, bread, jello, apple sauce.
I was really nauseous so I lived on tea and toast for awhile.
We also had ice packs in the freezer, which came in handy for some relief of surgical pain and swelling.
I always use heat for TN pain, but the ice packs helped with healing the incision area and providing relief from the bruised sides of my head.

The worst part of MVD for me were the weeks leading up to it…nervous energy, anxiety the works. I had never had a surgery before, so it was a bit nerve wracking to say the least. I did a lot of meditation to get through it.
The day of the surgery, I was super calm and relaxed.

I was able to have my hair washed in hospital on Day 3, I could have had it on day 2 but I wasn’t up to it.

As for your child, just explain age appropriately what your having done…"mom has an owie in her head and the doctor is going to fix mommy so I need to go to hospital and rest for a few days. While mummy’s resting you get to have a playdate with so and so and do something fun. So when I get back we can tell each other about our adventure!"
Kids pick up on nervous energy, hard to hide that, but reassurance is all you can do.

If you have any other questions, don’t hesitate to ask.
Positive thoughts and vibes for a great outcome!
(( hugs )) Mimi

5

It depends on what kind of stitches you have if you can wash your hair, I had the surgery on Weds and took a shower when I was released on Friday. The surgeon actually said to wash it every day, just dont let it stay soaked. I had regular stitches.

I was freaky about my hair as well, and I cant wake up in the day unless I have a hot shower, so I know how you feel. I did one thing with my hair that really helped. I went to my hairdresser and showed her where the incision was going to be, and she left the hair a little longer over it so it would cover the stitches. I walked out of the hospital with no bandage and no one would have known that I had brain surgery.

I was scared too before the surgery, but in the end, I would do it over in a heartbeat. I have no TN pain or ATN pain anymore, and as surgeries go, it really didnt hurt.

Best of luck

Wendy "crashgirl"