Sleep Study Results

[notme]

Sleep study results weren't good. I have to go back tonight for a second study--this time with CPap.

Apparently I stop breathing quite frequently, which is likely causing the daily headaches. They couldn't tell me, though, if the low O2 sats were from the lungs or from the muscles surrounding them.

My pain doc says I should ignore the ALS doctor and have the surgery on my neck I'm not inclined to discount a trained neuro's opinion based on the pain doc's opinion.

Do you folks agree? Pain doc said that even with MS or ALS--that fixing my back and neck wouldn't make either of those conditions worse.

I'm back to wondering now if I should let them fix my back or not. The pain doc thinks all my problems with falling, weakness, muscle loss, etc are all being caused by spinal problems.

What would you all do? Thanks in advance for opinions.

 

[Alyoop]

Patty, so sorry about the bad sleep study. The upside is that, they can work entreatment and of course the cause.
About your neck..... It so hard to give any opinion without comprehensive EMG and ncs results. Comprehensive, not what they did to you last time. Before a surgeon does a neck fix up, they should have EMG evidence of the radiculopathy first. So either way, you should wait till that dastardly EMG is done. It really should give you the ammunition you need to make an informed decision, rather than your pain doctors opinion.
When do you have the EMG from the ALS specialist? Hopefully soon

 

[notme]

EMG and MRI is next month. I opted to wait until she could do it herself. If the arm is just nerve damage or neck damage--that's good--because all the other things are upper motor neuron, I think--the legs--which would be good.

Thanks Ally. I just was surprised the pain doc said to ignore the neuro. I can't imagine what some people that see a bunch of different doctors do. I'm confused with just the pain doc and neuro.

Just got home from cpap study--no am headache--just lots of swelling in my face.

 

[notme]

I have another question...the Neurologist is concerned that part of my problems with breathing is weakened muscles--does that mean that the c-pap machine they ordered might not be the right thing for me to use? Do I need to ask her before I use it?

She ordered the sleep study--and they found I have pretty bad sleep apnea and my O2 sats drop pretty low when I sleep. I go to see the pulmonologist next week. Do I need to let the neuro know that they've ordered a c-pap? I read a post by Barry that it might be bad to use if it is in fact my muscles rather than simple sleep apnea.

 

[trfogey]

Wow, it sounds like you have a whole bunch of medical folks who are focusing on their small piece of your medical puzzle without regard for the whole puzzle. I'm sorry to hear that this is happening to you.

The sleep clinic should not be ordering any equipment here. They should report the results of your sleep studies to the referring physician (the ALS clinic neurologist?) and their job, for the moment, is finished. The referring physician can and should make the call on what equipment should be prescribed. He/she may decide to go along with the sleep clinic's recommendations or not, as appropriate with regard to other medical findings.

And what you remembered reading from Barry is correct. CPAP is not always appropriate for patients who have neuromuscular and muscular diseases that cause progressive weakness in the respiratory muscles or that prevent the respiratory muscles or the lung tissue from strengthening themselves against the additional pressure from the CPAP.

 

[notme]

Thanks, trfogey

I did try to call the neuro--but can't get through to her or her nurse. The sleep clinic already sent the order in for the cpap--as apparently my apnea is pretty severe--they put a rush on it to get it to me ASAP.

After reading Barry's post--I'm worried that it could make the other issues worse. The one benefit I found with the c-pap last night is that I didn't wake with the usual splitting headache--but she did tell me that they kept having to increase the pressure, as my sats were still dropping on the c-pap.

I haven't seen their doctor--the techs do the study--then the doctor writes the orders based on the results. I don't mind at all trying the c-pap--but I don't want to make my breathing issues worse than they already are, either. Getting air in isn't usually my biggest problem--it's getting the air OUT again--which is why she sent me and was concerned that I was using too much accessory muscles to breath in and out.

I do have her email and I made the appt with the pulmonologist just to be sure I'm using the right thing. Whatever is wrong with me--breathing is becoming my biggest concern as literally walking up the stairs makes me unable to breathe. I've only ever been this sort of breath when I had the clots--and I'm pretty sure I don't have clots again as my coumidin levels are within normal limits.

