(Here is part 1: https://myheds.wordpress.com/2015/11/30/hernias-hysterectomies/)
Today is the much anticipated meeting with the plastic surgeon! I was hoping to at least have made a dent in the list of parts before I saw him but maybe, just maybe, he has been doing some research himself over his Christmas holidays and he is ready to face this head on as a team with me. SOOOO much is riding on this meeting today. After nearly three decades of medical disasters I REALLY need this one to go well! Despite my shocking health over that time I at least was able to walk properly and do so many very “normal” things which I can no longer do, and if I have more surgery and it doesn’t make a difference it will be even worse and …. well, I don’t want to think about that.
It is VITAL that we do this as a team and that they take my EDS seriously. A connective tissue disorder and surgery are a nightmare combination as has already been proven the case with me. I had my right ovary removed thirteen years ago and not only is it still REALLY sore, but whenever I have any abdominal ultrasound, across three different countries, they ALWAYS say that my right ovary is healthy and normal, … but I DON’T HAVE ONE!!!! And it has since been proven that I don’t have one on further investigation and internal ultrasounds by a Gynae, …. and yet normal ultrasound techs ALWAYS find something there even since it has been proven otherwise. So what IS there? What has grown there in the mean time? And what is that REALLY painful “pulling” feeling I keep getting when I move around? Apparently it is likely some out of control scar tissue and connective tissue, which is part of the whole EDS problem.
If you keep doing surgery to remove scar tissue but more is growing back, and too much of it and in all kinds of places, often attaching organs to each other which shouldn’t be, then the new surgery only causes more scarring and more of the problem. But when the issues also include holes in the abdominal wall where bits of intestine pop out every time I cough, laugh, blink, get out of bed, and when I am bloated (not IF, but WHEN) it is excruciating and NEEDS to be fixed. I can’t twist or bend or jump or reach, and it hurts ALL the time.
So we HAVE to repair the muscle wall for the hernia repair and seeing as the hernia was caused by the EDS which we didn’t know about and so is an unwanted result of the surgery twenty months ago to repair the abdominal muscles from coming apart from pregnancy, and if we are going in anyway then we may as well “clean up” as much of the mess as we can, and remove whatever it is that has grown back, and get rid of my uterus while we are there seeing as it is doing more harm than good by making me have to take Progesterone which is oh so bad for EDS, and while they are at it they may as well take out the left ovary which has been nothing but trouble as well! In one swoop they can clean out everything that is causing problems and stitch it all up by a plastic surgeon with an EDS protocol and twice as many stitches and stitches made of special stuff and whatever…
But it means co-operating surgeons each having their turn, each being prepared to take this REALLY seriously, as the Plastic Surgeon will be the one to over see it all, and do the major cutting and then the fixing the hernia and the final sewing up, it is him that we are starting with.
So I need to know what I am talking about without damaging his ego. I need to be firm that this is not about blame (he did the original surgery), but as we didn’t know it was EDS it wasn’t his fault that it was a mess, and he needs to know that! Doctors don’t like to be the cause of a mistake and he is being very defensive about it and that isn’t helping! The focus needs to be on me and how to go forward and not on whether or not it was his fault! I decided to get him to do it because he was the last to go in there, he knows where he stitched and what he did, which surely is better than a new doctor going in blind? I need to trust him and I keep telling him that, but I need him to really hear me today!
This is what I need him to hear:
1. ANAESTHETIC: I have always had problems with anaesthetics and now we know why! I take a LONG time to wake up and scare the living daylights out of everyone who then scare the living daylights out of me! So we have to have the Anaesthetist on side as well! EDNF is one of the two major world EDS organisations and this is their recommendation protocol for EDS patients having surgery. The second article is also one which one of the major EDS organisations recommendations.
2. STITCHES AND SEAMS: We need to talk about how and what he is going to do in terms of the actual stitches and how many and what they are made of, as mentioned above. This is a new technique that has been recommended to me (thanks Ramona!!). But will the surgeon even consider a different way of doing things? Will he hear me and read this or think he knows better?
3: CONNECTIVE TISSUE ISSUES: From the Gynae point of view we need a concise plan that I am comfortable with that will include removing all the extra bits and connective tissue etc, but I NEED to know that there is some kind of plan that gives me the best chance possible of having some success and not resulting in a worse mess and my organs being even more stuck in a web of connective tissue. Thankfully Gynaes deal with Endometriosis all the time which is a similar kind of problem though different. So I am hoping that the Gynae that we get to work with the Plastic Surgeon knows what he is doing in this regard!
4: HERNIA REPAIR: I have heard that they use mesh in hernia repair. Do mesh and scar tissue and EDS marry well? What does this mean for me? At the same time the repair work needs to be stronger than usual, so what other options are there other than the new techniques above?
5: RECOVERY: In the “olden days”, after illness or surgery, the next thing all patients did was REST, and no visitors! In time people realised that this caused all kind of complications like bed sores and thromboses, and in severe cases fluid on the lungs, and loss of muscle tone and all kinds of things, not to mention boredom and depression and other medical and psychological issues. They realised that in fact the best thing to do is to get up and walk as soon as possible! Even total knee replacements patients these days are required to be walking within twenty four hours of surgery! And so this is what has happened with all my surgeries and for good reason. HOWEVER, if you think of scar tissue as doing it’s “normal” job and doing it’s normal thing, that is great, but when your scar tissue is faulty and fragile and grows too much, and that every pull and tug is causing the scar tissue to grow more, and spread more, but also weaken, and that when you have fragile skin that splits and tears and doesn’t heal properly, movement is the worst thing you can do! No wonder my wound split last time, and no wonder the wound left holes for the intestines to pop through! So we need to come up with a protocol after surgery that means that my entire abdomen does not move AT ALL for as long as possible! And yet we still need to avoid thrombosis which I am at risk of, and so on. What does this actually mean for me? What does this kind of rest look like?
6: BLOATING & MY OAS: Part of the EDS mess is that our skin is fragile, and the inside lining of our entire gut (yes top to bottom, or mouth to bottom haha) is of course skin. Just a different kind of skin to our outside skin. And so being very fragile, it cuts and inflames easily and we have lots of food allergies, and IBS and bloating and pain etc etc. While this may seem irrelevant, when the surgery is done, the hernia needs to heal and have COMPLETE REST as I have said in the last point, and that would include no bloating! My hernia is under it’s most pressure when I am bloated, and so I am guessing that avoiding this bloating from food in the days or even weeks after the surgery would be a MAJOR help in not upsetting the wounds. But how? Do I live on a drip for a while?
I have a ton of other concerns, but they are more about my own journey and my exercise and keeping fit and so on. But I will work with my GP on those things. I think that these are all my major points to take in today to the meeting. I am so glad that I got up early and made this list!