I am back as I promised you all.
I had my MVD surgery at the University of Washington medical center this last Friday the 13 th, and my neurosurgeon Dr. Ferriera, and 7 member team,performed an incredible and difficult surgery.
Apparently when they got inside, there were various vessels that had wrapped around and had distorted the Nerve severely.
The surgery lasted 9 hrs and on hour 5 the surgeon sat my wife down and said, it had been the most extensive surgery he and his team had ever encountered.
He said there was a point they almost decided that that was all they could do as there were several vessels that would have to clipped and rerouted.
As they were ready to exit ; the problematic vessels fell away by themselves as if a higher intervention took over. I know the Big guy upstairs put on his rubber gloves.
With this obstacle out of the way, They then were able to finalize re arranging, and inserting appropriate pledgets thus confirming that the MVD procedure was a Compete Success.
In recovery, I have no pain whatsoever on the right side, although some residual numbness.
I am able to give my wife a full on smooch,brush my teeth,chew with both sides of my jaw.
I do have have to wear a patch because I am having double vision. I am told that when they go in, sometimes the optic nerve will be affected and some swelling will occur. This should go away as things settle down.
I say at this early stage, read all,you can about your options and those that are counterproductive with MVD. By finding the very best surgeon that has extensive knowledge of this surgical procedure and can personalize your particular issue with appropriate testing, diagnostics, that you will do fine.
I know this option of MVD that I decided on, was aggressive,but for me everything shown that there was a root issue that needed to be eliminated. I wanted the best outcome and though the most evasive, I also wanted the best “long term” pain relief.
I do not want this debilitating pain to ever return again. As things move forward I promise to keep,everyone updated on how I am doing.
As I had earlier posted in this forum, it is seldom I read of a successful operation that doesn’t show a long term cure for this horrible disease.
I was told by the moderator that the successful ones many times leave the forum because they are now on the mend, and find no reason to share a positive story with those still waiting for direction or suggestions. Initially the stories I read sounded so gloomy with re turning pain, worse pain after surgery, complications, etc. I feel so bad for those that didn’t find relief.
I think that it is good to share with each of us the good outcomes, the ones that have worked long term. I will promise to keep each of you posted on my 3-6-9 and year period progress.
I am praying that the past pain will continue to stay away and that this minor double vision issue will resolve shortly.
Be strong and do your research, hugs to all , BB
Thank you and God bless pain free days for you
Hallelujah! Big Thanks to the Man Upstairs!
Good to hear your story. I had a mvd on 4th, but still in doubt if it really worked, long post op to go. I have being thinking the same as you, sucess needs to be shown, otherwise, those so stressed will think, like i did many times, there’s no relief. Hope evething goes as you wish, and this horrible thing never shows up again.
Wonderful, so happy for you!!
I'm so happy for your successful surgery, BB! Yes, please stay connected. It is a shame that there aren't more out there shouting out the good, successful stories. I'll be at year 3 pain-free after my successful MVD on 10/30/13 by Dr. Ken Casey. I'm enjoying life but will never forget. I decided that while everything was still close in my memory that I would write my detailed story for all. I am committed to update it every 6 months and stay with it many, many years. Here is my story for you and all to read. The full story is posted on this forum but I've since updated it (still all is good).
My story . . . Trigeminal Neuralgia: How I Survived the Worst Pain Ever
mybell said:
I'm so happy for your successful surgery, BB! Yes, please stay connected. It is a shame that there aren't more out there shouting out the good, successful stories. I'll be at year 3 pain-free after my successful MVD on 10/30/13 by Dr. Ken Casey. I'm enjoying life but will never forget. I decided that while everything was still close in my memory that I would write my detailed story for all. I am committed to update it every 6 months and stay with it many, many years. Here is my story for you and all to read. The full story is posted on this forum but I've since updated it (still all is good).
My story . . . Trigeminal Neuralgia: How I Survived the Worst Pain Ever
Awesome news, congrats!
MyBell, thank you for your beautiful thoughts and to all those that have shared on my recent outcome. I am so happy that you are doing so well and that that dreaded misery has left your body. Nice scar recovery too .Ha!
