MVD recovery

Replies to This Discussion

Permalink Reply by Andy Anthony on May 5, 2010 at 12:50pm

If your pain is past the point of Intolerable to the point that you can't stop cringing/crying or otherwise just short of jumping off a cliff, I Highly recommend it (more on this below). If medicines get the pain in control with minimal disruption to your daily activities, then hold off until you can't stand it anymore. I dealt with pain and drugs of all flavors and strengths from 1993 - 2001 before I realized I had waited way to long to do my MVD. If I had learned about it sooner, I would have done it about 2-3 yrs earlier. But at that time, the procedure was still pretty new to the general Neurosurgeons. The procedure while extremely invasive to your body (head) and the risks are a concern for complications, the reward (NO PAIN) is far greater than the risks. With that said, I can't STRESS the Importance to do your home work and research the experience level of any Neurosurgeon you think you might have this procedure with. The best ones are in the Mayo Clinic in Philadelphia and in California. However, there are now many competent and more experienced doctors all over as more cases arise giving the more operations under their resume for this type of procedure. The procedure itself is a 2-3 hours, you are completely under sedation, you will wake up with some really bad headache(s) due to the procedure done to your skull (this is expected and good in some ways - feeling pain in this case is good) I don't know the percentages of people who wake up with absolutely (NO) pain, but I think it is are pretty good percentage (>70+)
this is merely a guess on my part. For me I woke up with NO pain and I cried just not believing it. Some people wake up with minimal pain compared to when they went in. Some claim it gets better as they heal from the procedure. There are a few that sadly, still have as much pain as before (the risk of failure) [in my completely un-professional opinion, the procedure was not completed successfully] but I have heard in rare circumstances that the surgeon just could not find anything to fix. As far as the length for which there is no recurring pain after surgery, I have no idea, some say 1 - 8yrs ( there may be some longer, but this procedure has just not been in practice long enough to have a good set of patience and their results over long periods of time. My pain lasted a wonderfully and grateful 2 yrs to the month. No explanation as to why it came back, speculation from Docs, is that scar tissue grew enough to invade the nerve again. So back to the drugs and incredible pain. I now have it managed between seeing a cervical (neck/head) chiropractor specialist and a different combination of drugs I am 98% pain free (occasional quick shocks to remind me that the devil is still inside me). Well I went into a really long response, but if I had this type of information way back then, I would have made my choices the same.

I tried the drugs, the pain was to great, I tried to beat my head against walls, I couldn't get help from non-believing doctors who could not explain the pain. I finally did my own research on the internet and found several options. After addressing with two different Neurologist and a Neurosurgeon, we came to the consensus that the MVD was my most logical course given the fact that all the combination of drugs back then were useless.

Finally, even though it was only a 2 yr pain free experience, it was totally worth every bit of money and risk.
I got my life back for 2 years, I think so that I could endure a new wave of the pain, and to give medical world to come up with a few more drugs they felt could also compete against the pain. I have chatted with others in TNA support groups that have had much longer pain free experiences and we ALL agreed the chance at the rewards far outweighed the risks.

I hope this novel didn't put you to sleep or a damper on your thoughts - keep your curiosity on high and investigate with as many resources as you can. I truly wish & pray you all the best of luck and God's speed.

Sincerely,
Andy

Permalink Reply by Anna Guarco Cheney on May 5, 2010 at 3:39pm

Thanks Andy...
I'm looking into MVD because I want to have another child and medications are not safe treatments during pregnancy. Also, MVD is used to treat another condition I have as well. Thanks so much for responding.
Wishing you wellness,
Anna

Permalink Reply by Connie on May 11, 2010 at 10:32am

Hi
I had MVD surgery in May 2009. I woke up from surgery with the nerve pain completely gone. So far, I haven't felt that pain again. I was off work for 6 weeks. I only had someone with me at the house for the first week. Surgery was on Thursday and went home on Saturday. The first week was alot of headache and neck pain. Took the pain meds and slept alot. After that week, I was home by myself and did just fine. Good luck on whatever decision you make and hope you find the right one for you to be pain free.
Connie

Permalink Reply by Val on May 22, 2010 at 6:31pm

Hi Anna,
I just had MVD on May 11 so am still recovery. My surgery was about 4 hours where 2 blood vessels were found around my nerve; one quite large. I was in ICU for over 24 hours and then they moved me to recovery. I left the hospital four days later. The first week was hard. I am getting better now. I seem to have a lot of numbness in my face still (my right side was involved), but no pain like I had. He is slowly taking me off medications now, and I see him for my first post-op visit outside the hospital in four days. I was very sick with any movement the first three days after surgery and had no appetite; I still really don't. A good thing since I have lots of weight to lose (LOL!).

