Maddy, feel free to post your feelings and thoughts here, that is exactly what this site is about. What some of us worry about is that people who are not suitable candidates dive into MVD through very understandable desperation, all of us would happily be rid of this monster. We want members to weigh up all possible side effects. And they can be considerable. My dear friend is facing her eighth surgery since MVD in May last year. As Gloria has said it is not an exaggeration to say she has been in life threatening situations during that period. Now if she does not have this surgery she will lose her sight. It never stops for her, and she is only 22. I have to admit that her circumstances are rare but the fact she has endured all this shows it can happen. No one wants to discourage the free flow of discussion, far from it. But there are some here who would not want members to dive in without considering the possible consequences. That said, when a member has successful surgery and regains their quality of life back, we are delighted and happy for them, I sincerely wish that had been the outcome for you.
Maddy said:
Sorry, some of us are newbies here, I guess I better be more careful about posting.
I thought this was where you could come and talk out your feelings, I guess I was wrong.
Maddy, my comment was in direct response to the original title and comment of this thread. Everyone's symptoms are so different, and for the author to even remotely suggest that everyone should get MVDs, well that could be potentially harmful to an uninformed patient. That's why it bothered me to see it bumped again. I hope we can all just let it go now.
I think it’s wonderful you resurected this discussion!!! It’s a critical topic that needs to be brought up from time to time, so the newbies can learn. Do not be more careful about your postings!!! LwTN is here for the members to post, comment on any topic and talk about their feelings. Jackie and I know you did the right thing and encourage you to continue!!! There are too many members here with their heads in the sand about MVD. They believe everything their doctor tells them and don’t stop to consider “what did my doctor fail to tell me”. I even remember Jackie or myself greeting a new member who was scheduled for an MVD and one of us encouraged her to do research on the surgery and potential complications and her reply was “that’s what doctors are for”. How irresponsible can some people be about their health, safety and and possibly their life. It’s unimaginable!!! Please keep up the good work about your experiences AND feelings!!!
Maddy said:
Sorry, some of us are newbies here, I guess I better be more careful about posting.
I thought this was where you could come and talk out your feelings, I guess I was wrong.
Apologies in advance for any upset to anyone. The original post were my thoughts too, until I learnt about the complications of an MVD. This is an excellent post as it provokes a discussion which is so valuable to anyone who is considering surgery.
Apologies in advance for any upset to anyone. The original post were my thoughts too, until I learnt about the complications of an MVD. This is an excellent post as it provokes a discussion which is so valuable to anyone who is considering surgery.
Holly, that is a good question, and I just wanted to share my opinion. I am actually in recovery from a MVD, I had it done 6 weeks ago. Some of the reasons that MVD may not be appropriate is the age of the person or if the person is not healthy overall. MVD is very invasive, and anesthesia can be extremly dangerous if one is compromised. Typically surgeon’s do not like to immediately do the surgery, because medications can help many people (the problem I’ve seen is not usually forever) and finally I have heard there are some types of TN that MVD’s just do not fix. In fact there is a chance that surgery might not work for anyone.
I wish, as I’m sure you do that everyone would be healed from this terrible disease!
Holly: I am blind in my left eye. TN is on the right side. This is a form of brain surgery. Unless the doctors can give me an iron clad promise that it will not effect my right eye, no way they are touching me. Even my GP has asked the question, my response was, remember I am blind in my left eye. His response was darn that's right. guess we have to keep after it with meds until something better comes along. No MVD for me.