Replies to This Discussion

Permalink Reply by RockRpsgt on September 28, 2009 at 8:01am

I agree Leslie each pt is different. You HAVE to treat the pt.

I will sit for the registry in March. My wife just started the END program. If there is any study material you need let me know.

• ▶ Reply

Permalink Reply by Vicki E Jones on September 28, 2009 at 10:59am

What is the END program, Rock? A technician program? I've learned so much I'd be interested. Have an old Bachelor's with honors in biological sciences, yet.

-Vicki

****

Rock Hinkle said:

I agree Leslie each pt is different. You HAVE to treat the pt.

I will sit for the registry in March. My wife just started the END program. If there is any study material you need let me know.

• ▶ Reply

Permalink Reply by RockRpsgt on September 28, 2009 at 5:05pm

OMG.. now I have to spell it! Electro Neurological Diagnostics. It is the EEG training program.

Vicki E Jones said:

What is the END program, Rock? A technician program? I've learned so much I'd be interested. Have an old Bachelor's with honors in biological sciences, yet.

-Vicki

****

Rock Hinkle said:

I agree Leslie each pt is different. You HAVE to treat the pt.

I will sit for the registry in March. My wife just started the END program. If there is any study material you need let me know.

• ▶ Reply

Permalink Reply by Leslie Scott on September 30, 2009 at 6:22am

Thanks. I've been eligible since May, but didn't have the funding (between vacation and buying a new car). I did do the online moduals, even though I didn't have to becuase I knew it would be good for me to help with my studying. I have just a couple left.

Getting off subject... but if anyone is looking for work in Colorado, email me... my boss does OJT :) (and we have labs all over the state... and opening some new ones as well as expanding!!) With the new medicare guidelines, RT's are really looking good right now :)

Les in CO

Rock Hinkle said:

I agree Leslie each pt is different. You HAVE to treat the pt.

I will sit for the registry in March. If there is any study material you need let me know.

• ▶ Reply

Permalink Reply by Mark in Idaho on October 6, 2009 at 4:39pm

Vicki E Jones,

You said you can't use a VPAP because "All of them either don't give a seal (no fat tissue in my face, and retrognathic mandible, and narrow bridge of nose)." Have you considered orthognathic surgery to correct your jaw? My wife and daughter have both had it, (congentital retrognathic mandibel). It drastically helped my wife's breathing. Also, she has much less sinus infections and cold like sicknesses now.

The surgical procedure has become very simple now. My wife's was in the 1980's and had a long recovery. My daughter's was in the late 1990's and she recovered very quickly. Same modifications to both just a newer procedure for my daughter. Less invasive with only one day of being wired shut. My wife was wired shut for weeks and hospitalized for two days in progressive critical care.. My daughter could have gone home the same day but chose to spend one night in the hospital because the trip home was an hour and a half.

Our insurance would not pay for my wife's. They considered it elective back in the 1980's. They paid for my daughter's because they learned that the ongoing medical needs for a congentital retrognathic mandibel were much higher than the one time cost of the orthognathic surgery. Uncorrected, congentital retrognathic mandibel leads to TMJ, gastric and OSA problems that can be very expensive to treat.

Regarding Central Sleep Apnea, Avery BioMedical Systems makes a diaphragm pacemaker that is effective with Central Sleep Apnea. Check out www.averybiomedical.com.

Right now it is an all on or off system. They are working on a modulated system based on blood Ox levels that is not so aggressive with each breath. The goal is to have a breathing pattern more like the normal diaphragm. The current system causes the diaphragm to be jerky, not smooth like a normal breath pattern. For spinal cord injuries, the current system is a life saver and opens up life opportunities.

Central Sleep Apnea is a big deal. I watched my father struggle with CSA for over thirty years. His mind slowly gave out requiring him to retire at 58 years old. He continued to deteriorate until he passed at 79 years old from dementia and Parkinson's. His Central Apnea only got progressively worse. My mom and he refused to consider apnea.

