Ohhh Victoria, what a shame but you are now hopefully on the road to recovery, must have been such a scare xxx
Bless ur heart! I can’t iimagine! So glad they have it fixed now. Praying for you!
Yes it was very scary but I was in good hands and hopefully no more leaks I’m doing nothing as advised thank you elstep ,and thank you for your prayes Tinah
Victoria, rest rest rest and let us know how it goes, were all thinking of you xx
Hi I’m back on line again just got out of hospital after my second CFL jaws in for 8 days, I woke up in the early hours and the fluid was coming out of my wound. So of to A&E and had to have the wound stitched for a third time and another lumber puncture and a spinal drip put in to drain the fluid . This was in for 5 days and this time it seems to have done the trick , I’m not aloud to do anything for two weeks and then light duties for two weeks and only going back to work part time till October , this has really put the healing process back and I’m at a higher risk of having another leak as iv had two already, im so exahasted and tied but know this won’t last for long and least I do not have the stabbing pain so it’s worth all iv been through , it was scary the first time I had a leak but the second it wasn’t as I knew what was happening I also had two infections so have antibiotics through IV and these made me very I’ll , on the mend know though 
Wow… I had the mod done on July 11
Back in with a leak the following Sunday, they also started with the lumbar drain, then I began having almost seizure like attacks of pain, it was air bubbles in the brain, most horrid pain ever! So they had to reopen my head, sealed off mastoid sinus, and also three leaks around titanium plate. Just got back home last Monday. Second ste of staples removed from head this Monday, now just kinda of laying low trying to heal. Every time my nose feel like its gonna drip I go into a panic attack thinking I am leaking again!
I know what u mean although I leaked out of my wound I still hate if I have a runny nose as u never know and I don’t think I would no if it was, I had very bad headaches on the drip and no about of painkiller stopped it I was on three very stron pain killers to I felt very poorly, I am also staying home doing nothing I’m just to worried as if I have another leak I will have to have an op to clean out and change the titanium mesh but I’m hoping it will not come to that it’s very scary having a leak but knowing others on here have had one makes it less scary as I know om not the only one rest up big hugs
Hope all goes well for you now Girls Youve been very brave hugs xxx
Oh Victoria and Yvette! I'm so sorry! Victoria, I do hope that this one will seal up! I have been praying for you and hoping you were healing nicely. I was talking about you to someone the other day and was wondering if you were close to the olympics and if you were enjoying them. Apparently, you were in the hospital! I will keep praying and hoping to hear good things very soon! yvette, praying for you as well. Please take it easy, one day soon it will be in your past and you will be pain-free!
On that note, I went and visited my general practitioner the other day because ever since my surgery, I have been battling TERRIBLE depression. I felt horrible because I felt i should be elated to be pain-free! Her dad suffers from TN bilaterally and she did her dissertation in College on TN so she was familiar with it. She knew as soon as she saw me last fall what I was dealing with. She was such a blessing to me. When I went in to see her this time, I was ashamed to tell her that I was depressed. She told me that it is actaully very common and it is a form of post-traumatic stress disorder. i never thought of it that way before! She adjusted my medications and gave me some pointers, but it was so helpful to understand that I wasn't being ungrateful, just struggling with fear and anxiety of the pain returning and from the trauma of having the disease. I wanted to post this so others might understand this as well. i don't think EVERYONE will go through that, but it does happen. If you have had the surgery and you are fighting depression, see your dr. There is no need to continue in that state. We have been through war and hopefully won, but we might still suffer from the trauma. Also, she told me that I will probably have it for up to a year post surgery. Oh joy. But its still better that tremendous pain AND depression!!
Hang in there everyone!
Thank you for your post. I have been on eggshells ever since I have come home from the hospital…so fearful that something will go wrong.