Your article was wonderfully written from both an educational overview, but also from a personal story of hope and positive points that have indeed come about with a successful MVD procedure.
It’s early on for me, and the only hurdle I am dealing with, is the double vision which is a bit disconcerting. I am a relaxed and positive individual that have also done my homework in understanding some of the symptoms related to the MVD procedure. The double vision, I am certain will resolve with rest, and as the swelling reduces, the tracking of the operated side ( R ) will work as before. The poor optic nerve That was in the vacinity, was not a happy camper when those silver instruments were moving things around.
Thanks for being there for those that too have not made a decision, or are confused,disheartened.
There is a need for those of us to stay with this group when things go so wonderfully. By leaving this forum when things have been positive, it seems there isn’t a fair overview of outcomes people can learn from. Instead of positive hope, It tends to be real drag.
Like this forum, there are indeed great resources available that can truly help. I too have the book “fighting back” which is a great tool for understanding this medical issue. Highly recommended.
The better educated one is about this disease, the better prepared they will be, as to what road they will take. Blessings to you, BB
I am so happy for you. Thanks for sharing ans re-sharing. it is so helpful.
Robin
Robin, thank for your kind thoughts…
As with a very successful MVD procedure, I too have some issues that from what I have been told are very normal. The double vision that has been present along with numbness on my right surgical side is disconcerting.
My surgeon has indicated that when ever one goes into the brain, many times there can be areas that are affected due to the confined area they work. In my case the optic nerve has been inflamed creating one eye to not track as it should.
I am wearing a patch on my left eye to allow me to see one image clearly on the operated side eye.
Without the patch, my right eye angles nasally and thus creating double vision.
As many post op patients have noted in this forum of similar issues, the consensus is that, as the swelling diminishes, the eye will resolve as it it did pre op, and back to normal. 2-4 weeks is common.
I am only at 10 days post op, and as always optimistic. I have too much yard work to do and I don’t want to see this work as a "Double Load Ha!!"
Take care, BB
Thank you and please do keep us posted…
It can take up to a year for everything to settle in -- i am in remission from MVD - Dr. Casey since 2011
: )
Did you have pain-free days and then days where it seemed the surgery failed? I am 3 months out, which were great. Now, all the sensations are back. Do you think it's still settling in?
Kc Dancer Kc said:
It can take up to a year for everything to settle in -- i am in remission from MVD - Dr. Casey since 2011
: )
Hello Kc Dancer, a year is a fair amount of time. Had you also had double vision as well.?
Kc Dancer Kc said:
It can take up to a year for everything to settle in -- i am in remission from MVD - Dr. Casey since 2011
: )
Mary Beth, and KC dancer,
KC dancer, you had mentioned you were in remission from MVD. I don’t understand what you meant. Do you mean All your senses have returned to normal, or any Post-Op symptoms like Vision issues, numbness etc, have disappeared, and you are back to where you used to be (prior to the TN diagnoses.??) or … as mentioned, you are in remission from MVD. ?? Do you mean your full blown pain is back even after the one year surgery date ?
Mary Beth, I have not noticed any changes to my symptoms, as I am only 22 days post op MVD. I am always saddened when I hear TN symptoms returning after this major surgery.
Mary Beth, do you mean post op you have had good days and days when you thought the Surgery failed. Again I am a newby and if after 3 months you are having TN issues returning, I would definitely talk with your surgeon and maybe an updated MRI could shed some light on what’s going on.
His call on what diagnostics could possibly help determine why your having a resurgence of Pain. As promised early on, I will keep you all updated how mine proceeds…
I am pretty confident that due to the thoroughness of this particular surgery, I should be pain free for many years to come. They popped 7 Placets along some vessels that were compressing the nerve.
A good prognosis has some of us with post op issues that for what ever reason were effected through this intense procedure. The Double Vision I am dealing with was brought on by a very tight area that the surgeon had to work within. The 6th cranial nerve was compromised to a degree.
Since this one nerve affects the movement of the muscle attachment of the eye which regulates the ability of the eye to look straight ahead, the swelling has caused this particular eye to diviate nasally.,( thus the double vision)
As mentioned, I am only 22 days post op MVD and my face numbness right side continues to have little if any sensation and the inner right gum line and potion of the tongue also is numb.
