W00t!

[stonebender]

Guess what? They did it! This time my second dose of Spinraza is swirling around in my spinal column. It was still pretty difficult this time although they did make some adjustments. I got a CT scan in addition to fluoroscope. I guess the CT gave them a little more information. Apparently I have a lot of bone in the way of some natural access points. The one place they’ve managed to be successful is a fairly small hole and they’ve got to approach it at just the right angle. They worked on me for about an hour. Having gone through this the day before, Tuesday’s hour was about my limit.

Another adjustment they made, was not putting me on the table until the doctors were ready to proceed. I still had to wait while they checked my spine out with the fluoroscope, but at least all the time I was on the table they were working towards the injection. I’m going to have a long conversation with the doctors in the near future. There must be some way they can make this process easier. I’m not so worried about getting my “loading” doses but I am concerned about the continuing process of getting these shots. I have a third dose in two weeks and then a fourth dose a month after that. Then I need to get a dose every four months for the rest of my life. I guess I will deal if I have to but it’s a discouraging prospect.

I’m going to try to respond to everyone individually, but if I don’t get to you, please know that all of your support with the support of my family makes it possible for me to go through this. I think I’ve noticed some improvements in my physical status, but I hesitate to talk about it much this early in the process. I will keep people informed.

Comments

[snippy]

Yay!

[brooksmoses]

Oh, excellent news that you all were able to make it work this time!

Hopefully the fact that this sounds like a learning process means that the doctors and nurses and technicians are in fact learning useful things that will make the future injections easier.

[tiger_spot]

Yes, I hope the imaging is permanently helpful!

[firecat]

So glad they managed to get the injection in this time!

Another adjustment they made, was not putting me on the table until the doctors were ready to proceed.

Wow, what a concept! It should be a no brainer.

[nitoda]

Good to read and hope things continue to improve.

[ljgeoff]

Wonderful!

[submarine_bells]

I haven't been saying much, but I've been following the Spinraza Saga. It sounds really intense. Very glad to hear that they managed to get it happening for you this time round. Fingers crossed that (a) it helps, and (b) that it gets easier for you with repeated attempts.

(No need to respond, especially if it's difficult for you; just know that I'm reading your posts, and that I'm thinking of you.)

[baratron]

I am shockingly short on spoons, which is why it has taken me so long to respond, but I am pleased that this time it went better. I can't believe how long they made you lie on the table until the doctors were ready to proceed! No wonder it was so difficult - those things are uncomfortable at the best of times, let alone for a person with limited movement.

Don't worry about replying to my comment, just know that I am thinking of you and hoping for the best.