RichGotsPots Posted August 7, 2012 Report Share Posted August 7, 2012 Did any of you ever read the full Gregg Page story? Well he thought he had OI for around 15 years but about a year after his hernia surgery it got way worse.Similiar thing happened to me. I had Undiagnosed POTS in 2006 then in 2009 I had nasal polyp surgery and the. About one year later pots started to creep back until it got unbearable and has been unbearable for the last year almost...Would be curious to hear other stories.. Quote Link to comment Share on other sites More sharing options...
puppylove Posted August 7, 2012 Report Share Posted August 7, 2012 I had a few symptoms every once in a while, but still lived a normal life. Then all around the same time I had my tonsils out, my mom got breast cancer, and I had a growth spurt. So I'm really not sure what set it off, or if was all of those combined. But I was worse after the tonsillectomy. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 7, 2012 Report Share Posted August 7, 2012 Mine wasn't triggered by surgery - I had a tonsiladenoidectomy and ear tube placement around age 7, and then ear tube removal around age 10ish, but the POTS didn't show up until age 25. Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 7, 2012 Report Share Posted August 7, 2012 I've had multiple knee surgeries (several scopes, a broken kneecap, and cartilage repair in both knees) but the POTS came on much later. I'm facing this question right now; I have chronic tonsillitis and they want to remove them but I'm terrified it will make me worse or I'll never recover. I am doing everything short of voodoo to keep my tonsils in my mouth. Quote Link to comment Share on other sites More sharing options...
corina Posted August 7, 2012 Report Share Posted August 7, 2012 I've been symptomatic all my life (though didn't know what was going on) but every surgery under ga made me worse. Had very much trouble waking up and was very sick. Still I kind of recovered until my latest surgery in 2001. From that point I got worse. The octreotide works for me so I have a much better quality of life now (when it is made properly, if not I get sick again). I won't have surgery under ga unless it's life threatening. I do very well with epidurals though which I thought is good news! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted August 7, 2012 Report Share Posted August 7, 2012 I started having more noticeable symptoms a couple years after having a general anesthetic C-section.......about a year after that new onset of symptoms I had a partial hysterectomy with appendectomy....2 weeks after that my system crashed even worse....I was still managing until about 2 years after that I had gallbladder surgery and that was it....total system failure do not pass go! ....I have since yet to fully recover.....( some specialists believe surgeries can activate MCAS I have read....interesting)Bren Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 7, 2012 Report Share Posted August 7, 2012 I had my gallbladder removed in 2007 and then a D&C in April of 2010, I fell bad ill in October of 2010, not sure if the surgery attributed or not. Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted August 7, 2012 Report Share Posted August 7, 2012 Had c-sections in 2009 and 2010, then pots hit in 2012. So who knows?!?! I would (cringe so vain) get breast augmentation, but I would hate for it to push me into a pots hole Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 9, 2012 Author Report Share Posted August 9, 2012 .I'm facing this question right now; I have chronic tonsillitis and they want to remove them but I'm terrified it will make me worse or I'll never recover. I am doing everything short of voodoo to keep my tonsils in my mouth.I had the worst throat pain from tonsillitis, about 2 years after I first got POTS and my POTS was somewhat in remission. I remember the pain was worse than any of the many streph throats I have had. The Dr. tried one strong antibiotic and it didnt work, then he tried a really strong one and it finally worked. But I had to gargle with Yogi throat tea, us clorisptic throat spray 5x/day (tasted awful) and I ate spoons of honey and some other things. Thank G-d it healed... Hope you dont need the surgery.. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 9, 2012 Author Report Share Posted August 9, 2012 Still I kind of recovered until my latest surgery in 2001. Corina, what was that surgery for if you dont mind me asking? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 9, 2012 Author Report Share Posted August 9, 2012 I had my gallbladder removed in 2007 and then a D&C in April of 2010, I fell bad ill in October of 2010, not sure if the surgery attributed or not.What's a D&C? