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Central apnea whilst awake after brain surgery
#11
RE: Central apnea whilst awake after brain surgery
A PS: an NIV such as ResMed's Astral 150 can be used day or night, per individual medical needs. It also has a built-in battery pack and can run off it for about 8 hours. It will also accept and run off external battery packs. So this is a portable setup.
Dave

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#12
RE: Central apnea whilst awake after brain surgery
I view this as being both a short term and long term issue.

In the short term I feel like they should be using supplemental oxygen or a ventilator to maintain your oxygen saturation.

In the long term trying to correct this issue would be the preference. This sounds like a neurological issue so a good neurologist/neurosurgeon are probably your best bets. You also want to be seeing a pulmonologist if you aren't already. If there is such a thing as a doctor that specializes in both neurology and pulmonology that is the guy you probably want to see.

If there is no way to reverse this issues then I wonder if this would be an application for a breathing pacemaker (google says can be used for patients with diaphragm paralysis).
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#13
RE: Central apnea whilst awake after brain surgery
Hi all, apologies I didn’t get notifications of your replies. Many thanks for the links and advise certainly raised some good points.
I do find it physically harder to breathe whilst awake, this starts a few minutes after waking and lasts until I sleep. They are checking arterial blood gases next but they’ve wanted to wait as I have a connective tissue disorder.  I have had tests that show I blow off way too much CO2 but not invasive tests yet.
Very interesting about the carotid bodies, I will have to do more reading on this. I do have significant alteration in ventilatory control and an altered relationship between between minute ventilation and co2 production. I did try breathing physio to try and reset the central chemo receptors but not surprisingly didn’t help at all. 
I also had autonomic testing which shows a severe baroreflex deficit, have no homeostasis with my BP and all results all point back to the medulla being the issue. 
I agree it is both a long and short term issue. I have been trying for over a year to get help with conservative treatment but as the specialists can’t understand it I’m not getting very far, I’m now researching myself to find something that may help. 
They have said that I do require extra surgery to relieve the compression and they think that the respiratory failure could reverse once the compression is relived, unfortunately there isn’t anyone in the UK capable of doing the surgeries needed as I’ve been left in quite a bit of a mess after the first one. 
I have seen a pulmonologist but as all lung tests are normal they too don’t know how to help me. I am trying to find a neuro pulmonologist but again not having much luck. 
I wonder if a pacemaker could be fitted whilst I am waiting to try and get the surgery abroad, my neurosurgeons have said that my respiratory centres could shut off at anytime so this may be a wise decision in the meantime, I will look into this more, thank you.
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#14
RE: Central apnea whilst awake after brain surgery
That's so frustrating but sadly, doesn't surprise me (especially after last year).

I'm still trying to kick my own sleep doctor into gear with my horrific nighttime hypoxia... if I can ever speak to him!

I hope that you are able to find someone to perform the necessary surgery and that it also process to help, and I'm so sorry that you're having to deal with this, but I definitely think they need to be doing some inpatient work with you and get you on at least oxygen, if not NIV during the daytime.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#15
RE: Central apnea whilst awake after brain surgery
How can your lung tests be considered normal if you are not using your diaphragm and are not getting adequate oxygen supply? That makes no sense to me.
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#16
RE: Central apnea whilst awake after brain surgery
I guess what they mean is there's nothing "broken" in the lungs, that they can fix, it's all neurological, and the pathway between the brain and diaphragm is there (hence the breathing is okay while asleep) but something is interrupting the signals while awake.

I would definitely look into diaphragmatic pacing, to be honest. That would seem like a good option.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#17
RE: Central apnea whilst awake after brain surgery
If that is what they meant (lungs work fine other then you not using them properly) I would be a bit annoyed that they don't have any other thoughts or ideas on the functional aspect of diaphragm etc.

Or was there a chance you saw pulmonologist when diaphragm was functioning ok due to clonazepam and things did appear normal to them?

Edit: For the record I don't know anything about diaphragm pacing just had the idea and googled it. It is a thing but I don't know how rare or invasive it is.
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#18
RE: Central apnea whilst awake after brain surgery
From my understanding, it's normally used for when the diaphragm is paralysed (eg. damage to the phrenic nerve etc) but I can't see why it wouldn't help if the neurological issue is higher up... but absolutely that's something that is worth asking about if it's not been discussed.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#19
RE: Central apnea whilst awake after brain surgery
Hi, sorry for the delayed reply again. Yes nothing surprises me either after this past year unfortunately.
Sorry you’re having a rough time too, keep pestering them, everyday if you need to it’s appalling how we can just be left!
There a surgeon in the USA who can help but that’s a task in itself.
I’m hoping now they’ve started opening the hospitals back up they’ll get a move on and find something to help conservatively soon.
Yes sorry that’s what I meant, there isn’t anything physically wrong with my lungs that is causing the breathing issues, they’ve said it’s not a lung disorder but neurological.
I’m certainly thinking the diaphragm pacemaker would be a good choice, how they’ll take to the suggestion I don’t know though as they’re terrified of putting me under with how bad my breathing is and as they fused my skull to my neck I’m going to be hard to intubate and them be careful that they don’t move me too much and add to the compression on the brainstem, it’s worth me asking though.
Oh believe me I am annoyed, I’m having to try and piece things together myself and relay back to them as they simply haven’t got a clue, or it appears that way anyway. I think I’m confusing them as it’s the difference in day and night but still they should know what would help me.
My diaphragm still doesn’t function with the clonazepam it just makes my breathing a little bit less intense.
I will be bringing the suggestions up thank you, I’m meant to be getting a phone call this week to discuss things further but I won’t hold my breath, no pun intended lol!
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#20
RE: Central apnea whilst awake after brain surgery
If the surgeon in US is pretty sure that he can help (and has the credentials/experience to back that up) that portrays a lot more confidence then what you are getting with local doctors so far.

I imagine the biggest issue would be financial. Sometimes there are ways to get stuff like this covered or partially covered (I would think if there are no local qualified surgeons that would be a valid reason). Here is a link with some details on the subject.

https://www.nhs.uk/using-the-nhs/healthc...treatment/

Sometimes a gofundme can work wonders in situations like this if you have a way to get word out.
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