Central apnea whilst awake after brain surgery

[Ratchick]

If the surgery proves necessary and the NHS can't provide it here, they DO sometimes fund overseas procedures, so there is some hope... and hopefully something as fundamental as not breathing properly (and the morbidity associated with that long term) would justify it over permanent ventilation.

It's a nightmare getting diagnosed, especially as a woman... I have endometriosis, which affects literally 10 percent of women, and yet takes on average nearly a decade to be diagnosed - and for me, it took 14 years of being told I was attention-seeking, exaggerating and just had a low pain threshold, or I was depressed and it was psychosomatic... FOURTEEN years of bleeding tumours and cysts in my abdomen and pelvis that has made it look like a frag grenade went off in my insides and left me with permanent severe pain and organ and nerve damage. Utterly ridiculous and sadly far too common. I wouldn't even mind but it's not hard to diagnose.

I've been waiting for a phone call to deal with spending up to 70% of the night with sats below 88 percent too... for three weeks now. Go figure. All the sleep clinic can do is keep pestering the doc because he's already agreed he needs to call me, but hasn't. But that doesn't surprise me, either, considering the absolute cluster f*ck that was trying to get my sleep study done in the first place. Honestly, I feel like my doctors want me to just stay at home out of sight until I quietly die, sometimes (or at least stop hassling them). Unfortunately for them, I'm far too persistent. But it makes me so angry for the people who don't have that energy to do so, or know they have to. So many people fall through the cracks and it's just not okay. Everyone deserves proper medical care.

Hopefully, your call will come soon, and they'll at least offer you some kind of NIV and/or oxygen to keep your sats up during the day.

[rachelcci]

The surgeon in the US is the Daddy of these conditions luckily, he knows how tricky the surgery is but didn’t seem phased at all, the surgeon here looked terrified when I turned up with my images and said I think you’ll die on the table, saying that though the UK is about 20 years behind the US and even surgeons here admit that. 

I tried the first time round to get funding as a surgeon who deals with this in Barcelona was meant to be doing my original surgery as at the time of diagnosis there wasn’t any surgeons here doing it. It was a complete and utter waste of time, the corruption I have uncovered I truly shocking and surgeons here aren’t trained in how to even look for these issues, not being funny but a 5 year old could play spot the difference between a normal mri and mine, it’s shocking how they’re not taught these things. I stared a gofundme to try and get to Barcelona and a few months later approached by a UK surgeon who had just started doing the surgeries, convinced me he knew what he was doing when in fact it couldn’t have been more the opposite, I was desperate and believed him but he’s left me in a worse state than I was to start with then just abandoned my care after he’d made his money! The Barcelona surgeon can’t even help now and he is experienced in this. I am trying but the costs are 3 x more expensive in the States and I’d need an air ambulance to travel now, I flew out to Barcelona normally before so it’s not easy. 
Oh it isn’t just my breathing, he’s put screws that are compressing on my vertebral arteries and shoved my head forwards and screwed it on so the rest of my spine is going to be buggered before long. 
So sorry you’ve had to go through a nightmare for diagnosis too. It’s appalling how they can say it’s psychosomatic! I was told for 18 months it was anxiety and depression! Even my respiratory consultant asked me recently if I thought my breathing could be psychological even with all the reports I’ve got the states it’s neuro! I was like yes course, I just think and make my oxygen drop low ?‍♀️ 14 years is horrendous! Sadly I hear all too often of many conditions being left undiagnosed for years, if it wasn’t for me doing my research and booking private scans I don’t think I’d know now. 
I know the feeling completely, I’d be emailing them everyday till he’s fed up and rings you, I spent a year emailing my respiratory consultant with data of my oxygen drops and still nothing! I’ve been to top neuro’s in London but they all just pass me on to the next person. It’s a joke how they can leave us like this. Don’t even mention the sleep clinic, they agreed to do my study in the day as well to see the difference, then told me afterwards they couldn’t report on the day study with apnea etc, what it’s literally the same study!! More like they sh*t themselves when they saw the results and didn’t have a clue what to do. I totally get that feeling, my surgeon actually wrote a paper on medical negligence in neurosurgery and states the payout for death is a lot less than injury so I’m thinking that’s his thought process with me. You sound just like me, I won’t give up fighting no matter what but agree it shouldn’t happen at all and sadly too many people do believe every word they are told and just accept things. 
Thank you, I hope your call comes soon too, in the meantime we keep battling on fighting the fight.

[Ratchick]

Ugh. That sounds awful. There are definitely differences in experience (the UK has fewer endo specialists too, and it amazes me that so many of them are still 40 or 50 years behind the medical literature). Unfortunately, that seems to be the case in the US too, sadly, considering the number of people I know over there who also struggle with the same thing. As is the difference between those who are female, chronically ill, etch. And let's not get into using unconscious women as exam specimens for students to perform pelvic exams during surgeries that aren't even gynaecological, without getting explicit permission. There are some huge issues in medicine, and that frustrates me because there are SO many decent people trying their best to help people... but there are also so many people that shouldn't be allowed near patients, too. Especially surgeons. The personality traits that make for good surgeons do not generally make for a good bedside manner. This is why, when you CAN find a good doctor, you have to cling on for grim death. I *still* miss my amazing ex-GP, and I genuinely would have moved to be in her new catchment if I wasn't bedbound and reliant on friends to keep a roof over my head.

[Geer1]

Yeah some doctors probably don't want to touch this because it is so out of their comfort zone. Unfortunately doctors probably think there is less risk to them to turn the case down then to try and fix the issue.

Sounds like you might be able to create a malpractice case if you can dig up enough support that the surgeon didn't know what he was doing and shouldn't have attempted the surgery. Not sure if you have thought about that or looked into it, obviously not a fun process but might pay to go to US and get fixed up by someone that knows what he is doing.

[rachelcci]

Sorry for the delay replying again! 
Yes it’s truly shocking how far we can be behind other countries. There’s isn’t even any medical literature from the Uk on my conditions, just great hey! Totally agree, I’ve friends in the US too and they have a real struggle too, they only have a handful of specialists over there for this, it shocks me it can be like this in today’s age! What??? Using unconscious patients without consent is absolutely awful!!! I agree completely and the ones who shouldn’t be in medicine ruin it for the ones who are good and genuinely want to help. Yes surgeons sure have a God complex! I have one amazing consultant and don’t know what I’d do without him, he’ll be retiring soon and I don’t even want to think about it. Sorry you’re having a rough time, I’m here if you ever need a chat. 
Yes that’s the problem, they are too scared to do anything with me.
That’s exactly how it is and they’ve even admitted that. 
I am currently looking into malpractice thanks, just isn’t the fastest of processes but fingers crossed.