MVD Decision

1

I’ve read so much about this surgery, and I had told myself it would be my last resort if nothing else worked. However, I woke up this morning and experienced the worst pain I’ve had in my life due to Trigeminal Neuralgia. It’s attacked me multiple times today, and it’s broken my morale. I can’t do this much longer, and I’m at a breaking point. I need to consider MVD more seriously. Knowing most of you can relate to the pain this disease causes, the stress, how easily it can ruin your life… I need some honest opinions and some whole-truth answers. I don’t want anything that’s softened or altered; blatant opinions please.

I’m 16. I’ve dealth with TN for about 2 years. Medications haven’t worked, and there hasn’t been any aid for me regarding this disease so far. I’ve tried 5-6 medications that did absolutely nothing for me. I’ve tried Lidocaine infusions which are just way too time consuming to wait and see if it develops any results. Trying all the medications is going to take too long. Gamma-Knife is not an option for someone of my age. I don’t trust the chances of glycercol injections. This disease has ruined (and trust me when I say ruined) my life. My grades are drastically lower, my social life has declined drastically, and I really can’t eat, drink, sleep, talk, or even keep oral hygeine properly.

I’ve talked to a Neursurgeon who has performed MVD surgery before, and even with people of my age who have had Trigeminal Neuralgia. He told me the risks, etc. I trust this man with the surgery. The only thing I worry about is he said regarding my age, if he opens up my skull and decides there’s not enough room to perform the surgery, he’s not going to risk hurting me. My other concern is that my MRIs have showed up fine, not confirming any sort of problem. But this is definitely Trigeminal Neuralgia, we just haven’t confirmed the cause.

What would you guys do in this situation? I’m leaning towards the surgery, because I’m just miserable. I really don’t think I can do this much longer, let alone allocate the time that it would take to try medication and everything else.

2

You sound very mature for someone so young. I am sorry that you are suffering from this terrible pain of TN. I had the MVD when I was 67, the same age as when I began having pain. Before then, I had never even heard of Trigeminal Neuralgia. MRI's are usually done to confirm that the patient is not suffering from some other cause of TN rather than the nerve being compressed by blood vessels. Nerve compressions are not always seen on the MRI. My MRI was 'normal'. If your surgeon is concerned about your age, you may want to request a consultation with a pediatric neurosurgeon. Good luck to you.

3

Thank you very much Mimi, especially for your input. That tidbit about the MRI is very helpful, and I’m glad you had a successful surgery. & I do believe my neurosurgeon is both a pediatric and regular neurosurgeon, but i’ll check on that.

Thanks again.

4

Thomas, go read KTRose’s Mom’s blog on the Blog page, there are two. Show the blogs to your parents as well.
KTRose is 11 and had a successful ( to date ) mvd 3 months ago.
Best of luck to you, I understand your pain, I hope you get relief soon,
((Hugs)) Mimi ( the other Mimi) : )

5

http://www.livingwithtn.org/profiles/blogs/3-months-post-mvd

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http://www.livingwithtn.org/profiles/blogs/our-decision-making-process-for-mvd-for-12-year-old-daughter

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Most of us will never know the cause of our TN -- it lays there dormant till something sets it off -- can even be hereditary

Your surgeon should have SEVERAL TN patients and done SEVERAL MVDs --- if all goes well -- 2 weeks in bed and you have a new life BUT --- it could last a day / a week / a month / a year / a decade!

Many have 2 in their lifetime --- sometimes it takes 2 MVDs to make it all better -- HOWEVER

When you have MVD -- you must wait 12 months before the results you feel are the most accurate post -op because it takes a year for all that to heal

Studies show the sooner the MVD the better the odds

Keep us posted!

8

Thanks for linking those Mimi. That story has made me very hopeful. Thank you for your input Dancer. I’ll be sure to check on those things before I decide on MVD.