I have the same symptoms. I breath better when I sleep in a recliner chair. In bed, I have to be very careful with my sleeping position. My wife has counted as many at 12 apnea episodes in an hour. My cycle sounds a lot like what I observed with my father.

Central Sleep Apnea can be caused by Lewy Body Dementia, a dysfunction in the brain stem. My is likely from multiple concussions and possibly a recurring mini-stroke due to inflammation at C-1 that disrupts blood flow. My new physician will be looking into this issue. Others have just dismissed it.

Les in CO,

Research has shown that altitudes of 8,000 feet can cause brain dysfunction for people who have suffered a concussion. They only tested with 8,000 feet so there is no data about lower altitudes. I had to stop flying small planes because I would get demented after an hour at over 8,000 feet. I would forget things and not complete checklists properly.

Dorothy Gronwal, Ph.D. of New Zealand did the research in the late 1970's. She used healthy University students with and without a concussion history and tested them with neuropsych batteries. The concussions were all closed head injuries.

Something to think about.

• ▶ Reply

Permalink Reply by Vicki E Jones on October 6, 2009 at 6:33pm

I wish my doctors were as knowledgeable as yours.
Yes, I would love to have mandibular advancement surgery., i.e. orthognathic surgery, but:
the problem is, I took Actonel, a biphosphonate, from 2004 to 2006. That was a weekly dose, 35 mg per week.
You can't watch TV without ads for Boniva, Reclast, Actonel, Fosamax - all biphosphonates for bone density problems.
Biphosphonates are what most doctors push - and I do mean push - for bone loss (Osteopenia or Osteoporosis), when a person is doing everything right and still losing bone density (at whatever rate).

Even though I only took it 18 months, and have been off of biphosphonates for 3 years, there is a small risk of mandibular osteonecrosis - jaw bone death - at the sites where the jaw bone is cut. There is also a small risk if a tooth is extracted. If you look up mandibular osteonecrosis online, it will shock you. The gums and tissue inside the mouth die, and the jaw bone dies and is exposed - horrendous brown dead bone. It can be progressive if it gets started and is difficult to treat. It can be extremely disfiguring if bone needs to be removed.

Doctors don't even mention the risk when they prescribe biphosphonates.
I called an organization that focuses strictly on jaw bone death and its causes. I was told the bisphophonates stay in the body 10 to 15 years, even after I mentioned that complete bone turnover occurs every 7 years.

Insurance would cover the surgery. I am just concerned about the risk. I have a very, very reactive body,
with many allergies and sensitivities. So I am hesitant to take the risk.

I will ask my doctor about the Avery approach to treatment.
I have never heard of that. Insurance is already paying on the SV machine, though, and I am now on the Respironics Auto BiPap SV, no longer on the ResMed VPAP Adapt SV, since the ResMed would not accept/learn circuit with the only things I can use with my facial contours. Respironics machine will accept what I can use.

Your new physician sounds good. Sleep apnea neurologist, or what? How did you find your new physician?

Vicki in Illinois

******



Mark in Idaho said:

Vicki E Jones,

You said you can't use a VPAP because "All of them either don't give a seal (no fat tissue in my face, and retrognathic mandible, and narrow bridge of nose)." Have you considered orthognathic surgery to correct your jaw? My wife and daughter have both had it, (congentital retrognathic mandibel). It drastically helped my wife's breathing. Also, she has much less sinus infections and cold like sicknesses now.

The surgical procedure has become very simple now. My wife's was in the 1980's and had a long recovery. My daughter's was in the late 1990's and she recovered very quickly. Same modifications to both just a newer procedure for my daughter. Less invasive with only one day of being wired shut. My wife was wired shut for weeks and hospitalized for two days in progressive critical care.. My daughter could have gone home the same day but chose to spend one night in the hospital because the trip home was an hour and a half.