Oh you poor thing!!! Thoughts and prayers are with you — what a scary experience. I'm so sorry!!! Can't wait for your message when you are all healed and back to your normal (but pain free!!) routine. Hugs, Jess
I have read this entire discussion like if it was my textbook and I was going to get quizzed on it. LOL I had a few fears, but now they are gone. I see my neurosurgeon on Sept 20. I am hoping I get a quick "yes" to the MVD and they schedule it asap. Thank you so much for sharing all of this. I feel like I know you guys. lol
Welcome to the boards ihold!!! Will be praying for you to have quick answers and soon quick relief. Let us know if you have any questions...with all of our experiences put together, I'm sure we can come up with something!! lol!
VICTORIA! Give us an update! How are you doing now??
Hi everyone so glade this board has been helpfully ihold, we have been through the MVD and come out the other side , it’s very daounting and when I was on the way to hospital I thought I couldn’t go throu with it but did and I’m still here to tell the tail , I’m doing well Tinah , after my second CF leak, I came home and have been recovering well, as with you I have felt a little down but think I will be better when I go back to school next week, I have been to to go back part time for 6 weeks which is good as it eases me into work and gives my body time to adjust , I feel better because I have not got the TN pain although I have been getting niggles of pain, but am still very tied and when I do anything I’m knackere , I’m assuming this will get better with time, also my scare is still very sore and it is numb in places on my head, , how are Tinah hope all is well with u x
Such good news Victoria, glad your going to get back into teaching gradually, your body has been through more then most this summer holiday! xx
Victoria (and anyone who has had a CSF leak post op):
What do they do when you get a CSF leak? I had issues with a small leak once after one of my many spinal taps. They just had me stay lying down for 2 weeks until it healed itself. If it had not fixed itself on it's own, then they'd have to intervene, but fortunately that didn't happen, so I don't know what they would have done. Plus I am also assuming a tap leak would be treated differently than a post op cerebral leak, but I don't want to assume anything. The point is (after that rambling): what did they do for you Victoria and are there more than one choice on how to fix it? I seem to notice that the most common "bad things" that people mention that have happened to them are CSF leak and/or infection. I know what they do for infection.
I don't like to sound pessimistic but I kinda want to know what the next step is if something goes wrong in anything I get done. I just try to reduce my chances of getting blindsided by things. lol I had to have heart surgery a few years ago and I was totally calm, cool and collected because I had time to research it. I had to have an emergency appendectomy a few months ago and I was freaking out! I was told I needed surgery and was in the OR within 30 mins so I didn't have time for anything. That is such a small surgery compared to heart surgery but I was freaking out because I couldn't sit in front of my computer and research it. LOL When it comes to MVD I've decided that the benefits completely outweigh the risks. I'm going to do it. But I still want to know about things like CSF leak, infection, numbness, etc. I love that this is the "positive" forum. You guys all sound like amazing, strong people.
Oh, a little about me:
30 yrs old. Have had chronic migraines since June 2002. (I could tell you the day and time it started!) I have tried just about every med out there! In Nov 2007 I got the worst pain I have ever felt in my life. I was misdiagnosed with cluster headaches. I have finally been told it's TN. I've tried a bunch of meds (Elavil, Neurontin, etc.). I am currently on Tegretol 400mg 2x a day (and it's driving me nuts). I've had sphenopalatine blocks and nerve blocks and all that fun stuff and it's just not helping and I'm just DONE with this. I think my TN has turned into ATN (or TN2). SO...time for more drastic measures. That's how I got here.
Thanks again for all this amazing input! Like I said, it has really helped me realize that MVD is the way to go for me.
