Hey all. Been reading the forums and applaud you all for the love and support you all have for each other. Those who understand what pain we struggle with truly understand how difficult it is to live with.
As I write this I could down the hours (38 hours to be exact) to my MVD and hopefully recovery. I’m 34 and married with two very young children and was diagnosed with TN just over a year ago. I struggled with the medication as it made it difficult to live my life.
I won’t lie. I’m scared to death of this surgery and the recovery thereafter. Looking for some last minute support.
I wish you the very best. I have read that many people have been helped with the MVD. But of course many of us went into brain surgery for the MVD surgery and did not have success, which is, as you can imagine, unbelievably disappointing. I am one of those people, so I do have some questions for you, because I want to compare experiences.
Who is the surgeon? Does he/she go over the consent process and explain risks and other treatments? or did the neurosurgeon have a different doctor go over the consent with you? Did the surgeon order a MRI and look for a vascular body on the trigeminal nerve? Did the surgeon say what other things he does when he is in your brain, like nerve combing, rhizotomy? Is he going to explore nearby cranial nerves for opposing vascular body and/or delamination? Did he tell you what he will do if he does not find an offending vein or artery? Will he put the Teflon on the nerve anyway? Will he do a rhizotomy? Did he ask you what you want? On the consent form, did you get a copy of what you signed? Does it say that he will perform microvascular decompression of the trigeminal nerve or does it say MVD or partial sensory rhizotomy? How long does he take to do surgery or rather how long is he willing to search for a problem vein or artery, or is he in a hurry and have 6 more surgeries scheduled? Will the surgeon replace the piece of skull removed or is he going to put some other material there? What is the surgeons follow up habits–will he visit you and your family after surgery or send an intern to do it? If you have complications after the surgery and after you have left hospital, will he do follow up care, or refer your new problems out? How much does he care about outcome, does his staff communicate with you months and years later because he wants to know long term outcome?
These are the questions I wish I had asked.