Seeking guidance prior to MVD Surgery...

[Daisy_G]

Hello … I just found your forum today and I’m so happy that I did.

I was diagnosed with TN earlier this year. My story is common … two unnecessary root canals later, I went to my physician because the pain wasn’t any better and she ordered bone scans and MRIs while at the same time referring me to a facial pain specialist, Dr. Steven Graff-Radford in Los Angeles.

Dr. G-R is amazing and immediately knew what was wrong … my symptoms included electric-like zaps on my teeth and gums, jaw pain, eye spasms, and a killer trigger point area by my back teeth that reacts to touch, heat, and cold. He put me on an increasing dosage of Trileptal and aside from the normal side effects, things with the TN got better quickly.

I’m relatively young though and my husband and I were in the middle of trying to have our first kiddo when the diagnosis came down. Because the medication is so harmful to a developing fetus, I’ve tried to stop the medication in hopes of starting to try to conceive again. There was just no way that I could do it. I was only able to stay off it for about seven days and then I was miserable again. Dr. G-R really thinks I’m a good candidate for MVD surgery and that’s what brings me here.

I have a few questions and I am hoping that those of you who’ve been through MVD surgery might be so kind to answer …
(1) Has anyone who did it, done so without having the thin-slice MRI to confirm the vascular loop or compression?

(2) Has anyone met with and interviewed or had surgery with any of the following neurosurgeons (they were recommended to me by Dr. G-R) and if so, what are your thoughts? I need to select one soon and I’m so confused …
- Ajay Ananda (Cedars Sinai in Beverly Hills)
- Steven L. Giannotta (USC University Hospital in Los Angeles)
- John Alksne, MD (UCSD Medical Center in San Diego).

(3) Does anyone have suggestions for questions that I should ask the surgeons when I have my consultation with them?

(4) Does anyone know of any other surgeons in SoCal that I should be considering?

Thank y’all so much … I appreciate your time!

[ella138]

Hi Daisy
I'm thrillled you found us too. You willl find a variety of people here with all types of TN To answer some of your questions

1. I had my MVD in Toronto Canada in July/05. My trigger was also a front and back tooth that brought on terrible zaps from heat, cold, pressure. I have typical TN. It responded well to Tegretol. The description of my pain and the fact that I had a trigger all points to Typical or Classic TN. MVD's are always more succesful in people who have Classic TN. It sound like that's what you have, however ask the neurosurgeon or the fellow that diagnosed you originally if that is what you have (as apposed to Atypical TN which is harder to treat).
I had my MVD with no thin-cut MRI. The only MRI I had did not show a compression.

2. & 4. There is a list of neurosurgeons in California who deal with TN on the end the pain (http://www.tna-support.org/endthepain/index.htm) website. Here are their names. The ones with the astriks beside their names are on the TN Board.

Thomas A. Waltz, MD, La Jolla
Farzad Massoudi, MD, F.A.C.S., Laguna Hills
*Mark E. Linskey, MD, Orange
Farhad M. Limonadi, MD, Palm Springs
*John F. Alksne, MD, San Diego
L. David Rutberg, MD, San Diego
*Nicholas M. Barbaro, MD, San Francisco

I can't stress enough how the outcome of your surgery will be directly related to your choice of surgeon. Make VERY SURE you choose one that has a high PERSONAL SUCCESS RATE for doing MVD's. Also make sure he has done many (100's). Ask what his definition of success is?
Your general health before you go into surgery also has a bearing on your outcome so ask about any pre-existing condition you may have and its affect on the MVD.

I kept a diary of my recovery (http://brain.hastypastry.net/forums/showthread.php?t=2028) when I had my MVD. It is in the stickys. Keep in mind when reading it, that everyone is different and we all heal and react in different ways. This is just my story. According to my surgeon, it was an average one. Remember not everyone wakes up completely pain free after the surgery. Many do, but I did not. That is something you can ask about. Today I am still pain and medication free.

Read through the Newbie Sticky (http://brain.hastypastry.net/forums/showthread.php?t=2338) as well. It has lots of information. It will tell you how to purchase the book Striking Back. You really should get that book it has every question you have asked and things you will ask in it. It is the TN bible.

Good luck Daisy, if you have any questions at all, feel free to ask and you can send me a PM (private message) as well. Just click on the "Private Message" link at the top right of the site. There is also a Chat (http://brain.hastypastry.net/forums/chat/flashchat.php) that some of us go to so you can ask things in real time. A good time is usually after 7ish EST. If you want to talk, we can actually make a time to meet there as well.

