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Surgery finally??? - DJStrangers112358 - 03-21-2014

Before I get into current events I'll give some background.

I was born with an unusual form of spina bifida which means that my sacral spine is incomplete and my nerves have "learnt" to travel outside the bone when they feel like it. Due to the area of the damage I am able to walk with absolutely no difficulty. The only real issue I have from this birth defect is back pain that these days means I wake up almost every morning unable to move my legs. Fun and games....

Other than that I was born with lax ligaments which was not at all helped by the modern, tap and ballet dancing I did until about 2008. The biggest issue that this gives me is that my right (and dominant) shoulder falls out of its socket in every possible direction. Because of the pain and difficulty moving my arm, not to mention the difficulty of putting my shoulder back in when it drops out, I had my first surgery in 2009. Mind you, I had been waiting for that surgery since 2002 and was extremely frustrated with how long it took.

About 6 months after going through the entire rehabilitation with the physiotherapists and occupational therapists we thought that it was all going to be okay. Less than 12 months later my shoulder began to start dropping out again. This time I put up with the pain for quite some time and even went through extra physio before heading back to the Orthopaedic Surgeon - who can only be described as a complete c*nt.

In November 2012 my surgeon told me he would operate in February 2013 so we were making all the necessary plans. When we returned to see him in February he acted as if he had completely forgotten that he'd even seen me before. To be honest it was a really good thing that my husband wasn't with me that time because he would have bashed the living cr*p out of him. I was not at all impressed but I was also aware that attacking the surgeon wasn't going to help.

Since then I asked for a second opinion from another surgeon who decided that all I needed was physio and tried to tell me that my shoulder had never dislocated in the first place. He also said that I "quite obviously" was not (and had never been) in pain. Apart from the fact that he treated me completely and totally like cr*p I was so angry that I tore up the paper I was supposed to hand to his administration staff and promised myself I would never see him again.

My GP has been sending in referrals almost every time that I've seen him now and we finally received a couple of letters from the hospital. The first was for a review appointment on April 1st, which was followed not all that long later by a phone call asking whether I still required the surgery. Two days after that phone call I got the letter for the pre-admission clinic on April 28th and another for the surgery on May 14th.

Now we just have to wait and see.... and hope that he manages to get it right this time.... I have to be completely honest though that I'm not going to hold my breath.

The other thing that concerns me a little is that this will be my first surgery where my alters are visible (if that's the right word). I don't know how they are going to cope, and I'm not sure how the surgeons and nurses will cope if I wake up as one of the kids.... So anxious about this.

RE: Surgery finally??? - The People - 03-21-2014

Is the right word congratulations? So many stupid doctors out there. We took 30 years before we self dxd as having Celiac because it was "all in our head". We recently had physio for newly developed Sciatica. The young woman noted that we could endure a lot of pain. Practice. Even for people who don't have your physical stuff adapting to physical pain s part of the process.

As for waking up early, been there. What we have come to realize through the many and varied procedures we have had is that we do tend to wake before others. We had a scope done by a doctor with a brain. We had told him that we wake up so he gave us 4x the amount and we still regained consciousness although felt no pain and couldn't speak. He didn't believe me at first until I told him what I heard him say (nothing bad). he was stunned. This was not a full surgery so I wasn't under like you will be. And this was the first time where someone other than a big has awakened after surgery. (We had 2-3 others). I don't know how much connection you have with the littles but perhaps you could ask them where they would like to spend the time during the surgery. Create a special room for them to hang out in; Making it less likely for them to wander out. Two is very forward. We were comfortable enough with the gyne to tell her about our condition and Two coming forward got us a private room so some good came out of it. It was 5 years ago and I can laugh now but oh my was I embarrassed at the time. What you share is personal to you but if there are things you are aware of like less sensitive to anesthetic (how do you do with freezing at the dentist) the easier it will be for everyone. I hope I haven't scared you. You have an advantage over us in that hubby will probably be there. If a little does show up perhaps he can drop by post op and suggest she stays inside until you go home. Wish you all the best.

RE: Surgery finally??? - DJStrangers112358 - 03-23-2014

Thanks for the suggestions. I'm going to have a chat with both my hubby and the kids about the surgery and see if we can create a room for them for that time.

On the subject of anaesthetic: Iweusually need more than they would normally expect and wake far earlier than they would like. My last shoulder operation I woke up while they were re-plastering my wrist - and my arm/shoulder hadn't yet been set - so they had to knock me out again.

Another complicating factor is that we have Reynaud's syndrome meaning that if webecome cold or hot we change colour. During one of my early ECT treatments I turned blue whilst on the table under the anaesthetic due to my body getting cold and they had to go into full panic stations to make sure that I was still breathing. We had probably better have a chat to the anaesthetics about that prior to the surgery.....

RE: Surgery finally??? - The People - 08-26-2014

Good idea. And they can get hold of charts to verify that you are not making it up. My doctor was going to put it on my chart but decided that doctors would miss/ignore t.