9

Thomas, I am sooo very sorry you are struggling with this condition. It was absolutely awful watching KTRose struggle with it, and I know she struggled to maintain a good attitude often. Don't get too down on yourself for that struggle. It is completely understandable. I know you saw our post about her 3 months post surgery, and she is really doing amazingly well. I'm not saying the surgery will be no big deal. It's brain surgery, there's no pretending that's a walk in the park. But she came through it soo much better than we expected, and returning to 'normal' life has happened very quickly for her has well. I truly wish the same for you and ANYONE much less any younger person with this completely overwhelming at times condition. If there is anything I can tell you about or help you with, let me know. Praying for you.

10

Most MRI's DON'T show the compressions. They usually don't see it til they get in there. I have already made my decision that when meds don't work anymore, I am having the MVD. It has the highest success rate! Make sure your neuro does MVD as one of his specialties. My opinion..........get the MVD, but just make sure the neuro does it as one of his specialties!

11

Thanks for checking this out KTRs Mom, I appreciate your input greatly. Also thank you Donnna, your input is also appreciated. I pretty much full control of the decision, but my mother is a little worried. She supports what I want to do, but again, she’s worried. Which is expected for a mother who has a child with such an affliction that requires such serious surgery. I’ve gotten some painkillers from my Primary Care Physician and I’m considering a neurosurgeon, I have to wait for my mom to contact him and see his experience with MVD. Just an update so far.

12

I didn't get relief from the pain until recently and am keeping my fingers crossed I suffered for 8 months I am on a high dose of nortriptyline I have type 2 pain though I am trying to eat healthy too! If you have tried everything such as high doses of meds/accupunture/nerve creams to the face/upper cervial chiropractics/chinease medicine.... I mean if you have exhausted all options Then yah I would get a mvd You can't be held down forever by this!!! I hope you find a answer soon!

13

I had TN and ATN and had an MVD 6 months ago, I had a ton of complications due to the fact that I am allergic to just about any pharmaceuticals there are, and I can honestly tell you, I would do it again in a heartbeat. I am about 90-95% pain free, I have some tooth pain and ear pain, but they are more annoying now, rather than before the surgery, when it was the "kill me now" pain.

It absolutely sucks that you are so young and are getting beat down by this, I feel for you, its not friggin fair! But you seem to be a very intelligent and well spoken man that is capable of handling all this as hard as that seems. you should be proud of yourself there!

If you are interested, feel free to message me and I can tell you about my surgery, I would be glad to help!

I am still looking for a cause, because I have other neurological and auto-immune type issues going on, and per my neurologist, if we find that cause, then that other 10% of the TN thats left could be gone. The cause sometimes doesnt matter, because the damage is already done.

Keep us posted on your thoughts and how you make out

Wendy "crashgirl"

14

Thanks for the update Thomas. It is a big decision, and it's good that you are gathering all the info you can. If you Mom wants to talk to another Mom, let us know. :-) There are several of us here to had to watch our 'babies' (and like I tell my daughter, when you're 87 you will still be my 'baby', get over it) in this pain and make decisions about surgery with them. We get the fear. Let us know what happens!


Thomas Ogden said:

Thanks for checking this out KTRs Mom, I appreciate your input greatly. Also thank you Donnna, your input is also appreciated. I pretty much full control of the decision, but my mother is a little worried. She supports what I want to do, but again, she's worried. Which is expected for a mother who has a child with such an affliction that requires such serious surgery. I've gotten some painkillers from my Primary Care Physician and I'm considering a neurosurgeon, I have to wait for my mom to contact him and see his experience with MVD. Just an update so far.
15

Hello. I'm so sorry to hear you're dealing with this at such a young age. I'm over twice your age and it was hard enough for me to deal with. I had MVD surgery in September, and I understand some of the feelings you are dealing with. So here are my thoughts and some of the reasoning behind having the surgery.