[Fizzbw]

Hiya!

Very glad you found us - welcome! Though it's very sad that you have had to find us of course.

I think TN is becoming more common in younger people - Ive had it for 4 years, and am now only 35. I'd love to have kids - hopefully one day!!

I think an MVD is a great idea - I had a clear compression on the nerve root even on a very bad mri scan, but they often find ones which don't show up. I have now had 3 mvd's - the latest last week which in fact was a removal of the teflon placed in before to see if that would help. There are several people on this board like me who have NOT had successful MVD's but please remember we are a minority and there are many more out there who no longer happily need to post!! ;) .

I also recommend making sure that the surgeon has good stats, might be worth asking about whether he uses teflon to pad the nerve or if he uses the sling method - it makes more sense to me personally to make sure that nothing, even and "inert" substance like teflon is touching the nerve root.

I'm in the UK so can't help you with surgeons, but I would strongly encourage you to join and talk to the TN Association if you have not already.

Make sure you take a lot of time off after the op - none of this going back to work after 2 weeks stuff! And avoid shocks and stress like the plague as well.

And after all that - there are some great pain management courses out there that should the MVD not be successful will revolutoinise your life and allow you to be meds free for long enough to have and hold baby!

Big hugs, please ask any question however small or daft!

Niki *** (who had her staples out today and is sore as a result! Why is that nearly the worst bit of MVD surgery?????!!)

[Artist1]

Hi,

Don't know anything about SoCal Neurosurgeons but I did have an MVD in July that was successful.

As everyone has said, make sure you have a surgeon with lots of experience!!! That cannot be stressed enough!!!

I would also ask them to describe the procedure, how long it will take, how long of a hospital stay, how will they close the opening (mine used glue on the outside and you can't hardly see the incision after only 3 months, but some use staples and sutures). Also ask about complications and how they will handle them. Also, what they think will be your success rate.

I think they all operate a little differently, so knowing what you are in for is important.

Good luck to you and keep us posted!!!

Kellie

[MarkR]

Dear Daisy G,

I have never posted a reply on blog before so please bear with me. I also had TN as of last August 17 and I live in Los Angeles. My 3-d MRI was performed at UCLA and only showed a small artery compressing my TN nerve from the top. Before I continue, I also had TN in the 80's and had a MVD performed by Thomas Waltz as shown in ella138's response in 1980 in Scripps’s Research Clinic in La Jolla. Back to 2005. My UCLA team of doctors preferred solution for me was the Gamma Knife. In my opinion, unless you can not physically handle surgery due to age or disablilty the Gamma Knife is reserved for those surgeons who do not have the technical skill to perform MVD's any longer or only interested in making a lot of money by scheduling ten in a day. MVD is the only way to go. Fortunately, a friend of a friend suggested I call Dr. Wesley A. King with Cedar Sinai in Beverly Hills. Dr King's specialty is minimally invasive micro vascular neurosurgery and he was a teaching professor at UCLA. Call him and he will explain the surgery with drawings and answers to questions you did not know to ask. This was my second time around with MVD and I thought I knew everything. By the time of my surgery, I was up to 1,100 mg of Tegretol a day and increasing to keep the pain manageable. Dr. King operated on me on August 17, 2005 and I am pain free with no numbness or heaviness in the left hand side of my face. When Dr. King got in, he found a large artery pressing into my TN nerve from the bottom that did not show up on the MRI. The scars of the previous surgery 25 years ago complicated my surgery. I had surgery on Wednesday morning and was released from Cedar Sinai before lunch that Friday. I returned to work Monday morning with a patch on the back of my head. Whatever you do, please interview several surgeons and determine your course of action before you really have to make a decision. Ask each surgeon for their successful and not-so successful patient’s names and they will provide them. I also asked the surgeons if their mothers/fathers needed MVD surgery whom besides themselves they would want to do the surgery. They all had answers. Remember, you want a surgeon that is very good in operating in tight spaces and not a heart surgeon that is used to playing on an open field. I am back to enjoying my favorite sports of surfing, martial arts, and snowboarding. Good luck Daisy.

[Daisy_G]

Thank you so much for all of the information! I am definitely going to seek out the most experienced surgeon ... from the other posts I've read and the ones that you were kind enough to write, it seems that is the key. I don't want to gear up for surgery only to have it not work or need to be redone.

ella138 ... thank you for all the advice. I'm definitely going to check out your journal!

