MVD recovery

Replies to This Discussion

Permalink Reply by Scott M. on July 26, 2010 at 10:28pm

Hi to Everyone!

I think the answers here show one thing -- everyone's experience is different.

I started having issues with my TN which prevented me from working in early August 2009. Medications made my life a blur, and my liver enzymes shot up from the tegretal I was taking. I did research -- perhaps to much research -- but I am the type person who needs to know what can be done and what to expect.

I wound up at the Cleveland Clinic where I met Dr. Lee, the neurologist who specializes in MVD and other "Lower Brain" surgery. Many people criticise his bluntness, but I found it refreshing. He didn't say "Now, now, we will do this little procedure called MVD and everything will be better." He went into details of the surgery, risks, possible complications, recovery issues, etc. He showed me my MRI and how the basilar artery was wrapped around my trigeminal nerve.

I did more research, checking medical books out of the Ohio State University's medical library about MVD and trigeminal neuralia. I read Dr. Lee's published papers and two lengthy books he authored. As an engineer and scientist, I was impressed by Dr. Lee's surgical inovations, research methods, and work experience. I compared MVD to other treatments, but kept coming back to MVD and Dr. Lee.

Finally after several delays due to insurance issues, enzyme issues, and coordination of help after the surgery and Dr. Lee's schedule, I got in for surgery on Friday, June 25. My TN pain was under control by meds, but I was in a constant fog, and was unable to work. My primary care physician gave me the green light for surgery -- no major issues in bloodwork, EKG, etc.

I went to the Cleveland Clinic the day before my surgery for test and to fill out paperwork. I was surprisingly calm and unworried about the surgery. I slept well, getting up at 8:00 for my 9:15 surgery appointment. My wife and daughter walked with me the three blocks from the hotel to to the surgery center. I was efficiently prepared for surgery and taken to the operating room. I was still calm, and the anesthesiologist didn't see any need to give me any preliminary "happy juice" through the IV to calm me down. Dr. Lee was completing another surgery, and I talked with the surgery crew while I waited. Finally, Dr. Lee arrived about 45 minutes behind schedule, and we talked briefly before they put the gas mask on me and I fell asleep.

The next thing I remember, a nurse was calling my name and telling me I was in the recovery room. She said my surgery had gone well. I know I was drifting in and out of sleep, but remember the time was 2:15. My surgery had taken a little over 3 hours. I remember being thristy, and asking for something to drink. The brought me a stick with a lemon flavored sponge on the end to wipe around inside my mouth, but before I was done, the brought a container of ice water and then ask if I wanted a lemon-lime soft drink. It was refreshing. I had to resist the urge to chug it down.

I was getting oxygen through a nose piece, and had a cathater hooked up to my bladder. I was still drifting off now and then. I was ask to say who I was, tell them my birthdate, tell them where I was, and answer similar questions frequently. The nurses told me I would be going up to my room in a little bit, and my family would join me there. It seemed to take forever to get me to my room, but eventually, they rolled me upstairs.

I was feeling no pain at all -- no TN pain, no headache, no pain at the site of the incision, absolutely no pain. My family visited for a few minutes, then left me so I could "rest". Anyone who thinks you can "rest" in the hospital
has been mis informed. They brought me a liquid diet dinner, which I ate some of and then I watched a little TV. I would have liked to have slept but there seemed to be a family reunion going on in the next bed. It didn't make that much difference since the nurses came around frequently to check vital signs and ask me how I was doing. I did have what seemed to be a pulled muscle on the left side of my neck that was getting more and more painfull (my surgery was on the right), and the nurses explained that this was because of the way they twisted me around to gain access to my head for the surgery.

The next day, I had several visitors besides my family, and a few phone calls. I was a little queezy and ate lightly, and a few times felt I might vomit, so I ask for anti-vomit medications. I ask to have my catheter unhooked which they did right away and wanted to get up -- at least to sit for a while. By afternoon, I was able to take a few laps around the floor. I still was run-down, and not getting that much sleep day or night. I watched TV, listened to CD's, and slept when I could. At 6:00 the next morning (Sunday) one of Dr. Lee's associates came around and took my bandages off. He checked my charts and said I would probably be sent home that day.

