I saw a top-rated neurosurgeon at Duke on Monday. He has a 96% cure rate with the type of MVD he performs when he finds a compression. He is offering me the choice to go ahead with the surgery. His technique is less invasive than others I have researched and he has done 2500 of these surgeries. His office was wall to wall newspaper articles, accolades and medical degrees. He has performed many brain surgeries all over the world that other doctors could not or would not do. I feel confident that he is the right surgeon for me. His name is Dr. Fukushima. If anyone knows anything about him feel free to let me know. I am now looking for courage to go through with this! He was the 10th doctor I have seen in my quest to rid myself of this pain. He said that sometimes (less than 10%) they operate and do not find a compression. I think in the back of my head this is what I fear. Because my pain is only under my teeth I still cannot rid myself of the nagging fear that it is tooth related. However, I have seen 3 dentists, 2 endodontists and 1 oral surgeon in the last 4 years. They can't all be wrong. The first neurosurgeon I saw also said he saw a vessel next to the nerve on my MRI. I had been doing well on Trileptal, but the past few days I am having a lot of breakthrough pain when I eat. I do not want to keep upping this med or add more to it. Encouraging words would be appreciated as I try to mentally prepare for this and set a date.
I just went in for MVD on January 25th. I suffer from mostly atypical pain (a TON of aching in my teeth, burning, throbbing etc), but I was desperate to get off of Tegretol. My neurosurgeon (also a fabulous one, with an amazing success rate) also thought he saw a vein compressing my nerve and suggested we move fwd with surgery. When I woke up, I found out that there wasn't a compression. I lost it. BUT, after talking more with my surgeon as well as the entire neuro team, the entire idea of a compression is still just a wide spread theory. My surgeon ended up just manipulating my nerve bundle, just touching it, kind of unwrapping it and re-organizing it and in doing so, I guess this often leads to relief for his patients where there isn't a compression. So, I took 5 weeks off to heal and recover and was hopeful. It's 8 1/2 later and I'm 100% drug free and about 95-98% pain free and the pain I have really isn't even pain, its like minor twingy feelings — my Dr. said that nerves take months and months to heal and that those feelings are mostly likely a result of just my nerve healing. Before surgery I was on 500mg of Tegretol a day and 300mg of Lyrica a day. I was a zombie and I was still in pain. I was about to take a year long leave of absence from my job and I was very depressed. I'm 28 years old and this just wasn't the life I planned. Once I set my surgery date, I really just focused on my goal — pain free, drug free life. Its been just over 2 months and I'm pain free and drug free — AND there wasn't anything to compress.
I 100% support you in moving fwd with surgery. I feel like a better version of my old self. I have this quote sitting on my desk and I read it every day "She stood in the storm, and when the wind did not blow her way, she adjusted her sails" - Elizabeth Edwards. After living the last 2 years in pain, I decided that this year would be my year — I would finally learn to adapt and take care of myself. For me, that was finally making the decision to move forward with surgery and I could cry at the drop of hat, in happiness with that decision. I'm thrilled with my outcome.
Please feel free to message me with any questions. CHEERS! Jessica
Thank you for the reply Jessica. I have read many of your posts on this board and the MVD Group. I'm glad that you are feeling better. I sent an email to the dr's office yesterday trying to get possible dates to proceed. The pain has returend when I eat the past two days. It's not as bad as it was a few weeks ago, but bad enough. Talking and eating are my only triggers. I don't hurt otherwise. So far, the Trileptal I am on is still preventing the pain with talking. I've been on it for about a month. Do you know if it's normal afor the pain to start coming back that soon? It had been controlled about 95% until the past coupld of days. Now, I'm getting the sharp pain under my teeth when I try to eat. I guess this is must confirmation and motivation for me to get the sugery done as soon as I can to hopefully be done with this disease!
dear Jessica- thanks so much for sharing.
dear Blder.
good luck.
did the doctor SAW a blood vessel on the MRI ? i - like you- am conviced it something in the tooth/teeth or jaw.
you said you went to 3 dentist.. i've been (and i'm NOT aggerating) to 40 dentist here..tens of oral doctors.. and many more dcotrs... cause i can not except living with this pain.. or "Annoying feeling" all day - and the drugs i tried (didn't try them all) only helped in 20%.
i can't tell you - and not the doctor - allthough out situation mimics dental pain - it considered to be a nerve pain.
