I know there are alot of questions to ask a Neurosugeon before you decide they are going to be performing this important MVD procedure. I mean these questions might be so important in determining your outcome good or bad.
Okay for instance when you ask about experience. What are you looking for how many they have completed their entire life, or just this year, or? How many they complete in a week? What numbers are suppose to look for good or bad?
Also when you ask about the statistical outcome. What percentage do you look for? How many came out successful? and what does successful mean? How many they didn't permanently damage? or lost their hearing or had numbness in their face permanantly?
It is all so confusing to me???
Is there anyone that has already been through the MVD process that asked their neurosurgeon questions before they decided that Doctor was the one for them. What numbers were acceptable?
Or is there anyone out there that is like me trying to figure out what Doctor is going to do the MVD surgery how are you going to decide that Doctor is qualified?
I just need some help, if anyone has some suggstions that would be helpful.
Hi Monica, I was going crazy over this as well! I live in Georgia, and could not find a surgeon that was an expert in MVD locally. I finally decided that it was worth going out of town to see Dr. Jeffrey Brown in NY, as he is one of the top neurosurgeons for MVD, and an expert in TN. he has done about 500 of this procedure, and told me there is a pretty high success rate with about 90 percent pain resolution. i was very happy with my visit with him last week, and will be going forward with surgery in January.
I know it is not always possible to see doctors in different states because of medical insurance, but it is worth it too me.
I hope this helped you in some way.
Best of luck to you.
Christine
Thanks so much for your response Christine. I know it is just driving me nuts. You are right insurance is another thing since I only have until "Dec. 7th" for us on changing Soc. Sec. disability insurance. If I want to get this done next year. Do you have friends or family in NY or is someone going with you?
500 sounds like a good number of procedures done. I live in Phoenix AZ, NY sounds to far if anything LA would be closer for me as to having many qualified surgeons.
I wish you only the very BEST for your upcoming sugery I am sure you have many wishes and prayers coming your way. Please keep me posted.
I look forward to any replies to this as well. I have an appointment with a Neurosurgeon at Johns Hopkins on Nov. 29th. He seems to have studied under the best of the best, so I am confident in his abilities, but I don't want to go in unprepared. I agree, the numbers can be confusing.
Christine - good luck in January!! That is very exciting.
Hi Monica, fortunately, I am from NY and still have family there.i will stay with my sister, whose husband is a surgeon after the procedure. My husband will travel with me for the surgery, and Dr.Brown said he typically keeps patient in the hospital for 3 days, has them stay locally for the fourth day, and will allow them to fly on the fifth day.he sees patients from all over the country, so I am not the first who will have to travel post op.
If you are considering MVD, why not post and see if any members in LA have had the surgery?
This is such a helpful and caring group you are sure to get some good info!
Best of luck to you
Dr. Casey also has a nation-wide network of MVD patients - he learned under the inventor of MVD - I trusted him completely, even though the outcome could have been bad. I asked him 102 pre-op questions !!!!! And he has probably done hundreds and hundreds of these! The questions you have come up with are good ones -- but some people forget to ask for post-op
Thank you for your information Kc Dancer. I totally agree with post op questions too. Thanks again I will have to look up Dr. Casey and see if he might be the one for me too.
I looked up your information and yes great questions. But it seems I still have a hard time figuring out when the surgeon's nurse or assistant does have some info to give me I don't know what I am really looking for. What answers will make me feel comfortable to decide that this is the right Doctor for me. Do I keep looking and asking multiple Doctors that have been known to do MVD and just pick the best one's stats? Or are there standards we should look for?
I have TN2 and I am on the best mix of drugs I have ever been on. But now I am getting break throughs again. So do I really need to try MVD as my next step? You can see why I want to be sure I am asking the right questions, and I will be asking in terms of results for TN2 results.
Big Hugs back at you never can have enough of those these days Be well.... Monica
Aw Monica, thx for the hugs!
I understand, I really do…
You see I am also in the midst of seeing neuro surgeons and looking into MVD as an option.
I have bilateral TN. Right side classic TN 1, left side TN 2. ( more recently experiencing some TN 1 on left too, ya know just to keep things interesting) huge sigh…
Up until April my TN was managed with 800mg Tegretol.
I am now at my max level with 1600mg Tegretol and 50mg Baclofen, still no relief.
A year ago I wouldn’t even give MVD a 2nd look, but unfortunately the reality is I need to research and advocate for myself for quality of life.
So, I have seen one neurosurgeon, and am currently corresponding with another, he’s just waiting for my MRI to review.
To sort of answer your question…"what answers will make me feel comfortable…"
Only you know, but knowledge is power.
