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Yesterday I went to Stanford Medical Center for my second attempt at… - Vague Wisdom — LiveJournal
Adventures in Gimp-dom
Yesterday I went to Stanford Medical Center for my second attempt at a lumbar puncture for my third maintenance dose of Spinraza. My injections have not been easy. See, I’m a difficult subject. My spine I mean, otherwise I’m a cool guy to be around. I have severe scoliosis and not many access points for the needle. Consequently, I’ve had to lay on the hard, flat fluoroscope table for long periods of time while the doctor tried to find a way into the spinal canal. There have been many repeated attempts. I think I’ve only had a couple of times where they managed to get me on the first try. Second attempts aren’t unusual, but it’s usually because I can’t lay on the table long enough. Yesterday, the doctor gave up. Apparently, the one or two places they’ve been able to access, closed up.

They gave me a couple of options. I could install a “port” into my spinal column that would stay there and give them easy access to my spinal column. They also could take a piece of bone out of a vertebrae to get them access. Both of these possibilities, require an operation under general anesthetic. They would also have to put me on a vent (a ventilator) to keep me breathing during the surgery. My lungs are compromised, and my disability gives the doctors some concern about putting me on a vent. The fact is, once I’m put on it. I may never come off. For this reason, I’m pretty certain I won’t want to do surgery.

Without surgery, the doctors are saying that I won’t be able to get the lumbar puncture which means no more Spinraza. Without the drug what gains I have made will slowly go away. I seem to be in shock about it all. It has been hard but exciting to go through this treatment. Stopping the treatment is disappointing. So now what?

They gave me one more alternative. There seems to a lot of activity around treatments for people with Spinal Muscular Atrophy. Many are coming towards FDA approval in the near future. One is an oral medication that they are opening a trial for in a few days. The doctor, who is administering the trial at Stanford, assured me that the drug has shown a lot of promise, but it’s not quite as dramatic as Spinraza has been.

In order to enter the study, I have to be off Spinraza for at least four months. Having missed this last injection, it so happens I will have been off the drug for four months. How about that? I also need to be 60 years old or under. I’m 60 right now and will be 61 in February. They aren’t accepting subjects over 60. So, I have about five months. If I’m accepted by the study, they won’t kick me off once I turn 61. I should just make the cut-off.

The doctor administering the study at Stanford said he would “put a star next to my name” to rush my application. He seemed positive it wouldn’t be a problem. I’m a bit disappointed that the drug isn’t thought to be as good as Spinraza. However, the doctor did point out that they are being very conservative on the dosage. It might be that later they will increase the dose and it will be more effective. The good thing about all of this is I would only need to take a pill. Which I gotta say is very attractive.

Also, there is a stem cell trial for SMA that might get approval in the next year or so. The approval may only be for younger folk, but the FDA was only planning on approving Spinraza for younger kids. Then because of the good results they approved it for all ages. They might do the same for the stem cell treatment. I don’t have a lot more details on the drug trial admins. I’m sure I will be letting you know more as I learn it.

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Current Location: My Study
Current Mood: cranky cranky

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