BUT - and i wrote it here many times - i knoe personl stories of people that ALL the experts told them they don't have a dental problem only to discover after months/years of suffering that they DID have a dental problem now shown in the XRAYS (i swear i know at least 5-6 personal stories from my country).
on the other hand - if someone would offer me such an operation and it would be a good surgeon .. i would maybe take it.
good luck
Jeccia - some doctors also told me about a probability that some nerves got mmmm.. don't know the word - like "bundled" and pressed toghther .. and theroetically they should like seperate them. but since it's all theoretically - and they can't know which nerves are hurt (i didn't respond to nerve blocks) - i don't know how they can handle nerved they don't see.
many thanks for sharing.
nir
JessicaG said:
I just went in for MVD on January 25th. I suffer from mostly atypical pain (a TON of aching in my teeth, burning, throbbing etc), but I was desperate to get off of Tegretol. My neurosurgeon (also a fabulous one, with an amazing success rate) also thought he saw a vein compressing my nerve and suggested we move fwd with surgery. When I woke up, I found out that there wasn't a compression. I lost it. BUT, after talking more with my surgeon as well as the entire neuro team, the entire idea of a compression is still just a wide spread theory. My surgeon ended up just manipulating my nerve bundle, just touching it, kind of unwrapping it and re-organizing it and in doing so, I guess this often leads to relief for his patients where there isn't a compression. So, I took 5 weeks off to heal and recover and was hopeful. It's 8 1/2 later and I'm 100% drug free and about 95-98% pain free and the pain I have really isn't even pain, its like minor twingy feelings — my Dr. said that nerves take months and months to heal and that those feelings are mostly likely a result of just my nerve healing. Before surgery I was on 500mg of Tegretol a day and 300mg of Lyrica a day. I was a zombie and I was still in pain. I was about to take a year long leave of absence from my job and I was very depressed. I'm 28 years old and this just wasn't the life I planned. Once I set my surgery date, I really just focused on my goal — pain free, drug free life. Its been just over 2 months and I'm pain free and drug free — AND there wasn't anything to compress.
I 100% support you in moving fwd with surgery. I feel like a better version of my old self. I have this quote sitting on my desk and I read it every day "She stood in the storm, and when the wind did not blow her way, she adjusted her sails" - Elizabeth Edwards. After living the last 2 years in pain, I decided that this year would be my year — I would finally learn to adapt and take care of myself. For me, that was finally making the decision to move forward with surgery and I could cry at the drop of hat, in happiness with that decision. I'm thrilled with my outcome.
Please feel free to message me with any questions. CHEERS! Jessica
Jessica,
Nerve compression is not an idea or a theory. It’s a reality, with validation in medical literature. Many TN patients have been diagnosed with Trigeminal Nerve Compression that was documented on MRI results. Many others did not have compression seen on their MRI, but compression was found during surgery.
JessicaG said:
"…after talking more with my surgeon as well as the entire neuro team, the entire idea of a compression is still just a wide spread theory."
Dear blder1,
I wish you the best and encourage you to do more research on what type of TN you have before you proceed with any surgical intervention. Also, did your neurosurgeon discuss success rates for different types of TN? Does he follow his patients post-op, so that he can document his success percentages? If he doesn’t then he can’t support those claims. There are different success rates for the different types and no one can guarantee that your surgery will fall into the (for example) 96% success and not in the 4% failure. You also need to either be advised or do your own research on possible surgical complications that are a risk in any MVD surgery.
There is no such thing as a “less invasive MVD”. There’s only one way to get to the Trigeminal Nerve, which is through the skull and into the cranium. Your neurosurgeon may claim less “manipulation”, but not less invasive.
Hi Gloria —
Sorry, I probably didn't word that correctly and I hope that I did not offend you. What I guess I meant to say is what my neurosurgeon and neurologists have explained to me is that the idea of a compression on the trigeminal nerve is what causes the erratic pain signals. However, there are plenty of people who have a compressed trigeminal nerve but they do not suffer from TN. So why do some have pain and others have none? That's why I guess I used the term theory. It's not 100% full proof. Yes, absolutely decompressing the nerve fixes so many people's pain, but what was explained to me is that by touching the nerve during surgery, that may be a fix in and of itself. Thus far, for me that seems to be the case and for many other patients like myself that same is true.
That's all. Again, I apologize if I implied something else.
Gloria E. said:
Jessica,
Nerve compression is not an idea or a theory. It's a reality, with validation in medical literature. Many TN patients have been diagnosed with Trigeminal Nerve Compression that was documented on MRI results. Many others did not have compression seen on their MRI, but compression was found during surgery.
