I had an a occipital stimulator trial last November and during the procedure had excessive bleeding, a 30 minute procedure took four hours to stop the bleeding. When the trial was removed in the office I had the same bleeding issue, poor PA was told it may happen but she was poorly prepared and ended up with blood everywhere.
I was then sent to a local hematologist who sent me to a large university teaching hospital hemophilia center. I was also dx'd with anemia, but they can't determine why the blood loss. I was tested for everything under the sun, and had unusual platelet aggregation tests. Some levels were fine and others were way way off. They did follow-up tests later and everything was fairly normal except my bleeding time test and anemia. The criteria for their procedure is normal clotting and stopping to bleed is within 3 to 5 minutes, I clotted at 8 1/2 minutes and stopped bleeding at nine. They are now sending me to a different type of Rhummy/immunologist to explore the possibility of MCTD (mixed connective tissue disease).
Now I am finally scheduled for my permanent occipital and cervical stimulator implantation, The hematologist has recommended that the surgeon use a DDAVP infusion prior to my surgery. DDAVP or Desmopression is a clotting agent, that is used to typically treat VonWillibrands disease, it lasts about
12 hours but has some nasty side effects I am told.
My procedure is outpatient but I have been warned that DDAVP typically causes severe nausea, vomiting, heading, swollen face and bright red skin. I will also be on fluid restrictions (1 liter in 24 hours) or you can go into renal failure due to low sodium levels. They gave me a complex descript
ion, that's just the basic. I don't exactly want to be discharged after a neck surgery while vomiting and in such rough shape. I am just looking for anyone who has used or uses DDAVP, I would like to hear your experience. TY!
Post Edited (Angeleyes13) : 2/28/2016 5:54:48 PM (GMT-7)