I am told these symptoms are quite common and as soon as the swelling is resolved these symptoms will persist.
2-3 months is my expected time line where I will be back to normal.
I am patient and know the body is strong and resilient. Just got make sure I get my rest which might include cat naps during the afternoon, and make sure I eat good nourishing foods.
woops, had a nice bowl of ice cream last night.
I have been pain free since the 13th and until the swelling decreases, I guess I won’t know if I will have any pain. I am hoping not.
My surgeon was very confident that with the 7 Placets he placed, I should be pain free for many years to come.
. The very best to all, BB
I
Mary Beth Thorngren said:
Did you have pain-free days and then days where it seemed the surgery failed? I am 3 months out, which were great. Now, all the sensations are back. Do you think it’s still settling in?
Kc Dancer Kc said:It can take up to a year for everything to settle in – i am in remission from MVD - Dr. Casey since 2011
: )
I had 3 good months without pain, tingling, stabs,or burning. It all returned last week. My NS has me back on Gabapentin. It's been 2 days and I think it's working. He said I weened off the meds too soon. I still have a little numbness in my head from surgery but the pain from the clamp was the worst. It finally went away.
BB said:
Mary Beth, and KC dancer,
KC dancer, you had mentioned you were in remission from MVD. I don't understand what you meant. Do you mean All your senses have returned to normal, or any Post-Op symptoms like Vision issues, numbness etc, have disappeared, and you are back to where you used to be (prior to the TN diagnoses.??) or ... as mentioned, you are in remission from MVD. ?? Do you mean your full blown pain is back even after the one year surgery date ?
Mary Beth, I have not noticed any changes to my symptoms, as I am only 22 days post op MVD. I am always saddened when I hear TN symptoms returning after this major surgery.
Mary Beth, do you mean post op you have had good days and days when you thought the Surgery failed. Again I am a newby and if after 3 months you are having TN issues returning, I would definitely talk with your surgeon and maybe an updated MRI could shed some light on what's going on.
His call on what diagnostics could possibly help determine why your having a resurgence of Pain. As promised early on, I will keep you all updated how mine proceeds...
I am pretty confident that due to the thoroughness of this particular surgery, I should be pain free for many years to come. They popped 7 Placets along some vessels that were compressing the nerve.
A good prognosis has some of us with post op issues that for what ever reason were effected through this intense procedure. The Double Vision I am dealing with was brought on by a very tight area that the surgeon had to work within. The 6th cranial nerve was compromised to a degree.
Since this one nerve affects the movement of the muscle attachment of the eye which regulates the ability of the eye to look straight ahead, the swelling has caused this particular eye to diviate nasally.,( thus the double vision)
As mentioned, I am only 22 days post op MVD and my face numbness right side continues to have little if any sensation and the inner right gum line and potion of the tongue also is numb.
I am told these symptoms are quite common and as soon as the swelling is resolved these symptoms will persist.
2-3 months is my expected time line where I will be back to normal.
I am patient and know the body is strong and resilient. Just got make sure I get my rest which might include cat naps during the afternoon, and make sure I eat good nourishing foods.
woops, had a nice bowl of ice cream last night. I have been pain free since the 13th and until the swelling decreases, I guess I won't know if I will have any pain. I am hoping not.
My surgeon was very confident that with the 7 Placets he placed, I should be pain free for many years to come.
. The very best to all, BB
I Mary Beth Thorngren said:
Did you have pain-free days and then days where it seemed the surgery failed? I am 3 months out, which were great. Now, all the sensations are back. Do you think it's still settling in?
Kc Dancer Kc said:It can take up to a year for everything to settle in -- i am in remission from MVD - Dr. Casey since 2011
: )
br/>. Hi Mary Beth, I now understand and am sorry about the need to get back on the Gabapentine again.
Have you consulted at all with your surgeon.? I do know for a fact that the neurologists tend to deal with symptoms through Medication and a surgeon will have a different Voice regards to his procedure and what he was able to do or not do, when the MVD procedure was performed.
