I’ve actually had 2 to fix TN, and another to fix a CSF leak. Dr said material (the normal stuff) used in 1st MVD calcified amd encased my nerve. So, he had to chisel the nerve out resulting in some damage, numbness on left side. My first question post op was, then what did you put back in there because my pain was gone! Said he just laid my nerve on scar tissue. Well a year and a half later the pain is back along with GN and hemi-facial spasms. He said he wouldn’t do another MVD on me and pretty much dismissed me. Pain is MUCH worse than before. Neuro Dr wants me to see a different surgeon (I have an app that next week). My question and FEAR is that, if my pain is back again and it’s more that likely due to more scar tissue, what will keep this scenario from happening all over again? Is a 4th opening of my skull worth the risk since my nerve already has some damage? HELP!
Thanks Jamie! Yes, I have lots of questions and have many wrote down. This sounds strange but I actually want the opinions of people on this website as much or more than the surgeon. I’ve learned that with this condition it’s better to trust those who have actual experience with what does and doesn’t work. I’m also taking a family member with me in case “the beast” rears it’s ugly head.
I don’t know what to say Tammy…I’ve only had the one, but your questions are valid, scar tissue can build up again ( if that’s the culprit or is it the nerve damage from the 2nd surgery???) in my honest opinion, unless they could guarantee what is causing the increase in pain, I’m not sure I would do it in your situation. I do know many surgeons advise against multiple MVDs for risk of further damage and increased TN pain. Write down as many questions as you can think of and see this new surgeon and see what he/she says…
Wish I knew…huge hugs though, and positive thoughts, let us know how it goes…
Hello TammyT, How long has it been since your last MVD? Not the procedure to repair the CSF leak. There will be some issues regarding scar tissue since there have been two previous invasions into the CPA. The cutting away of the arachnoid tissue after its restructuring itself will be more of a challenge than that of virgin territory , but in the hands of a skilled and EXPIERENCED surgeon these issues will be minimized. I would seek out the best in the business and not a surgeon that has not performed many MVD'S. Remember this problem we share is rare and there are drs out there that may only see a few cases during their careers. To give you a better idea of what is in store for you is better described in a book titled working in a small place. This is a brief overview of Peter J Jannetta. In one case the surgery of a middle aged man is described in detail and the problems that were addressed due to scar tissue and locating the right nerves etc. This man did fine but again go to the most expierenced surgeon and you too should do fine. Ken Casey, Ray Sekula, to name a couple I would trust, there are others . My best to you and hope to are able to find relief. Cheers Joe. PS I have had seven procedures over the past thirty one years
Thanks for your reply Mimi, hugs always appreciated. Squid, my last MVD was April 2012 with THE CSF occurring 12 days later. The surgeon my neurologist is sending me to does about 12 MVD’S a year. That seems like a small number to me. I’m in the Dallas area and this new surgeon my Neuro wants me to see is in Wichita Falls. …a big city but nothing like Dallas. The one that did my two prior was suppose to be one of the best in Texas. Would it be rude or inappropriate of me to ask if he had read this book? And do you think 12 MVD’S is way too few per year? Thanks!
This is just my opinion, but 12 MVDs in a year is not enough, especially for a somewhat complicated case such as yours. There are surgeons, like the one who did both my MVDs and my PNS implant, that have practices focused on TN. MY doctor,Jeffrey Brown, in NY, has done over one thousand MVDs, and I traveled from Georgia to have all my surgeries. I know it is not always feasible to go out of state for medical care, but if at all possible I would suggest you see a true expert in TN.
Best of luck
Hello Tammy T. I would NOT let anyone with this little exp do my surgery. You really need to see the best. There is just too much additional risk involved here. Loss of hearing on that side additional CSF leaks increased risk of infection and additional but unintentional damage to the nerve and the dreaded anesthesia delorosa. With no complications your Hosp stay will be the same so the only additional cost will be travel expenses not a big deal considering. There is a doctor in Gainesville FLA. At the McKnight brain institute located at the university of Fla his name is Friedman he replaced Dr Rhoton there, excellent surgeon. Also Jeffrey Brown as the other person suggested is also very qualified. I think if I were having to consider this I would go to UPMC and see Ray Secula. I hope I have not spooked you too much but you really really need to make an informed decision and you could always send your records for an additional opinion if travel is not an option
Thanks for your reply Mimi, hugs always appreciated. Squid, my last MVD was April 2012 with THE CSF occurring 12 days later. The surgeon my neurologist is sending me to does about 12 MVD'S a year. That seems like a small number to me. I'm in the Dallas area and this new surgeon my Neuro wants me to see is in Wichita Falls. ...a big city but nothing like Dallas. The one that did my two prior was suppose to be one of the best in Texas. Would it be rude or inappropriate of me to ask if he had read this book? And do you think 12 MVD'S is way too few per year? Thanks!
Tammy T. Forgot, I would not ask about the book.Neurosurgeons, I have found are for the most part really type a super egotistical individuals and he/she would not get it. Have you read it? Cheers Joe