Second try on the third dose, done!
After last Wednesday’s fail, I talked to Connie about options that had been mentioned. She really didn’t like the idea of the CT assist because of the additional radiation. Since the plan is to continue getting Spinraza regularly; needing a CT assist each time would quickly get me glowing in the dark. :-)
After a couple LP’s, I’d come to realize that some pain medication would help me. When I discussed this with Connie prior to my third dose, she thought, I was trying to treat the pain after the procedure. I am sore for a couple of days afterward. Actually, I’m much more concerned about the pain of being on the fluoroscope table. I thought that pain meds might allow me to stay on the table longer and with more comfort. Thus, giving the doctor as much time as possible to get the furshlinginer
needle in my spinal canal.
I don’t do pain medication much at all and with my weak lungs, Connie worried about how pain meds would impact my breathing. She suggested Tylenol. I really didn’t think that was going to touch the pain. So, she offered a small dose of Vicodin. She wrote me the prescription and I picked it up Monday evening. She had suggested I try a dose Monday evening and if it felt okay, to use a dose before the lumbar puncture Tuesday. I ended up taking Vicodin in the waiting room before the LP.
Perhaps it’s a bad sign to go to the hospital often enough to start knowing everyone’s name. One of the nurses who had introduced herself at my last LP attempt asked if I remembered her name. I had forgotten the name, but I tried to play it off by saying that she didn’t look like a Hailey. She asked what name she looked like and I said Sarah. So she asked me whether I remembered her name to see if I would call her Sarah or not. Previously Carol had suggested thinking of Haley’s Comet would help me remember which of course it did. So now Haley is permanently in my memory.
As we walked back to the “staging” area. Basically where I transfer from my wheelchair to a gurney before going into the fluoroscope room. She commented on the blanket I had over my arms. I use it to you stay warm because it’s easy to take on and off. For some reason I hadn’t used it for my first attempt at the third dose. Haley suggested it was my “lucky” blanket and that this time we would be successful since I had remembered to bring it. Perhaps she has a point, because it did work this time.
At first, it seemed I was doomed. I heard too many familiar comments of failed attempts: “We’re almost there…No, that’s bone…Let’s go back to 70, maybe that’s a better approach…That hurt? Sorry sir, did it feel like your back or did it go down your leg?...Bone again”
After almost 2 hours they decided to try a completely new angle and I had just about decided I couldn’t take it anymore when I heard my doctor say, my new favorite words: “I’m in.”
I quickly responded with a “You have to be shitting me!”
“No believe me.”
“Hey, I’m sorry for the language.”
“Oh no need, you just said what we were all thinking.”
After thanking everyone profusely I headed back to get transferred to my wheelchair. Haley brought me some cookies she had made. They were a chocolate chip cookie/s’more mash up that tasted quite good. She told me there were three there. One for me. One for Stacy and one for Carol. She told me I wasn’t allowed to eat all three :-(. Anyway there were lovely cookies and it was very sweet of her.
As I’ve said before and I will continue say, everyone there at Stanford has been so very supportive. I feel like a real champion leaving the building with all the fuss they make.
So now it looks like one more in a month and I will have all of my loading doses. After that I’m not sure what happens with continuing treatment. They don’t know about reimbursements because Medicare is being less than cooperative about committing. Everyone at Stanford seems positive that things will work out. I tend not to be that kind of guy. So I will be cautious until I actually get a real OK.
Now as far as whether the Spinraza is doing me much good. There is very little objective evidence. I will be getting my lungs tested by the pulmonologist after the loading doses. If there is as much improvement as it feels like I have made. It will be documented with the test. loracs
tells me she thinks my grip is a little stronger. I do feel like my arms are a bit stronger, but it’s hard to prove. I think I’m making more small gestures with my hands as I talk. Many more gestures than I remember doing in a while. This could all be wishful thinking on my part. I’m looking forward to some third party corroboration.
I’m sorry this took so long to post. I just couldn’t make it work and I’m still not sure I like it, but here is. Now onto September 5 for the fourth and final loading dose. Hoo boy!