Well now I have had stents for 6 months now. I have a bunch of things to report .
First the spasticity continues to change and reduce. In fact, my physical therapist who is helping me with my neck and who I have been working with for 3 months now commented this morning on my lack of any spasticity doing my "all fours" exercise.
This is how it was 3 months ago: I'd be standing next to the PT table and angling to get on it to get in all 4's position so I can extend my legs straight out behind me in an exercise those PT people like. I'd get my good leg up there, then the bad leg would stiffen out as I tried to bring it up, banging the knee into the table for good measure. Then as it would relax over 5 seconds, I could gradually, awkwardly, get it on the table, but as I'd try the exercise I would get another spasm all over; back arched I'd have to ride it out for 2-3 seconds before we could move on. About 1/3 of the time a change in position/movement would re trigger another spasm like this. I would declare "SPASM!" and we'd all wait until it was over.
this is how it is now: I get on the table and do the exercise, I move flexibly and smoothly aside from the still profound weakness in the right leg which requires some creativity to work with. I do have a slight FEELING of spasticity in trying to work, but my movement appears noticeably smooth and we never stop for any spasticity.
For years stretching my muscles has resulted in spasms, I can stretch any muscle and not have that response now unless I stretch very hard. For example, to go from standing to a squat position requires stretching of many muscles (hams, calves, quads) and as such it used to result in a fierce spasm so I'd fall over onto my knees then forced out flat on my face on the rug. I can do that now squat down, and linger there so the muscles get a good stretch; I'm not strong enough to stand back up without help from a chair but that's OK.
I can lay on my bed and drop my leg down to do a psoas stretch with no flexor spasm pulling my leg up also. Haven't been able to do that for at least 3 years.
Notice that at 3 months post stent surgery I still had noticeable spasticity that impeded my ability to do the exercise, but at 6 months it is nearly gone.
I'm sitting in a chair to type I just got up to check and sure enough no spasm as I shift from sitting to standing either. I stand up and can immediately take a step if I want; I do not have to stand there and be all frozen for 3 seconds until I can take off. When did that go away??
I still get some stiffening extensor spasms when I wake up but they are brief and similar to a normal person who yawns and stretches--minus the yawn; it is over quickly perhaps a half a second and when it is over, it is over, and I feel relaxed and flexible.
All types of spasms I have had for years are greatly reduced and getting softer all the time. I still take no baclofen and no requip.
My neck is almost pain free now and I do not have daily headaches from the accessory nerve pinch any more which is HUGE. It is not totally normal yet but it is well on its way. I have to say that the damage to that nerve was very disturbing it made me feel unwell and kind of more disabled when it was bad. I am so glad it is gone now. Mentally it was very VERY hard to take.
This is a problem for this high jugular surgery because that nerve is right there, my guess is that they are always going to take special care to avoid hurting it now that they know about it because of us early stent o teers, but that this will continue to be a possible side effect of stents in that location.
If you are reading this thread thinking about participating in a trial or something please be aware of this possible side effect. Ask ahead of time about it and if it happens to you, you'll know how it went for me. I had it, it was bad, I've been in PT and it is much, much better now by 6 months. Lew wrote about his experience with this too. Mind you that many others had neck pain for a few weeks, it is just a couple of us which had this actual damage.
Call out the trumpets cause now the big news: Today I walked with no cane and nothing at all for 500 feet at PT with the bioness on. It feels strange and peculiar to have no cane, and very scary. But I can do it. If I strengthen my right quadriceps I will do it more easily too they say, so I have new exercises to be doing for that.
Before you say "But that is because of the bioness" I will offer that I agree with that and we can't ascribe a percentage of "bioness help" and "stent help" for my function so you, the reader can know what is what.
Sorry dude! But I want to remind you I had a walkaide trial (the other brand) before the stent surgery that failed because I was too spastic. It was not even a viable option before.
And today I walked with no support at all 500 feet.
I still get tired, but rest rejuvenates me. I still have lighter activity schedules than normal people, my balance is still somewhat poor and I have the standard bowel and bladder issues which seem pretty much the same.
Sleep however is far different. for years and years I would position myself in bed then sleep until I had to go to the bathroom, then I'd reposition with pillows and try to go back to sleep, often failing to drop off well again and to merely drowse until the next bathroom break...Usually getting up 4 times a night.
Last night we went to bed as the power was out at 8. I fell asleep easily and woke to go to the bathroom once, I staggered in half asleep, then came back to bed and dropped deeply off again. I partially woke to change positions a couple of times but fell right back into restful sleep each time. When I woke for real at 6 I was REALLY awake and ready to go. ALL my nights are like this now.
I can say with no reservation at this point that I am grateful that I had the opportunity to do this and I do seem to be somewhat better, though not cured.
I am thankful to take this outcome and hope I do not progress, only time will tell.
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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