Thank you so much for you reply. I truly hope it works out for you.
I just worry about it all and all the complications but on the other hand I dont have any life at the moment.
We have to live in hope though and have the belief that it can help.
Best wishes
Nat
Andy Rackerby said:
Hi Nat, As you are probably finding out, each case of TN is different but without a doubt MVD is the most successful treatment. I had MVD in May and, I’m not going to sugar coat it - post surgery was rough. Thankfully it was short - appx 24-30 hrs of heavy discomfort. Funny thing, I did get electric “shocks” in intensive care post surgery, and it was a reminder that nothing compares to TN. I’m still on meds post surgery. I have had smaller jolts of pain, and thankfully nothing like what I had previously. My neuro’s had let me know this may take a year before they will know if surgery is successful. I’m OK with that. I’m hopeful i can click down on meds. One thing for sure is I’m absolutely 100% glad I did the surgery - win or lose. I’m not in pain currently.
I would encourage you to do it. My Neuro - who is young - only had a small number of MVD’s under his belt. I was totally fine with that. He did a awesome job. Very clean, used dissolving stitches, scar not even noticeable. I know he researched the best way to go about it. My sense is that he was involved and paying attention to me and the upcoming procedure.
Hi Natalie,
I hope you are having a good day. When is your surgery scheduled? You will see many comments about MVDs. And of course those with good outcomes will probably recommend it and those who had failed MVDs or complications will not recommend it. I was one in the middle. I had a lot of pain relief but not full pain relief. And I had a really easy recovery so I recommend it. But I realize that it may not be the same if I repeat the surgery. And I am considering it again. But it seems as if those typical symptoms do better than those with atypical.
Liz
I created a journal of my MVD experience in 2007. There are pictures of my incision in there, too. http://mytnjournal.blogspot.com/
I also have my survival/packing list in there:
Details that may be useful for anyone preparing for MVD (no particular order): (this is not to be perceived as medical advice - only to inspire ideas for someone preparing for MVD)
Wash your hair the day before surgery. For three days in ICU, I wished I could wash my hair! On the same note, if you dye your hair, have it refreshed a few days before surgery. You will not be able to dye your hair for about 3 months. Consider using baby shampoo for a few weeks after surgery. It feels less abrasive on the scalp.
Bring a pillow for the car ride home. For obvious reasons
Check with your doctor to find out if you’ll need over the counter pain medicine after surgery. My doctor told me to take regular tylenol. It would be useful to pick this up before surgery.
Bring a small pillow for the stay in ICU. I had a travel pillow and it was wonderful! I used the pillow to cover my eyes when it was too bright. The hospital was low on pillows, and the travel pillow helped to prop my head without putting pressure on my incision. I threw out the pillow after surgery to prevent any germs, but it was completely worth having it for 3 days in the hospital.
Bring slipper socks for the stay in the hospital. Be willing to toss these, too. The hospital provides slipper socks also.
Use a bath pillow to support your head in the bathtub in the weeks following surgery. This made it more comfortable for me to take a bath.
Setup your bedroom so that the bed is close to the door. Ideally, sleep in the bedroom closest to the bathroom. During the first week at home, I had periodic nausea. The short walk to the bathroom was very helpful.
Consider using a microwaveable wrap to soothe your shoulders and neck. (check with the doctor on when you can use this at home)
Use a cool washcloth on your forehead if you are in pain. Many nights, the coolness of the cloth helped me to relax and fall asleep.
Cut down on caffeine. After I completely weaned off of Trileptal, I began experiencing insomnia. Cutting out caffeine helped me to start sleeping again.
Bring chapstick to the hospital! Your lips will thank you!
If possible, arrange to have someone in your home for two weeks after surgery. Most people will be able to do normal routines around the home in a week, but it’s very nice to have someone there during the second week.
Have some spring water, or a gallon of water in your house. You’ll probably want to drink a lot of water after you get home from the hospital. It seems to help with recovery.
