Need All The Advice I Can Get!!

[CWest4882]

Hi, the short version of my story is that I have scoliosis (curvature of the spine) that cannot be fixed with the traditional method of metal rods because it is too severe, and there is an 80% risk of paralysis or infection. Despite some restriction on my lungs, it hasn't affected my breathing much until up about 6 months ago. I began to notice that I get really short of breath when active. My heart is literally pounding in my chest, and I feel like someone is pressing down hard on my chest so I cannot inflate my lungs fully. I also get a "pulsing" sensation in my head and ears that appear to be rhythmic with my heartbeat. So I am now undergoing lung function tests. The spirometry showed severe restriction, that was a significant reduction since I last had one in 2012, but I don't know how bad it is because I can't understand all the medical jargon written on the chart (if anyone knows a website or something I can use to interpret it, I would be so grateful!). Last week I also did an overnight sleep study to check my o2 levels whilst I sleep. I know a "normal" reading is between 95 and 100, but when I woke up at 5am it was down to 88. Does anyone know if this is low enough to mean I will have to go on a cpap machine at night? I know that's always been on the cards, as we were told when I was a child - but we thought I would be 60+, not 35! I'm going to try and ring the hospital this morning to see if they will give me the full results of the sleep study over the phone. I know normally I would have to wait to see the consultant, but my appointment isnt until the 8th May and I am going out of my mind with worry. I first went to my GP about this in January, so it's been a really long, dragged out thing and I just need to know the score and what I am up against now. Would really appreciate any help and advice, thank you in advance.

[Caspiana]

Hello CWest4882 .

I am very sorry to read about your dilemma. With regards to your lung function test, I think you need your respiratory nurse or your doctor to explain the results to you in layman's terms.

If your oxygen levels are dipping below 90 during sleep they may want you on oxygen as your organs may be deprived of oxygen which would, as you know not be good at all. Can I ask what your normal readings are when you are awake?

I know it's easy to say, but please don't panic. Stress just makes everything much worse and that includes breathing.

I hope you will let us know how things go for you. I'm sorry I'm not much help.

Sending warm wishes,

Cas xx 🌞🐞

[CWest4882 in reply to Caspiana]

Thank you for your kind reply. I have been in contact with my Drs secretary this morning and she said they haven't had the results from the sleep study back yet, but she will keep an eye out for them and let me know once the Dr has seen them. She said if they are normal then I won't hear back until I see the Dr anyway. So not quite the answer I was looking for, but it's something that will keep me going. Will definitely keep you informed, thanks again.

[Caspiana in reply to CWest4882]

You're welcome CWest4882 . Take good care of yourself. 🌷