MVD recovery

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

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

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

…praying for you Bob…

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

This is a long-overdue follow up on my MVD surgery 10 years ago. June 25, 2010 and now it is only a month to my anniversary. 10 years have moved me officially into the ranks of being a senior citizen, and I have slowed down some. I still get a few tinges of TN pain a day but nothing as intense as what I got when my case was at it’s worst.

At other times, I have trouble sleeping, but I don’t know if this is related to the TN medications or just a factor of my advancing years. In any case, I am no longer trying to work “regular” jobs. I still do consulting work, but choose my customers and only work on things I am interested in. This lets me work my own schedule most of the time, so I can work as early or late any day I want to.

I also have gotten into house-flipping. The physical work is rewarding for me, and I do most of the work myself. I only use help when the work is too heavy for one person or requires a high ladder. I do have a roll-around scaffold that I can set up when I need to do high-level work for longer periods like when repairing ceiling plaster or painting up high. The reason I have to stay away from heights is that I have developed vertigo and other balance issues since the MVD procedure. An ear nose and throat specialist and a specialist in dizziness have reviewed my case and both agree that the dizziness was caused by damage to the eighth cranial nerve either before my MVD surgery or during the actual surgery. (The trigeminal nerve is the fifth nerve, but they are only a few millimeters away from each other.)

Still, I would gladly have some dizziness instead of the intense and debilitating pains I had before the surgery. While I might only get seriously dizzy once a month, I don’t want to do it when I am in a position where I might fall. I came to this realization after falling one day when finishing work on a bungalow (putting in a light bulb in a ceiling fixture of all things) and I wound up messing up my rotator cup and dislocating my shoulder. This has all healed now, but it was probably the second most painful things I have had happen. Unlike the TN, there were no pauses in the pain, and the shoulder pain was constant.

House flipping had filled my needs to do something other than sit around, lets me work whenever I want to, and still make money for the time I spent on the job. (One reason this works is that I buy homes outright, and this way I don’t pay interest but only insurance, property taxes, and utilities.) Most of the flip shows on TV involve a large, high interest-rate loan, and every additional week the job takes winds up costing the budget big time.

My medications have been Gabapentin and Baclofen. It took a few years to get everything working in the medication line, and Lamotrigen has been a final component since about the second year.

I take the dog for a 3 to 5-mile walk every day the weather permits on a dedicated bikeway and so social distancing is a lot easier than it might be other places. So far, I have been able to stay at home, in my car, or at a house I am working on and none have had any human visitors since early February, so there probably are not as many virus spores in these places than there are in the rest of the town. Food and medicines I pick up or have shipped, so again there is less chance of contamination.

I hope everyone is doing well. If you know someone with a confirmed case of Coronavirus (Covid-19) it would be interesting if you post about their experiences – good or bad. The scientist still are trying to figure out more about this condition, and any information that we share here might help them to understand Covid-19 better. If there are unique symptoms or if a particular medication seemed to help, let us know here so the data will be available to others doing Covid-19 research.