I was now able to get up and wander the halls by myself, and except for being tired was ready to go. I was eating a little better and not feeling nausiated any more. I was drinking my ice water like a whale. I was released in the early afternoon and instead of taking the 4 hour drive home that day, we spent an extra night at the hospital hotel. I was only able to sleep on might right side or back, due to the neck ache. I had a small dinner and a nice breakfast the following morning.

We stopped every hour or so on the way home, mostly so I could walk around a bit. I was only pain killers before bed to help with the neck ache, and was eating normally. I was able to shower and wash my hair with baby shampoo. During the next week, did a few little things around the house and went with my wife to the home center to get a few supplies for the home repairs, to the grocery store, and ate dinner out a few times. Everyone said I looked and acted a lot better -- probably because I was down to 1/2 my previous medications.

At 10 days, I went to my local doctor to have the stitches taken out, and he approved me for driving. I returned to work that day for 4 hours a day. This increased to 6 hours a day a week later and 8 hours a day 3 weeks after the surgery.

It is now 4 weeks after the surgery. My only issues are that I still have neck pains from time to time, but I find heat pad helps a lot, and my family doctor is arranging for physical therapy. I do have a lot of numbness and "funny" feelings on my face on the right side (the side of my surgery). This makes sleeping on my right side sometime an issue. The numbness normally doesn't bother me that much when I am awake. This numbness changes and is different on different parts of my space. I can feel touch, heat, and cold everywhere on my face, but the right side feels numbness too. Sometimes my numbness feels like my face has been stuffed with cotton, sometimes I feel areas that feel wet, but are not really wet, sometimes I feel other things. These sometimes drive me a little crazy, but then when I remember the TN pain I used to get, they seem minor. Both Dr. Lee and my family doctor say that these will probably get better over time.

The biggest thing I didn't expect after surgery was the numbness issue. Not that it is painfull, it is just a lot different than what I expected. The term "some numbness" is often used when associated with the MVD procedure, and at least in my case, this term seems a little inacurate, but I can't think of a term that is better.

Hope this account is of some help to those considering MVD. Like I said when I started, every person's experience is different. So far, my experience has been generally better than expected. I attribute this partially to the fact that I was phycologically and physically prepared for the surgery, and that I found a surgeon and facility that I had high confidence in. I will post periodic updates.

Scott M.

Permalink Reply by Liz K. on July 26, 2010 at 10:46pm

Scott M,
I had a lot of numbness for several months - the back of my head and most of my right side. I was concerned about pain with the numbness but I didn't have any of that. But I still have TN pain although it is much better. It sounds as if you don't have any TN pain?
Liz

Scott M. said:

Hi to Everyone!

I think the answers here show one thing -- everyone's experience is different.

I started having issues with my TN which prevented me from working in early August 2009. Medications made my life a blur, and my liver enzymes shot up from the tegretal I was taking. I did research -- perhaps to much research -- but I am the type person who needs to know what can be done and what to expect.

I wound up at the Cleveland Clinic where I met Dr. Lee, the neurologist who specializes in MVD and other "Lower Brain" surgery. Many people criticise his bluntness, but I found it refreshing. He didn't say "Now, now, we will do this little procedure called MVD and everything will be better." He went into details of the surgery, risks, possible complications, recovery issues, etc. He showed me my MRI and how the basilar artery was wrapped around my trigeminal nerve.

I did more research, checking medical books out of the Ohio State University's medical library about MVD and trigeminal neuralia. I read Dr. Lee's published papers and two lengthy books he authored. As an engineer and scientist, I was impressed by Dr. Lee's surgical inovations, research methods, and work experience. I compared MVD to other treatments, but kept coming back to MVD and Dr. Lee.