I have a puppy at home that I was afraid to be left to take care of the first week. I am still afraid as I cannnot run after him. Besides that I could probably be comfortable being left alone. You must make sure you always have someone available to drive you in emergencies. I can continue to fill you in as the recovery goes along if you would like. I suspect it will take a very long time for me to get my energy back. I was just able to get back on the computer three days ago and sleep about 16 - 18 hours/day now.
Val

Permalink Reply by Anna Guarco Cheney on May 22, 2010 at 8:41pm

Hi Val,
Thanks for writing and sharing your experience. Yes, please do keep me updated as your recovery progresses. I am so thankful to know ahead of time what to expect... I hope your energy is restored sooner than you think, but admire your patience :)

Val said:

Hi Anna,
I just had MVD on May 11 so am still recovery. My surgery was about 4 hours where 2 blood vessels were found around my nerve; one quite large. I was in ICU for over 24 hours and then they moved me to recovery. I left the hospital four days later. The first week was hard. I am getting better now. I seem to have a lot of numbness in my face still (my right side was involved), but no pain like I had. He is slowly taking me off medications now, and I see him for my first post-op visit outside the hospital in four days. I was very sick with any movement the first three days after surgery and had no appetite; I still really don't. A good thing since I have lots of weight to lose (LOL!).

I have a puppy at home that I was afraid to be left to take care of the first week. I am still afraid as I cannnot run after him. Besides that I could probably be comfortable being left alone. You must make sure you always have someone available to drive you in emergencies. I can continue to fill you in as the recovery goes along if you would like. I suspect it will take a very long time for me to get my energy back. I was just able to get back on the computer three days ago and sleep about 16 - 18 hours/day now.
Val

Permalink Reply by Liz K. on May 22, 2010 at 9:11pm

Thanks Andy for your post. I hope your pain is not too bad. I too am happy about having my life back. I haven't been totally pain free but I would be happy living like this compared to what it was before surgery. Are you considering the surgery again? I am. But then I think well I'll wait until I get really bad again. My surgeon said he could have me in within a week.
Liz

Andy Anthony said:

If your pain is past the point of Intolerable to the point that you can't stop cringing/crying or otherwise just short of jumping off a cliff, I Highly recommend it (more on this below). If medicines get the pain in control with minimal disruption to your daily activities, then hold off until you can't stand it anymore. I dealt with pain and drugs of all flavors and strengths from 1993 - 2001 before I realized I had waited way to long to do my MVD. If I had learned about it sooner, I would have done it about 2-3 yrs earlier. But at that time, the procedure was still pretty new to the general Neurosurgeons. The procedure while extremely invasive to your body (head) and the risks are a concern for complications, the reward (NO PAIN) is far greater than the risks. With that said, I can't STRESS the Importance to do your home work and research the experience level of any Neurosurgeon you think you might have this procedure with. The best ones are in the Mayo Clinic in Philadelphia and in California. However, there are now many competent and more experienced doctors all over as more cases arise giving the more operations under their resume for this type of procedure. The procedure itself is a 2-3 hours, you are completely under sedation, you will wake up with some really bad headache(s) due to the procedure done to your skull (this is expected and good in some ways - feeling pain in this case is good) I don't know the percentages of people who wake up with absolutely (NO) pain, but I think it is are pretty good percentage (>70+)
this is merely a guess on my part. For me I woke up with NO pain and I cried just not believing it. Some people wake up with minimal pain compared to when they went in. Some claim it gets better as they heal from the procedure. There are a few that sadly, still have as much pain as before (the risk of failure) [in my completely un-professional opinion, the procedure was not completed successfully] but I have heard in rare circumstances that the surgeon just could not find anything to fix. As far as the length for which there is no recurring pain after surgery, I have no idea, some say 1 - 8yrs ( there may be some longer, but this procedure has just not been in practice long enough to have a good set of patience and their results over long periods of time. My pain lasted a wonderfully and grateful 2 yrs to the month. No explanation as to why it came back, speculation from Docs, is that scar tissue grew enough to invade the nerve again. So back to the drugs and incredible pain. I now have it managed between seeing a cervical (neck/head) chiropractor specialist and a different combination of drugs I am 98% pain free (occasional quick shocks to remind me that the devil is still inside me). Well I went into a really long response, but if I had this type of information way back then, I would have made my choices the same.

I tried the drugs, the pain was to great, I tried to beat my head against walls, I couldn't get help from non-believing doctors who could not explain the pain. I finally did my own research on the internet and found several options. After addressing with two different Neurologist and a Neurosurgeon, we came to the consensus that the MVD was my most logical course given the fact that all the combination of drugs back then were useless.

