Hi All, I just joined and will be making an appointment for MVD but I am scared to death. I have researched it for 3 years but have never gave a though about post op. I have read a lot of bad situations for post op and don't know what to think. I need to talk to my doctor about post op and what he is going to use to close the skull. I know there is the metal plate and screws. Is there another way to close the skull? I saw a video a couple of years ago and remember very little about it but I think I saw them put the quarter size piece put back but I don't remember anything else. Can anyone tell me what they had and any side effects from it?
Hey Jenny-- You might want to check this doc out..https://www.linkedin.com/pub/john-y-k-lee/22/752/376 He performs fully endoscopic MVD. They are much less invasive...tiny incision..and less traumatic post op. If I ever need surgery--I would consider this! This guy is in Philadelphia at Penn. Not sure where you are in Pa. Good luck!
OMG! That is who I am seeing. I am just outside Philadelphia and was lucky to find someone here who studied in Pittsburgh hospital. I was actually going to go to Pittsburgh until I found Dr. Lee. I was so excited that at my initial consultation I didn't even ask about what post op would be like and what to expect. After reading posts here I have a lot of questions for him now. I watched his video on YouTube and saw he used the metal plate and screws. I read posts talking about the pain they had after and for years after with this. It makes me feel that it is not a good idea to go through this. I am very scared.
What is your pain like and how long have you had it? Thanks for your reply.
Jenny2 said:
OMG! That is who I am seeing. I am just outside Philadelphia and was lucky to find someone here who studied in Pittsburgh hospital. I was actually going to go to Pittsburgh until I found Dr. Lee. I was so excited that at my initial consultation I didn't even ask about what post op would be like and what to expect. After reading posts here I have a lot of questions for him now. I watched his video on YouTube and saw he used the metal plate and screws. I read posts talking about the pain they had after and for years after with this. It makes me feel that it is not a good idea to go through this. I am very scared.
What is your pain like and how long have you had it? Thanks for your reply.
Hi Jenny
I have had MVD on both my right and left sides. My surgeon did not use any metal plates or screws at all.
Hi Jenny,
I had an MVD in October. No metal or screws. They used some kind of compound to seal the hole, then stitched the under layers of skin and glued the incision. The stitches dissolve and the glue eventually goes away. Unless you pick it off, which is not a good idea, but so tempting! My incision healed up nicely.
Don't be scared. It's not that bad. Good luck!!
Lynette
Hi Lynette,
Thanks for your reply. I will ask my doctor about it because I really don't want anything metal in my head. Thanks for the encouragement and being up-beat, it is comforting.
How was your recovery? Was it long and painful as some describe or as expected? I heard there is a lot of pain right after surgery but eventually went away. How long before you felt normal again? Any info will help me and be sooo appreciated.
Juliet said:
Hi Jenny,
I had an MVD in October. No metal or screws. They used some kind of compound to seal the hole, then stitched the under layers of skin and glued the incision. The stitches dissolve and the glue eventually goes away. Unless you pick it off, which is not a good idea, but so tempting! My incision healed up nicely.
Don't be scared. It's not that bad. Good luck!!
Lynette
I'm so hungry right now. I lost so much weight and very sad right now.
Juliet said:
Hi Jenny,
I had an MVD in October. No metal or screws. They used some kind of compound to seal the hole, then stitched the under layers of skin and glued the incision. The stitches dissolve and the glue eventually goes away. Unless you pick it off, which is not a good idea, but so tempting! My incision healed up nicely.
Don't be scared. It's not that bad. Good luck!!
Lynette
Wow! You are seeing one of the best..that is so great!! I am just a new sufferer in that I was diagnosed last June. I had nasty tooth pain in one molar for about six months off and on. The dentist said it wasn't my tooth--then one night I had a full-blown three branch horrible attack... I went to the doctor and he put me on tegretol and after a few weeks the pain was less and eventually gone so he weened me off the meds and so far I am painfree. The attack was awful..couldn't sleep, eat, ride in car, any vibration or pressure set it off. I was a wreck. I found the only way I could cope was to get as much info as possible. I still check in hear from time to time to get any new info--for when it comes back... ;-( The MVD is the best way to go!! You will do great!
Jenny2 said:
OMG! That is who I am seeing. I am just outside Philadelphia and was lucky to find someone here who studied in Pittsburgh hospital. I was actually going to go to Pittsburgh until I found Dr. Lee. I was so excited that at my initial consultation I didn't even ask about what post op would be like and what to expect. After reading posts here I have a lot of questions for him now. I watched his video on YouTube and saw he used the metal plate and screws. I read posts talking about the pain they had after and for years after with this. It makes me feel that it is not a good idea to go through this. I am very scared.
What is your pain like and how long have you had it? Thanks for your reply.
Hi
I the surgery is different for everyone. Most have had minor post op side effects. As for me I went through hell. Also, becuase I rushed back to work I suffered. Take it slow and remember, most have success!
