What is the point.

Posted , 3 users are following.

I'm sorry to be negative on here but has anybody noticed the common theme in all our discussions. Doctors don't give a **** I have been fighting for surgery for the last year and after it taking 10 months to organise then being cancelled twice I'm right now sitting in the waiting room. I have stage 3 and have had all the treatments available on the nhs over the last 5 years, just been in for my consultation and the surgeon has looks at my arms and legs and picked out 4 areas the size of a penny that he will operate on. What an absolute waste of time, I am feeling so deflated and honestly as though there isn't much point in bothering, no disrespect meant to anyone one on here but I can't spend the next 40 years feeling this way. Please does anyone have any ideas on how we can all get some help because I'm honestly at breaking point, I cannot and will not go on like this. I need some advice on how to get more substansal surgery or something please! 

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  • Posted

    Don't be sorry. We all have these bad and depressing days. Just be as strong as possible and it will pass. My gosh I know I have had so many days where I just break down crying. I am just getting over a really bad one on my leg where I had to walk like a hunch back and my whole body started hurting from the way I had to hold myself. I couldn't even walk my daughter to her bus stop or take my youngest to daycare because it got swollen to about 5inches around, all for a tiny little half an inch lump, on the surface anyways.

    I have felt hopeless coming out of many a doctors appointment. A few months ago I was basically told not to come back anymore to my general MD because they have nothing for me. They told me you need to go to your dermatologist because we have run our course with you. So that, needless to say, warranted a call to my mother balling lol and I think I cried for 20 minutes in the bathroom of the hospital before I could finally straighten up enough to go home. Then I had to call this dermatologist who I had seen before and I don't really like her. Several people have said she is highly recommended and possibly the best in my city Montreal. But she is hard to deal with, she is dismissive of most things I have to say. But I sucked it up and I am beign followed by her right now. She threw some more drugs at me, Doxitab, as you might have read in some other posts of mine. She also refused to give me a referal to a surgeon because she said my HS is not bad enough, even though it is stage 3.

    I think this may also be the same thing for you, that the surgeons can only operate on the single ones that are not clumped together. The problem is that when you ahve so many clustered together, and they operate there, they might find halfway through that there is much more deeper down or that they can not remove ALL of it in such a simple procedure. I am guessing that this is only local anesthesia and they are not actually putting you to sleep for this. And that is the reason they are not doing the bigger stuff, that would require you being put to sleep. I think they are waiting because they know there will be more. I read that it is a problem to have to many single scars becaue then, if they need to operate on the same area it will be very hard for them to work with the tougher scar tissue.

    It really sucks I know because I have a real mess under my left arm. On the surface they all look like they seperate but I know and I can feel in some spots that they are all connected. When I had my surgery 5 years ago, the doctor told me it would be about a 1 inch incision, but when he started he said he might not get it all because it is much more than he thought and the incision ended up being more than 2inches long across my entire armpit. AND he still thought he didnt get it all. I almost passed out because at one point he cut too far out of the area he had frozen and he had to give me another shot to kill the pain.

    To be wuite honest I don't have advice on how to get more substantial surgery. I met with a qurgeon a while ago when my scar blew up with another cyst and he was a real jerk. He jsut would not stop saying that the reason I have this was because I had been a smoker. He repeated it about 50 times randomely while I was meeting with him. He looked at my scar and did not even touch to feel underneath and then said 'ya sure I can operate for you, but it probably won't help' He is the only one who said he 'should' be able to put me to sleep (I asked becaue I was horrified by the first one I had where he cut into feeling flesh). So I asked 'what do you mean 'should' ' and he told me that maybe when the day comes, there will be no anesthesiologist available, and I would also have to drive out for an hour and a half to where he does his regular schedule in a rural area. So I said forget it. First off he is a jerk and second he can't guarantee even to put me out. Unbelievable right? I don't even know how this guy is allowed to practice surgery. Anyway my point of all that was lol you can ask them to put you out and go into the tissue deeper. You should ask them to see a colleague surgeon who can give a second opinion. You should annoy them until they finally say, 'I am going to get this lady out of my hair' lol That is all I can think of right now, because if they don't think it is bad enough to do a large removal or graphing, then unfortunately we are stuck with their judgement right?

    Another bit of info that might help you understand is that, when a surgeon operates, he can't cut in all directions. They generally need to cut a line at a time. This is because of the way we heal. If he cuts in, for example, a start pattern or all jagged and crooked, it will never heal, and the scar tissue left over will be so tight that you can not lift up your arm (if it were in your arm for example). So, if you ave a cluster of flare ups, the only way they can get rid of this, is to cut the whole area out. And then they would have to put some skin from another part of your body back. The only other option would be to do one section at a time, btu this is useless because the chances are that by the time the first section is closed, it is already infected again by the section they did not remove.

    I hoep this information helps and doesnt just make you more depressed. I know I didn't say that doctors do care, but in a way they definitely do. They are foloowing what they have learnt in med school and unfortunately we can't expect them to all devote their deepest care to us. They have so many others who have legitimate issue too and unfortunately, most doctors so see that this disease just sucks ***. There is not much of anything they can do differently without jeopordizing themselves legally or even morally. YOu never know when there is a nut case who says 'GIVE ME THIS SURGERY!!' and tehn when it goes wrong they sue the crap out of that doctor and ruin his career because it did not go the way they wanted it.

    Keep your head up and remember that this is not what your whole life is about. It is also just a testiment to how strong and awesome you are for living with this.

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  • Posted

    Sorry everyone cause I always write a little tiny novel in this forum lol I'm a typist for a living and I type fast so it just kinda gets away from me.
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  • Posted

    Thank you, you are right I was having a feel sorry for myself moment! Surgery has been done, I was put under for it and took about an hour and a half so hoping the results will be worth it! I think I need to find out about more medical treatments cus there must be something they can do! I've been talking to my mum about this too and we are going to contact a man in the uk who is doing research and try to raise some money to help smile thank you again I'm feeling more positive again now! X
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