Finally after several delays due to insurance issues, enzyme issues, and coordination of help after the surgery and Dr. Lee's schedule, I got in for surgery on Friday, June 25. My TN pain was under control by meds, but I was in a constant fog, and was unable to work. My primary care physician gave me the green light for surgery -- no major issues in bloodwork, EKG, etc.

I went to the Cleveland Clinic the day before my surgery for test and to fill out paperwork. I was surprisingly calm and unworried about the surgery. I slept well, getting up at 8:00 for my 9:15 surgery appointment. My wife and daughter walked with me the three blocks from the hotel to to the surgery center. I was efficiently prepared for surgery and taken to the operating room. I was still calm, and the anesthesiologist didn't see any need to give me any preliminary "happy juice" through the IV to calm me down. Dr. Lee was completing another surgery, and I talked with the surgery crew while I waited. Finally, Dr. Lee arrived about 45 minutes behind schedule, and we talked briefly before they put the gas mask on me and I fell asleep.

The next thing I remember, a nurse was calling my name and telling me I was in the recovery room. She said my surgery had gone well. I know I was drifting in and out of sleep, but remember the time was 2:15. My surgery had taken a little over 3 hours. I remember being thristy, and asking for something to drink. The brought me a stick with a lemon flavored sponge on the end to wipe around inside my mouth, but before I was done, the brought a container of ice water and then ask if I wanted a lemon-lime soft drink. It was refreshing. I had to resist the urge to chug it down.

I was getting oxygen through a nose piece, and had a cathater hooked up to my bladder. I was still drifting off now and then. I was ask to say who I was, tell them my birthdate, tell them where I was, and answer similar questions frequently. The nurses told me I would be going up to my room in a little bit, and my family would join me there. It seemed to take forever to get me to my room, but eventually, they rolled me upstairs.

I was feeling no pain at all -- no TN pain, no headache, no pain at the site of the incision, absolutely no pain. My family visited for a few minutes, then left me so I could "rest". Anyone who thinks you can "rest" in the hospital
has been mis informed. They brought me a liquid diet dinner, which I ate some of and then I watched a little TV. I would have liked to have slept but there seemed to be a family reunion going on in the next bed. It didn't make that much difference since the nurses came around frequently to check vital signs and ask me how I was doing. I did have what seemed to be a pulled muscle on the left side of my neck that was getting more and more painfull (my surgery was on the right), and the nurses explained that this was because of the way they twisted me around to gain access to my head for the surgery.

The next day, I had several visitors besides my family, and a few phone calls. I was a little queezy and ate lightly, and a few times felt I might vomit, so I ask for anti-vomit medications. I ask to have my catheter unhooked which they did right away and wanted to get up -- at least to sit for a while. By afternoon, I was able to take a few laps around the floor. I still was run-down, and not getting that much sleep day or night. I watched TV, listened to CD's, and slept when I could. At 6:00 the next morning (Sunday) one of Dr. Lee's associates came around and took my bandages off. He checked my charts and said I would probably be sent home that day.

I was now able to get up and wander the halls by myself, and except for being tired was ready to go. I was eating a little better and not feeling nausiated any more. I was drinking my ice water like a whale. I was released in the early afternoon and instead of taking the 4 hour drive home that day, we spent an extra night at the hospital hotel. I was only able to sleep on might right side or back, due to the neck ache. I had a small dinner and a nice breakfast the following morning.

We stopped every hour or so on the way home, mostly so I could walk around a bit. I was only pain killers before bed to help with the neck ache, and was eating normally. I was able to shower and wash my hair with baby shampoo. During the next week, did a few little things around the house and went with my wife to the home center to get a few supplies for the home repairs, to the grocery store, and ate dinner out a few times. Everyone said I looked and acted a lot better -- probably because I was down to 1/2 my previous medications.

At 10 days, I went to my local doctor to have the stitches taken out, and he approved me for driving. I returned to work that day for 4 hours a day. This increased to 6 hours a day a week later and 8 hours a day 3 weeks after the surgery.