Like you, I tried multiple meds, pain killers, etc. By the time I'd decided to have the surgrey, I was having so many episodes a day, it was almost as if it was constant. I would have hours where I couldn't talk, I'd roll up in a ball and 2 of the loratab 10 barely made a dent in the pain. I had intermittent FMLA because I work in sales and I'd have days where I couldn't drive, couldn't talk etc. There wasn't always a trigger to it, and like you it would wake me sleeping. I work from a home office and it was hard enough for me to handle things, I can't imagine trying to go to school.

I'd met with my Neurosurgeon a few times before, and he'd tried other meds to. I had bad side effects to some of the most common meds like Tegretol, and it didn't really help when I was on it either. So I talked options with my Dr. He said that I was young and healthy and he felt MVD was the best way to go. He pointed out that it has the highest rate of success (his surgeries run about 90%) and also had the potential for less long term side effects. He did point out that the complications that can come from the surgery are much more serious that say Gamma knife. But he said with Gamma knife it's now "if" you'll have nerve damage, it's "how much" nerve damage you'll have. Where MVD could be done with no nerve damage.

So after weighing all of the cons with the pros I decided to have MVD. I know everyone has different results. Mine were very positive. I woke up and touched my tongue to my teeth, and for the first time in a long time, I didn't feel like they were falling out or abscessed. They felt normal! I didn't have pain running up and down my face. I smiled and touched my face and it felt normal. It kind of blew my mind that I could fall asleep one way, and wake up another.

It will be 6 months next week. I'm not saying this was an easy surgery. I did have a slow CSF leak that kept me from lifting much for a few months, but it cleared on it's own without another surgery. My pain is for the most part gone. I feel a little twinge off and on, but it's happened less and less the farther I get from the surgery. When he went in there was an artery and a vein with the nerve and there were grooves in the nerve. So I'm thinking it just had to heal from being compressed. I do still take some gabapentin, but for a different condition.

I do know that some people have the surgery fail after awhile. I know that can happen to me. If it does and I have the option to have it again, I would do it again. It was that life changing. It can have serious complications, so it's not something to take lightly, and I think that it is a last resort type of thing. But when the pain controls every aspect of life, I think... well to me, it was worth the risk. Good luck in whatever you decide. If you have any questions feel free to send me a message. I don't know what part of the country you are in, But if you are in the Carolina area, I HIGHLY recommend my Dr. Dr Kanos was very through, understanding, and has done many of these procedures.

16

Hi Thomas, I am so sorry to hear about the awful attacks that you have been having. How awful. I know that from other things that you have posted here that you do your best to keep a positive attitude and to try to find creative solutions to the troubles you face, so I believe you when you say that you’ve reached a breaking point. I’m not a surgical candidate myself, so I’ve never considered it personally; that said, I do think you are at a place where it is appropriate to start seriously considering an MVD. You have been dealing with this for two years now and have tried many medications to no avail (though trying more meds or a combination of meds is still an option that could be explored). From what I have read here, gamma knife is to be avoided, so I am glad that you have crossed that off your list of options.

If it were me, I would want the absolutely best surgeon possible, as this type of surgery could affect the rest of your life, for better or worse. Would it be possible for you to see KTR’s surgeon, for example? You really want someone who has a great deal of experience, especially with someone your age. Even if it means waiting a bit longer, it would be worth it.

I will be sending good thoughts your way.

Take care,
Chris

17

Thanks to those who replied.

Chris, thanks for your empathy and input. It helps a great deal. KTR’s Mom actually contacted me about a contact to find an experienced surgeon and also inquire about the same surgeon. However, she also informed me he plans on retiring from surgery in June so I’m not sure if that’s an option yet. I can’t write much, only have a bit of time, but thank you guys.

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can you travel? I had to fly to another state and we drove home for MVD because he is tops in the field for decades!..... you

can google Dr. Ken Casey - and email them - and he will give you a reputable person in your area - or if you can - see him...

keep us posted!

19

You are such an inspiration to walk through this pain at your age and still be laser focused on how to fix and / or manage this pain the best way possible.

