Please email me if you're on a trach too. I had 2 strokes and I've been on a trach for 2 months now. I talked to 2 people who were on trachs and said it cured their sleep apnea and was great. From what I learned these 2 people told me that it only becomes effective 6-9 months after the surgery for some mysterious reason.
I have severe OSA+CSA, I had a desat to 75% with centrals on a sleep study, plus I have bad asthma and can't exhale.
I'm thinking of switching to a stoma button.
But I haven't felt the effectiveness for mixed apnea. I'm still winded, exhausted even from speaking a little and have brain fog and trouble learning names.
Is trach really better than ASV+oxygen? I'm worried I have some problem with asthma with blood oxygen and absorbing oxygen.
I didn't feel back to baseline on ASV+oxygen but it seemed to be more effective than trach. I also almost went deaf after the trach operation.
You ask some really important questions. A trach completely bypasses the area of obstruction (assuming it is open and working well). Therefore, it should serve as a complete "cure" for obstructive sleep apnea--that is, episodes caused by blockage of the air passages. However, sometimes sleep apnea also is due to a problem with the brain not sending the right signals to the breathing muscles, that is telling those muscles to breathe during sleep. This can cause "central" apneas--apneas occurring because there is not sufficient effort being made to breathe. Sometimes, right after a tracheostomy, the brain and body have not fully adjusted to changes the concentrations of oxygen and carbon dioxide that resulted from relieving the airway obstruction with surgery. During this period of adjustment, there may be central apneas, as the body's breathing control systems are adjusting. Usually over time, this should settle out and improve. However, it is important to know that some people with obstructive sleep apnea may actually have some component of central apneas--even when things are "stable"--that type of breathing problem may require therapies such as ASV. Also, if there is lung disease causing low oxygen levels, a tracheostomy alone may not be sufficient to correct the oxygen levels (which may also require supplemental oxygen.)
I hope this explanation was not too confusing! In any case, I would speak with your doctors and find out what the plan is for following up after tracheostomy to assure both that the trach is working well and there is not a need for additional treatment to address problems such as central apneas or low oxygen.
Good luck!
Yes I've heard from one other patient that trach patients have central apneas and they were bedridden adjusting to the new airflow to the brain for months. They told me that they could breathe better on a stoma button.
I'm surprised that I'm still this weak impaired after 2 months after the surgery. I've been weak and have been bedridden. It's difficult to understand simple sentences and I get exhausted from simple talking. I also had my life destroyed by 2 strokes and a TBI. I'm on a fenestrated shiley 8. I'm really wondering if I switched to a different trach if I could breathe better or maybe had another operation and switched to a 12mm.
I'm really worried that I'm being brain damaged on the trach since I'm weak and can't understand simple sentences and things seemed better on the ASV. the difficulty understanding sentences may be partly due to the 2 strokes I had but it seems from sleep apnea since I had that before the stroke.
I'm not sure where this temporary central apnea idea/theory comes from and if it's true.
I never had sharp clarity on ASV except for about 3 days. I heard from 2 people that they had better brain function and were happy with their trachs but the improvement happened 6-9 months after the operation. It seems unusual for it to take so long. Wouldn't an improvement in blood oxygen and sleep apnea reduction be felt immediately?
there seems to be a theory that centrals are also caused by frequent sleep awakenings which alter the body's O2/CO2 sensing. a doctor told me that centrals can be treated by increasing sleep continuity.
anyway I'm becoming more skeptical about trach after 2 months on the shiley 8mm. I do have asthma and am 185 pounds so maybe I'd feel better on a size 10/12.
I had 2 strokes/TIAs even with an ASV+oxygen and klonopin and am handicapped. I was hoping to become an Md/Phd and study some pure math. My strange and vacationing ENT surgeon is advising that I go back to ASV since he thinks I have centrals and no OSA. This contradicts the sleep studies showing mixed apnea from Ultimate Health Sleep in NY but agrees with the SD card data from the Phillips ASV on Sleepyhead. I still had heavy fog and couldn't work or study on ASV+oxygen even with trying to increase sleep continuity which helped with klonopin and trazodone for the 0.1% stage 3/4 sleep on the sleep study. I do have 40% carotid ICA stenosis is there an association with central apnea with those O2 sensing carotid bodies? The sleepy head software on the Phillips SD card showed no OSA events only clear airway and hypopnea events. But the sleep lab in NY showed OSA+CSA mixed apnea with a desaturation of 65%. The sleep neurologist at Columbia said I had complex asthma and he put me on gabapentin to increase stage 3/4 and advised me to see the Columbia sleep pulmonologists but they didn't take my insurance. I've seen many many pulmonologists outside Columbia and don't see any hope to restore my brain function after 2 strokes. So maybe it is dangerous to be on trach even if the oximeter shows normal O2 readings? I've been suffering on the regular and fenestrated shiley 8mm for 2 months and I just feel really weak and exhausted and I can't understand eevn short sentences. I don't know if I had a stoma button on a size 10-12 trach if it would make a difference. Trach seems a bit better than sleeping without the ASV.
I feel good without the trach in with an open stoma which is larger than the 8mm shiley. When the trach is put in I instantly feel my nose clog up. I don't know if a 10-12mm open stoma is like a skin-lined trach and would help?
I guess my only hope is these experimental devices or seeing another pulmonologist neurologist. The ENT on sleep endoscopy found my soft palate was collapsing up into my nose. https://myapnea.org/blog/complex-sleep-apnea
I felt the sleep apnea beginning to cripple me with the onset of adult asthma.
Hi,
I have severe central sleep apnea. I had a Montgomery Cannula placed 21 years ago (Shiley and Bivona cuffed cannulas didn't allow me to turn my neck). In the old days, obstructive sleep apnea was treated by a simple tracheal cannula. I have resolved the centrals by using a volume ventilator for the past 19 years ( not a CPAP, BiPAP or any other pressure device). Presently I am using a ResMed Astral 150 control/assist. The resolution of the sleep disruption allows me to continue to work, and do everything normal people do. If someone is willing to set the ventilator to something that is comfortable for you, it might be worth a try. There are transcutaneous CO2 monitors, coupled with a regular O2 monitor, should get your gasses nailed without doing blood gasses while you are asleep.
The only problem I am having now, is how to get Medicare to pay for the ventilator. My private insurance company paid for 17 years. Does anyone have any ideas?
Thanks,
DanM or SusanR, In re-reading Susan's reply of about a week ago, she mentioned trach surgery as a cure for obstructive sleep apnea issues. Why is this surgery presented as an alternative to PAP therapy? Cost? Negatives? I couldn't well follow much of what was being discussed in med-talk and am just being curious. Thanks! wg
Hi Wiredgeorge. A trach would serve as a cure because it is usually placed below the area that commonly obstructs in patients with sleep apnea. The surgery was more common many years ago before there were alternative treatments like CPAP and mandibular advancement devices. It is much less common now and tends to be used in patients with problems that are more complex than sleep apnea alone. It is generally not presented as an alternative to PAP therapy or other treatments that are much more feasible and easier to manage. Hope this helps!
HI,
Refer to "Complex Sleep Apnea" Dr. Robert Thomas. I originally had a cannula placed as a temporary measure 20 years ago, because CPAP etc wasn't working. My diagnosis was strictly Obstructive Sleep Apnea. After the cannula was placed, the centrals only remained (at that time complex s. a. wasn't recognized). The only treatment that worked was volume ventilation through the cannula with my obstructive component creating a seal.
My problem is with getting Medicare to cover a treatment that is 100% effective. I need a respiratory company that will bill one month, be turned down, and be approved on appeal.
