Fear Over MVD

General General TN & GPN (Old Site)
1

I’m very scared to have my MVD next month. Being 16, having ophthalmic TN, and not seeing it on an MRI freaks me out! I do not regret my decision to have the surgery; I’d take any opportunity to get rid of this pain - I’m just having apprehensions.

What if they don’t find anything? Will I have to start the long process of getting diagnosed all over again? Will there be complications? How long will it take to recover?

These things are just weighing on my mind. I’m sure other people have felt like this.

2

Hi again,

Many times there is no visible compression seen on the MRI with TN. It is also used to rule out tumours or MS. Surgery is always a big deal and it is normal to be nervous. My MVD was not successful, not what you want to hear before your MVD, but it is succesful in 80% of cases. Those are great odds.

If you would not do the surgery you would always wonder if that was the golden ticket and you had not taken it. You are informing yourself of facts but please still remember that each person is unique and has their own facts. Complications may arise and there is no way of knowing prior. At this point you need to trust your doctors and surgeon to do whats best for you.

But regardless on whether the surgey is successful or not your diagnosis is still real. There is no need to look for another diagnosis just perhaps another treatment. But let’s not go there just yet. Let’s believe the surgery will be successful and you will be able to re-enter your life.

Questions are good. Keep them coming.

3

Hi LadyFace! I am 16 days post MVD and just had my stitches taken out today!!!! This is the first day I feel like can even really look at the computer and talk to people online. My surgery was on September 30, 2014.

I was scared out of my mind, because they could not see anything on my MRI. I had the same exact fears you are having, but the thought that this TN pain is progressive and I am still young (not as young as you, I am 38) but if i felt the way I am, what will I be like at 50 or 60, if I don't at least take the chance and see what happens? And guess what? There was an artery COMPLETELY laying across my nerve, I had 4 teflon cushions inserted and there was a blood vessel entwined at the base of the nerve that had to be untangled and quarterized. So they couldnt see it on the MRI, but it was there, and it was bad. Recovery is different for everyone. The first two weeks are really rough. Listen to your body, you will know what you can and can not do, and you will know if something is not right. The biggest thing I am learning is that you have to be your own health advocate, and in your case since you are so young, make sure your family is as well. If you are pain, make sure you have enough medication, if you have questions, demand answers, do not let them blow you off, do not let them act like your fears are insignificant. I kind of felt like in the world of neurosurgeons, compared to all of the things they see and the larger surgeries that they do, that this is somewhat minor to them, and to us it is the biggest deal of our lives, you must constantly remind them of that, nicely of course, but make sure that you get the answers that you need and get the medication that you need.

I won't lie and say that it is easy, but now that I am into week 3, and the stitches came out this morning, and I am off of the heavy duty pain killers, it is getting a bit better. I have one complication and it is extremely bad headaches, and they are treating them with steroids. They also think I am having a reaction to the bone cement that they use, and that is adding to the pressure. Again, its a bad throbbing headache, but I just called them twice about it, got the mediciation, and compared to the TN pain that I have been in for years, I can deal with it. Everyone's recovery is different so it hard to say, but after all my research, and now having been through it, I can say to you hang in there and GO FOR IT!!

I was given a sheet of "what to expect" from my surgeon that included a section on emotional adjustment. This applied to me. I found myself very sad and felt lonely, and cried alot. I still don't understand what that is all about because I was surrounded by my loving husband, my friends and family,definitely not alone. But make sure your friends and family understand that it is a possibility, just in case it happens, and you have them to talk to and cry to, and you'll get through that as well. That only lasted a few days.

Please "friend" me on here - and feel free to write to me personally and I will share with you whatever I can, since I am still going through it. Please don't back out of your decision, because I think that they will find the problem once they get in there, just like they did with me.

I will keep you in my prayers. Stay strong, YOU GOT THIS!!!

Megan

4


Nutmeg1576 said:

Hi LadyFace! I am 16 days post MVD and just had my stitches taken out today!!!! This is the first day I feel like can even really look at the computer and talk to people online. My surgery was on September 30, 2014.

