I had my MVD on October 29th and finally just got home from the hospital on Saturday 11/16/13.
Oct 29th had surgery and surgeon said he had found my main artery beating on my nerve so it was easily fixed and the surgery lasted only 3 hours. I woke up in ICU and threw up once but slept threw the night. But I remember the slightest noises seemed very loud to me so everyone whispered. I did have eye pain and fluid like a swimmer's ear but my dr said it would go away. So I went home on Nov 1st. I was only home 2 days and then had to be rushed back to the hospital because I started throwing up, couldn't keep anything down and was leaking from my incision.
The dr met me at the ER and determined that from when I started throwing up I accidentally tore a stitch/staple and that is what made me have a CSF leak. He then put me back on the lumbar drain from Monday Nov 4 to Nov 10th. The lumbar was pulled out on the 10th to see if the incision had sealed itself off and it did not. The whole entire time while on that lumbar drain was horrific headaches and constant vomiting. The dr was nice enough to keep me on a PCA pump the entire time while I was in the hospital to help with the headaches. On Nov 10th, I had to have emergency surgery to fix the incision so the surgeon pulled some fat of my belly button to fix the incision site and to make sure I was not going to have anymore leaks. So I was also put back on the lumbar drain, but the second surgery seemed to go much better. I only threw up once while on the 3rd lumbar drain. But now I have extreme anxiety because I spent 17 days total in the hospital and am afraid it will happen again. I still have nausea and seem to cry at the drop of a hat. I am trying to stay positive but it has been very hard. The great news is that my TN pain is GONE!
Wow, that was quite an ordeal! I completely understand your anxiety! The best thing you can do is get lots of rest, and treat yourself well. Let others help you with everything, and worry about anything but taking care of yourself.
So glad to hear that the TN pain is gone , but I am curious if you are taking any pain medicine still? I found oxycodone makes me nauseated.
I hope you are well on the path to wellness .
Best
Christine
oh Jennifer, I’m so sorry to hear of your experience…your anxiety is understandable!!
I agree with Christine, just take care of you and allow others to care for you…be gentle with yourself, one day at a time…I’m so glad you’re TN pain is gone!! so awesome! I hope the rest of your recuperation is uneventful!
lots of ((( hugs ))) and positive thoughts, Mimi xx
I am so sorry to hear that you went through all of that. My mvd is 11/29 but I had a very traumatic medical experience in May of this year related to TN. They overmedicated me and I quite breathing. These kinds of experiences wear you down physically but also mentally and emotionally. It makes a lot of sense that you would cry easily. I hope that you will be kind to yourself. Distract yourself any way you can so that you don't obsess about what might happen. I will pray you have a smooth recovery from now on. Congrats on your pain being gone!
I had three weeks of vomitting every twenty minutes after my MVD. We believe that is what caused my CSF leak as well.
Ive been back for a duraplasty and lumbar drain for 5 days. I feel for you, it was not a pleasant experience.
I hope you are able to relax. Keep taking it easy.
I'm glad your TN pain is finally gone. But wow! that was some ordeal. You have courage. Hang in there & let others take care of you for a while. Speedy recovery!
Oh Jennifer, so sorry for your ordeal.
In the first hours after my MVD I thought a simple pump whooshing sounded like a jackhammer but I did not have have any vomiting or other complications.
Try to rest in the present. You are past the worst now. If your anxiety continues ask for something like Xanax to help keep it from getting away on you. There is no reason for you to suffer further trauma. Perhaps a recovery therapist as well. Ask for all the help you need. Physical as well as emotional.
Keep Heart
Bellalarke
Today was a much better day and my husband has been extremely helpful to me so he has been really bending over backwards for me especially emotionally. However, my dr has been so awesome he called in better nausea medicine, and Xanax to help with the anxiety but today has been much better. But I will have to say that I have not really had extremely bad headaches since being home. However, when I do over do it I seem to get dizzy but I would rather deal with that than crying all day. I have also been trying to stay very optimistic and it seems to help. I do get my staples out on Monday so I am looking forward to that, as well.
3 lumbar drains? I only had one for a leak coming out my nose. The surgeon told me if it did not work the first time, it was not going to work a 2nd. I also had a running nylon 19 stitch set of stitches, which is much better than staples for preventing a incision CSF leak.
I am so sorry you had to go through this. I know from experience it is no fun. The lumbar drain really takes it out of you. Give your self extra time to heal.
Yep 3 drains, no fun at all! I was so happy everytime the drain had to be removed because the drains would cause massive headaches and vomiting. I have been resting up this week and really taking it easy and have noticed that it does make a difference in the way I feel.
So glad you are being able to rest Jennifer & hopefully the worst of the ordeal is behind you! As hard as resting/taking it easy is, it seems to be the absolute best way to heal well and fairly quickly.
I am sorry you had such problems with the lumbar drain. I was on one with each of my surgeries and out side of the one time the tubing got kinked, when I rolled over on it in my sleep, I did not have any problems with headaches or throwing up.
Something else my neurosurgeon told me is the reason he uses stitches vice staples is you have less of a chance of a CSF leak that way. Mine came out my nose instead. ( long story as to why.)
I am so happy to hear everything is looking great! How are you feeling?