just got back from my 2nd visit to Hopkins and the Fiesta MRI scan showed a clear artery on the nerve, so I started asking questions to understand all details.
Previously, a different neurosurgeon (the one who preformed the gamma knife and the glycerol rhizotomy on me) explained that a golf ball size of my skull would be removed, then he would do his magic, it would be replaced and covered with a metal plate until my skull healed.
Today, Dr Lim explained that is not correct, that a Titanium plate is permanantly "installed" to replace to part of the skull that was removed.
Not sure why I am freaking out about this, prob b/c I was not expecting this response, but is this the way it works?
Is it permanent like will it stay in place forever or in 10, 20 or however many years have to have it reattached?
I am exploring the option doing either the gamma knife or MVD , the impression I have is the plate is permanently installed but I will let others that have had the MVD confirm that, Can you tell me how long you got relief from the gamma knife? (if any)
I have titanium rods and screws in my back from a spine fusion and have not had any problems going through airport security, without a letter, I wonder why this would be different? mollycule said:
I too am investigating MVD and my NS said a titanium mesh is inserted and I would need a letter to get through airport security. Fun, eh?
Hi Albee I just had my 2nd MVD exactly 2 weeks ago today . First time they did not give me the titanium plate & I had a depression. Frankly only me & my hairdresser knew about it!
When the 2 nd surgeon came to see me right after surgery he said he hoped I was ok that he fixed my despession. Yes I have the titanium plate and NO depression! You don’t feel it & I really wouldn’t know I had it except he told me. Don’t be afraid & I am very happy to not have the depression! Yes I might set off the scanner at the airport but so does my husband’s knee replacement!! Please let me know if I can be of more help.
Also my surgeon also said that the depression can cause problems if the tissue gets attached & I trust him explicitly.
I don’t know about the duration but not worried, but a good question you should ask & let me know !!
My husband had a knee replacement & has a card for the TIA & the card is bogus. He gets scanned / frisked & not such a terrible thing.
If the pain is gone a little inconvenience not a problem for me at least!!
When I had the MVD surgery they put the bone back and I do not have a depression. The skull looks normal.
To John- I looked into gamma knife and MVD while deciding what to do. The gamma knife works by damaging the nerve and if it doesn’t work then sometimes the MVD surgery won’t work because your nerve is damaged. The MVD surgery does NOT damage the nerve. The MVD works best if you have Type I TN. Don’t let the thought of brain surgery scare you because it is not a bad recovery and so worth it to get rid of the pain. I had the surgery in May 2009 and have not had ant nerve pain since.
I agree with Connie. I looked into radio surgery after my 1 st MVD stopped working & the thought of the mask, high level radiation & it could take up to 6 months was not for me. The recovery from the MVD is not that bad & immediate results is a wonderful thing!
I had my nerve cut whilst thinking about an MVD....and I would implore you NOT to go down that route...I have suffered greatly ever since then...as the Surgeon destroyed my nerve and has left me with AD..Now this has a high failure risk which I was not aware of....The whole right side of my face is permanently numb and so very painful...I actually think this is worse than the ATN Id had for 6 years....at least with ATN I did get some relief with drugs....and was "" normal"...now I am not...and I have to live with this pain 24/7...and sadly am on more drugs than I was previously and MVD is now not an option according to my surgeon down here in Span....Either....stay have TN or ATN and use drugs to help...or have the MVD.....and get instant relief...I still have the nerve and artery and vein entwined and there is nothing I can do....Sadly for me the ATN pain is actually coming back a year after my surgery....So I am in a lose/lose situation....You have a chance of being pain free with MVD....so please...a little bit of titanium in your head can make you better....dont take the other options...never have anything done to you that damages the nerve...Trust me...you would live to regret it....good luck...I hope you make the right descison
I am responding because i am surprised that they are suggesting a metal plate. I had my mvd surgery 9months ago and what they did was simply replace the skull piece and cement it in place so it can heal. I havent heard of the metal plate before being used , but of course I am not a doctor.Maybe the metal plate is to protect the replaced skull piece as a coveriing?