MarkR ... I was looking for information about Dr. King at Cedars but it appears that he is no longer there. Any idea where he went?

Fizzbw ... I've not heard about the sling - only the teflon so I will look that up and see what I can find out. It is interesting what you said about how the teflon could also irritate the nerve ... I don't know why I never thought of that.

Artist1 ... great questions to ask the surgeon - thank you!

I am so happy to hear that the MVD is working for y'all and I can't thank you enough for sharing your experience. Keeping you in my thoughts and prayers!

[karenina]

Hi DaisyG
Im also a newcomer to TN and have been advised by various Neuros that surgery should only be concidered as a very last resort. (Guess there is some truth to this but then again I do not know of any of them who had to withstand the pain or the side effects of the drugs they shower us with) Keep a look out for rachel magoon. She can maybe help u as she seems to have been through the mill of TN a few times. Here is her email address kewlbutterfly@yahoo.com. Good Luck and hopefully thinking of you
Karenina
davie.k@absamail.co.za

[stefanies]

Hi Daisy! My TN strike the same as you...kinda. I was 29 and planning a wedding.
I got the MVD in hopes of getting off my Keppra so I can have a baby. It didn't work as planned, but the more I read, the more women I know that have had babies on all sorts of meds. I know some are a major no no, but I spoke with a Perinatologist about it and he had no concerns with the Keppra.
I would say interview as many surgeons as you need. That way you can feel comfortable about your choice. I brought my mom and husband with me to one of the pre-surgery appts so they could ask questions too. I recommend that b/c it is overwhelming.
All surgery is a risk. I think that a lot of it is luck as well. I had a very highly recommended surgeon, who is recommended on the TNA website, and mine didn't go smoothly. But a lot of people have a lot of success and you will never know unless you do it.
Everything in life is a risk. Sometimes it works out and sometimes it doesn't. I wish you the best of luck and lots of babies! :)

[JeanC]

Just a note of caution about the docs Ella listed above. These came from the TNA Medical Resources (http://tna-support.org/newlook/medinfoonline_files/medical_resources.htm) page, i.e. a list of health care specialties that comes up when you click on "Click Here to find Healthcare Professionals in Your Area" (http://tna-support.org/newlook/medinfoonline_files/medical_resources.htm) from the TNA home page. Please note the disclaimer paragraph above the list of specialties. These people all paid a fee to be listed and their appearance on the list does not constitute an endorsement by the TNA. (I'm not saying this was the case with you, Stefanie, as I don't believe that this list/"service" existed in this form when you had your surgery - I think it appeared last spring, after your surgery. And I'm sure you did your research. I'm so sorry things went so wrong.) Just be sure to do your own research/interviewing to determine the best doctor for you, as the disclaimer (and Ella) advises, and don't just go with them because they appear on the list. Even those on the TNA's Medical Advisory Board don't all agree on issues, approaches, etc. - which is a good thing, really. Dr. Jannetta was a pioneer with the MVD and it took a generation for it to be an accepted treatment for TN. Now as new approaches come along, some docs will embrace them and others will stick with the tried and true - both will have successes and failures and the proportions will determine the accepted practices of the future. You have to determine what's best for you.

Anyway, just wanted to point that out. I was kind of unhappy when I saw that list/service appear in that form as I'm afraid too many people will take anyone appearing on it as a recommendation by the TNA and not do their homework. All that being said, I do have a lot of faith in the docs on the TNA's MAB - I've heard a lot of them speak at the conferences and had a chance to talk to some of them one-on-one and they are, for the most part, caring and very good at what they do. Again, they have their specialties and comfort levels and there own success rates so be thorough in your research, Daisy, as it appears you are and find the one that feels right for you. Good luck!

[stefanies]

Wow Jean, that is amazing! Kind of sickening isn't it? My dr wasn't on the list back in Jan, but the TNA recommended him when I called, and my neuro recommended him as well. I'm sure most of his surgeries go well, or he wouldn't be the head of the neuro department...I'm just his 1 in a million...too bad it doesn't work with the lotto. :(
Maybe you can find a support group in the area that can recommend someone? We have a good one in my city and I'm sure someone could recommend a surgeon if I needed one. That's another idea. Word of mouth is the best way for recommendation I think.
Let us know what you decide. We are here for ya Daisy!
Stefanie

[JeanC]

(3) Does anyone have suggestions for questions that I should ask the surgeons when I have my consultation with them?