Apparently, though, even on the c-pap my sats dropped below 90. I'll email the neurologist and ask her if I should be on bipap instead.

Thanks

 

[trfogey]

notme,

When you see the pulmonologist next week, you'll get yet a third opinion on what type of machine, so be prepared for more confusion. Hopefully, they'll talk to each other and get it all sorted out.

I went through something similar when I got my BiPAP. Sleep lab said one thing, pulmonologist said another, and I had an ALS diagnosis in hand. I listened to my neuro and never went back to the sleep lab or the pulmonologist and I'm still here three years later. The ALS clinic changed my BiPAP settings when necessary -- trained their own RTs how to do it, neuro signed the orders.

Good luck.

 

[notme]

Neuro emailed back. She said to make sure the pulmonologist knows about the muscle weakness as she said BiPap would be better for me. Thanks again

 

[Al]

If there is ANY chance you have ALS, you need a Bipap not a CPAP. You can't breathe out against a Cpap. Period. Somebody better get this right or you're screwed.

AL.

 

[notme]

Problem is the doctors all farm out things to another doctor. She wants me to let the pulmonologist decide next week--so I'll take the email to him and the copies of her medical records as well.

They were trying to hurry the treatment of the breathing problems--but the sleep study people never had me see their doctor--just did the study--and found apnea bad enough that they rushed the order to get me treated as fast as possible. I won't do anything until the pulmonologist sees the results of the study and the neuro's email.

The problem here is that I don't have a diagnosis of ALS--just things pointing that way to the ALS Neuro--I didn't know it would matter where I had the sleep study she ordered done--guess I should have had it through that hospital rather than the one close to home.

I came here because I figured you guys would know who/what I should be seeing/doing. The pulmomologist can test for weakness in the respiratory muscles, right?

I did tell the sleep study people about the possible diagnosis--but I don't know if she let the doctor know that wrote the order.

 

[trfogey]

Hopefully, the pulmonologist will do a complete pulmonary function test on you and shed more light on, if not settle the question of muscle weakness or not. Unfortunately, that may just introduce more confusion into the mix if the pulmonologist isn't very familiar with managing both sleep apnea and (potentially) progressive muscular weakness caused by a neuromuscular disorder.

Which is what happened to me back at the beginning of my BiPAP days. Sleep clinic said some apnea and wanted CPAP. Pulmo said "Yes, you've got some muscle weakness, but not enough to need BiPAP yet. Just prop the head of your bed up on blocks and add a pillow or two under your back". Easy for you to say, doc -- you aren't the one who spends ten minutes fighting for air with your heart racing and feeling it's going to explode out of your chest every time you lie down.

Fortunately, my neuro is an ALS researcher and knows that the latest research says early BiPAP == longer survival. And he has the testicular fortitude to ignore the pulmo and the sleep clinic and manage the BiPAP settings himself. He looks at the sleep clinic's recommendations, sets the BiPAP IPAP (inhale) pressure just below what they called for, sets the EPAP (exhale) as low as he can and still keep my internal O2/CO2 balancing mechanism working correctly, sets a backup rate into the machine so it pushes a breath into me if I go too long without one, QED. When I go to the ALS clinic, the RT clamps a recording PulseOx on me and tweaks my settings appropriately.

All of that long-windedness is meant to show that you've got to have one doctor that's willing an able to see the whole picture and not just their little piece of the pie. And that's what the ALSA and MDA sponsored ALS clinics are great at doing. It's not just convenience for the patient -- it's a way to keep all the caregivers focused on the patient and not just their specialty.

 

[notme]

I'm seeing the ALS clinic doctor. But she's referred me for the sleep study. I just assumed that was because she wanted the referring place to treat it.

I had no idea that using a C-Pap could be bad---they are supposed to be bringing it on Monday--but I won't do anything with it until after I see the pulmonologist on Thursday.

