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!
Sharing the ups and downs of life as a twenty-something year old medic. I have Ehlers-Danlos Syndrome, postural tachycardia, persistent hypotension, a platelet function defect, gastroparesis and intestinal dysmotility, and am overcoming AVM and osteomyelitis. I am also TPN-dependent. Follow the rest of my journey at www.nogutfeelings.blogspot.co.uk
Friday, 19 October 2012
Saturday, 13 October 2012
Surgery preparations
I can't believe how quickly things have started moving now. Of course, I know that there's every chance of things falling through and not happening. In a way, I'm more prepared for the "no" than the "yes" now, even though the sequence of events has seemed to occur in favour of the surgery happening.
I went to see my orthopaedic surgeon yesterday (I've been a couple of times since I last posted, but have just been super busy with uni). I had to miss a lecture for the appointment, but was glad to have attended as we spoke for around an hour about what would happen.
From what I gather, the surgery will involve extraction of stem cells via a needle, and the processing of these cells with a special machine and then the impregnation of the stem cells into my hand. I'll get a synthetic skin (mesh-type thing), and will also have stem cells injected all around the atrophic joint and pretty much everywhere, to try and restore all the function and aesthetics. So far, I have some sort of disability in the proximal joint, and basically nothing at the distal joint. There's no nerves, no muscle, a malfunctioning tendon and the bone mass is disappearing.
Yesterday, I was far from expecting preparations to begin. I have a form for a high-res MRI next week in the newest 3T MRI scanner, and had a plethora of bloods taken. I now have some really lovely bruises from the horrible nurse who "treated" me, and had a load of bleeding last night because of a dressings disagreement. I had lots of culture swabs taken to ensure the bacterial load is as low as possible as well. It's a good job that things are happening now, since my orthopaedic surgeon said yesterday that I've taken two steps back from where we were the last time he saw me.
The catch, however, is the cost. And the fact that only one private hospital is capable of hosting my surgeon and I for this procedure to take place. The worst bit? My orthopaedic surgeon won't be carrying this out. It'll be the plastic surgeon I saw about six weeks ago. I can't say I liked him too much, but as long as he can get the job done, my orthopaedic surgeon can still take charge over everything, and I can still see him as though he's done the surgery. There's also only a 20% chance that this will work (something I have not yet told my friends or family), and if not, then amputation is the only way forward. Even my orthopaedic surgeon says so, and he's been the main anti-amputation guy all along. I really, really hope this will work in my favour!
I know it's been a really long post, but I haven't written for ages. I've been so busy with uni stuff, and have a couple of lectures to review this weekend. But thankfully, that's going to be it for today and tomorrow! I'm apprehensive about this surgery, for sure, because it's quite a big one - and I still don't know if it's the right thing. I'll only know, once it's over.
I went to see my orthopaedic surgeon yesterday (I've been a couple of times since I last posted, but have just been super busy with uni). I had to miss a lecture for the appointment, but was glad to have attended as we spoke for around an hour about what would happen.
From what I gather, the surgery will involve extraction of stem cells via a needle, and the processing of these cells with a special machine and then the impregnation of the stem cells into my hand. I'll get a synthetic skin (mesh-type thing), and will also have stem cells injected all around the atrophic joint and pretty much everywhere, to try and restore all the function and aesthetics. So far, I have some sort of disability in the proximal joint, and basically nothing at the distal joint. There's no nerves, no muscle, a malfunctioning tendon and the bone mass is disappearing.
Yesterday, I was far from expecting preparations to begin. I have a form for a high-res MRI next week in the newest 3T MRI scanner, and had a plethora of bloods taken. I now have some really lovely bruises from the horrible nurse who "treated" me, and had a load of bleeding last night because of a dressings disagreement. I had lots of culture swabs taken to ensure the bacterial load is as low as possible as well. It's a good job that things are happening now, since my orthopaedic surgeon said yesterday that I've taken two steps back from where we were the last time he saw me.
