2 weeks post MVD
Today is my 2 week MVD anniversary. I working on getting my strength back. Yesterday I walked a mile on my treadmill and today I walked the dog for 1/2 hour (alone). Up till now I havent ventured out by myself. I drove for the first time too. I went grocery shopping and carried the groceries and I have a doctors appointment this afternoon that I plan to drive to on my own as well. So on the recuperation side, things are moving well. My numbness is starting to go away slowly too. I can actually feel my bottom teeth slightly when I brush now.
What I am not so happy about it I still get a twinge now and then. They are not nearly as strong as before the MVD but it scares me. Does that mean it didnt work for me? Is that the way the nerve feels when it regenerates? Is the nerve healing from all the years of TN? Should I continue reducing my meds even with the presence of twinges? I finally got hold of a neurosurgeon this morning as the dr that did my surgery is gone till mid Sept. He said he takes his patients of meds cold turkey after an MVD. My meds are only in half at this point (600 mg of tegretol) He said he wouldnt be concerned about the twinges for at least another month, that some people do have twinges. (sure, isnt it easy for him to say). I don't know what to do. I don't know if I should reduce further at this point. It's a lonely place inside my head right now. I guess I will have to take one day at a time in regards to the twinges.
3 weeks after MVD
I'm just about fully recouperated now. My incision is closed and most of the scab has fallen off. It is no longer sore. I no longer have bad headaches. I don't tire so quickly either. I am down to 300 mg of Tegretol but I am not twinge free. I still get the odd twinge and it still freaks me out. Old habits die hard. Twinges have always freaked me out. I get a rush of adrenaline running through my body every time I have one. It's a really weird feeling. The twinges I get now are not what they used to be though. They are not the same intensity or duration.
What is very nice is the heavy zombie state the tegretol causes has let up. I am no longer asleep on the couch at 5:30 in the evening. I used to walk around yawning and sleepy all the time on 1200 mg. Sometimes someone would talk to me and I would be staring right through them not really listening. Almost like sleeping with my eyes open. My friends are constantly refocusing me to listen when they speak. Fortunately they dont take offense. I stopped doing public speaking in the last year too. I write an advice column in a newspaper and am invited to speak to different groups from time to time. I found my mind was wondering in mid sentence sometimes and I was to embarrassed to continue. Maybe after I'm off Tegretol (if I can be) I will start speaking engagements again. Many things might change. I haven't flown in 13 years either. Maybe I can start travelling again too. It's almost like there is a light at the end of the tunnel. As long as the twinges don't get any worse I can handle this just fine. It's so hard to believe that this MVD is behind me now. It was so consuming for so long. TN engulfs your whole body and mind. It really is an affliction and a terrible imposition on life.
My numbness is still there, however I am confident that with time that will be gone too. I feel much more than when I came out of surgery and am sure it will continue to regenerate. The areas where they screwed in the halo are no longer sore either.
1st day back at work after MVD
Today was my first day back at work just a little over 3 weeks after surgery. I have an office job so there is no manual labour involved. Everyone was telling me that it is too early but I really do feel fine. I drove fine, worked fine, and left early on everyone's advice and you know what.....everyone was right. I was feeling just geat but when I got home I was crashed out on the couch and slept for a couple of hours. The dog woke me to eat otherwise I probably would have slept longer. I guess sometimes you have to listen to the people with the experience. I know my Dr. told me I could go to work after a couple of weeks and to tell you the truth I thought I could too but I stayed home the extra week just in case. I'm sure it's just a matter of gaining strength back. Today is the 5th day I've gone without a twinge. I am still on 300mg of Tegretol and will probably get more twinges once I stop all the meds which I plan to do on Thursday.
4 weeks post MVD
Most of the physical recouperation is now over. Just a bit of soreness where the bone is still fusing and still a bit of numbness in the lower lip area.
The big stuff is in my mind. I know this will be different for everyone but for me it is difficult to forget the pain of TN.
Yesterday I stopped all Tegretol. However it was on my mind. Was the pain going to return? I put away my pill timer which I had been relying on for 13 years and there were no pills on my night table beside my bed. One thing I never realized was that Tegretol with all it's side affects was also a drug that kept me having very comfortable deep sleeps every night (and sometimes days too). Now with no Tegretol I was up till 4:00 a.m. tossing and turning, reading and watcing TV. Nothing helped. My mind was active and my body not tired.
When I finally did fall asleep something weird happened. I had a terrible TN attack. I immediately woke up and after a few minutes I realized that I did not have an attack at all. I had a dream that I was having an attack and that was awful. It proved to me that the memories of TN are here to stay. They may have fixed the nerve but they can't fix the memory of the pain I felt for so many years.
I guess only time will help fade the memories of the years of TN.
5 1/2 weeks since my MVD.
I was feeling a bit tender around the base of my incision on Saturday evening and when I felt it, there was a small lump there. I'm not at all sure what that could be. My incision seems to be closed and healed. I wonder if it is an infection starting or maybe a swollen gland. I was about to go to the emergency dept. of the hospital I had the surgery in but then the thought of sitting there for hours ended that idea. I waited till Sunday evening and after I came back from a wedding I attended in the afternoon I called the after hours hotline for my medical centre and spoke to a RN (Registered Nurse). After asking me many questions, she didn't feel I had to go to emerg but that I should have it check by my doctor in the next 24 hours. So this morning I will call and hope to get an appointment today (not so easy here in Ontario).
It is swollen and tender but no leakage or fever mmmmmm......wonder what it is. Things were moving along nicely. I hope this is just a small blip.
I went to the doc yesterday and she said that raised sore area is part of the healing process. She said the skin underneath was coming together and the nerves that were cut along the incision are starting to regenerate. Where before along the incision line it was fairly numb, now it is sore because the nerves are coming back. I was so glad to hear it wasn't the beginning of a CSF leak. That's all I could think of when I felt that little lump. I thought fluid was starting to pool there. I can't believe after all I've been through with this surgery that I still have a "glass half empty" attitude. I have so much to be thankful for, I'll just have to give myself a big slap and a good shaking. These minor aches and pains will have to take a back seat to life.
We cannot direct the wind but we can adjust our sails