Friday, 19th October 2012

How promising is it when your orthopaedic surgeon tells you he feels very sorry for you? I don't know about you, but I've found that most surgeons have nerves of steel and can deal with breaking bad news pretty well (sometimes to the patient's detriment!). This includes my orthopaedic surgeon. Now, we're very close - he knows next to everything about me, and most things that crop up - I tell him. I see him at least once a week usually (and have been for quite a while), which is probably the reason why we are so close. Don't get me wrong - he's as empathetic as I could want (not over-the-top, nor cold-hearted), but today I just realised how much he actually cares.

The number of problems that showed up in my 3T MRI couldn't have been higher. At the moment, I'm waiting for a third opinion - my surgeon has seen it, and so has the radiologist at the 3T MRI centre. However, the radiologist that always reports my scans hasn't seen it; this is the radiologist that my surgeon always works with. So we are waiting for his opinion. But so far, from what I've been told, I don't know what was actually right with it, in fact. I don't even know where to start!

From the AVM point of view, there's a chance of recurrence (this is yet to be confirmed), which actually isn't the worst part of it all. I also have some soft tissue swelling at the proximal joint, and something wrong with the bone (although I am not sure what). It's painful, for sure, and as far as I know, it's an osteophyte, and there's also some displacement of the joint. From what I gather, it's permanently and semi-dislocated-ish, but I could be wrong. All I know is that there's a sideways displacement of that joint. I have some erosion as well as loss of density around the eroded part. The worst part is that there's a fair chance that I have osteomyelitis going on - both the consultants so far have said that there is a bone infection. If this is true, I'm going to need to be on a super high dose of antibiotics for several months, which I'm sure will be great fun. Given my existing GI issues, I'm sure I won't be pleased at all if and when I'm taking them... Even on a basic dose, I get sick and it's just like having a stomach bug!

My swab also grew some colonies of bacteria; strange that, as when the nurse took the swab, I thought it was odd how she didn't get exudate on it. The tip wasn't even wet or even moist so I'm surprised there was overgrowth of anything...

I don't know what's next now. Surgery or no surgery - but I'm totally prepared for it to be a no... Going on all the new issues that have arisen, anyone would say that surgery is more unlikely than likely now. I don't think I'm as upset as I am scared. But we'll just have to see what else is found and what the radiologist says. I guess I'm prepared to take anything on to get over all this!

Monday, 23rd July 2012

I've been worked up about my dietetics appointment for a while now and am glad that it's over. I'm glad that it was really nothing to worry about and now feel really silly for offloading my pre-appointment panic on other people! Somehow, the appointment extended to an hour-long one and ended up in me feeling super overwhelmed and a bit crappy about how I'd let things get so out of control. It was all so intense and there were various points when I thought I was even going to burst into tears. It made me feel small, and I felt worse that my mother was there and sighing at responses that I was giving.

She suggested I visit a counselor due to my apparent slow decline into eating disorder but I declined as I think I'm going to be alright without this. I've just had enough of visiting people who tell me bad things about myself and feel that all I need is some time to sort everything out. I was also told that it's a wonder I'm surviving how I am, and that if I don't change, I'm at serious risk for what seemed like every medical condition on earth, including heart disease, osteoporosis, cancer, and the list goes on. Despite being a "healthy weight" BMI-wise, I'm deficient and depleted in almost everything. It's just best not to think about it, I suppose.

 I'm pleased too that the weather was nice today. I woke up at midday and didn't really do much until it was time to leave for my appointment. The lady was nice, but I knew I wasn't going to "like" what she said, as such. Anyway, I have now been put on protein shakes to keep my nutrition high in this run-up to my next surgery, which I hope will take place soon! I am seeing my vascular surgeon tomorrow to ask his opinion on whether I should get another angiogram - as I'm not sure if the AVM is completely obliterated. If I'm right and there is indeed some AVM left, I wouldn't feel comfortable with going through another surgery knowing that it's not going to work. I'm apprehensive but excited for tomorrow because it might give me the chance to make up my mind about how I really feel right now. I did, however, say that I wasn't going to visit this surgeon for a few months (it's only been a month so far) because I only ever get upset after the visits to the vascular clinic. I hope that tomorrow, this won't be the case and that I'll be able to get my angiogram done! Hope you have had a wonderful start to the week and for all those in the UK, enjoy the weather while it lasts!