Update at 3 months out:
I have been off coumadin for 2 weeks now.
Bad stuff first: I still have neck and shoulder pain.. Loobie has talked about that as well. I believe it is the accessory nerve that probably was pinched during surgery causing this dysfunction. I am hoping it resolves but so far it has healed a great deal from the initial feeelings, but it is stubbornly stuck at a level where it is decidedly "better", but still a problem. On a scale of 1-10, 10 being terrible. it is a 2-3. Occasionally it still bothers me a lot, like a 6 for an evening but those days are rare, maybe one in 2 weeks when I do something like vacuum the whole house them mop all 600 feet of wood floor (guilty).
My stent on the right is a 12 mm; on the left 8. The left is not painful -it is the right one that hurts. Dr Dake is using smaller stents now as he has decided he did not need as much capacity as he first thought and he would see people do better in the pain and recovery department. I knew this kind of thing would be learned along the way and willingly accepted the possibility that the later surgeries would be better than those of us first in line. That was always OK with me.
The accessory nerve runs in the same sheath as the jug and carotid on each side. They all go through the jugular foramen (hole in the bottom of the skull) together. I believe the larger stent simply is pressing on the accessory nerve and possibly pinching it which makes the trapezius weak and causes the scalenes rhomboids and levator to overwork (this is a known syndrome that happens after the accessory is hurt) and this seems to fit my type of experience with this. Dr Dake has not signed up for any particular theory but he is aware of it as a possibility. Like Lew, my shoulder blade is wacky, but mine it not severe and it still is getting better it seems.
That's the only bad part........... and it is not that bad.
Now on to the good. I got back from California on a friday, the following Friday I took a trip to my sister's place to visit for 4 days. I saw my new baby nephew and did many fun auntie things. Every day was full (fancy restaurants, Harry potter, house hunting), but day 3 went like this:
get up and get dressed go to the Macy's to buy a suit for my son who is graduating ...then decide to buy several suits so he can pick. Use the rollator for this to be safe but walk pretty good.
go to another Penney's and shop there too. try stuff on too.
Then go to an airfield to pick up Dad who is a pilot and stand on the tarmak waving like a fool, but having ditched the rollator and using a cane cause there is no room in the car for the rollator.
Go to lunch at a Greek place again with the cane....
then go to a flight museum with my cane and wander around looking at plane things and look at the b-something bomber that was giving rides and shows cause that's what Dad likes for 1.5 hours (no where to sit either), then when Dad flew away glance at the watch and realize it is 15 minutes to Julie and Julia, shall we go? Mom and sis look at me as I am the deciding factor. Let's go!!
Off we go and I take my cane to the movie rather than the rollator, but I am walking VERY slow at the multiplex cause I am pretty tired by now and do not want to fall. We watch the movie and walking out I trip but do not fall even though it is just the cane--yeah!-- then we go to dinner...then back to the motel.
Guys this is a huge day for me to have done. I did not get too tired. I was tired but not MS tired , as in "I can't stand another minute get me outof ehre NOW" tired, do you all get that? not only that, there was a conspicuous lack of the usual "Marie, you look beat, let's call it day we can go home and watch DVD's" And this came after two other days of fun.
no naps. walking without my rollator just a cane for goodness sake. I did have a brace on my foot.
I still felt disabled all day. it is not like I felt strong. or zippy. on my feet it is just that I had stamina that I did not used to have. it's just that I kept going. the feet kept on going one in front of the other and I did not collapse.
The next day we went home and we stopped for lunch on that trip walking a couple blocks--with just the cane-- to get to the restaurant Sunset mag said was good. (Public House, Port Townsend) When I got home I was tired, but I unpacked and started laundry of course. then slept like I was dead.
but the next day I got up and went to the mall alone to exchange and return some suits for the right size and then I got some stuff for me. I Was using the rollator though, but then I came home and cooked a goodbye meal for our son.
The next day I was tired. Really tired. "I ain't doin' nuthin' tired".
I tell you this excruciating detail because people wonder if I am "better".
I do not feel better stronger or even less tired. I still feel disabled, walking feels like a struggle but somehow some way I can do stuff I just couldn't before. this detailed description is my attempt at quantifying it, though it defies genuine quantification in such a way. how about we call it stamina.
The movie and airshow day was what I used to do in a week. I would NEVER have planned so many activities in one day. NO way. And absolutely never after 2 other days of activities with the new baby and out to lunch and dinner and ferry trips and carrying suitcases about etc etc. And frankly if we tried to tough out such a day the others would have given up; they used to SEE the fatigue...they'd take me home claiming they were done.
so stamina is my word. I have much more stamina. I am sleeping well too.
And I still do not use baclofen or requip. The spasms are still there but a teeny fraction of what they were. Like this: I used to take both baclofen and requip at bedtime and then I'd still get flexor spasms in the night. A flexor spasm is a spasm in a flexing muscle in my case usually the legs would pull up hard in a "marching" way and or my back would arch hard and or my stomach. So I'd suddenly "pull" into this twisty pretzel situation right in bed. If laying on my stomach. the knees pulling up would force me up onto my knees. These wracking spasms used to come in jags where for a half an hour or more I would have this happen every 10-15 seconds--hundreds of spasms. And that was after the medicine. Sometimes I'd get up and take more then take another run at bed/sleep in half an hour.
now if I have any spasms at all. and I often do not, I might have 2 or 3 very light spasms (if I lay on my back especially) that I can relax away with my mind, or just turn over and have it stop completely--and that is IT. No more. I can't tell you great this is in my world to have the spasms be so manageable and no medicine. I did not even take any baclofen on the trip...
urgh what a long thing. I hope this absurd detail is helpful in understanding how it can be that feel as if I am doing better without really walking any better or feeling less disabled?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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