Experience with DDAVP/Desmopression

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 description, 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)

I am an advanced practice nurse and we often give DDAVP to patients either immediately prior to surgery or immediately after we get them off to sleep for surgery. Of those patients who receive DDAVP while still awake, I've never had them complain of any of the side effects you mentioned. Are you having the procedure at a teaching hospital?

Thank you! That gives be a bit of relief. I am typically very susceptible to side effects so the thought of this is giving me second thoughts about treating prior. The other option is to treat during surgery if bleeding is to excessive to control. I am borderline for use according to the dr, they worry more about the excess bleeding because this surgery is along the spine. I know just worrying about it makes you more apt to notice things, I just need to relax.

The hematologist was from a huge teaching hospital but the procedure is being done locally. My dr is a very well do own neurosurgeon that helps companies develope SCS, I completely love this dr and trust him immensely.

I guess the Drs like to prepare you for the worst then you can be thrilled when you don't feel like dirt. The dr did tell me that typically you can sleep thru the worst but those icky side effects could last 6-8 hours (surgery is 2-3 hours) and then the strict fluid restrictions for 24hrs.

When I was researching DDAVP I was surprised at all of the completely different uses it had. I will just keep my fingers crossed for the best!

There's always going to be the chance your the one in a million who has side effects and yes the they have to warn you of what could happen but I have not seen any of the issues as a nurse either. Possibly some nausea but post op that can't be directly blamed on the DES..

Good luck and let us know how it goes.

Oh no, I'm so sorry to hear about your pneumonia. I wish you a speedy recovery with no further complications.