I was scared out of my mind, because they could not see anything on my MRI. I had the same exact fears you are having, but the thought that this TN pain is progressive and I am still young (not as young as you, I am 38) but if i felt the way I am, what will I be like at 50 or 60, if I don't at least take the chance and see what happens? And guess what? There was an artery COMPLETELY laying across my nerve, I had 4 teflon cushions inserted and there was a blood vessel entwined at the base of the nerve that had to be untangled and quarterized. So they couldnt see it on the MRI, but it was there, and it was bad. Recovery is different for everyone. The first two weeks are really rough. Listen to your body, you will know what you can and can not do, and you will know if something is not right. The biggest thing I am learning is that you have to be your own health advocate, and in your case since you are so young, make sure your family is as well. If you are pain, make sure you have enough medication, if you have questions, demand answers, do not let them blow you off, do not let them act like your fears are insignificant. I kind of felt like in the world of neurosurgeons, compared to all of the things they see and the larger surgeries that they do, that this is somewhat minor to them, and to us it is the biggest deal of our lives, you must constantly remind them of that, nicely of course, but make sure that you get the answers that you need and get the medication that you need.

I won't lie and say that it is easy, but now that I am into week 3, and the stitches came out this morning, and I am off of the heavy duty pain killers, it is getting a bit better. I have one complication and it is extremely bad headaches, and they are treating them with steroids. They also think I am having a reaction to the bone cement that they use, and that is adding to the pressure. Again, its a bad throbbing headache, but I just called them twice about it, got the mediciation, and compared to the TN pain that I have been in for years, I can deal with it. Everyone's recovery is different so it hard to say, but after all my research, and now having been through it, I can say to you hang in there and GO FOR IT!!

I was given a sheet of "what to expect" from my surgeon that included a section on emotional adjustment. This applied to me. I found myself very sad and felt lonely, and cried alot. I still don't understand what that is all about because I was surrounded by my loving husband, my friends and family,definitely not alone. But make sure your friends and family understand that it is a possibility, just in case it happens, and you have them to talk to and cry to, and you'll get through that as well. That only lasted a few days.

Please "friend" me on here - and feel free to write to me personally and I will share with you whatever I can, since I am still going through it. Please don't back out of your decision, because I think that they will find the problem once they get in there, just like they did with me.

I will keep you in my prayers. Stay strong, YOU GOT THIS!!!

Megan

Thanks so much! This meant a lot. I can’t wait to finish my grade 12 year and be done with this for awhile.! I know exactly what you mean by needing to educate yourself and demand answers! This is my life and I need to take control; the pain is real (and I know that), it would just be nice to have proof before I take this big leap!

Thanks again :slight_smile:

5

Hi Lady Face



I am right now in the same boat. I am scheduled for MVD surgery this Friday. I met with the surgeon today and they actually scheduled it that quickly.



I am feeling all the same things you are. You are so young! So it must be even more scary for you. I am 41 years old and I feel too young for this stuff!



I am excited on one hand that this may actually work and I will be pain free but I am also worried that something will go wrong or they will get in there and say…hey we didn’t find anything, you are back at square one…same as you’re feeling.



But like Patty said, we won’t know until we do it. My fiancé said to me…look how tough you’ve been dealing with this pain this long, the surgery pain might be a piece of cake. I was thinking about that and that’s what I am going to hold on to :slight_smile:



It would be great to get some feedback from others on this, people who have had the surgery (thank you Nutmeg) maybe it will ease our brains before our actual brain surgery.



I am going to keep you in my thoughts honey and I will get on here ASAP and let you know how mine went, seems I am going before you do



In the meantime, talk to people you feel you can vent to and remember, you are fierce girl…look at everything you’ve already gone through.

6

I am 11 mo post surgery. I did have a major compression causing my pain and it was visible on every one of my MRIs. Aside of the fact I had a compression the surgery of course is not 100% for anyone. That being said, there was no hesitation for me in getting the surgery. The thought that there was a chance that this could leave me pain free left me running for the operating table. just keep in mind of the possibility of this changing the course of your life for the better! Leave all hesitation behind and don’t become your own worst enemy. You can do this and you are stronger than you thought you could ever be!

7


dawndew said:
Hi Lady Face

I am right now in the same boat. I am scheduled for MVD surgery this Friday. I met with the surgeon today and they actually scheduled it that quickly.

I am feeling all the same things you are. You are so young! So it must be even more scary for you. I am 41 years old and I feel too young for this stuff!

I am excited on one hand that this may actually work and I will be pain free but I am also worried that something will go wrong or they will get in there and say...hey we didn't find anything, you are back at square one...same as you're feeling.

