Hey everyone,
I am having MVD on March 11th and I am looking for the advice from you that the hospital doesn't know, stuff that you have learned from actually going through it. I don't mind TMI. I will have help for as long as I need. I really appreciate it! Thanks! -Aimee
Hi Aimee, I had an MVD just over 2 weeks ago at Johns Hopkins. Dr Lim found three blood vessels on my trigeminal nerve that he took care of.
I woke from surgery with the majority of my TN pain gone, only left eye pain remained. I did have a headache and pain from the incision. I had pain issues the first four days, which kept me in the hospital a little longer than expected. As soon as I started to feel better I started to walk around the halls of the floor. I believe it was at the end of day four that I started these walks, very slow walks at first but I kept going. I walked around the floor 9 times on that day (rested for a bit in between laps) which they told me was a mile, I walked with thr huge stitched up incision showing with crazy gooed up hair in all directions, in all my glory! As I was better they released me not long after that. From then on I kept feeling better every day, just took Tylenol every four hours around the clock until about day 15 when I stopped Tylenol completely, I felt fine, a little incision pain but it was/is not bad.
One thing I had in the hospital with me was two ice bags (the fabric ones (fabric outsides) with the plastic insides) the hospital ice packs are horrible and ice on my head helped. The nurses even liked them and asked where I got them (just about any drug store, but get the fabric ones, not the all rubbery ones).
The halo dot on my forehead is still raised but doesn’t hurt.
I work from home and was able to go back to work on day 10, but I did need to take a nap.
The incision is a little bigger then I thought it would be but I have no TN pain so it is not a problem. The goo they put on your hair is annoy to get out, that is for sure. Hats don’t really work as the incision is healing as I didn’t want anything touching it so I used very soft scarfs that were not easy to snag (the incision was not smooth) to wrap around my head if I went anyplace. The incision hurt a TON if sunlight got on it so the scarfs helped for that, too. Also had trouble with sunglasses as the arm of the sunglasses touched the incision so we bought a super cheap pair of sunglasses and broke one arm off so I didn’t have anything touching the incision.
I was very nervous before the surgery despite all I had read so I understand your query for information.
I am no longer in TN pain, I no longer have a headache every day, I am no longer dizzy, and I am less tired than I have been in a very long time. Oh happy days!!!
I wish you all the best, the MVD was the best decision for me, I am thrilled with the results.
Thank you, Signing. That is very helpful! I for some reason, assumed that I couldn't ice the incision, but I guess it would make it feel a lot better. It sounds like, compared to other recoveries, you bounced back incredibly fast! I am very happy for you and your fantastic results!
-Aimee
I brought my favorite Gatorade with me as I don't care for hospital juices. I had my surg. at OHSU and had my surgery time pushed back from 7am to 7pm, was a long and horrible painful wait. Bring meds with you in case it happens to you. The waiting room is very cold also. I also brought my own pajamas, because after the first day I wanted them. I woke in recovery (in the middle of the night, since surgery was so late) and felt where the screw was on my forehead and by the ear and in my sleepy state promptly scratched off the scabs. Oh, well, healed fine. The most pain I had was from the halo (too tight?). It was the most massive headache I can describe and it lasted for about a week, easing some each day, still I need heavy duty pain meds. (stock up on a bottle of stool softeners, last thing you want to do is strain after surgery at home). The incision didn't bother me at all, no pain ever, healed fine and long hair covered it, unless I wear a pony tail these days. One of the aides saw me trying to clean blood off the incision in the bathroom, and she brought a ton of washcloths and filled the sink with warm water and gave me no-rinse shampoo to help get the blood out of my hair. The night nurse smeared some ointment on the incision and rest of the dry blood even though I told her I was allergic to Neosporin..ended up with a horrible itchy rash the next am as I was discharged. I think it was the first or second night home I ran a fever of 102.9, massive throbbing headache, sobbing. Should have gone to ER, probably had a spinal leak. But I survived. I had lost my job about 5 mo.s before surgery, so there wasn't quite the rush to get back except that I was running out of credit to pay COBRA insurance. Although I was up and about after the first week, I didn't feel great, but was able to make -do. Tired easily for a long time. All in all the surgery really wasn't bad. Staff was great, except dietary ( ah, what's a lacto-vegetarian diet?). Wish I had stayed the extra day my insurance permited, probably would have spiked my fever then. ps, I'm in the oregon group too. kg Oh, I developed a bad case of TMJ after, that took 6 mo's or so to get better. I think the intubation pulled my jaw out of alignment. The docs saw it after surgery and ordered PT at home, which didn't help much.