The catch, however, is the cost. And the fact that only one private hospital is capable of hosting my surgeon and I for this procedure to take place. The worst bit? My orthopaedic surgeon won't be carrying this out. It'll be the plastic surgeon I saw about six weeks ago. I can't say I liked him too much, but as long as he can get the job done, my orthopaedic surgeon can still take charge over everything, and I can still see him as though he's done the surgery. There's also only a 20% chance that this will work (something I have not yet told my friends or family), and if not, then amputation is the only way forward. Even my orthopaedic surgeon says so, and he's been the main anti-amputation guy all along. I really, really hope this will work in my favour!
I know it's been a really long post, but I haven't written for ages. I've been so busy with uni stuff, and have a couple of lectures to review this weekend. But thankfully, that's going to be it for today and tomorrow! I'm apprehensive about this surgery, for sure, because it's quite a big one - and I still don't know if it's the right thing. I'll only know, once it's over.
Saturday, 6 October 2012
Start of new things
I know I haven't written for ages, and I can only attribute my online absence to the changes that have taken place in my life and the current circumstances. Now, I am a university student; a medical student, and I can't believe that I'm here!
So, I know that there must be some people around that want to know how I'm doing, medically. Lately, I have met a few new AVM friends, people with young children suffering from AVM and others who I've been lucky enough to meet "just because".
As for my own situation, I am trying to get referred to a different plastic surgeon nearer my university. The man I saw previously doesn't work too far from me, but I figured that I may as well find someone nearer since I didn't feel like I got on well with the previous guy. My orthopaedic surgeon is still doing things for me that I thought nobody ever would; suggesting things and doing things before I even ask. My vascular surgeon has taken a back seat, which doesn't really bother me - and in fact, works nicely since my orthopaedic surgeon has taken a step up. It means I don't have to miss too many lectures and practicals too!
My orthopaedic surgeon has fallen sick, however, and I am so worried about him! His secretary says that he's not sure if he'll be in clinic next week, after having missed this week. He must be quite ill if his illness means he must take more than a week off - I just hope that he gets better as soon as possible. My vascular surgeon has said that in the meantime, if I don't see my orthopaedic next week, that he will see me regularly until my orthopaedic is back. I am so lucky to have so many doctors who are willing to stand up and look after me when others aren't able to.
I have had numerous infections in the past month, but have also managed to maintain myself at a stable weight, although this takes much effort and preoccupies my mind all the time. I have been very busy with all-things-uni, though I know that this is only set to get worse, so I am trying to keep on top of everything while I know I still can.
There are so many more things that have happened since I last wrote, but there is no way I'll be able to fit it into a longer-than-average sized post! I break up for Christmas break on the 21st December, and I have no days off until then - now that I'm almost on top of all my work, I should be around more than I have been. Meanwhile, please take care and stay well!
So, I know that there must be some people around that want to know how I'm doing, medically. Lately, I have met a few new AVM friends, people with young children suffering from AVM and others who I've been lucky enough to meet "just because".
As for my own situation, I am trying to get referred to a different plastic surgeon nearer my university. The man I saw previously doesn't work too far from me, but I figured that I may as well find someone nearer since I didn't feel like I got on well with the previous guy. My orthopaedic surgeon is still doing things for me that I thought nobody ever would; suggesting things and doing things before I even ask. My vascular surgeon has taken a back seat, which doesn't really bother me - and in fact, works nicely since my orthopaedic surgeon has taken a step up. It means I don't have to miss too many lectures and practicals too!
My orthopaedic surgeon has fallen sick, however, and I am so worried about him! His secretary says that he's not sure if he'll be in clinic next week, after having missed this week. He must be quite ill if his illness means he must take more than a week off - I just hope that he gets better as soon as possible. My vascular surgeon has said that in the meantime, if I don't see my orthopaedic next week, that he will see me regularly until my orthopaedic is back. I am so lucky to have so many doctors who are willing to stand up and look after me when others aren't able to.
I have had numerous infections in the past month, but have also managed to maintain myself at a stable weight, although this takes much effort and preoccupies my mind all the time. I have been very busy with all-things-uni, though I know that this is only set to get worse, so I am trying to keep on top of everything while I know I still can.
There are so many more things that have happened since I last wrote, but there is no way I'll be able to fit it into a longer-than-average sized post! I break up for Christmas break on the 21st December, and I have no days off until then - now that I'm almost on top of all my work, I should be around more than I have been. Meanwhile, please take care and stay well!
Subscribe to:
Posts (Atom)