Our day actually began the day before with the home health nurse installing the foley catheter so Sharon could make this long trip. A nurse came out earlier in the day and installed one, but it got pulled while she was sliding to the potty chair and was causing her pain.So we took it out and we called them out to put a new one later that night and that one was ok. The next morning had Sharon waking up at 3 and me at 4 to get ready for the big day. A transport company was to arrive at 5:30 to take us to the IR for her venogram/procedure. They arrived at 4:45 and we were nowhere near ready. She couldn't make the transfer from the manual chair to the power chair. So we brought in the local fire dept by calling 911 so she wouldn't wind up on the floor. It is called a lift assist or something like that. Four big beefy boys came out and 2 of them lifted her by her legs and shoulders and got her into her chair so we could make the appointment. Her arms are sore from it still. This time the transport company driver didn't get us lost or make her airsick (hork) with their lame driving.
So we arrive at the IR without any further incident. She is taken into Radiology at 8 and given a neuro exam (pricking with paperclips from head to toe.) She had very little feeling from her knees down. They start an IV with mild sedation. At 9 she is taken into Radiology. They prepped her groin area, and set up their dropcloths and then she fell asleep. At one point she woke up and felt the doctors hand pushing on her groin. She didn' t feel anything else during the probing or the contrast injection and was asleep for this. When she next woke up the balloon was in her right jugular and she spoke up "HEY". The doc then ordered the nurse to give her more drugs and she was back out in a second. When she awoke the third time she says she hallucinated a bunch of bikini models in the corner of the operating room. She had no idea where she was, there was an X-Ray machine in front of her and the probe was still in her vein. The doctor removed the probe and the machine and they were done. It was around 12. After recouperating for an hour or so and getting some fluid and graham crackers we spoke to the doctor about the procedure. He said her left IJV and Azygos looked fine but there was narrowing in the right (which is smaller than the left) IJV. He said the flow was barely trickling on that side. There were 2 collaterals which were as big as the vein itself. He ballooned several spots to increase the the diameter. He was satisfied that normal flow was restored after this was done and the vein held up at least for as long as he was in there watching it. I asked the doctor if he wanted me to keep his name off the internet and he said "PLEASE". He doesn't want to be innundated and get a lot of attention for what he is doing. He said, however, that he spoke with his head neurologist about CCSVI and she said that if she had MS she would get scanned and angioed in a hot second. He said they know that this stuff is all over the internet and the lid can't be kept on it forever. Right now we are just at the beginning. We are just the 3rd MS patient he has done this procedure for. He did say that he didn't think this procedure was risky at all with just the angio and that he would wait on stenting any veins to see if A) the procedure had any positive effects B) a relapse of symptoms and restenosis occurred. So did she come flying off the table singing an operetta? Nah, she was too wasted on the "conscious sedation" they gave her. In recovery she was pretty tired but came back around after the drugs started wearing off and was quite talkative. Her neck was a little sore, but her arm hurt worse from the firemen. She said her legs and feet didn't hurt nearly as much as before. From a 4 on the pain scale to a 3 or a 2. All in all it wasn't too bad of an experience for her. Her last dentist appointment was probably more painful. But then we got home and in trying to transfer onto the manual wheelchair to the power chair once again she wound up on the floor. (Two days ago a home medical equipment company delivered a Hoyer lift, but it won't work with the power chair because the base is too narrow to accomodate her power chair...) We employed the Hoyer lift (still waiting to be returned) and lifted her off the floor and onto the manual chair and off to bed she went. Even though she fell (she was exhausted) the time on the floor and the amount of freaking out was at a minimum as compared to other floor events. While in bed she experimented by laying her bed down flat. She hasn't been able to do this for years without experiencing vertigo and nausea. She tried it and felt fine! She said she could tell something is different. I can't wait to see what tomorrow will bring after she has had a good nights sleep.
Well, she awoke from her nap of an hour or so and said that her vision has improved slightly and that "things seem clearer". She is not having to strain to see the computer. Just tilting her head back before would make her dizzy now she says it is no problem. Her left hand also feels stronger. Makes sense, right? Right brain, right vein -- left side of the body. I feel like I am watching a little baby seed about to sprout can't wait for it to hurry up and become a tree. And start flying around singing opera. But as of right now she says "I do feel better". I guess someone is going to lose that bet!
list of improvements: (day 1 and part of day 2)
more feeling in fingertips
better strength in left hand
easier to transfer to potty chair
fatigue is less
arm strength is better -- able to lift self on potty chair (pushups) with arm strength only
voice quality is stronger
feels a lot more clearheaded
oh, and get this--she took a hot shower for the first time in 5 years and it felt great--she didn't even notice that the water was nice and hot!
transferring back to the bed from the shower chair was easier
breathing feels less labored -- hasn't felt the need for the O2
no vertigo when leaning head backward or lying flat
freakout mode not happening when feet are on the floor
standing while holding self on wheelchair for 30 sec without 02 (pre procedure was 15 sec w/out O2 and 30 sec with O2)
areas still of concern:
still having issues with bladder -- peed bed during the night LOTS of urine
some double vision when turning head
right leg twitched a bit during the night
feet still turn purple when on the floor, but not as painful
still falling, leg and ankle muscles atrophied and need rehab
It's a nice day outside, we might see about getting her into her power chair and going for a cruise around the property. More on this later.
Ok, it's later. I can see that this is going to take time or we will be in for serious setbacks. We tried unsuccessfully to get her into her power chair. The floor. Again. This time no Hoyer lift (they came and took it back this morning). So we placed a sheet under her and she scooted all the way back to the bedroom on her butt. Once there after resting and O2 we did our famous "get a leg up" procedure and kind of rolled her onto the bed. This is a person who has been doing not much of anything but bedrest for 2 years. She has no calf muscles or ankle muscles. We need some very gradual strength building exercises that she can do in bed to get her back to being able to get into that power chair. It is a very difficult transfer for her. Until then, we have a new Hoyer lift coming with better accessiblity. She is now recovering in bed, and her recoup time is less than previous floor routines. We need to keep her off the floor so I guess I will have to be the voice of reason when she thinks about trying stuff that is still too difficult. At least she wasn't on any blood thinners so she won't bruise up or bleed. It is just so sad to see her try so hard and still wind up on that floor and be unable to do much of anything to stop it once it starts to go south.
I don't want to eat my words so we are just taking it as it comes and making notes on what is and isn't happening. Despite the setbacks I still have to say we are both glad we did this. People: never, ever give up. Even if it is just a little bit of an improvement it is worth doing. She has a lot of rehab to do, but maybe now we can start to go the other direction (while staying off the floor).