Have soft-foods on hand in the house. Jello, pudding, soup, teas, peanut butter and jelly, etc. You may want to slowly ease back into your normal diet when you first get home. I had a bit of nausea and I found that ginger ale and saltines were especially helpful.
Bring a tiny container of hand sanitizer with you to the hospital. You’ll be able to sanitize your hands whenever necessary. Bathroom trips to wash hands were nearly impossible during the first few days.
Read up on/practice relaxation methods like reiki, meditation, deep breathing, etc. It will help you to prepare for the surgery, since pre-surgery anxiety can be high at times.
Consider asking a someone to update a blog for your friends and family. They will have a place to look for updates and it takes the stress off of your immediate caretakers during the first few days. (fewer phone calls)
Hi Emma,
Thank you so much, its very helpful. We often forget the minor things with worrying about the major ones. I am sorry that your pain is returning, hopefully its just a few twinges.
Take care
Nat xx
Emma Ne said:
I created a journal of my MVD experience in 2007. There are pictures of my incision in there, too. http://mytnjournal.blogspot.com/
I also have my survival/packing list in there:
Details that may be useful for anyone preparing for MVD (no particular order): (this is not to be perceived as medical advice - only to inspire ideas for someone preparing for MVD)
Wash your hair the day before surgery. For three days in ICU, I wished I could wash my hair! On the same note, if you dye your hair, have it refreshed a few days before surgery. You will not be able to dye your hair for about 3 months. Consider using baby shampoo for a few weeks after surgery. It feels less abrasive on the scalp.
Bring a pillow for the car ride home. For obvious reasons
Check with your doctor to find out if you’ll need over the counter pain medicine after surgery. My doctor told me to take regular tylenol. It would be useful to pick this up before surgery.
Bring a small pillow for the stay in ICU. I had a travel pillow and it was wonderful! I used the pillow to cover my eyes when it was too bright. The hospital was low on pillows, and the travel pillow helped to prop my head without putting pressure on my incision. I threw out the pillow after surgery to prevent any germs, but it was completely worth having it for 3 days in the hospital.
Bring slipper socks for the stay in the hospital. Be willing to toss these, too. The hospital provides slipper socks also.
Use a bath pillow to support your head in the bathtub in the weeks following surgery. This made it more comfortable for me to take a bath.
Setup your bedroom so that the bed is close to the door. Ideally, sleep in the bedroom closest to the bathroom. During the first week at home, I had periodic nausea. The short walk to the bathroom was very helpful.
Consider using a microwaveable wrap to soothe your shoulders and neck. (check with the doctor on when you can use this at home)
Use a cool washcloth on your forehead if you are in pain. Many nights, the coolness of the cloth helped me to relax and fall asleep.
Cut down on caffeine. After I completely weaned off of Trileptal, I began experiencing insomnia. Cutting out caffeine helped me to start sleeping again.
Bring chapstick to the hospital! Your lips will thank you!
If possible, arrange to have someone in your home for two weeks after surgery. Most people will be able to do normal routines around the home in a week, but it’s very nice to have someone there during the second week.
Have some spring water, or a gallon of water in your house. You’ll probably want to drink a lot of water after you get home from the hospital. It seems to help with recovery.
Have soft-foods on hand in the house. Jello, pudding, soup, teas, peanut butter and jelly, etc. You may want to slowly ease back into your normal diet when you first get home. I had a bit of nausea and I found that ginger ale and saltines were especially helpful.
Bring a tiny container of hand sanitizer with you to the hospital. You’ll be able to sanitize your hands whenever necessary. Bathroom trips to wash hands were nearly impossible during the first few days.
Read up on/practice relaxation methods like reiki, meditation, deep breathing, etc. It will help you to prepare for the surgery, since pre-surgery anxiety can be high at times.
Consider asking a someone to update a blog for your friends and family. They will have a place to look for updates and it takes the stress off of your immediate caretakers during the first few days. (fewer phone calls)