Has anyone had pain after MVD, and if so, for how long

Symptoms & Treatments Surgery
1

Hello to all,

I placed this as a blog and on the forum, also. Sorry I am showing up everywhere. It has been over a year since I last visited this site. Just too much pain to even work at the computer. So much pain for so long. It was finally determined I had an 80% chance of cure with MVD. I jumped at the chance!

After surgery, the neurosurgeon told my husband he was 99% sure the problem was eliminated. He has been doing this surgery for nearly 20 years. He said the blood vessel on my trigeinal nerve was the largest he has ever seen. It was in constant contact with the nerve, probably why my pain was continuous. It had rubbed a crease all along the nerve. Unfortunately, when I woke up the pain was still there.

I saw the MRI's and it was clear, even to my eyes, the vessel was all tangled with the nerve. The surgeon has a very good reputation, and I have cofidence in him, his diagnosis, and his competence.

I saw his PA last friday and she took the sutures out, and I see the doctor on Friday. He had previously told me 90% of his patient's are pain free post-op. about 10% take 3-5 to 7 days. His PA said maybe 3 months. He said he will show us the video of surgery when we see him.

I am just desperate to be out of pain. Everyday, I think this is the last day I can take it, but then somehow I do, and I have to do the whole thing all over again the next day. Now I'm making myself cry, doesn't help, millions of tears, sobs, pleading, begging, none of it helps. My familiy is great, but they can't help. I pray for God to give me strength, but I just feel weak and tired.

Today is my 16th post op day. Has anyone out there had the surgery and did not have immediate relief from the pain. If so, how long did it take. It is just so hard...all the pain, never stops. Please let me know.

Sincerely,

Janice W.

2

Hi Janice
I had the MVD and woke up with no nerve pain and haven’t felt any since the surgery. I know two people who have had the MVD and still had pain after surgery. Over time their pain went away. My surgeon warned me that I could have nerve pain after the surgery until the nerve healed. Stay brave and give it time.
Connie

3

Hi, I had MVD almost 4 months ago and I still have pain. It is less intense than before. Most of the time I can control it with Alieve and Tylenol but no longer take any prescription medication. I have no gone a single day without some type of pain medication, and I get very frustrated because I want it to stop. I still hope that one day it will stop and I just need more healing time. I have read other say it can take up to a year and that the longer you suffered the longer it take to go away. I hope you have felt some kind of difference in your pain. In the first 2 month I sometimes had doubts that it had work at all and then I had to remind myself that I did have a good day the day or two before. I called my surgeon to tell him when i had a particularly bad week and he put me on a steroid treatment for 6 days. That did wonders! I guess I was having problems with swelling after my treatment my scar, which had previously been a lump, whetcompletely flat against my head. I also became much more energetic, but the night before I called him I was crying in pain and frustration. Ever since the intensity level has drop to manageable. But like i said i still have pain more of the constant type, i don’t have any of the stabbing unbearable pain anymore. i just keep my Alieve and tylenol stocked up and hope one day i will not have to take them. I wish you well.

4

Janice-

I am glad you persisted in getting an answer to your question. It helps me too. I asked this question a week ago or so and did not get a response.

I am 6 weeks post op MVD. I had two vessels on my TN that were moved and cushioned with Teflon pad. When I woke from surgery I was almost pain free. After the surgery meds wore off some returned but much different from before. My diagnosis was complex and we knew that all of my pain would not be resolved from this surgery. But all of my symptoms have some TN component so we were hopeful for a 50% reduction in pain. At 6 weeks we have success at 50% on a bad day and almost 70% on a good day. As far as my face pain goes what I am left with is almost no random shooting pain. Shooting pain can be triggered by things like strong cold wind on face, but I can now tolerate a light breeze. I have some constant pain in my mastoid muscle causing jaw, and mouth swelling, But its half of what it used to be. I can eat more stuff, but can flare up that muscle by eating to much or talking to much. Anyway, this is an example of what my pain is now.

