Dealing with the VA about issues

[TennVet]

A while back my cardiologist diagnosed me with AFIB, fortunately treatable with some more pills. Then the VA decided to help me even more by scheduling an exam for sleep apnea, said it was part of the protocol when diagnosed with AFIB. I did some reading and there seemed to be some logic to it, even to my laymen's understanding. Here's the thing, a year or so ago while snorkeling I had an issue that ended with a panic attach and nearly ended up drowning. I have been unable to put a snorkel mask on again. Of course the preferred treatment for apnea is the CPAP gizmo.

I can reasonably accept that treating sleep apnea might allow me to quit taking the blood thinner and heart regulation medication prescribed, and I favor taking as few drugs as possible to maintain good health. Now as we look at alternates to the CPAP machine we keep running into issues that make each one we consider a no go. I couple my mask phobia along with the fact that stats say 50% or more persons discard the CPAP within the first year of starting. It may be a good treatment but I firm in saying its not for me. At this point I'm leaning toward the Inspire implant treatment, but there are a few hurdles to cross before that can be a reality.

I'm not unaccustomed to dealing with the VA on treatment and benefits, I view it as a process and maintain my position as a priority stakeholder when dealing with them. So far it has proven true for me that you must treat the VA as the beast that it is. It takes persistence, and using the word 'why' relentlessly, and sometimes you have to take it to the next authority level. We'll see how it turns out.

 

[Kaila]

Good luck with that. (I mean that sincerely, and not at all sarcastically, as the phrase is sometimes meant. )

Hopefully your persistence and your excellent ability to clearly explain your very valid reasons, will pay off for you,
to eventually get the right match of treatment to your specific needs.

I don't know how the VA works, but I hope that they don't insist on the use some of the rigid required protocols, that some of the health systems now require....

that will only let a patient use a particular treatment that is not the usual go-to, if the other ones have been tried first, and failed.... that is, deemed not effective, or proven detrimental for that person, by some other outside authority.

That now common method of determining treatment options, might be appropriate or okay for some situations,

but obviously (to me) not in yours, and clearly not for some others, as well.

I hope it works out well for you and doesn't take too much extra delay time.

 

[ProTruckDriver]

I've seen the advertisements for the Inspire Implant Treatment. I don't believe I could handle that. I've been on a VPAP machine with a Full Face Mask since 2008. I'm claustrophobic and the mask does not bother me at all. They also have all types of masks and small ones that only fit over your nose only. The upper portion of my heart was enlarged in 2008 and within a few years it went back to normal using the VPAP. CPAP / VPAP aren't for everybody. It takes a bit of getting use to. Some people just can't use them because sometimes they are a PITA to sleep with.
Which ever direction you decide to go, I wish you the best. Sleep Apnea is something to get fixed ASAP.

 

[Teacher Terry]

If you aren’t a mouth breather you can use the mask that is just a tube to your nose. There’s other small masks in between the hose to the nose and the full mask. I’m claustrophobic and it took getting used to but

I wear the full mask because I breathe through my mouth. I can’t imagine having surgery to have a device implanted for sleep apnea.

 

[TennVet]

Good luck with that. (I mean that sincerely, and not at all sarcastically, as the phrase is sometimes meant. )

Hopefully your persistence and your excellent ability to clearly explain your very valid reasons, will pay off for you,
to eventually get the right match of treatment to your specific needs.

I don't know how the VA works, but I hope that they don't insist on the use some of the rigid required protocols, that some of the health systems now require....

that will only let a patient use a particular treatment that is not the usual go-to, if the other ones have been tried first, and failed.... that is, deemed not effective, or proven detrimental for that person, by some other outside authority.

That now common method of determining treatment options, might be appropriate or okay for some situations,

but obviously (to me) not in yours, and clearly not for some others, as well.

I hope it works out well for you and doesn't take too much extra delay time.

So far persistence has been my best ally, and I think it works in most areas, not just the VA.

 

[TennVet]

A while back my cardiologist diagnosed me with AFIB, fortunately treatable with some more pills. Then the VA decided to help me even more by scheduling an exam for sleep apnea, said it was part of the protocol when diagnosed with AFIB. I did some reading and there seemed to be some logic to it, even to my laymen's understanding. Here's the thing, a year or so ago while snorkeling I had an issue that ended with a panic attach and nearly ended up drowning. I have been unable to put a snorkel mask on again. Of course the preferred treatment for apnea is the CPAP gizmo.

