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Originally Posted by PurpleFoot721
Hello Shay and welcome to Neurotalk. Thank you for joining and sharing your experience here. I truly appreciate it.
I do have a tendency to get a little nervous when going in for any type of procedure, which does not help at all for the pain. My PM does seem to be fairly knowledgeable and somewhat up to date about CRPS with the exception that he did not believe in it spreading before I started to show signs of spread. He does reference Dr. Schwartzman's work quite often, but since my PM only does a 5 day infusion, he apparently does not use the same protocol. He mentioned that he will be starting at a low dose and working up to around 70 mg/kg, given over a 4 hour period and adjusted based on how I tolerate the infusion. To be honest, I do not know if that is a total dose, or an hourly rate. I guess that is another good question that I could ask this week before going in.
I do have a wheelchair, but there are several at there office for wheeling patients in and out. I have only had to use one of theirs the day I had the trial SCS implanted. I am figuring that I will likely need to use one again come next week, but I am fine using one of theirs again.
I was already figuring that I would be taking things easy for a few days after the infusion. I was invited to my cousins wedding on the Saturday following the infusion. Not knowing how I would be feeling, I responded that I am hoping to make it, but it is very unlikely that I will.
Again, welcome to Neurotalk, and Thank you! This is a fairly active board. I hope to see you share some more of your experiences on other posts.
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Alaina,
It sounds like you are going to be well prepared for your infusion. I did want to add a little more for your consideration. Littlepaw mentioned the possible need for a bathroom break. I have found that it helps if I stop drinking fluids at least two hours before the infusion and use the restroom right before the infusion starts. Then I will use the restroom right after it stops. One gentleman has had a urinal ready just in case. Oh, if it were only that easy for women! On the other hand, I have seen people walk in with a bottle of water, because they end up feeling dehydrated. That leads to another possible side effect: constipation. You may want to have something at home just in case the need arises. I drink a lot of water between infusions and for several days after.
You expressed concern about the IV. Will they be using the same IV Access
for the 5 days? That makes it much easier than a daily stick. I have a designated arm and spot that they can use. I only had one time that the access was a problem for me, and it hasn't been a problem since we started using that one spot. You probably know where you would want it since you have been through other procedures.
I am with you and Littlepaw concerning music. We are told not to bring books, tablets, phones, etc. Relaxing music with headphones is allowed and I would recommend it. It will help drown out any noise. Just remember to put your phone in airplane mode, so it doesn't start ringing!!!
They dim the lights, close the curtains, and have quiet time during the infusions. I have found this to be very conducive to relaxation. If you don't know if they will be dimming the lights, you may want to consider taking sunglasses with you.
Wishing you relaxation and great results,
Shay