I have TN1 and TN2 on my left side and TN1 on my right. MVD on left side. I did my homework on this surgery and it was an educated decision to do the MVD the doctors all wanted to start with rhizotomy or balloon thing. I am glad I went the way I did. But with my education I learned from the book Striking Back and other publications that the end success results from an MVD vary. They think that the vary from different things like how long a person has had TN or how involved the vessels are with the nerve(such as entanglement). This makes sense to me. Considering how a body heals from injury.

But with that thought comes the fact that nerves can heal (and the myelin sheath can heal)(Human axon growth rates can reach 2 mm/day in small nerves and 5 mm/day in large nerves). Two things that regenerate is blood vessels and nerves. In a way anything is possible.

My surgeon and I have discussed "What's next?" We both agreed to give it six-nine months to see where I end up on the pain scale, he said that this is normal time frame. We discuss that right now its a matter of getting that myelin sheath the heal from 15 years of friction. May take a while I said. That's when he told me that nerves regenerate quickly and that it can heal. So now I am using nutrition to heal my self. http://csn.cancer.org/node/236350 this is a link that gives a great recipe for rebuilding the sheath. Talks about how toxins hurt nerves. I typed in rebuild the myelin sheath and got all kinds of ideas. My surgeon expected the random TN sharp shooters to diminish but not the TN2(atypical). We are know now that it also helped the TN2 and the verdict is not totally out yet because I am still dealing with swelling from surgery. I am still on my medications. I take baclofen for scalp pain, tramadol and ibuprofen for face pain & scalp pain, Ketamine 10% cream I rub on the bad spots, herbs and vitamins, CAM therapy and Gallixa(natural pain cream).

Healing together, Tree

5

Hi!!! I’m so glad u decided to have the MVD…its been a year since mi I started feeling strong about two mounths after the surgery…my nerve was tangle with a vein…I ‘m about 80% cure I feel pinches in my head and face in cold weather…but most days I’ m ok…hope u feel better soon…and let’s pray to God to give us strenght to keep on going with our lifes and enjoy our families…I’m 60 years …

6

Wow u really did ur homework I did’t have a chance to do that my surgery was fast I suffer about 2 mounths before cause had fainting spells …thanhs for the info…I like this site u learn so much…les keep in touch!!!
oops question??? do u have blisters in ur scalp…and they pinch never had them before…

a
Tree69 said:

Janice-

I am glad you persisted in getting an answer to your question. It helps me too. I asked this question a week ago or so and did not get a response.

I am 6 weeks post op MVD. I had two vessels on my TN that were moved and cushioned with Teflon pad. When I woke from surgery I was almost pain free. After the surgery meds wore off some returned but much different from before. My diagnosis was complex and we knew that all of my pain would not be resolved from this surgery. But all of my symptoms have some TN component so we were hopeful for a 50% reduction in pain. At 6 weeks we have success at 50% on a bad day and almost 70% on a good day. As far as my face pain goes what I am left with is almost no random shooting pain. Shooting pain can be triggered by things like strong cold wind on face, but I can now tolerate a light breeze. I have some constant pain in my mastoid muscle causing jaw, and mouth swelling, But its half of what it used to be. I can eat more stuff, but can flare up that muscle by eating to much or talking to much. Anyway, this is an example of what my pain is now.

I have TN1 and TN2 on my left side and TN1 on my right. MVD on left side. I did my homework on this surgery and it was an educated decision to do the MVD the doctors all wanted to start with rhizotomy or balloon thing. I am glad I went the way I did. But with my education I learned from the book Striking Back and other publications that the end success results from an MVD vary. They think that the vary from different things like how long a person has had TN or how involved the vessels are with the nerve(such as entanglement). This makes sense to me. Considering how a body heals from injury.

But with that thought comes the fact that nerves can heal (and the myelin sheath can heal)(Human axon growth rates can reach 2 mm/day in small nerves and 5 mm/day in large nerves). Two things that regenerate is blood vessels and nerves. In a way anything is possible.