I was just released yesterday from UAB hosp Birminghma,al. I had surgery thursday, they wanted to keep me till today but allowed me to go home. I spent 1 night in NICU and the rest in the step down unit. I had an arterial line in my foot (were unable to get it in my arm) 2 ivs in my r arm. I had a 5 and half hour surgery for one vein on the nerve. (sorry if I backtrack or ramble drug haze) I will not lie to you the first night is the worst and horrible! I cant prepare you enough for that, not to scare you but I wasnt prepared for that amount of pain! My surgeon said you must remember through this recovery you have had MAJOR BRAIN SURGERY so it is not a cake walk. The first time up walking with PT i was drunk but I am better sore but slowly getting better. I will be happy to answer any questions you have just ask. the positive no shocks and I have been eating popsicles and I havent been able to do that in a year.yea! which is good because I cant open my mouth very far right jaw I guess from sore muscle on that side. good luck just repeat God is good and all things are possible thru Him!
Hi Aimee,
I have tried to document as I go through my recovery - my surgery was 11/28/12. The discussion is MVD Experience for Others followed by the time period since the surgery and by the time I sign off tonight I will have three of them out there.
From all the posts and my own experience I can tell you there appears to be quite a few differences in how different surgeons proceed, including the incision and scar. You may want to ask your surgeon if he/she has a past patient that has had the procedure to talk so you know how your surgeon does things.
In addition, pain is a very personal thing - one persons experience may be very different than another. While I had pain and especially where the halo was attached, it wasn't as severe as some. I ended up in ICU for two nights because of nausea - some have more issues with that than others. Also, the procedure itself may be different - in my case it turned out the blood vessels were veins so I don't have any teflon pads. I hadn't realized that was an option (with the veins they can cut and cauterize up to four.) That's partly why I think most of us have found it frustrating because our surgeons couldn't give us enough information pre-surgery on what to expect.
Good luck on your procedure and quickhealing!
Debbie
Do not expect instant pain relief is the best advice my neurosurgeon gave me. Remember the nerve did not get damaged over night, it will not heal over night. When one wakes up pain free right after MVD surgery they are often just numb due to the nerve being moved during surgery. Also remember things may happen that the neurosurgeon will not be aware of until he is on top of it. This was a huge case in my MVD surgery and a 3 hour surgery took 7 1/2 hours in my case. I am not saying this with the intent of trying to scare you, but based on my experince just not wanting you caught unawares. Had a CSF leak come out my nose that cost me 16 days in the hospital, 6 in ICU with a lumbar drain in my back. Thankfully I had a really intense discussion with the surgeon before hand about possible complications and I was not totally freaked out.
Do not be surprised if you are really tired for a while. While it is a controlled situation, surgery still means their is afront to the skull and fatigue can be a problem. Loss of appetite as well. Do not be in a hurry to return to work. Take the full 6 weeks that most neurosurgeons say it will take to fully recover.
I would ask if you are found to have veins compressing the nerve how the surgeon will handle them. My neurosurgeon said he would cushion them off the nerve vice removing them as veins can grow back.