Hi again, Daisy,

I was going through my conference materials and came across a few things that might be useful to you and others considering surgery and interviewing surgeons (Jane - I hope you're reading this thread).

Ken Casey (co-author of Striking Back, neurosurgeon, TNA MAB mbr.), presented on Selecting a Surgeon and said that the "right" operation is the operation the patient wants most.

Key questions you should ask the surgeons you interview (many of these repeating Ella's and Kellie's, but these are critical questions to you. They are drawn from a couple of presentations):

1) How many successful surgeries have you done?

2) What is the recurrence rate of your surgeries - how often does the pain return, and how long do you follow your patients?
(Overall MVD success rate is 92-98% initially for classic TN but drops off to 80-85% over time (i.e. 10+ years out), although the other surgeries drop off even more and faster over time. Nonclassic cases have a higher failure rate.)

3) Is the procedure repeatable if the surgery fails/pain returns? How soon can/should it be repeated? Are other procedures options if this one fails?

4) What are the risks and how much for each - ALL of the risks?

5) What will you do if the surgery fails/pain returns? (Make a plan with the surgeon - know your options beforehand.)

That's it for now - I hope this helps. Will be back as I slog through my notes and material.

Jean

[Jane]

I am in much the same boat as you -- diagnosed for a little over a year and currently interviewing neurosurgeons. I talked to three in the southern cal area in the past couple of weeks including Dr. Giannotta who came highly recommended from my nephew who is a neurosurgery fellow at a different institution in the area. I was quite impressed with him. I also saw Mark Linskey (on the TNA MAB) and was impressed with him and his staff as well. I personally would go with either of them ---- and am actually in the throes of a decision between the two, though I am still hoping to get in to see another recommended doc a bit closer to home (i have family in southern cal which is why I was also looking there).

But it really comes down to who you are most comfortable with after you do your research and then meet the doctors and talk with them yourself. If the doctor meets all your "expertise" requirements, then it comes down to your personal comfort level. Another doc who was highly recommended, I did not like at all when I met and wouldnt consider at all -- personal karma I guess.

Best of luck to you!

jane from kentucky

[ella138]

Everything being equal (the surgeons I mean), you should also take into consideration the hospital and it's policies and reputation. Remember once your surgeon does his job, you are in the hands of nurses, support staff, and hospital policies. In my case, they gave me a private room and brought in a cot so my husband could stay with me and be at my beck and call. ;) I was up all night while he slept, :eek: but it was comforting to see him there anyway.
Sometimes it can really add or detract from your comfort and healing experience.

[Jane]

Jean, the questions you pulled together from the conference presentations were really helpful (and yes, I am following this thread!). I have asked most of them as I have talked with surgeons. One thing that I really like about one of the docs was when he volunteered his complications statistics before I even asked -- and they were very good - but he then gave the immediate caveat that I could always be the one that didn't turn out well. Kind of a dry humor that broke the tension that we were talking about major brain surgery here.

Daisy -- another question I asked was whether or not the surgeon does a partial sensory rhizotomy (psr) or "nerve scraping" if for some reason they do not find a compression when they get in there. This talked about in Striking Back (referred to in an earlier post) on page 252-253

A brief definition is: "...a partial sensory rhizotomy (psr) in which some of the trigeminal nerve fibers are cut in order to stop pain transmission. However, PSR may result in sensory loss." from p. 298 of INSIGHTS by Joanna M. Zakrzewska MD, the latest book out on TN and available from the Trigeminal Neuralgia Association.

It seems like there are pros and cons to it--- but it is just something good to know about and know where your surgeon stands on it and how you feel about it up front. And it seems like it is only an issue if for some unlikely reason they don't find a compression. But I am an information "glutton" and like to know about all possibilities. And then pass them on...

And off the subject Daisy, I feel a connection with you -- other than the TN -- my nickname in junior high was Daisy and I hadn't thought of it in years and then here you are!

Lots of postive thoughts as you search for a surgeon. Sounds like maybe we'll both be having a successful mvd in the not-too-distant future! (the power of positive thinking!)

Feel free to send me a private message if you want more info on the surgeons I talked to recently.

jane from kentucky

[irishchick]

Hi Daisy, I had the MVD in March 2005. It was successful, but not until 6 months later. Ella and I had the same doc, but not the same hospital experience.