My surgeon and I have discussed “What’s next?” We both agreed to give it six-nine months to see where I end up on the pain scale, he said that this is normal time frame. We discuss that right now its a matter of getting that myelin sheath the heal from 15 years of friction. May take a while I said. That’s when he told me that nerves regenerate quickly and that it can heal. So now I am using nutrition to heal my self. http://csn.cancer.org/node/236350 this is a link that gives a great recipe for rebuilding the sheath. Talks about how toxins hurt nerves. I typed in rebuild the myelin sheath and got all kinds of ideas. My surgeon expected the random TN sharp shooters to diminish but not the TN2(atypical). We are know now that it also helped the TN2 and the verdict is not totally out yet because I am still dealing with swelling from surgery. I am still on my medications. I take baclofen for scalp pain, tramadol and ibuprofen for face pain & scalp pain, Ketamine 10% cream I rub on the bad spots, herbs and vitamins, CAM therapy and Gallixa(natural pain cream).

Healing together, Tree

7

Thanks to you all for your responses!.

The information is great, and I think it is helping me to try to be more patient. I just so badly wanted to wake up post-op pain free (well, except the surgical pain), and when I wasn't I could feel myself just spirally down into a vortex of pain and depression.

I can actually feel a little spark of hope today....Thank you all for that!

Janice

8

I had the MVD surgery back in Feb.2008 very thing was gone when I woke up. Pain free for a year. Then almost to the day a year later in May 2009 all th pain came back, more then it was before. I have now been on the strongest medication and highest doseage a person can be on. I feel hopeless. I am 45 years old and have been told I will have to be on medication the rest of my life. I have gained 70lbs, can not spell like I did and can not work any more as well. I fall a lot and have had to have 5 other surgeries since then from just the falls alone. I wish you luck in what ever you do. I still would have done the surgery no matter what. To be pain free for one year was great and I enjoyed my life durning that time.

Victoria

9

Hi Tree,
You have TN like I have TN…left side 1&2 right side only TN1.
I head into my first mvd next week April 9th for my left side…
I too have done much research and feel really good about my decision to try mvd first.
The meds aren’t working for over 9 months now.
I don’t expect to be completely pain free after surgery, but I am sincerely hoping for a significant pain and med reduction!
Thanks for posting the link regarding myelin sheath repair diet etc…I’m going to check it out!
Please post updates on how you’re doing.
(( hugs )) Mimi

10

Wow, Mimi!

This is great news! I hope for you to have a great surgeon like mine. Your expectations are right in line. Especially if your meds are not working. I just stopped taking those crazy meds and found no difference in my pain levels, but at least mind is clear enough to manage those pain levels 7-10 most days. With the meds I sat on the couch crying in pain never able to get my brains around how to reduce the pain. That was when I really realized that I must try something different and probably drastic.

That's when I found topical stuff that works for me. One is Ketamine 10% and the other Gallixa. I used this stuff 3x pr day before now usually 1x pr day. Now I only need my Baclofen for my scalp pain 2-3x pr day. I only need my Xanax on occasion now. So my medication use has dropped dramatically.

My new dream is for the researchers to figure out how to fix our nerves with this stem cell project. Another deciding factor of MVD for me, I never want to deliberately damage the nerves if there is hope that one day science can fix them.

I am now 7 weeks post op. Not sure where I am because 2.5 weeks ago I got this really bad flu, with headache sinus cough body aches, the whole works. Its lingers on people say a month. So I got double sick!! in the middle of getting better. Then this whole week the weather has been stormy causing additional discomforts. But still maintain 50% on bad day and sometimes up to 70% better on a bad day.

However my right side is really upsetting me because my eye has been acting up and I have not had trouble with it like I do my left yet. This week its twitching and quivering just like the left side started out. Oooff! I am slowly feeling the right side get worse in the same way the left side did over the years. Also feel it when I yawn in my mastoid muscle. Not fair!

Healing together, Tree

11

Hi Janice,

2 weeks is not enough time to know how you will heal and eventually feel from the MVD. I had a lot of nasty side effects from surgery that did not go away for 6 months. You will have to give it time to see how much of your pain goes away.