Jaw misalignment due to intubation is more common than one realizes. :(
kg said:
I brought my favorite Gatorade with me as I don't care for hospital juices. I had my surg. at OHSU and had my surgery time pushed back from 7am to 7pm, was a long and horrible painful wait. Bring meds with you in case it happens to you. The waiting room is very cold also. I also brought my own pajamas, because after the first day I wanted them. I woke in recovery (in the middle of the night, since surgery was so late) and felt where the screw was on my forehead and by the ear and in my sleepy state promptly scratched off the scabs. Oh, well, healed fine. The most pain I had was from the halo (too tight?). It was the most massive headache I can describe and it lasted for about a week, easing some each day, still I need heavy duty pain meds. (stock up on a bottle of stool softeners, last thing you want to do is strain after surgery at home). The incision didn't bother me at all, no pain ever, healed fine and long hair covered it, unless I wear a pony tail these days. One of the aides saw me trying to clean blood off the incision in the bathroom, and she brought a ton of washcloths and filled the sink with warm water and gave me no-rinse shampoo to help get the blood out of my hair. The night nurse smeared some ointment on the incision and rest of the dry blood even though I told her I was allergic to Neosporin..ended up with a horrible itchy rash the next am as I was discharged. I think it was the first or second night home I ran a fever of 102.9, massive throbbing headache, sobbing. Should have gone to ER, probably had a spinal leak. But I survived. I had lost my job about 5 mo.s before surgery, so there wasn't quite the rush to get back except that I was running out of credit to pay COBRA insurance. Although I was up and about after the first week, I didn't feel great, but was able to make -do. Tired easily for a long time. All in all the surgery really wasn't bad. Staff was great, except dietary ( ah, what's a lacto-vegetarian diet?). Wish I had stayed the extra day my insurance permited, probably would have spiked my fever then. ps, I'm in the oregon group too. kg Oh, I developed a bad case of TMJ after, that took 6 mo's or so to get better. I think the intubation pulled my jaw out of alignment. The docs saw it after surgery and ordered PT at home, which didn't help much.
Hi Aimee. Here are 2 links to previous threads about pre-op and post-op advice.
http://www.livingwithtn.org/m/group/discussion?id=2413731%3ATopic%3A225141
The best advise I got from everyone was to take a neck pillow to the hospital and to use ice packs. The neck pillow was more comfortable than having a bunch of pillows. The ice packs they gave me at the hospital wouldn't last very long. In fact, the nurses had to find extra packs from other floors. If I had thought about it more, I would've taken 2 or 3 of those blue jelly ice packs that you can freeze with me and had them keep 2 in the freezer while I used the other one. They last much longer than those instant cold packs they were using. (We tried actual ice in a bag but it would leak constantly.)
Besides that, rest as much as possible after surgery. Your body will need time to heal and get over the trauma of surgery.
Take care!
-i
The pillow is great advice! I couldnt find one of the travel pillows, but I am constatly trying to move my pillows. Getting in a comfy spot is hard to find and then it may hurt your head after a few min. Try to stay positive, my first night was the worst, after all the position you are in for so long durrring surgery makes you very sore. I have enjoyed frozen slushy juice put a cup o juice in the freezer for an hour and makes good for fiber! constipation is a problem
If you have highly specialized diet needs I would let them know ahead of time as hospitals are only set up to handle the basic diets.
kg said:
I brought my favorite Gatorade with me as I don't care for hospital juices. I had my surg. at OHSU and had my surgery time pushed back from 7am to 7pm, was a long and horrible painful wait. Bring meds with you in case it happens to you. The waiting room is very cold also. I also brought my own pajamas, because after the first day I wanted them. I woke in recovery (in the middle of the night, since surgery was so late) and felt where the screw was on my forehead and by the ear and in my sleepy state promptly scratched off the scabs. Oh, well, healed fine. The most pain I had was from the halo (too tight?). It was the most massive headache I can describe and it lasted for about a week, easing some each day, still I need heavy duty pain meds. (stock up on a bottle of stool softeners, last thing you want to do is strain after surgery at home). The incision didn't bother me at all, no pain ever, healed fine and long hair covered it, unless I wear a pony tail these days. One of the aides saw me trying to clean blood off the incision in the bathroom, and she brought a ton of washcloths and filled the sink with warm water and gave me no-rinse shampoo to help get the blood out of my hair. The night nurse smeared some ointment on the incision and rest of the dry blood even though I told her I was allergic to Neosporin..ended up with a horrible itchy rash the next am as I was discharged. I think it was the first or second night home I ran a fever of 102.9, massive throbbing headache, sobbing. Should have gone to ER, probably had a spinal leak. But I survived. I had lost my job about 5 mo.s before surgery, so there wasn't quite the rush to get back except that I was running out of credit to pay COBRA insurance. Although I was up and about after the first week, I didn't feel great, but was able to make -do. Tired easily for a long time. All in all the surgery really wasn't bad. Staff was great, except dietary ( ah, what's a lacto-vegetarian diet?). Wish I had stayed the extra day my insurance permited, probably would have spiked my fever then. ps, I'm in the oregon group too. kg Oh, I developed a bad case of TMJ after, that took 6 mo's or so to get better. I think the intubation pulled my jaw out of alignment. The docs saw it after surgery and ordered PT at home, which didn't help much.