Here’s what I’ve been doing…researching MVD all over the Internet, I’m reading research studies and papers. I’m also reading personal stories here at LwTN, going into the archives of past posts.
My meeting with the 1st NS took about an hour, he was very genuinely interested, thorough in his explanations, answered all questions, and was in no rush, he was very approachable, honest and present.
Trust your instincts, although stats and outcomes are important, you have to be able to entrust your brain into their hands.
Once you meet with one, then definately get a second opinion, compare notes. You’ll know who is right OR if MVD is even the right procedure for you.
Most important I think is information gathering, so that you can make a rational decision when you are NOT in a lot of pain.
To be honest I’m still not 100% sure, I’ll see after my 2nd opinion…
Best of luck to you,
Mimi
You have everything right on the dot. It is just frustrating. I do believe you have a good NS as you described with your 1st NS. My current Neurologist could not be any better we have a really great relationship and he explains everything to me. But he really hasn't gone into explaining sugeries yet. I think his stance is that TN2 do not have much success rate with surgeries.
But to continue on this path of just upping my drugs (to include morphine) seems well really not the path I want to go on. That doesn't mean I might really not have a choice in the matter. I have been doing much much research on this. Before this support group I also joined the Face Pain Support Group and I purchased the book that was suggested on their site it is a great book.
I even suggested that my Therapist purchase it so that maybe she could understand what weTNs are going through. Next time I seen her it was there. I have a great Therapist. I think having a Therapist really helps the jouney that we are all on.
That’s wonderful Monica, having doctors, therapists, specialists that are supportive and caring make ALL the difference.
I’m lucky that way too.
My neuro didn’t think the NS would do an MVD on me due to the tn2 on one side, but he still referred me.
The 2nd NS I’m consulting is in a different province than I am, I’m in Alberta, he’s in Manitoba. But he specializes in TN and mvds, the first NS is highly respected and one of the best in Alberta, but doesn’t have as much experience with tn as compared to the first.
I would like to suggest that you message Red Lawhern, hes our resident research analyst and might very well be able to give you updated stats and standards in regards to “shopping” for a NS.
(( hugs ))
There are of course many ways to ask questions of a neurosurgeon. The following link is intended to help create focus and get useful answers. This is from our Face Pain Info tab articles, on forming a constructive doctor-patient relationship.
If there are further questions beyond those in the reference, please post here.
As a general rule, I would advise a member of my own family to seek a neurosurgeon who has been in practice at least five years post-residency, and who does at least five to ten procedures per month of the type proposed in your case. Likewise, this individual should be able to explain to you the medical basis for recommending that specific procedure over others. “Because that’s what I do” isn’t good enough.
I just had my MVD done Nov 5. It was done in Langhorne, PA. (I live in NJ.)
I was also very confused and nervous about the process. I ended up with Dr Mark McLaughlin as my neurosurgeon. The first thing that led me to him was his website, where he explained his interest in TN and there were patient testimonials. When I saw him the first time, I knew I wanted to go for the MVD, I just didn't know what NS I was going to go with.
First off, he made me feel VERY comfortable. He answered all my questions and was kind and took his time with me. I knew him being nice didn't necessarily mean he was a good surgeon, but it was a good first step.
He told me how long he had been doing this surgery and how often. (In the time I was in the hospital, 7 days, he did 3.) I wanted someone that did this surgery at least once a month.
He also made me feel comfortable in that he understood a lot of my concerns and wanted to be proactive about it. (I have increased levels of spinal fluid which cause an increase in intracranial pressure and I was concerned about a post-op CSF leak.)
He told me his success rate (80%-90%), what his surgical plan was and who would be working in his surgical team. He also explained what could go wrong and what his plan was if things went wrong.
He also gave me information about the hospital and how he liked their surgical suite because it was made for brain surgery and their great Neuro Intensive Care Unit. This was actually something that I was very glad he mentioned and that I had not put as much thought into. The hospital that the NS works from is very important. You want to make sure that they are equipped to do the surgery properly and that the aftercare is good. I cannot say enough good things about the hospital I was in. I had a nurse sitting outside the glass wall of my NICU room 24/7. It literally would take less than 30 seconds for someone to come into my room when I pressed the nurse's button. After 4 days in NICU I was in a regular room for 3 days and the nurses were also amazing. (This also reminds me, he thought I would be in hospital for only 4 days but I ended up staying for 7 days due to a small complication. It was a good experience in that he was not rushing to get me out of the hospital when I was not ready. The hospital itself was also not being pushy in getting me out before I was well enough. I was actually given a choice to stay one more night or go home and I chose to go home.)