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 9, 2012 Author Report Share Posted August 9, 2012 Had c-sections in 2009 and 2010, then pots hit in 2012. So who knows?!?! I would (cringe so vain) get breast augmentation, but I would hate for it to push me into a pots holeIt's not vain but you are right, what good are they if you are disabled and in bed and can't show them off lol As a guy I've always noticed that what ever shortcoming a girl/woman may think she has, G-d has always managed to make up for it with another attractive attribute. Learn to love that other attribute and he how attracts guys and you wont worry so much about the one you think is not so perfect... Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 9, 2012 Report Share Posted August 9, 2012 Rich, a D&C stands for Dilation and curettage, it can be performed for many reasons, a lot of times if a female has a miscarriage (loss of pregnancy) they get one. I got one because after I had my son, they did not get all the placenta out and it reattached to my uterus (which caused severe hemmorage for me), they had to go in and scrape everything out. Basically they clean out the ladies uterus, I think.I also think, that because of the complicated delivery (Feb 2010), the D&C and hemmorage (Apr 2010), then the continued state of fatigue thereafter, is what brought on my POTS (Oct 2010) but it's all spaced out, so, I can't say that for sure but it is all I can think could have happened.What do you think? Quote Link to comment Share on other sites More sharing options...
corina Posted August 9, 2012 Report Share Posted August 9, 2012 Rich, I had my ox coccis broken when I fell while roller skating. It didn't heal properly and I could barely sit (but I was the standing queen at the time!) so After about a year my doc found a surgeon who wanted to do the surgery (removing the badly healed part). Chances that it would help were 50/50 and I remember I was pretty scared. It turned out that the surgery was succesfull but I then developped the dysautonomia (which was lingering anyway though I didn't know it). I've been looking into leaking spinal to be the cause of my dys but my neuro was pretty sure it wasn't that. Quote Link to comment Share on other sites More sharing options...
Batik Posted August 13, 2012 Report Share Posted August 13, 2012 I haven't voted as I haven't been diagnosed yet, but I was told fifteen years ago that I have ME and it is looking extremely likely that I have POTS. No surgery beforehand (burn-out and flu were the obvious triggers), but I have been feeling absolutely dire since having my gallbladder out this March. Body temperature has been the main problem, they keep testing me for anaemia and low thyroid and I am becoming an expert in fingerless gloves and socks so thick I can hardly get my shoes on. I felt absolutely dreadful for the first month after the surgery, particularly being cold, and couldn't get them to do more than run some blood tests until I collapsed badly and an emergency doctor was called in. He decided that it must be a post-surgical infection as I was shaking, felt icy, running a low-grade fever, and barely able to move or speak due to weakness (my partner found me on the floor cuddling the quilt I'd grabbed on the way down). I got a week's course of antibiotics, felt reasonably better, and thought that maybe he was right. I think it might have been coincidence, though, as the main trigger that day was being very close to road-works that went on for hours and were so noisy that they made me vibrate. I've had other collapses that have been triggered by sensory overload and general exhaustion. Five months on from the surgery, I am still having a lot of problems with body temperature fluctuations, icy extremities, shaking fits, and generally feeling more wiped out than usual. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 14, 2012 Author Report Share Posted August 14, 2012 My question is, that if we know that some surgeries are making pots worse or even causing it, do we have any research as to what about these surgeries causes this reaction? It's a known fact and I would think the obvious place to investigate would be the areas of the surgery.... Quote Link to comment Share on other sites More sharing options...
Batik Posted August 15, 2012 Report Share Posted August 15, 2012 That's worth checking - a disproportionate number of us are talking about gallbladder removal - but there will be factors in common with all surgeries. General anaesthetic, fasting (prolonged in my case due to lousy pain management, i.e. I was vomiting due to the morphine), heavy pain medication, and the whole experience of being in hospital, for starters. Quote Link to comment Share on other sites More sharing options...
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