I don't have the energy to read through all I've missed, but I thought I'd update you briefly. Surgery was longer (6 1/2 hours) than expected. Dr. Bowles found TWO veins wrapped around my trigeminal nerve and fixed them. The pain is gone ~~ I'm almost afraid to say that! The pain IS gone!!
My spasms, however, may have to be botoxed (not a bad thing in my book) because they are caused by plaque (scarring of the nerve) from the MS.
Briefly, surgery on Monday took long. I then had a reaction to the anesthetic and threw up (dry heaved, really) for 30 hours, starting Monday night. I was in ICU until Thursday afternoon and then was in a regular room until I was sent home to the care of my darling DannyO and dear Amanda Saturday afternoon.
Of course, my brain says I can do more than my body says (see, they found my brain :=) Anyway, I so appreciated your prayers and good wishes ~~ they meant more to me than you know!
I would say by the end of the week I will be at least able to catch up on the forum and contribute once again. I kept a diary of my experience and will be posting it on my blog... when my energy returns. I have some new ideas for a few paintings... http://www.melodyejoy.wordpress.com/
I think I can do things, but really cannot. It is going to take dicipline to work through the healing pain and quiet myself long enough to heal :-)
Okay, okay, Amanda is demanding that I take a nap!! Boy, is she pushy! I wonder where she got that from??
Sorry to hear surgery & your aftermath was a terrible experience.Hopefully you can put all this past you now.Rest & Relaxation is what you need so please rest yourself.Keepin you in my thoughts and prayers.Godbless
What is interesting, Brian, is that the healing pain is as bad, if not worse. But I KNOW the healing pain is temporary I was in such despair with TN pain, I think I can figure this out! Thanks for your encouragement. I feel like a wet noodle with an aching head, ear and jaw!!! Another nap is in short order!!
Hi Melodye, I’ve been looking out for a posting on how you are, it is wonderful news that they have fixed you. You can only take it a day at a time but having very small goals/challenges can really help, so that you can say “I did it!!!” which is always an awesome feeling. And arnica, lots of it!
Sending you heaps of good thoughts from New Zealand,
Lyn
Boy is the healing pain bad (for me, anyway!). My darling daughter is staying with me and while she cleans today, I am going to paint a watercolor!! Maybe if I can “put” the pain in a place, I can deal with it better!!
Melodye, you are an incredible lady! Thank you so much for sharing your experience with us… the good and the bad. I hope your recovery speeds up and you can get over the surgical pain soon. It’s GREAT to hear that your TN pain is gone! This gives me hope, as I might be going through this surgery in the near future. Please let your loved ones take care of you and get lots of rest! You need it after all you have been through!
Suzanne M.
I am so glad that my doctor didn’t give me specifics as I was healing, just that nausea/vomiting/high fever, were worth trips to the ER. Last night was the worst I’ve felt as far as head pain goes (the back of my head). It was far worse than any TN pain I’d ever experienced. I came downstairs, heated a rice bag and asked my darling DannyO to make me a mint chocolate chip ice cream cone… Since I had already taken a pain pill, I could only take a tylenol ES. Man, oh, man… what a bumpy ride!! I finally fell asleep at 3:45 and woke this morning at 11:00. The first thing I did was to take a pain pill ~~ I am not going to be a hero and go through this without help! But, new morning, new mercies. I’m claiming them! http://www.melodyejoy.wordpress.com/
Melodye,
I’m sorry you had a rough time but glad the pain is gone. When I read the stories of surgeries, I cannot believe I never had any surgery pain or nausea only an aggravating headache for awhile and the headache was not near as bad as my migraines. I hope you continue to heal and I have you in my prayers.
Liz K.
Hi Friends, I thought I’d update those of you who have never experienced an MVD, my recovery thus far. We won’t even go into the surgery aftermath… I want to forget that. My daughter stayed with me until Thursday and then my son drove home from NC to be with me. No offense to any guys reading this, but my daughter took much better care of me
Actually, I am feeling better. The problem I run into is that I tend to not take pain meds in time and then must play catch-up. The pain is around the wound and most of the back of my head ~~ nerve pain I imagine. It can get bad. No swollen jaw.
Tonight my darling hubby and son and I went to get a bite to eat and then I went to the grocery store. Bad idea (not the eating part, the shopping part). DannyO finished the list as I sat on a bench wishing I was anywhere else but where people could see me.
I am up late because of the pain. I took my meds, so I cannot take anymore. I am trying extra strength tylenol to see if that helps.
I was given absolutely no guidelines as to what to expect regarding my recovery and that is a good thing. I am just trying to do a little more each day.
One weird thing I’ve noticed is that nothing tastes good. I don’t know if it is from the anesthetic or the MVD.{{Shrug}} perhaps if it doesn’t taste good, I won’t eat and will lose those last 10 pounds! Wishful thinking probably.
Sorry this is so long, but I wanted those of you who are considering MVD to know what I’m going through.
Hey Guys! I got my stitches out on Thursday and was able to wash my hair yesterday for the FIRST time in 18 days! According to the doctor, I am doing very well, but still have some serious restrictions… lifting nothing heavier than 1/2 gal of milk for 4 more weeks. I must be careful not to “throw my head down.” I cannot clean my house. I can start Pilates in two weeks, with little resistance (can’t wait!). I can start my elliptical in four more weeks. I can drive short distances.