Finally, even though it was only a 2 yr pain free experience, it was totally worth every bit of money and risk.
I got my life back for 2 years, I think so that I could endure a new wave of the pain, and to give medical world to come up with a few more drugs they felt could also compete against the pain. I have chatted with others in TNA support groups that have had much longer pain free experiences and we ALL agreed the chance at the rewards far outweighed the risks.

I hope this novel didn't put you to sleep or a damper on your thoughts - keep your curiosity on high and investigate with as many resources as you can. I truly wish & pray you all the best of luck and God's speed.

Sincerely,
Andy

Permalink Reply by jamie leigh on June 1, 2010 at 10:41pm

Hi Anna,
I had MVD May 7th and I am also a teacher. Have you been able to keep teaching throughout this? I had a really hard time keeping it together at work with the pain and/or medication side effects.
My MRI showed a compression but when the surgeon went in he didn't see a compression, so he pinched the nerve...ouch. I was extremely nauseous with the most horrendous headache for about three days. Then I very slowly began to improve. I still have some pain but haven't had to take tegretol. I am concerned about going back to work in the fall. I'm afraid I will have to live a slower paced life in order to keep the pain at bay. But, HOPEFULLY I will have a complete recovery and regain all strength with no pain. Have you decided what you are going to do? Good luck and God bless.

Permalink Reply by Anna Guarco Cheney on June 7, 2010 at 9:29pm

Hi Jamie,
I was basically non-functioning for my first few years with TN... but today lead a relatively normal life! I can totally relate to having difficulty keeping a life together amidst the pain, and on various medications... I definitely lead a slower paced life now, but more fulfilling to be honest.
I haven't decided yet what I'm going to do... I'm still waiting for my last neurologist to send my records to the neurosurgeon... he is a pain in the ass... But thank you for writing to me about your experience.
Best of luck to you & best wishes for a complete recovery ~

Permalink Reply by jamie leigh on June 9, 2010 at 8:28am

Were you able to teach during those few years when the pain was at it's worst?

Anna Guarco Cheney said:

Hi Jamie,
I was basically non-functioning for my first few years with TN... but today lead a relatively normal life! I can totally relate to having difficulty keeping a life together amidst the pain, and on various medications... I definitely lead a slower paced life now, but more fulfilling to be honest.
I haven't decided yet what I'm going to do... I'm still waiting for my last neurologist to send my records to the neurosurgeon... he is a pain in the ass... But thank you for writing to me about your experience.
Best of luck to you & best wishes for a complete recovery ~

Permalink Reply by Anna Guarco Cheney on June 9, 2010 at 11:10am

No, I took a hiatus from everything for a few years. It was awful :(

jamie leigh said:

Were you able to teach during those few years when the pain was at it's worst?

Anna Guarco Cheney said:

Hi Jamie,
I was basically non-functioning for my first few years with TN... but today lead a relatively normal life! I can totally relate to having difficulty keeping a life together amidst the pain, and on various medications... I definitely lead a slower paced life now, but more fulfilling to be honest.
I haven't decided yet what I'm going to do... I'm still waiting for my last neurologist to send my records to the neurosurgeon... he is a pain in the ass... But thank you for writing to me about your experience.
Best of luck to you & best wishes for a complete recovery ~

Permalink Reply by Sarah Hobbs on June 18, 2010 at 10:55am

I was in the hospital for 16 days 6 in ICU due to unforseen problems, that resulted in a Cerebral Spinal Fluid leak that came out of my left nostril. I feel MVD surgey is often protrayed as a simple surgery. Fact is it is brain surgery. It does work well for many when it comes to TN. Have known many it did not work for as well. Standard need for time off is 6 weeks. My neurosurgeon told me that even with out the problems I had, I should expect it to take at least a year before I totally felt back to normal again. He was right.

I would strongly recommend that you do your homework. Not only check out the surgeon, but the hospital you are going to as well.

Permalink Reply by Anna Guarco Cheney on June 18, 2010 at 12:50pm

Wow, sorry to hear that... Thanks for writing Sarah.

Sarah Hobbs said:

I was in the hospital for 16 days 6 in ICU due to unforseen problems, that resulted in a Cerebral Spinal Fluid leak that came out of my left nostril. I feel MVD surgey is often protrayed as a simple surgery. Fact is it is brain surgery. It does work well for many when it comes to TN. Have known many it did not work for as well. Standard need for time off is 6 weeks. My neurosurgeon told me that even with out the problems I had, I should expect it to take at least a year before I totally felt back to normal again. He was right.

I would strongly recommend that you do your homework. Not only check out the surgeon, but the hospital you are going to as well.

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