JessicaG said:
"...after talking more with my surgeon as well as the entire neuro team, the entire idea of a compression is still just a wide spread theory."
Hi Jessica,
I was not offended at all - just wanted to clarify. And I completely agree that compression doesn’t mean you have TN. Some people can have nerve compression and no pain. For some the cause is apparent and others the cause is never known.
Totally ... the only reason why I am so vocal about my story is because I have found relief (and I'm very hopeful I continue to feel this way) and because pre-surgery, the only permanent fix that I knew of was decompression surgery. And since I didn't have anything to decompress, I was heartbroken. I sat in my hospital bed sobbing. But it was explained to me over and over again that it didn't mean my surgery was a failure — many times just that nerve manipulation helps people. I had never ever heard of such a thing, in all of my research! So that's all ... I had never heard of my type of situation before. Nerves are just so bizarre. I wish that relief was an easy answer for us all. Thanks for all of your support and insight Gloria. Hugs.
Gloria E. said:
Hi Jessica,
I was not offended at all - just wanted to clarify. And I completely agree that compression doesn't mean you have TN. Some people can have nerve compression and no pain. For some the cause is apparent and others the cause is never known.
One observation for Jessica and Gloria: I've also talked with neurosurgeons about the consequence of manipulating the nerve during surgery. I'm told that numbing of the nerve may extend to a few weeks or months after it is manipulated -- but there is also a risk of long term reaction to the manipulation, and a return or even increase in pain. Some surgeons advocate for minimal handling of the nerve during the procedure, presumably in an effort to reduce chances of this long-term pain increase.
Regards both,
Red
Hi Red..what do you think about the PRS surgery with the needle in the cheek...?that's what my NS is wanting me to have done. I can't have the MVS because of my tumor ...any input would be appreciate...thanks..God bless
If by PRS surgery you mean a percutaneous radio surgery or RF Rhizotomy, the medical outcomes of the procedure are actually pretty good, particularly with typical TN. For classic TN, the initial success rates exceed 90-%, with about 70% probability of pain-free outcome for at least seven years. Given that you are dealing with a tumor, I would have to qualify this input somewhat -- not knowing where the tumor is, I can't say one way or another whether it would influence the likely outcomes of a rhizotomy. That's a judgment for a neurosurgeon who does rhizotomies, in any event.
Regards and best,
Red
Gloria,
Thank you for your input. I have researched everything I can find and have seen 10 doctors over the course of my pain history. I have read the book Striking Back as well. I am of the mindset that if there is something they can do to possibly cure this then I am willing as opposed to continuing to increase the amount of drugs I am taking. I am only 43 and otherwise healthy. The neurosurgeon I am seeing did discuss risks of the surgery with me. By less invasive surgery, I mean that his technique uses only about a 3 inch incision and requires a dime size hole in the scull. He has done over 2500 of these procedures and has a proven track record for treating Trigeminal Neuralgia. I do not feel like I am going into this decision with blinders on or unrealistic expectations. However, I have children to raise and a family to take care of. I can not sleep my life away or deal with dizziness and side effects from continually upping/changing medication. I feel like I need to take this step in hopes of curing this pain. I have a neighbor who had MVD and has been pain free for 15 years. I have corresponded with patients who my neurosurgeon operated on that had a good result. There is always a chance that I will not get resolution. But since I am beginning to have breakthrough pain again and do not want to keep adding drug after drug, I am willing to take this chance and try to cure the cause and not just treat the symptoms. I know not everyone feels that way about surgery. But I feel I am a good candidate. I am just trying to be brave as it is not a fun thing to think about going through.
Best wishes to you on your TN journey. This is definitely not an easy thing to deal with or live with.
Yes its the PSR ( Perutneous Stereotactic Radifrequecy Rhhizotomy) my tumor is on the the brainsteam on 3-5-7 cranial nerves...that is why i can't do the MVD...thanks for any info....
Richard A. "Red" Lawhern said:
If by PRS surgery you mean a percutaneous radio surgery or RF Rhizotomy, the medical outcomes of the procedure are actually pretty good, particularly with typical TN. For classic TN, the initial success rates exceed 90-%, with about 70% probability of pain-free outcome for at least seven years. Given that you are dealing with a tumor, I would have to qualify this input somewhat -- not knowing where the tumor is, I can't say one way or another whether it would influence the likely outcomes of a rhizotomy. That's a judgment for a neurosurgeon who does rhizotomies, in any event.
Regards and best,
Red