I can reasonably accept that treating sleep apnea might allow me to quit taking the blood thinner and heart regulation medication prescribed, and I favor taking as few drugs as possible to maintain good health. Now as we look at alternates to the CPAP machine we keep running into issues that make each one we consider a no go. I couple my mask phobia along with the fact that stats say 50% or more persons discard the CPAP within the first year of starting. It may be a good treatment but I firm in saying its not for me. At this point I'm leaning toward the Inspire implant treatment, but there are a few hurdles to cross before that can be a reality.

I'm not unaccustomed to dealing with the VA on treatment and benefits, I view it as a process and maintain my position as a priority stakeholder when dealing with them. So far it has proven true for me that you must treat the VA as the beast that it is. It takes persistence, and using the word 'why' relentlessly, and sometimes you have to take it to the next authority level. We'll see how it turns out.

We are now a couple months down the road. A few days ago I underwent the surgery to implant the Inspire Sleep device, and I'm in the healing stages of the program. I understand that following the surgical healing next steps involve turning on and regulating the operation of the device. The intensity of stimulation from the device is fine tuned for each patient. I compare it to the process of setting up my hearing aids to meet my particular needs. I'll provide a further update again after I get the use of the device going.

 

[Jules]

Keep on healing. I’d never heard of this process.

Being claustrophobic, my tension was through the roof reading this.

 

[Blessed]

I am coming into the tail end of this conversation but I fully understand where you are coming from. I have suffered from panic attacks all my life. This was eons before it was discussed or considered a true medical issue.

Of course, when this happens to you the normal reaction is to never put yourself in that situation again and that is how I lived most of my life. If something makes me uncomfortable I am not going, I am not doing it. Little did I know this was a mental thing not a true reality. I finally went into therapy after learning that a famous football player suffered the same thing.

I got a therapist that specialized in panic disorder and agoraphobia or fear of the marketplace. I always had problems being away from home, strange places, crowds, fear of not being safe. It was a long road, of course lots of talk with the therapist, then we started exposure therapy, also long and difficult for me. In the end, it did help, I gained the confidence to put myself in uncomfortable situations and had the coping skills to calm myself.

Of course, now I know this is just a part of me, how my brain works. At least, I am not in that cycle of fight or flee. If has allowed me to live a fuller life than I ever imagined. It took a lot of pressure off of my family as well. They now knew if they just step back and let me deal with it in my way I will be fine. The biggest thing is to know you are not the only one, this is quite common and related to a horrible experience that throws of the normal way a brain processes.

I am proud of you, you know the problem, have dealt with it in the way that makes you feel comfortable in facing your medical needs..

 

[TennVet]

So far persistence has been my best ally, and I think it works in most areas, not just the VA.

Through this process I learned yet another lesson in dealing with the processes at the VA. When a veteran enrolls in VA Healthcare you are put into a priority level. A number of factors are considered in this regard. Service in combat, service connection of conditions or disabilities, even things like what your military service assignment was. All things considered I was put into Priority group 1, which has the effect of accelerating my treatment at different times. I don't think I did anything to gain this advanced classification, but I understand how it works in the system.

 

[TennVet]

We are now a couple months down the road. A few days ago I underwent the surgery to implant the Inspire Sleep device, and I'm in the healing stages of the program. I understand that following the surgical healing next steps involve turning on and regulating the operation of the device. The intensity of stimulation from the device is fine tuned for each patient. I compare it to the process of setting up my hearing aids to meet my particular needs. I'll provide a further update again after I get the use of the device going.

The surgery to implant the Inspire Sleep device was done two weeks ago, and the healing has gone pretty well. Both incisions are completely healed and never had any issues such as bleeding or infection. There is still some tenderness in the incision areas but that is to be expected with any surgery. Yesterday a surgery follow up visit with the medical team gave positive results.

For the next step I am now being referred back to the sleep clinic for the next steps in the treatment. The device will be turned on, with preliminary settings followed by another at home sleep test that will be used to refine the settings for me individually. There will be a series of follow ups and perhaps more setting adjustments that data downloaded from the device will guide the calibration. This is based on what I have been told to expect. I am very optimistic about the process and will provide more info later.

 

[jujube]

If you aren’t a mouth breather you can use the mask that is just a tube to your nose. There’s other small masks in between the hose to the nose and the full mask. I’m claustrophobic and it took getting used to but

I wear the full mask because I breathe through my mouth. I can’t imagine having surgery to have a device implanted for sleep apnea.

I am a mouth breather, so I had to use a chin strap when I was prescribed a CPAP with the nasal pillows. Otherwise, my mouth would be open and it sounded like a dragon was in bed with us. Then I tried the big mask, but still couldn't hack it. I'd start to fall asleep and would wake in a panic. Not good. I turned it back in and just try to get along without it.

I hated that thing!