I have TN2 type pain, not TN1. On different areas of the trigeminal nerve distribution -- nose, upper teeth, eye, brow, forehead. I woke up from my MVD in big time pain. The TN2 was the worst it ever had been. The surgeon never went over with me in detail what he found during surgery, though he gave me the operation report when I asked for it. Because I had complications, I underwent surgery again 2 weeks later and woke up in pretty bad pain again. I went from thinking as you, that I didn't know if I could take another day, but over a few months it went down to where it was before the operation. The surgeon told me that my pain could go away once I healed, but that did not happen. I am about where I was pre-MVD. I felt ashamed to tell him how much it still hurt because he so authoratatively said it should feel better with time. He told me that people with my TN2 symptoms have a successful surgery 70% of the time. I have read a lot of patient's reports on this site where the pain was gone immediately after MVD surgery. It sounds like you had every reason to undergo the MVD with the large vessel compressing the nerve. The one thing that disturbs me about your description is that the blood vessel created a crease in the nerve. Does the crease mean that the nerve is permanently damaged, or does it mean that it can now heal? Saying the problem is 99% eliminated could mean that the blood vessel can not damage the nerve any further, but what about the damage it did over the years? I hope that the surgeon clears up his statements in your return visit (I hate PA's, sorry, but my experience with them is that they can't answer any questions, everything is they have to ask the doctor, they are just there as a barrier to real medical care, they don't to a good job, sorry if that offends all the PA's out there but that is my experience. Usually they are in a rush, too busy, too tired, don't remember you.)

Don

12



Don said:

Hi Janice,

2 weeks is not enough time to know how you will heal and eventually feel from the MVD. I had a lot of nasty side effects from surgery that did not go away for 6 months. You will have to give it time to see how much of your pain goes away.

I have TN2 type pain, not TN1. On different areas of the trigeminal nerve distribution -- nose, upper teeth, eye, brow, forehead. I woke up from my MVD in big time pain. The TN2 was the worst it ever had been. The surgeon never went over with me in detail what he found during surgery, though he gave me the operation report when I asked for it. Because I had complications, I underwent surgery again 2 weeks later and woke up in pretty bad pain again. I went from thinking as you, that I didn't know if I could take another day, but over a few months it went down to where it was before the operation. The surgeon told me that my pain could go away once I healed, but that did not happen. I am about where I was pre-MVD. I felt ashamed to tell him how much it still hurt because he so authoratatively said it should feel better with time. He told me that people with my TN2 symptoms have a successful surgery 70% of the time. I have read a lot of patient's reports on this site where the pain was gone immediately after MVD surgery. It sounds like you had every reason to undergo the MVD with the large vessel compressing the nerve. The one thing that disturbs me about your description is that the blood vessel created a crease in the nerve. Does the crease mean that the nerve is permanently damaged, or does it mean that it can now heal? Saying the problem is 99% eliminated could mean that the blood vessel can not damage the nerve any further, but what about the damage it did over the years? I hope that the surgeon clears up his statements in your return visit (I hate PA's, sorry, but my experience with them is that they can't answer any questions, everything is they have to ask the doctor, they are just there as a barrier to real medical care, they don't to a good job, sorry if that offends all the PA's out there but that is my experience. Usually they are in a rush, too busy, too tired, don't remember you.)

Don

13

a5150k9,

Your response was blank. Did you have something to add which got accidently erased?

14



Don said:

Hi Janice,

2 weeks is not enough time to know how you will heal and eventually feel from the MVD. I had a lot of nasty side effects from surgery that did not go away for 6 months. You will have to give it time to see how much of your pain goes away.