I took two weeks to wean off the Gabapentine and was told at the outset of the surgery, to eliminate one pill out of my daily prescribed tally (every other day.) at week two, I was done with the pills. Yes I did have some withdrawal symptoms like night sweats and headaches. These too should disappear a few weeks from now.
As I had noted, I too have numbness on the right side of face still and double vision. These side effects I can deal with but if my pain returned, I would be so bummed.
Again talk with your surgeon and let him know what the neurologist has recommended. There are diagnostics that can be done to see how that nerve is doing. I am hoping your pain will go away without the need of the meds, once and for all… My best, BB
Mary Beth Thorngren said:
I had 3 good months without pain, tingling, stabs,or burning. It all returned last week. My NS has me back on Gabapentin. It's been 2 days and I think it's working. He said I weened off the meds too soon. I still have a little numbness in my head from surgery but the pain from the clamp was the worst. It finally went away.
BB said:Mary Beth, and KC dancer,
KC dancer, you had mentioned you were in remission from MVD. I don't understand what you meant. Do you mean All your senses have returned to normal, or any Post-Op symptoms like Vision issues, numbness etc, have disappeared, and you are back to where you used to be (prior to the TN diagnoses.??) or ... as mentioned, you are in remission from MVD. ?? Do you mean your full blown pain is back even after the one year surgery date ?
Mary Beth, I have not noticed any changes to my symptoms, as I am only 22 days post op MVD. I am always saddened when I hear TN symptoms returning after this major surgery.
Mary Beth, do you mean post op you have had good days and days when you thought the Surgery failed. Again I am a newby and if after 3 months you are having TN issues returning, I would definitely talk with your surgeon and maybe an updated MRI could shed some light on what's going on.
His call on what diagnostics could possibly help determine why your having a resurgence of Pain. As promised early on, I will keep you all updated how mine proceeds...
I am pretty confident that due to the thoroughness of this particular surgery, I should be pain free for many years to come. They popped 7 Placets along some vessels that were compressing the nerve.
A good prognosis has some of us with post op issues that for what ever reason were effected through this intense procedure. The Double Vision I am dealing with was brought on by a very tight area that the surgeon had to work within. The 6th cranial nerve was compromised to a degree.
Since this one nerve affects the movement of the muscle attachment of the eye which regulates the ability of the eye to look straight ahead, the swelling has caused this particular eye to diviate nasally.,( thus the double vision)
As mentioned, I am only 22 days post op MVD and my face numbness right side continues to have little if any sensation and the inner right gum line and potion of the tongue also is numb.
I am told these symptoms are quite common and as soon as the swelling is resolved these symptoms will persist.
2-3 months is my expected time line where I will be back to normal.
I am patient and know the body is strong and resilient. Just got make sure I get my rest which might include cat naps during the afternoon, and make sure I eat good nourishing foods.
woops, had a nice bowl of ice cream last night. I have been pain free since the 13th and until the swelling decreases, I guess I won't know if I will have any pain. I am hoping not.
My surgeon was very confident that with the 7 Placets he placed, I should be pain free for many years to come.
. The very best to all, BB
I Mary Beth Thorngren said:
Did you have pain-free days and then days where it seemed the surgery failed? I am 3 months out, which were great. Now, all the sensations are back. Do you think it's still settling in?
Kc Dancer Kc said:It can take up to a year for everything to settle in -- i am in remission from MVD - Dr. Casey since 2011
: )
OMG I am so happy for you. I am schedule for MVD surgery on June 15 as my facial pain is becoming unbearable and I am spending time in the ER a lot. I am praying for a successful surgery and many years of relief from a disease that will never be gone for good.
Best of luck to you
PS I will be back to talk about my successful surgery.
RC, the very best wishes to you for a successful procedure. The MVD surgery if tackled with success, can indeed provide many years of pain free relief. As with mine,although quite complex, the doctor pretty much guaranteed I should not ever have to deal wth the pain again. Stay positive, healthy and make sure your Doctor is the best you have available with this specialized procedure. His history with successful surgeries is a good sign hell do just fine. Keep all of us in touch how you do,
Good thoughts and blessings to your way,BB