If you friend me on this site, you can see my full story. Meanwhile, long story short, I'm 7 years out from an MVD done at Johns Hopkins in Maryland. Dr. Ben Carson, a pediatric neurosurgeon makes exceptions to perform surgery on adults with this disorder because it is the worst pain know to the medical community. He took 4.5 hours to carefully take muscle from my scalp and wrap it around the nerve. He found an offending vessel, that was not evident on any of the MRIs—not even the 3D MRIs done for the two gamma knife surgeries done prior to the MVD. Dr. Carson did change the pain to not be so excruciating, unrelenting and invasive. The pain was to the point where you drop on your knees and beg for mercy. The nerve still acts out, due to the damage from the gamma knife surgeries. Pain management is done with several things now, but sometimes the damaged nerve cries in pain for a few weeks a month, but it is at it's highest, a level 7-8 burning pain, rather than a number 10, stabbing, searing pain (if that makes any sense!). My doctor referred to the pain as anesthesia delorosa now, due to the harsh radiation burns.

In 2006, my husband and I flew to the east coast, from Portland, OR, to have the Dr. Carson do his magic. Weigh your options VERY carefully. You can talk to any of the physican's assistants that work with the neurosurgeons for free. There is a process to evaluate a candidate for the surgery. They may be a place to get an opinion, or maybe even the surgery. I read Dr. Carson's books before I ever let him in my head! I felt I could trust him due to his expertise, but most of all his heart to use his hands to heal the suffering. Lately you can find him on TV, or YouTube due to his no-nonsense appeal to the health care problem and overspending our country is doing. He is a guy who searches for solutions.

Take care, my young Friend!

Many prayers for you!

Lynda

20

Lynda, our Dr. Is Dr. Ben Carson, too. He is amazing. Of all the accounts of his patients I’ve read/heard, I haven’t heard of anyone with notable complications. And we had a wonderful experience with him for my daughter. Our last appt. with him is In May, and he is retiring from surgery in June. Apparently he set an age for himself long ago at which he would retire, and he’s sticking to it. How sad for us all. However, for those out there reading this, Johns Hopkins, where he is, has a TN center and at least three other Surgeons who perform MVD as part of the TN center.




LyndaS said:

You are such an inspiration to walk through this pain at your age and still be laser focused on how to fix and / or manage this pain the best way possible.

If you friend me on this site, you can see my full story. Meanwhile, long story short, I’m 7 years out from an MVD done at Johns Hopkins in Maryland. Dr. Ben Carson, a pediatric neurosurgeon makes exceptions to perform surgery on adults with this disorder because it is the worst pain know to the medical community. He took 4.5 hours to carefully take muscle from my scalp and wrap it around the nerve. He found an offending vessel, that was not evident on any of the MRIs—not even the 3D MRIs done for the two gamma knife surgeries done prior to the MVD. Dr. Carson did change the pain to not be so excruciating, unrelenting and invasive. The pain was to the point where you drop on your knees and beg for mercy. The nerve still acts out, due to the damage from the gamma knife surgeries. Pain management is done with several things now, but sometimes the damaged nerve cries in pain for a few weeks a month, but it is at it’s highest, a level 7-8 burning pain, rather than a number 10, stabbing, searing pain (if that makes any sense!). My doctor referred to the pain as anesthesia delorosa now, due to the harsh radiation burns.

In 2006, my husband and I flew to the east coast, from Portland, OR, to have the Dr. Carson do his magic. Weigh your options VERY carefully. You can talk to any of the physican’s assistants that work with the neurosurgeons for free. There is a process to evaluate a candidate for the surgery. They may be a place to get an opinion, or maybe even the surgery. I read Dr. Carson’s books before I ever let him in my head! I felt I could trust him due to his expertise, but most of all his heart to use his hands to heal the suffering. Lately you can find him on TV, or YouTube due to his no-nonsense appeal to the health care problem and overspending our country is doing. He is a guy who searches for solutions.

Take care, my young Friend!

Many prayers for you!

Lynda