I have TN2 type pain, not TN1. On different areas of the trigeminal nerve distribution -- nose, upper teeth, eye, brow, forehead. I woke up from my MVD in big time pain. The TN2 was the worst it ever had been. The surgeon never went over with me in detail what he found during surgery, though he gave me the operation report when I asked for it. Because I had complications, I underwent surgery again 2 weeks later and woke up in pretty bad pain again. I went from thinking as you, that I didn't know if I could take another day, but over a few months it went down to where it was before the operation. The surgeon told me that my pain could go away once I healed, but that did not happen. I am about where I was pre-MVD. I felt ashamed to tell him how much it still hurt because he so authoratatively said it should feel better with time. He told me that people with my TN2 symptoms have a successful surgery 70% of the time. I have read a lot of patient's reports on this site where the pain was gone immediately after MVD surgery. It sounds like you had every reason to undergo the MVD with the large vessel compressing the nerve. The one thing that disturbs me about your description is that the blood vessel created a crease in the nerve. Does the crease mean that the nerve is permanently damaged, or does it mean that it can now heal? Saying the problem is 99% eliminated could mean that the blood vessel can not damage the nerve any further, but what about the damage it did over the years? I hope that the surgeon clears up his statements in your return visit (I hate PA's, sorry, but my experience with them is that they can't answer any questions, everything is they have to ask the doctor, they are just there as a barrier to real medical care, they don't to a good job, sorry if that offends all the PA's out there but that is my experience. Usually they are in a rush, too busy, too tired, don't remember you.)

Don

15

Hi Don,

I think I keep starting new replies in trying to find the one I had written. I am not very good at navigating the site and knowing when to hit reply versus save.

Well anyway...what I had written was that I had actualy misspoke when I used the word "crease". What he actually said was, "divot", and he took one finger from each hand and placed the under side of each and pressed them against each other to show me what he meant.

I had another MRI (of the brain and soft tissue of the head, face and neck). I had given the new neurologist and neurosurgeon at Hoag Hospital all of the CD's and medical records from UCLA. The Neurosurgeon wants to see the radiation planning scans and his office is going to call me nest week to schedult next appointment. I see the neurologist again tomorrow.

The pain continues with no improvement. I am trying to stay hopeful but it is so difficult.

I really appreciate your response and that of all others. It is a blessing to have your support.

I with relief of the pain from this monster we all deal with every day. Take care.

Janice

Don said:

Hi Janice,

2 weeks is not enough time to know how you will heal and eventually feel from the MVD. I had a lot of nasty side effects from surgery that did not go away for 6 months. You will have to give it time to see how much of your pain goes away.

I have TN2 type pain, not TN1. On different areas of the trigeminal nerve distribution -- nose, upper teeth, eye, brow, forehead. I woke up from my MVD in big time pain. The TN2 was the worst it ever had been. The surgeon never went over with me in detail what he found during surgery, though he gave me the operation report when I asked for it. Because I had complications, I underwent surgery again 2 weeks later and woke up in pretty bad pain again. I went from thinking as you, that I didn't know if I could take another day, but over a few months it went down to where it was before the operation. The surgeon told me that my pain could go away once I healed, but that did not happen. I am about where I was pre-MVD. I felt ashamed to tell him how much it still hurt because he so authoratatively said it should feel better with time. He told me that people with my TN2 symptoms have a successful surgery 70% of the time. I have read a lot of patient's reports on this site where the pain was gone immediately after MVD surgery. It sounds like you had every reason to undergo the MVD with the large vessel compressing the nerve. The one thing that disturbs me about your description is that the blood vessel created a crease in the nerve. Does the crease mean that the nerve is permanently damaged, or does it mean that it can now heal? Saying the problem is 99% eliminated could mean that the blood vessel can not damage the nerve any further, but what about the damage it did over the years? I hope that the surgeon clears up his statements in your return visit (I hate PA's, sorry, but my experience with them is that they can't answer any questions, everything is they have to ask the doctor, they are just there as a barrier to real medical care, they don't to a good job, sorry if that offends all the PA's out there but that is my experience. Usually they are in a rush, too busy, too tired, don't remember you.)

Don

16

Hi Don

I wanted to reply again because in re-reading the last I wrote, it sounds like a bunch of gibberish with typos left and right. I had written a rather lengthy reponse and some how lost it. My husband was waiting for us to run an errand and I tried to quickly re-write the response.

