firewatcher Posted October 11, 2017 Report Share Posted October 11, 2017 One week till hernia repair surgery! I don't have a lot of choice anymore, I have a painful bulge and it is gurgling, and surgery is the only way to fix it. I had my pre-op hospital visit today and actually felt better when I came out of there. The nurses and anesthesiologists actually took me seriously! When I mentioned POTS, the nurse admitted she'd never heard of it, she looked it up and immediately contacted anesthesiology which HAD heard of it AND treated it before. The kicker is that I'm on MCAD treatment drugs...and I have a great deal of my life back......however, it makes surgery far more difficult because of the possibility of anaphylaxis. I've had a fantastic response to the drugs (vastly decreased headaches, decreased body pain AND my kidney function is now "normal") so it makes it likely that I would have MCAD....****....and hooray! I just don't have an official diagnosis, so here I go again. Wish me luck! Quote Link to comment Share on other sites More sharing options...
angelloz Posted October 11, 2017 Report Share Posted October 11, 2017 That all sounds FANTASTIC!!!!!!!! All the best on your upcoming surgery! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted October 12, 2017 Report Share Posted October 12, 2017 Hope it all goes well for you! Glad you could get some reassurance beforehand, that's always nice. I had a hernia repair in January due to improper wound healing from previous abdominal surgery. I don't have mast cell problems but EDS always complicates wound healing for me and I have infection issues that make surgery less than straight forward. I was glad that the surgeon listed to me and we hoped for the best and planned for the worst. Sounds like you also have a good team of Drs working with you which is sometimes half the battle. Please let us know how it goes! Quote Link to comment Share on other sites More sharing options...
corina Posted October 12, 2017 Report Share Posted October 12, 2017 Sending good thoughts and hope things will go smoothly. I've been having hernia repair surgery 4 years ago and came out quite bad (dys wise). Fortunately upping octreotide got me back on track. I'm not at the point I was pre-surgery but quite happy to be back on my feet again! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 13, 2017 Author Report Share Posted October 13, 2017 AND the not so good news... Because the pre-op nurse asked why I was taking so many antihistamines I told her about the possibility of MCAD and the positive response I've had to the treatment drugs. NOW, anesthesia won't put me out to perform the procedure. Three docs have said, nope not till you know for sure. C'mon! Seriously! I mention this stuff so they can prepare IN CASE and it negates me getting treated AT ALL?!?!? Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted October 13, 2017 Report Share Posted October 13, 2017 14 minutes ago, firewatcher said: AND the not so good news... Because the pre-op nurse asked why I was taking so many antihistamines I told her about the possibility of MCAD and the positive response I've had to the treatment drugs. NOW, anesthesia won't put me out to perform the procedure. Three docs have said, nope not till you know for sure. C'mon! Seriously! I mention this stuff so they can prepare IN CASE and it negates me getting treated AT ALL?!?!? Yep. Happened to me. Surgery cancelled. I have a HUGE painful cyst on my ankle, but nobody will take it off. Now I need surgery on salivary glands. Working with the surgery coordinator to see what clearance they want. Told her other surgery was cancelled. Told her it is impossible to see all my specialist and get the tests they require in the 30 day window the hospital requires. I didn't know if I should disclose or not, but she told me to get authorization from my PCP, which I can't get without the other specialists approval, so that can of worms was opened. Cardio killed my last surgery because he didn't like the PFT even though the Pulmonologist approved it, so the PCP wouldn't sign off. Anybody else have this problem? I was told emergency surgery only. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted October 19, 2017 Author Report Share Posted October 19, 2017 Surgery was yesterday: 2 bilateral inguinal hernias and one umbilical! Hopefully all fixed. Now I get to deal with post-surgical pain AND a POTS flare. I keep trying to hydrate, but my bladder is not happy with the trauma, so it isn't working like it should. Seriously, what is is with clueless nurses? They KNOW you have orthostatic issues and they still want you "up and around?" I threw up all over us both, but at least I didn't faint. "UP" is a very different thing for a POTS patient. Quote Link to comment Share on other sites More sharing options...
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