I learned the hard way it is best to chase your pain pills with a laxative to avoid constipation.
lgunter said:
The pillow is great advice! I couldnt find one of the travel pillows, but I am constatly trying to move my pillows. Getting in a comfy spot is hard to find and then it may hurt your head after a few min. Try to stay positive, my first night was the worst, after all the position you are in for so long durrring surgery makes you very sore. I have enjoyed frozen slushy juice put a cup o juice in the freezer for an hour and makes good for fiber! constipation is a problem
This is going to sound strange, but if you wear fake nails or nail polish remove it from the middle finger on one hand . The anesthesiologist will need to be able to press on your finger nails and then see the change of color in the nail to check for blood flow. I never knew this until I had my consult with the anesthesiologist.
Thank you so much everyone for the fabulous advice! It is really helpful!
I had my MVD done 3 months ago at Johns Hopkins and all went very smoothly for me. I am 68 and had type 1 TN. I feel I was very fortunate because I had very little postop pain, slept very well on the hospital pillows, had very good range of head motion, and did deep breathing as soon as I was conscious. I was so prepared mentally for the procedure, others couldn't understand why I wasn't frightened. I had full confidence in the neurosurgeon (Dr.Ben Carson) and the entire team at Hopkins. I knew I was in the right place and was eagerly looking forward to getting this done and getting on with my life. I confidently & calmly put my life in God's hands. As for a few practical suggestions:
I had bedroom slippers with a good nonskid sole and an elastic band that secured them on my foot so I felt very stable as I walked the halls.
I took laxatives and stool softeners (I had a bottle of prune juice in my hotel room, too).
My partner brought me Mountain Dew to drink on day 1 because I was so used to drinking caffeine I had a caffeine withdrawl headache.
My lips were very dry so I used a good moisturizer on them.
I had a handicapped hotel room & the grab rails in the bathroom were helpful, especially when I showered. I put a plastic chair in the shower, sat on it, and my longtime nurse friend helped me shampoo my hair. I held a rolled up towel tightly over my incision.
When I went outside the hotel for walks, I draped a soft scarf over my head since my incision was exposed. I covered my head when I was in the airport, too.
Request a wheelchair, if you are flying. I felt like walking, but wasn't sure how far the gate was.
Use acetone to remove the gooey gel stuck in your hair.
Although I felt great after one week, I still forced myself to take a midday nap--my body liked the rest time. I continued 1/2 hour naps for about 3 weeks.
I live in the Florida Keys and had the surgery in Baltimore. I am a retired open heart surgery nurse so most of the preparation was no surprise for me. I was able to have both my significant other and my longtime nurse friend there with me. My significant other supported me with caring love, and my nurse friend was in an adjoining hotel room and was there to help with any medical issue that may have come up. She laughs because she never had to do anything but shampoo my hair. But she was there if I needed her. As it turned out, we 3 were able to explore Baltimore a little bit and when we walked down the street for lunch, I had someone to walk on each side of me--I felt very secure & never had a stability issue. My entire experience went flawlessly and I don't regret for a minute having had the surgery.
I wish you the very best, Aimee!
Dixie
I had physical therapy just out of NICU, he told me about 50*/. of people have problems with balance after surgery, due to the close proximity of the nerves. I too was not nervous about the procedure due to the fact I was ready for relief. chapstik, comfy clothes, you will be tired!
try to start getting meals in the freezer and buy up as what you need from grocery stand point. Right now is flu season so you dont want to go to the store and be exposed.