Those of you who have been through different procedures, what questions should we be asking as we go to meet with two of them this week? We need to decide both what procedure we should go with, as well as who should be doing it. My daughter is 11 years old and very anxious about all of this, not that I blame her at all. We meet with week with Dr. James Goodrich at Montefiore Medical Center in NYC and then Dr. Ben Carson at Hopkins. We know that just from her MRI Dr. Carson wants to talk to us about MVD. He apparently thinks she will be a good candidate. I just want as much input as I can find to make us I don’t over look something I should be asking about.
Oh.my.gosh…I wish I knew the answer to this question. A young sufferer of TN has recently reached out to me through the Internet…my heart breaks for her. I’m 42, and have been living with this pain FOREVER, I cant imagine a child experiencing this…
I’m not sure everything she, Chrissy … The young girl, has been through… But I know she had an MVD… I also know she is one of the worst cases I have ever heard of .
I have had an MVD, and depending the pain your daughter is in, it is a good option. I’ll be honest though, the recovery can be BRUTAL…mine was. I’m not sure I would put a kid through it if the pain can be managed some other way.
Trust Dr. Carson. Finding him is like finding a needle in a haystack. He is a pediatric neurosurgeon and specializes in TN. He is very knowledgeable about this. We traveled from Washington State to Baltimore. It was the longest trip ever, but it was worth every mile.
Trust Dr. Carson! He looked at my daughters MRA, MRI and all other test and he told me "he could fix my daughter." I cried like a baby to hear those words. She was 12 at the time. She is 16 now and I am so glad we found Dr. Carson and went on the jorney with him. He knows what he is doing and he made us feel so at ease in a tough time. Lily's mom also went to Dr. Carson and they treated them the same. Please let us know how it goes, we are all praying for you.
Thank you both, Lily & Kimberly, for your posts. So far everyone else (including top doc in NYC) has told us there is nothing we can do, keep her on Trileptal, and keep Radio and Glycerin Rhyzotomy in reserve for the future, when her pain becomes unmanageable. I think anyone who utters that sentence about your child should be immediately stabbed in the eye with a pen. (Sorry, rough day today)
Dr. Carson saw the exact same scans and said he believes she's a good candidate for MVD. She doesn't have a compression, but a vein traveling along the nerve that he believes, given her typical TN symptoms, is causing her problem. We have scheduled MVD for Dec 4th at Hopkins. I'm still struggling with the conflicting responses from other doctors though. It's just such a big thing to put her through. Although, I have to say, she is all for the surgery. She doesn't like the meds, and thinks the titanium piece they will put in her skull looks like a Borg implant.
Also, Dr. James Goodrich at Montefiore in Bronx, NY said that TN behaves differently in children than in adults and, while it is rare, kids can go into spontaneous PERMANENT remission. Anyone else heard this?? I've not heard any such thing and I feel like I read everything I can get my hands on!