But like Patty said, we won't know until we do it. My fiancé said to me...look how tough you've been dealing with this pain this long, the surgery pain might be a piece of cake. I was thinking about that and that's what I am going to hold on to :)

It would be great to get some feedback from others on this, people who have had the surgery (thank you Nutmeg) maybe it will ease our brains before our actual brain surgery.

I am going to keep you in my thoughts honey and I will get on here ASAP and let you know how mine went, seems I am going before you do

In the meantime, talk to people you feel you can vent to and remember, you are fierce girl...look at everything you've already gone through.

This disease is sure tricky! I look forward to hearing all about your experience! Good luck with your surgery; hope all goes well!

Thank you so much,

LadyFace

8


Anne said:
I am 11 mo post surgery. I did have a major compression causing my pain and it was visible on every one of my MRIs. Aside of the fact I had a compression the surgery of course is not 100% for anyone. That being said, there was no hesitation for me in getting the surgery. The thought that there was a chance that this could leave me pain free left me running for the operating table. just keep in mind of the possibility of this changing the course of your life for the better! Leave all hesitation behind and don't become your own worst enemy. You can do this and you are stronger than you thought you could ever be!

I’m grasping at straws now; this surgery is the logical next step! Hope your surgery went well.

Thanks for the input,

LadyFace

9


Patty said:
Hi again,

Many times there is no visible compression seen on the MRI with TN. It is also used to rule out tumours or MS. Surgery is always a big deal and it is normal to be nervous. My MVD was not successful, not what you want to hear before your MVD, but it is succesful in 80% of cases. Those are great odds.

If you would not do the surgery you would always wonder if that was the golden ticket and you had not taken it. You are informing yourself of facts but please still remember that each person is unique and has their own facts. Complications may arise and there is no way of knowing prior. At this point you need to trust your doctors and surgeon to do whats best for you.

But regardless on whether the surgey is successful or not your diagnosis is still real. There is no need to look for another diagnosis just perhaps another treatment. But let's not go there just yet. Let's believe the surgery will be successful and you will be able to re-enter your life.

Questions are good. Keep them coming.

This made me feel 1000x better! Those words were like emotional medicine!

Thank You Kindly,

LadyFace

10

Well said!!



Anne said:
I am 11 mo post surgery. I did have a major compression causing my pain and it was visible on every one of my MRIs. Aside of the fact I had a compression the surgery of course is not 100% for anyone. That being said, there was no hesitation for me in getting the surgery. The thought that there was a chance that this could leave me pain free left me running for the operating table. just keep in mind of the possibility of this changing the course of your life for the better! Leave all hesitation behind and don't become your own worst enemy. You can do this and you are stronger than you thought you could ever be!
11

I had no visible compressions

Had a top doc for MVD

three years, no pain, no meds

The best time to do MVD, is the window of one to five years upon onset of pain!

12

That’s good to hear, Kc Dancer Kc! I’m looking forward to possibly being pain free without medication! That would be wonderful!

13

I was in the hospital for 2 nights

In bed for three weeks

Is your surgeon a major MVD surgeon?

Read success stories tab above!

14

Hi LadyFace

As I promised I wanted to get here to tell you about my surgery. It was on Friday. I am still in the hospital, I think I am going home tomorrow.

So 2 things I want to tell you right now. I will send you some more in depth and detailed messages later on when I am better able.

After surgery and so far…NO TN PAIN!!!
There is different pain because of the surgery obviously. But no electric shocks or teeth so far! It’s amazing

Of course I guess I some strange crap going on in there. Instead of my nerve being compressed by a vein or artery, it was being compressed by itself. My nerve was actually split 70% to 30%. The smaller side was pulsating against the bigger part. I don’t know all the details of that yet either.

I hope this eases your mind some. It is no picnic afterwords in terms of pain. But it’s different pain and it can actually be managed by meds.

I will check in more with you later. :slight_smile: I hope this helped

15

I had an MVD last Weds, Oct. 15, by Dr. Sekula at UPMC. I am 47, and the only other surgery I have ever had was a tonsilectomy when I was 4. After 8 years with TN, it had become clear that a MVD was the best next step. I am going to write a post about all of the things I experienced and learned, but I just wanted to chime in now to let you know that I am actually surprised by how well I feel. The surgery-related pain is pretty much controlled by the meds, which are only for mild-medium pain. There were no complications... my hearing is fine, no CSF leak, no numbness. I am weaning off meds and on about half of what I was taking. I have had some face pain, but it is quite dull compared to what I had. I understand this is to be expected as my nerve heals from being decompressed for so long. My MRI only showed one small blood vessel compressing the nerve. Dr. Sekula said the MRI was in 3D and would show everything, but when they actually got in there, they found multiple compressions at the base of the nerve.