Unfortunately, I don't know if the nerve is permanently damaged. I really haven't gotten a definitive answer from the neurosurgeon. This is one of the first questions I plan to ask when I see him next. I also plan to discuss this with the neurologist when I see him tomorrow.

The pain I have has never really fit properly into what Type 1 or Type 2 usually look like. My pain is continous. Also, I have, what I have only been able to describe of as, "movement" in the left side of my face. Over the last nearly 2 years, I have asked my husband thousands of time to feel the left side of my face. It was always impossible for me to understand why he, and the doctors, were unable to feel the motion that I felt so strongly. When he said I had the blood vessel pressed firmly along the length of the nerve, it made perfect sense to me! I believe now, what I have felt all this time as movement, is the flow of blood through the vessel on top of the nerve. I plan to discuss this with the neurologist when I see him tomorrow. My concern is I still have the sensation of "movement" with the pain.

Again, I want to thank you for your reponse. The support and information I have received from you, and others at this site, truly is a blessing. It is so hard not to fall into despair with this condition. Take care.

Janice



a5150k9 said:

Hi Don,

I think I keep starting new replies in trying to find the one I had written. I am not very good at navigating the site and knowing when to hit reply versus save.

Well anyway...what I had written was that I had actualy misspoke when I used the word "crease". What he actually said was, "divot", and he took one finger from each hand and placed the under side of each and pressed them against each other to show me what he meant.

I had another MRI (of the brain and soft tissue of the head, face and neck). I had given the new neurologist and neurosurgeon at Hoag Hospital all of the CD's and medical records from UCLA. The Neurosurgeon wants to see the radiation planning scans and his office is going to call me nest week to schedult next appointment. I see the neurologist again tomorrow.

The pain continues with no improvement. I am trying to stay hopeful but it is so difficult.

I really appreciate your response and that of all others. It is a blessing to have your support.

I with relief of the pain from this monster we all deal with every day. Take care.

Janice

Don said:

Hi Janice,

2 weeks is not enough time to know how you will heal and eventually feel from the MVD. I had a lot of nasty side effects from surgery that did not go away for 6 months. You will have to give it time to see how much of your pain goes away.

I have TN2 type pain, not TN1. On different areas of the trigeminal nerve distribution -- nose, upper teeth, eye, brow, forehead. I woke up from my MVD in big time pain. The TN2 was the worst it ever had been. The surgeon never went over with me in detail what he found during surgery, though he gave me the operation report when I asked for it. Because I had complications, I underwent surgery again 2 weeks later and woke up in pretty bad pain again. I went from thinking as you, that I didn't know if I could take another day, but over a few months it went down to where it was before the operation. The surgeon told me that my pain could go away once I healed, but that did not happen. I am about where I was pre-MVD. I felt ashamed to tell him how much it still hurt because he so authoratatively said it should feel better with time. He told me that people with my TN2 symptoms have a successful surgery 70% of the time. I have read a lot of patient's reports on this site where the pain was gone immediately after MVD surgery. It sounds like you had every reason to undergo the MVD with the large vessel compressing the nerve. The one thing that disturbs me about your description is that the blood vessel created a crease in the nerve. Does the crease mean that the nerve is permanently damaged, or does it mean that it can now heal? Saying the problem is 99% eliminated could mean that the blood vessel can not damage the nerve any further, but what about the damage it did over the years? I hope that the surgeon clears up his statements in your return visit (I hate PA's, sorry, but my experience with them is that they can't answer any questions, everything is they have to ask the doctor, they are just there as a barrier to real medical care, they don't to a good job, sorry if that offends all the PA's out there but that is my experience. Usually they are in a rush, too busy, too tired, don't remember you.)

Don

17

I am 24 days post op and I still feel exactly the same way before I went in. I have chronic left sided head/ear pain with severe tinnitus for 8 years now. I thought I would be pain free too. Now I am deaf in the left ear and I still have even worse tinnitus. Like you I cry and pray and wonder when it will end. The pain is with me all day. My only relief is when I sleep. Since the surgery my left side of my head is so numb and the left ear feels full and blocked. Do you have this also? I hope your condition gets better.