It is now 4 weeks after the surgery. My only issues are that I still have neck pains from time to time, but I find heat pad helps a lot, and my family doctor is arranging for physical therapy. I do have a lot of numbness and "funny" feelings on my face on the right side (the side of my surgery). This makes sleeping on my right side sometime an issue. The numbness normally doesn't bother me that much when I am awake. This numbness changes and is different on different parts of my space. I can feel touch, heat, and cold everywhere on my face, but the right side feels numbness too. Sometimes my numbness feels like my face has been stuffed with cotton, sometimes I feel areas that feel wet, but are not really wet, sometimes I feel other things. These sometimes drive me a little crazy, but then when I remember the TN pain I used to get, they seem minor. Both Dr. Lee and my family doctor say that these will probably get better over time.

The biggest thing I didn't expect after surgery was the numbness issue. Not that it is painfull, it is just a lot different than what I expected. The term "some numbness" is often used when associated with the MVD procedure, and at least in my case, this term seems a little inacurate, but I can't think of a term that is better.

Hope this account is of some help to those considering MVD. Like I said when I started, every person's experience is different. So far, my experience has been generally better than expected. I attribute this partially to the fact that I was phycologically and physically prepared for the surgery, and that I found a surgeon and facility that I had high confidence in. I will post periodic updates.

Scott M.

Permalink Reply by Scott M. on July 26, 2010 at 10:53pm

Yes, Liz, So far, so good. NO TN PAIN!

Scott M.

Permalink Reply by jamie leigh on July 26, 2010 at 11:13pm

Hi Scott,
Your experience sounds SO MUCH better than mine, and we had the same surgeon...Dr. Lee. I am glad you are feeling well and didn't have severe pain after the surgery. My recovery was very painful. I am grateful though that I have not had to take tegretol since surgery:)
Jamie

Permalink Reply by Ella on August 19, 2010 at 7:06pm

I had my MVD done just over 5 years ago. I kept a real time on line diary of my recovery (on a different site) as it was happening. My physical and emotional feelings. I have updated it every year on the anniversary of my MVD.

http://braintalkcommunities.org/forums/showthread.php?t=2028

Permalink Reply by Scott M. on September 5, 2010 at 4:06am

It is now 9 weeks after my surgery, and except for some numbness issues everything is going fine. I am 100% off my TN "pain" drugs, and seem to have more energy and strength every day. I also seem to be thinking more clearly than I have since this whole thing started.

Scott

Permalink Reply by Janet L Ditslear on September 6, 2010 at 11:33am

Hello Anna,

I am 12 post op. I also am very active, mother of four, and finishing my graduate work. Planning for the surgery seemed to fall into place for me. My kids are active and people have been amazing at helping us with dinners, running kids, etc. I know it's hard to let go, but believe me, it's important for you to rest and take your time. I am suppose to start my class tomorrow, but I need to be realistic and take my time. We'll see what happens. But, I am doing great...just tired and my left side is "thawing out!" What I mean by this is that my left side was numb from surgery, and it's taking time getting back to normal. This is normal and probably good. I didn't have the TN pain when I chose to have surgery, for me the medications where intolerable. I weaned off one of the drugs before surgery and one other shortly after surgery. My head was sore, from surgery, and the drugs must still be in my system since I'm a little unsteady. Everyone is telling me to take my time, and admittedly this for me is the hardest part being a mom. I think six weeks would be realistic to take off of work. You'll be more tired than you expect. I stopped taking pain meds other than tylenol and advil on the fourth day after surgery b/c they made me nauseous. But, they were great after surgery. don't be afraid of them. ICU was LOUD! I think I was sensitive. My hearing in my right ear has a ring, it also should go away. I agree with other posts, do your homework. I had the most amazing surgeon in Indianapolis...and I am very happy I did this because we are too young to suffer the rest of our lives. May God bless you...and always pray, because truly that is what I leaned on the most. Janet