Make sure once you have a surgeon that you feel comfortable with that you find out about the hospital policies for pain relief- specific to that surgeon!!! At the pre op I was assured by 3 different people (nurse, anesthesiologist, and resident) that my pain would be very well managed. Only to find out after the surgery that my doc doesn't believe in pain pumps, and prescribes minimal pain meds due to the nature of the surgery:eek: (wants to check neurological function afterwards).

I was in a tremendous amount of pain my entire stay in the hospital, which made it a horrendous experience. I warned Ella about it ahead of time, and my husband had complained about my treatment there to the ombudsman, and it seemed to be much better for Ella 3 months later, which is fantastic:) .

- make sure you are prescribed pain meds for home- I asked on the day of my discharge if I would be given meds for home, and when I got the prescription, it was TN meds and anti nausea meds, no pain control whatsoever! By that time the docs were not around.

Each surgeon has their own preferences for pain management- so don't go by the general hospital policy.

Other questions:
-Surgery success rate by percentage- and does that mean everyone who it worked for immediately, or patients that had recovery months later?

- expected length of hospital stay

-are you expected to walk out of the hospital, or will you be taken in a wheelchair to the front door- this may seem like a "no-brainer", pardon the pun, but I was told to walk:confused: . Couldn't walk, extremely dizzy/nauseous. Had to fight with the nurses about it, took 45 minutes to get a wheelchair (my husband told them we weren't leaving to free up the room otherwise). Miraculously a wheelchair appeared moments later.

-length of time you will be off work

I had an MRI (not thin slice) ahead of time, no compressions were seen, but 3 were found (artery and veins). I was 37 at the time of the surgery, and had had TN for 10 years.

Babies-- Birth control does NOT WORK with some TN meds:eek: - I got pregnant both times while on the pill, and one of the times for sure was due to tegretol ( I was on 400 mg/day). I stayed on tegretol throughout my pregnancies, and during the first one had a major attack and went up to 1100 tegretol per day for at least a month.
I had to have an extra ultrasound to check the brain stem of the baby, but there were no complications. My daughter is now 8, very healthy, very smart. Couldnt' take baclofen as it wasn't ok'd with pregnancy, I usually combined tegretol with it to get the best results.

Despite my hospital experience, I do not regret my decision to have the MVD, I don't take any meds for TN now, and the occasional pain is more than tolerable. My babies are healthy. Life is good!!

Good luck with your search Daisy- remember, there are no stupid questions.

Karen

[Silver Swan]

Dear Irish Chick (Karen):

Here in the Twin Cities of Minneapolis and St. Paul, Minnesota, U. S. A., all patients leaving the hospitals here go in a wheelchair, no matter what was done while they were in the hospital. It is hard to believe that there in Canada they don't do the same thing. I think the main reason is the hospital doesn't want to be sued should the person fall! And many patients probably need the security of not walking to the car because they are still unsteady, perhaps still taking meds that make them feel dizzy or shaky.

Shirley H.

[baywatcher]

I've always been wheeled out to the door, even when I protested that I was just fine (I thought I was, I wasn't really but wouldn't admit it) so I think that it must be a pretty general policy. As Shirley says it may be more for insurance purposes than concern for patients - whatever, they took me right through the door. Sounds like a great idea after brain surgery so ask I guess if they don't offer. Nancy

[ella138]

I have had surgerys in three major hospitals in Toronto, Canada. Sunnybrook, Mt, Sinai and Toronto Western. Always wheeled out in a wheelchair. Even argued that I wanted to walk and they always forced me to get into that wheelchair, right to the front door! I agree that they dont care a thing about how you are feeling. It is strictly for insurance purposes (just my opinion). Thanks for paving the way for me Karen, sorry you had to suffer so much so the rest of us could have better experiences.

[irishchick]

Hi girls, yes, every previous surgery I had had, having babies, whatever, I never had a choice about being wheeled out, it was policy. I am sure it is policy at the hospital I was at as well, but we were told they were too busy to find us a wheelchair. Figures, the only time I actually needed the darn thing!!

Ella, I am so so glad your experience was better, that is why I post about the problems I had, so everyone else can ask ahead of time and not go through it:)

[NattyNat11]

Daisy, have you done the surgery? I did the MVD surgery with Alksne. Dr. Graff-Radford is a lifesaver. I owe that man everything. He literally saved my life. I am glad I did it. It took me a long time to make the decision but it was the best thing I could have possibly done.