The TN pain IS really gone! The healing pain is… interesting… as my head is coming back to life (it is mostly still numb around the sutures/ear area) I experience jolting, ugly pain. Pain in my right jaw can be horrendous. However, I know it is just temporary so I am dealing, trying to take my meds on time so I do not have to play catch-up.
I have a glioma that must be biopsied later this summer… a completely different issue and there are four possibilities ~~ 3 out of the four are okay, the fourth is bad… hoping for one of the 3
My MS unfortunately is kicking up a bit ~~ probably from all the stress on my body from surgery and its aftermath. But… that is for another forum
I would recommend that you at least consider MVD. Research it well and see if you are a good candidate. Because I don’t have other health issues, except for the MS, I was an ideal candidate. I know it isn’t for everyone and there are risks, like everything in life. Like I told Dr. Bowles, the TN pain was putting me over the edge mentally. I can deal with the other issues, but pain makes everything unmanageable. I nearly feel new again!! (well, except for the 50-year old part, MS, glioma… LOL)…
Thanks for the update Melodye, aah yes the first hair wash, isn’t it a wonderful thing! I’m so pleased that you are doing as well as you are, well done. Take it easy,
Lyn
Hi Melodye, Your account of the MVD surgery was very helpful to me. I’m having MVD on April 8th. on my left side. Now I will know what to expect and questions to ask. I had MVD on my right side in 2005 ,but it didn’t turn out well. I had a brain bleed, memory loss, very bad speech, couldn’t walk, or hold anything in my hands, double vision, dizziness, nausea and you name it. Thru a year of therapy most returned, but not 100%. But I’m doing it again with a new surgeon and VERY optimistic. Because the last one was so bad I don’t know what to expect with a good outcome. I also believe MVD is the best way to go. It is a catch 22, you can only live with so much constant pain! I’m very happy for you. Your life is returning and what a joy you must be experiencing. Best wishes in the future and you will be in my prayers.
Melodye Olsavsky said:
Hey Guys! I got my stitches out on Thursday and was able to wash my hair yesterday for the FIRST time in 18 days! According to the doctor, I am doing very well, but still have some serious restrictions… lifting nothing heavier than 1/2 gal of milk for 4 more weeks. I must be careful not to “throw my head down.” I cannot clean my house. I can start Pilates in two weeks, with little resistance (can’t wait!). I can start my elliptical in four more weeks. I can drive short distances.
The TN pain IS really gone! The healing pain is… interesting… as my head is coming back to life (it is mostly still numb around the sutures/ear area) I experience jolting, ugly pain. Pain in my right jaw can be horrendous. However, I know it is just temporary so I am dealing, trying to take my meds on time so I do not have to play catch-up.
I have a glioma that must be biopsied later this summer… a completely different issue and there are four possibilities ~~ 3 out of the four are okay, the fourth is bad… hoping for one of the 3
My MS unfortunately is kicking up a bit ~~ probably from all the stress on my body from surgery and its aftermath. But… that is for another forum
I would recommend that you at least consider MVD. Research it well and see if you are a good candidate. Because I don’t have other health issues, except for the MS, I was an ideal candidate. I know it isn’t for everyone and there are risks, like everything in life. Like I told Dr. Bowles, the TN pain was putting me over the edge mentally. I can deal with the other issues, but pain makes everything unmanageable. I nearly feel new again!! (well, except for the 50-year old part, MS, glioma… LOL)…
Glad you got your stitches out and that your TN pain is gone. I hope the other pain in your jaw is just temporary. I gained a couple of new pains after my MVD but they are minor and hopefully will stay that way. Maybe others with MS will have MVD. The TN pain may not always be caused by the MS.
Liz
Melodye Olsavsky said:
Hey Guys! I got my stitches out on Thursday and was able to wash my hair yesterday for the FIRST time in 18 days! According to the doctor, I am doing very well, but still have some serious restrictions… lifting nothing heavier than 1/2 gal of milk for 4 more weeks. I must be careful not to “throw my head down.” I cannot clean my house. I can start Pilates in two weeks, with little resistance (can’t wait!). I can start my elliptical in four more weeks. I can drive short distances.
The TN pain IS really gone! The healing pain is… interesting… as my head is coming back to life (it is mostly still numb around the sutures/ear area) I experience jolting, ugly pain. Pain in my right jaw can be horrendous. However, I know it is just temporary so I am dealing, trying to take my meds on time so I do not have to play catch-up.
I have a glioma that must be biopsied later this summer… a completely different issue and there are four possibilities ~~ 3 out of the four are okay, the fourth is bad… hoping for one of the 3
My MS unfortunately is kicking up a bit ~~ probably from all the stress on my body from surgery and its aftermath. But… that is for another forum
I would recommend that you at least consider MVD. Research it well and see if you are a good candidate. Because I don’t have other health issues, except for the MS, I was an ideal candidate. I know it isn’t for everyone and there are risks, like everything in life. Like I told Dr. Bowles, the TN pain was putting me over the edge mentally. I can deal with the other issues, but pain makes everything unmanageable. I nearly feel new again!! (well, except for the 50-year old part, MS, glioma… LOL)…