Jenny,
I know this is hard... the pain, the uncertainty, discomfort, and all kids of emotion. Do try to relax -- it's all temporary. Things WILL change, and very likely for the best. Read all you can on this site to gather information. Everyone is different, so no two people have the same experience. How you handle and deal with surgery is also affected by your overall health and age. I am 47 and had no other health problems, so I think my recovery went well, compared to some who may have had other medical problems. I did not tolerate the pain meds well (they kept me from being able to sleep), so I just used tylenol and tylenol PM at night. And frankly, I only took them for about a week. I was almost normal in about two weeks, but it took a couple more weeks to get my strength back. I had to sleep propped up with several pillows for about 3-4 weeks because when I laid down, I would feel pressure in my head.
For me, it just really wasn't as painful as it was uncomfortable for a while... my neck was sore and I just felt tired and moved sluggishly. But only for a couple weeks. I am unemployed, so I was able to take it easy and allow my body to heal. I also drank mangosteen juice, which is highly anti-inflammatory. That might have helped some too.
They say it takes one month for your body to recover for every hour you are in surgery, so that means I should be back to "normal" in three months.... which would be Jan 15 for me. I was way ahead of that schedule. It was more like 6 weeks for me, I would say. I don't know what your faith is, but I have become so much closer to God through all this, and I know he is the one who brings me through it. I couldn't do it alone. All glory goes to him. May he bless you as well...
Read success stories tab here
People mostly like me, in remission, lucky with no post-op horrors
Don’t come here anymore.
My search lead me to the best surgeon for me, in another state, to get the best odds.
I still then was terrified, but i really only suffered one year from TN starting, to MVD table. The more you wait, the more damage is done.
Im glad you are heading that way. : )
thanks Edster, I really appreciate it. Hope you are feeling feeling now.
Edster said:
Hi
I the surgery is different for everyone. Most have had minor post op side effects. As for me I went through hell. Also, becuase I rushed back to work I suffered. Take it slow and remember, most have success!
Hi Juliet,
I too have great faith and hope my prayers will be heard. Your story is very encouraging. I had to stop working so I hope I will heal quickly without the pressure of feeling that I need to get back to work. I always thought of myself as a strong person but going into the unknown and possibly to the point of no return is weighing on me heavily. I stayed in bed the last few days trying to relax and ease the pain and to get some strength to go through with this. I'm hoping to eat more, gain some weight, feel rested and stronger in hopes that I will feel ready to go through with it and strong enough to get through post op. You have really helped, keep posting your recovery updates as it is very helpful and encouraging.
Juliet said:
Jenny,
I know this is hard... the pain, the uncertainty, discomfort, and all kids of emotion. Do try to relax -- it's all temporary. Things WILL change, and very likely for the best. Read all you can on this site to gather information. Everyone is different, so no two people have the same experience. How you handle and deal with surgery is also affected by your overall health and age. I am 47 and had no other health problems, so I think my recovery went well, compared to some who may have had other medical problems. I did not tolerate the pain meds well (they kept me from being able to sleep), so I just used tylenol and tylenol PM at night. And frankly, I only took them for about a week. I was almost normal in about two weeks, but it took a couple more weeks to get my strength back. I had to sleep propped up with several pillows for about 3-4 weeks because when I laid down, I would feel pressure in my head.
For me, it just really wasn't as painful as it was uncomfortable for a while... my neck was sore and I just felt tired and moved sluggishly. But only for a couple weeks. I am unemployed, so I was able to take it easy and allow my body to heal. I also drank mangosteen juice, which is highly anti-inflammatory. That might have helped some too.
They say it takes one month for your body to recover for every hour you are in surgery, so that means I should be back to "normal" in three months.... which would be Jan 15 for me. I was way ahead of that schedule. It was more like 6 weeks for me, I would say. I don't know what your faith is, but I have become so much closer to God through all this, and I know he is the one who brings me through it. I couldn't do it alone. All glory goes to him. May he bless you as well...
Thank you KC,
Please keep checking in as your story will bring hope to many of us still suffering and heading for MVD with a lot of doubts. I hope I do not have any significant damage. I went into remission for most of the year for each of the three years but it would come back for the holidays. This time I am really tired and feeling weak from not eating regularly and being in pain that I'm feeling so confused. I don't take meds because they make me feel sick and still in pain. More over I really don't like the idea of having a hole in my head but who does! I'm very happy for you and hope you will stay pain free.
Btw, did you get a metal plate or something else and do you have any pain at the site? Let me know. Thanks
Kc Dancer Kc said:
Read success stories tab here
People mostly like me, in remission, lucky with no post-op horrors
Don't come here anymore.
My search lead me to the best surgeon for me, in another state, to get the best odds.
I still then was terrified, but i really only suffered one year from TN starting, to MVD table. The more you wait, the more damage is done.
Im glad you are heading that way. : )
No pain anywhere! But really, please read success stories, in 2010-2011
I didnt hear many… Now that MVD is thee best chance for long term remission, or at least reduction of pain, and able to live life!
Email any time…
Kimberly