Permalink Reply by Janet L Ditslear on September 6, 2010 at 11:33am

Janet L Ditslear said:

Hello Anna,

I am 12 days post op. I also am very active, mother of four, and finishing my graduate work. Planning for the surgery seemed to fall into place for me. My kids are active and people have been amazing at helping us with dinners, running kids, etc. I know it's hard to let go, but believe me, it's important for you to rest and take your time. I am suppose to start my class tomorrow, but I need to be realistic and take my time. We'll see what happens. But, I am doing great...just tired and my left side is "thawing out!" What I mean by this is that my left side was numb from surgery, and it's taking time getting back to normal. This is normal and probably good. I didn't have the TN pain when I chose to have surgery, for me the medications where intolerable. I weaned off one of the drugs before surgery and one other shortly after surgery. My head was sore, from surgery, and the drugs must still be in my system since I'm a little unsteady. Everyone is telling me to take my time, and admittedly this for me is the hardest part being a mom. I think six weeks would be realistic to take off of work. You'll be more tired than you expect. I stopped taking pain meds other than tylenol and advil on the fourth day after surgery b/c they made me nauseous. But, they were great after surgery. don't be afraid of them. ICU was LOUD! I think I was sensitive. My hearing in my right ear has a ring, it also should go away. I agree with other posts, do your homework. I had the most amazing surgeon in Indianapolis...and I am very happy I did this because we are too young to suffer the rest of our lives. May God bless you...and always pray, because truly that is what I leaned on the most. Janet

Permalink Reply by Bob Snodgrass on September 6, 2010 at 8:10pm

I probably shouldn't...my MVD (fall 2007) was a little bit of everyones. I had 2nd and 3rd opinions. The staff had to catch up with me! The scar's bigger, I was told and knew it could happen. Still feels like a snaredrum, the back right of my head; 7 teflon pads.
Two weeks to the day, my pain came back with a vengeance.
I appreciate the good MVD stories!
I appreciate any good TN stories! Thanks, bob

Permalink Reply by Liz K. on September 6, 2010 at 10:27pm

Bob,
I sure wished you had a good MVD story. It is really tough. I am sorry.
Liz

Bob Snodgrass said:

I probably shouldn't...my MVD (fall 2007) was a little bit of everyones. I had 2nd and 3rd opinions. The staff had to catch up with me! The scar's bigger, I was told and knew it could happen. Still feels like a snaredrum, the back right of my head; 7 teflon pads.
Two weeks to the day, my pain came back with a vengeance.
I appreciate the good MVD stories!
I appreciate any good TN stories! Thanks, bob

Permalink Reply by jamie leigh on September 7, 2010 at 3:22pm

..praying for you Bob...

Permalink Reply by Tom Johnson on October 3, 2010 at 9:20am

Hello Anna: I am one of Dr. Casey's MVD patients, the author of "Striking Back!" My MVD went well. I had TN for 17 years, and have been pain free for 8 months now. The only issues I have had are the sensation of numb spots on my lower lip and lower jaw, mostly when I am tired or overworked now. I have all tactile sense back on my lower jaw, some times more sensitive than prior to surgery. What seams to make the numb spots is lack of temperature sensation, all these areas were trip points for the TN pain.

Following surgery, I did not have any headache, no pain issues with the wound site, however I had fluid in my middle ear for about 7 to 8 weeks. My recovery was faster than expected as well. I was back to work in 4 weeks instead of 6. After about 8 weeks, the wound would get itchy now and then as the stitches in the lower layers of tissue dissolved. The only other minor issue is that I can not wiggle my right ear any more, and I do not mind that at all to be free of the TN pain.

As different groups of nerves are coming back to life I will get itchy in that area or get a interesting tingling sensation in that part of my face prior to getting feeling back in a spot.

If my TN comes back, I will do MVD again toot-sweet!

You are welcome to contact me at any time if you have more questions.

Tom Johnson

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