-I
Hi guys! Sorry for the delay. I had my MVD on August 9th. It was the best thing I ever did. I felt better immediately. My migraines did not haunt me as I thought they would. My biggest problem was that my ears bled! When I got to the ICU, my right ear was actively bleeding (not a lot) and they had no idea why. So they called someone from ENT and she was just awful!!! I think she made it worse. She poked around in my ear with this aluminum vacuum thing and it sucked my eardrum. I thought I was going to hit the ceiling! And she knew she screwed up too. Then she tried to flush out my ear, and used those pre-filled syringes. As a nurse, I know that the plunger is kinda stuck and you need to loosen it from the barrel to get it to squirt smoothly. Well I guess she didn't know that. She stuck that thing in my ear and when the plunger gave way, I got a bullet of saline right on my eardrum that she had just suctioned! Thankfully, she figured this out for the second, third and forth flushes. Then she used a special otoscope to look in my ear, it is special because it is HUGE. And it hurt like hell. When my mom came to visit that night she gave me a hair band to pull my hair up and I discovered that I had a ton of dried blood in my left ear also. Hmmm, I'm not sure what happened in that OR. I remember someone saying that they did audiograms throughout the surgery to make sure my hearing wasn't affected by what was going on. I am still having trouble hearing out of my right ear (the side of the surgery and the nightmare ENT woman) but it is getting better. I have an appointment with the ENT's this Friday as a follow up at the urging of Dr. Carson's PA. They still have no answer for the bleeding in my ears, and tell me that it has never happened before. Fabulous, I'm the one. But the PA is wonderful. I e-mailed her daily with questions and updates and she answered me by the evening. She made me feel like I was her only patient. She gave me helpful suggestions, answered my questions thoroughly, and asked for my updates. She also offered to call, but I know she is very busy so I kept to the e-mail. In the hospital she would stop by, but I had my surgery on a Thursday, so she was there for me before and after the surgery and on Friday. As was Dr. Carson, who even came by to see me on Saturday. I was told by my nurse that attendings do NOT come in on the weekends. And I know that he is a 7th Day Adventist, so that was his holy day. So between those two factors, I felt well taken care of.
I am off all of my meds; I can brush my teeth with cold water again (woo hoo!) I can eat hot soup. I feel like a new woman, well except for my leg that is still broken. But that too will heal.
One thing that did surprise me was when Carol (the PA) told me that I could wash my hair if I had someone help me so that I wouldn't get my sutures wet was how much hair came out when I combed it. I didn't wash it, I only wet it. And the wall of Betadine made my hair impenatrable to water. The water just bounced off. So I called it quits on that part. But when I combed my hair out SO much hair came out. My friend that helped me wet my hair was watching me and told me that she was glad that I didn't have a mirror because it was just coming out in clumps. Turns out that it was just the hair that they shaved off but was still intertwined with my hair. But is was still unsettling. As was the first time I did get to shower and wash my hair. That betadine was rock solid and made my shampoo not lather. I had to use so much shampoo to get it to lather. Then I conditioned it and combed it out while still in the shower and so much more hair came out again. I guess it was the hair they shaved off and was stuck in the wall of betadine so it didn't get taken care of the first time.
Ok, I think I have gone on long enough. The bottom line is, I had the MVD. It worked like a charm. I felt amazing after. I mean right after. I ate dinner that night in the hospital. My nurse that night got me heat packs and an order for muscle relaxers because of my neck (oh yeah, I am so glad I had that warning... thanks to you all!!!). He was on top of everything. He even came in and watched the Olympics with me for a while. I didn't sleep that night. Not sure why. I did however sleep pretty much all day the day they discharged me. It was like I couldn't stay awake. It must have been a combination of the meds. But for me it was a breeze. I wasn't sick at all. I was prepared. I had my popsicles, Jell-O, pudding, etc. But didn't need it. I was on solid food right away and never even nauseated. Thanks to you guys, I knew what to expect and I think that made it a hell of a lot easier for me. You guys ROCK!!!
This thread has been so helpful!
I’ve read it through several times as I started researching mvds a few months back…
Just want to say thank you to ALL of you who contributed and shared your experiences and support of one another.
It continues to help those of us who are awaiting our MVDs.
Thank you, (( hugs)) Mimi
Bump!
I will second that Mimi, Victoria how are you now? Thank you everyone for sharing x