If you truly believe the MVD is the best treatment for you, let go of the fear of what you cannot control and find strength in your faith, family and friends. You are young and healthy. That will make a huge difference in your recovery. As will a positive mindset. I'll try to do my complete story within the next few days. While the surgery itself went well, there were lots of things surrounding it that didn't really go so well.... they had a hard time finding a good vein for the IV. I was totally wired from the anesthesia. Post-op pain meds also jacked me up. I didn't sleep for 33 hours after coming out of surgery. But you know what, it just doesn't matter. I'm alive with no complications and I'm thrilled to have a chance at a pain-free life. I hope that you will have the same outcome. And in the meantime, just take a deep breath and smile. Be thankful that this option is available to treat the debilitating pain. My prayers are with you. I look forward to hearing that, after your surgery, you are as happy as I am right now.

16

Dawndew,

I’m so glad to hear you’re feeling better! I’ve never heard of it being caused by the nerve itself - that’s strange! Definitely let me know how your healing continues!

17


Juliet said:

I had an MVD last Weds, Oct. 15, by Dr. Sekula at UPMC. I am 47, and the only other surgery I have ever had was a tonsilectomy when I was 4. After 8 years with TN, it had become clear that a MVD was the best next step. I am going to write a post about all of the things I experienced and learned, but I just wanted to chime in now to let you know that I am actually surprised by how well I feel. The surgery-related pain is pretty much controlled by the meds, which are only for mild-medium pain. There were no complications... my hearing is fine, no CSF leak, no numbness. I am weaning off meds and on about half of what I was taking. I have had some face pain, but it is quite dull compared to what I had. I understand this is to be expected as my nerve heals from being decompressed for so long. My MRI only showed one small blood vessel compressing the nerve. Dr. Sekula said the MRI was in 3D and would show everything, but when they actually got in there, they found multiple compressions at the base of the nerve.

If you truly believe the MVD is the best treatment for you, let go of the fear of what you cannot control and find strength in your faith, family and friends. You are young and healthy. That will make a huge difference in your recovery. As will a positive mindset. I'll try to do my complete story within the next few days. While the surgery itself went well, there were lots of things surrounding it that didn't really go so well.... they had a hard time finding a good vein for the IV. I was totally wired from the anesthesia. Post-op pain meds also jacked me up. I didn't sleep for 33 hours after coming out of surgery. But you know what, it just doesn't matter. I'm alive with no complications and I'm thrilled to have a chance at a pain-free life. I hope that you will have the same outcome. And in the meantime, just take a deep breath and smile. Be thankful that this option is available to treat the debilitating pain. My prayers are with you. I look forward to hearing that, after your surgery, you are as happy as I am right now.

That is wonderful to hear! I’m confident that I can do this and deal with whatever happens next! I’m wishing you all the best as you continue to heal! Thanks for your input :slight_smile:

18


Kc Dancer Kc said:
I was in the hospital for 2 nights

In bed for three weeks

Is your surgeon a major MVD surgeon?

Read success stories tab above!

I have two neurosurgeons! One that is familiar with working on children and one that is familiar with the MVD. Their names are Clare Gallagher and Garnette Sutherland; they are based out of Calgary, AB.

19

Thank you all for the great words of encouragement to Nutmeg!!!. By encouraging her you have greatly encouraged me!!

I am schedule for MVD on November 14 and all the fears and all the anticipation that you all have talked and touched

on have giving me more strength to move forward. Every time I think about it my heart sinks but part of me knows to do it

and get of the meds!! I thank you all for your great encouragement I pray for Nutmeg for her peace and strength!!!

Peace

Sandi

Sundibell

20

Hey honey I am home from the hospital today. Each day I feel better. Still some pain but controlled with meds. Still no TN pain!

I know you know that I was scared to death to do this surgery BUT if things keep going this well, I would do it all over again.

Sleeping is a bit difficult and I haven’t slept much and it’s difficult to get comfortable sometimes. But each day, I am feeling at least a little better.

I am going to keep you updated!! Then, we will get you through your surgery :slight_smile: I will check in again in a couple of days



LadyFace said:
Dawndew,

I'm so glad to hear you're feeling better! I've never heard of it being caused by the nerve itself - that's strange! Definitely let me know how your healing continues!