I felt a little frustrated when I read about your concern over the "metal plate" and almost did not write this reply. Albee, I think that should be one of your least concerns! But it seems to be important to you and I respect that. I suggest you make a list of your questions and direct them to Dr.Lim or his physicians' assistant. They will best answer your questions as they pertain to your case. I had my MVD at Johns Hopkins by Dr.Carson nearly 2 months ago and the results have been excellent! I don't care if he used "Silly Putty", "Play Dough", "Kevlar" or Titanium go close the skull defect!! I really don't mean to offend you and I wish you the best in pursuing your treatment.
Albee, I have decided to have MVD,I have type 1 and 2 , first MVD will be done on type 2 side within the next 8 months.
That being said, I have done MUCH research to get to get to this decision. Many surgeons use the plate, and many use the bone they removed from your skull.
I’m not sure yet what my NS will do, but it is one of my questions when I get a date for surgery.
I would prefer not to have the plate, but if that’s what it takes and my NS can adequately explain why etc I will agree.
Ask your NS why he uses one over the other… Explain to him why you prefer not to have a plate.
(( hugs)) Mimi
When you get a MVD, it's up to the surgeons to figure out whether they will put a titanium plate or if they will put the piece of bone that they removed back in the hole. My NS told me ahead of time that he puts in a titanium plate. I believe this has to do with the way they make the hole in the cranium. My NS basically "sanded down" with a tool the area of the skull above the area that he wanted to access my brain. By doing this, there was nothing but bone powder left versus a piece of bone that could be put back over the hole. I am almost 4 weeks post MVD and I can't tell a difference. My skull feels normal. A plate should not be an issue unless you are allergic to titanium.
When it comes to the titanium and metal detectors: your surgeon should give you a card stating what exactly is in you. This will not help you going through security in an airport. You will have to go through a pat-down if the metal detector goes off. Now, not all metal detectors are created equal. Some are more sensitive than others. Some might pick up the metal in a hip replacement but not on the plate in our heads because there is more metal in a hip replacement versus a "skull cap". What the card is good for is for when you get a MRI. Titanium is non-ferrous and is allowed in the magnetic field, but a tech can't take your word for it. (At least they're not supposed to.) You will have to show proof that what you have is titanium in many imaging centers. The way to prove it is to show this card. There are probably more scenarios that the card is good for, but these are the only ones I've ever encountered as a MRI tech and patient.
I had the titanium mesh put in place of the bone, I have zero issues with it. I have a very slight depression behind my ear that no one but me would ever notice. I had my MVD on Oct 3rd with Dr. Brown in NY and he advised me that he would not use the bone because it creates a more likely cause of infection, that your body could actually reject your own bone.
I feel the same as Dixie , i really didnt care if they put automotive putty in my head as long as the pain was gone and I wasnt disfigured!!
Also I have no issue with airport security, I have had an MRI since the surgery. The mesh is the same kind of mesh they use when they put a screen in for a hernia operation and is the least likely to cause infection
So how do you like John Hopkins?. How long have you been consulting there to get to this point? I live in Seattle, but my daughter lives in Arlington, Va and I own a home there and spend time there during parts of the year particularly the holidays and the winter--more sun there than here--and I was impressed with what I read on the John Hopkins site. I talked to them about an appointment and am gathering the info they are looking for before scheduling an appointment. Any feedback you have would be appreciated. Anne
Artana, I had my MVD @ Johns Hopkins Oct. 18 and am returning for a follow up visit on Dec. 18. I was very impressed with everything about the hospital. The neurosurgeon and the entire Hopkins' team were superb. I would highly recommend them. I live in the Florida Keys and would fly anywhere to get the BEST management. Good luck to you!
THANK YOU all for the advice, comments and feedback. I am now confirmed for MVD at Johns Hopkins on Jan 15th 2013!!!!
Dr Lim will perform it. He has worked with the famous Dr Ben Carson (who is retiring and not taking any new patients for this) for quite a long time. Here is the Johns Hopkins video from their Center for Trigeminal Neuralgia:
PS after 2 less-than successful procedures (glyercrol ryhzotomy and gamma knife) I would not go anywhere but a specialty center - my short list was Hopkins and I think Michigan (KC Dancer has the recommendation for the Dr who helped define this MVD procedure)