This clinic is a multi-disciplinary clinic--perhaps she's waiting until she can confirm a diagnosis?

Will a bi-pap cause problems if a c-pap is all I NEED? Should I call the sleep doc Monday and make sure he's aware that the neuro believes that muscle weakness is causing my breathing issues--not just my lungs?

I feel like an idiot--I've worked in this field most of my adult life--you'd think I'd know--but I'm totally unfamiliar with c-pap or bi-pap.

She's the one that mentioned the muscle weakness to begin with -- I just suspected it was part of the problem with my daytime breathing. Breathing is rarely 'automatic' for me now. I think to breathe if I want enough air in. Two months ago I could walk to the bathroom and back and still breathe. Now, I can't.

I'm almost 100 miles from the clinic--so going there for every little issue would be difficult at best. I'll email her again and see if she'll look at the results and tell me definitely what to get.

My o2 sats drop during the day as well--I have a monitor--but they drop significantly when I'm sleeping. If the bi-pap won't cause anything to get potentially worse--I can see if they will prescribe that instead.

I haven't seen the results, the tech read them--but after the c-pap night, she did say my sats still dropped and she had to adjust the pressure.

I absolutely can not lie flat. I can't breathe flat. Again, I'm more complicated, I guess, because I do have COPD as well--so my lung function isn't the greatest. I don't think oxygen at home is far off.

I was actually surprised that I didn't even see a doctor for the study--not before or after--just the tech.

 

[trfogey]

All BiPAP machines that I know about can be used in CPAP mode, as well. If they don't have a specific CPAP mode (unlikely), just set the EPAP and IPAP to the same pressure. Obviously, there is a difference in cost -- more features == more expensive -- so a BiPAP machine will cost more than a CPAP. Even within the range of machines classified as BiPAP/VPAP/AVAPS, there are significant differences in feature sets and, of course, price.

Your sleep clinic's haste to get you a CPAP when there is a possible diagnosis of neuromuscular weakness and a confirmed diagnosis of COPD on the table is very, very suspicious to me, but I'm a very suspicious and cynical old coot, as most folks around here will tell you. Almost sounds like some money's not going to be made if they aren't the ones that "supply" the machine. Not to mention the mask, circuit, filters, etc. which also vary greatly in features.

Like I said, I'm cynical.

 

[notme]

HI

The hospital that did the study doesn't give the equipment--it's outsources to one of many respiratory companies in the area. I'm going to call in the AM and see if they will let me talk to the sleep doctor that read the study to see if they can do a bi-pap study (if that is even possible)

I've known for a while that there were breathing issues--but the problems with the muscles themselves are relatively new for me. The shortness of breath is much worse than it was even 3 months ago.

My insurance will pay 80% of whatever is needed--but I certainly don't want to weaken the muscles further--and if I'm understanding Al correctly, that can be the case with c-pap alone if bi-pap is what I really need?

Too bad I don't speak to my ex anymore. He's a respiratory therapist. But--getting air out is more of an issue for me than getting air 'in'. Has been for a while now. But--that's pretty common in asthma--which I also have.

I should have just asked that the study results be forwarded to the neurologist--and let her prescribe what she felt I needed. The sleep study people got me in for the second study the night the doctor read the report. One was on Monday and the second was on Thursday.

I didn't wake up with the normal headache after the c-pap night--but I was just as short of breath during the day on Friday--and it was a struggle to exhale at the study (at least until I fell asleep) which I assumed was a normal reaction.

Guess we'll see what the pulmonary doc says on Thursday if I can't get anywhere with the sleep clinic. I certainly can't afford to just buy the machine outright. Even a c-pap is around 600 bucks (with a humidifier--which I need)

 

[trfogey]

If you are already having trouble exhaling, you definitely don't want a CPAP. The constant pressure is great on the inhale side, but it absolutely sucks to have to exhale out against it. Instead of supplementing and resting your respiratory muscles as the BiPAP is intended to do, a CPAP supplements the inhale muscles and overworks the exhale muscles. Not what you want to do with muscles under attack by neuromuscular disease.