Our insurance would not pay for my wife's. They considered it elective back in the 1980's. They paid for my daughter's because they learned that the ongoing medical needs for a congentital retrognathic mandibel were much higher than the one time cost of the orthognathic surgery. Uncorrected, congentital retrognathic mandibel leads to TMJ, gastric and OSA problems that can be very expensive to treat.

Regarding Central Sleep Apnea, Avery BioMedical Systems makes a diaphragm pacemaker that is effective with Central Sleep Apnea. Check out www.averybiomedical.com.

Right now it is an all on or off system. They are working on a modulated system based on blood Ox levels that is not so aggressive with each breath. The goal is to have a breathing pattern more like the normal diaphragm. The current system causes the diaphragm to be jerky, not smooth like a normal breath pattern. For spinal cord injuries, the current system is a life saver and opens up life opportunities.

Central Sleep Apnea is a big deal. I watched my father struggle with CSA for over thirty years. His mind slowly gave out requiring him to retire at 58 years old. He continued to deteriorate until he passed at 79 years old from dementia and Parkinson's. His Central Apnea only got progressively worse. My mom and he refused to consider apnea.

I have the same symptoms. I breath better when I sleep in a recliner chair. In bed, I have to be very careful with my sleeping position. My wife has counted as many at 12 apnea episodes in an hour. My cycle sounds a lot like what I observed with my father.

Central Sleep Apnea can be caused by Lewy Body Dementia, a dysfunction in the brain stem. My is likely from multiple concussions and possibly a recurring mini-stroke due to inflammation at C-1 that disrupts blood flow. My new physician will be looking into this issue. Others have just dismissed it.

Les in CO,

Research has shown that altitudes of 8,000 feet can cause brain dysfunction for people who have suffered a concussion. They only tested with 8,000 feet so there is no data about lower altitudes. I had to stop flying small planes because I would get demented after an hour at over 8,000 feet. I would forget things and not complete checklists properly.

Dorothy Gronwal, Ph.D. of New Zealand did the research in the late 1970's. She used healthy University students with and without a concussion history and tested them with neuropsych batteries. The concussions were all closed head injuries.

Something to think about.

• ▶ Reply

Permalink Reply by Mark in Idaho on October 6, 2009 at 6:50pm

Vicki,

Have you had a good hormone panel done. Bio-identical hormones adjusted to your specific body's needs may help with your osteoporosis. My wife has had a life changing experience with them. It takes a knowledgeable physician. My wife sees a RNP (Registered Nurse Practitioner) who specializes in women's health.

My new physician is a PA (Physician's Assistant) who specializes in men's health issues. First, he is going to get my hormones and such balanced. Then he will work on neurotransmitters. The Central Apnea will come after he corrects the other two. I have a long history of concussions. I may have brain damage that is effecting the other issues, hormones, neurotransmitters, Central Apnea. )

Your comment of "doing everything right" is based on Big Pharma's standards. Shotgun hormones are just that. Throw a mess of hormones at the problem and hope it hits the target. Bio-identical Hormones are like having a sniper sharpshooter hitting the target dead center. It has improved my wife's moods, skin, and her bones are staying sound. I got my 'old' wife back after a few years of crabby wife.

I understand that Boniva does not build up bone. It instead stops the absorption of the old bone cells. So, the patient ends up with bones that are old and fragile, even though they have the proper density. Your bones become an old bone yard with no room for new bone to grow. Yuck!!

• ▶ Reply

Permalink Reply by Vicki E Jones on October 6, 2009 at 8:28pm

Mark -
I have been taking custom-compounded, bio-identical hormones for ten years.
I have Osteopenia (milder bone loss), not Osteoporosis.

My bone loss problems are due to Secondary Hyperparathyroidism, meaning the parathyroid
hormone level got too high because my body doesn't make vitamin D anymore - or very little,
anyway. I am 62. It is an aging thing and very, very common.

It is rarely diagnosed, since most doctors don't check the parathyroid hormone or vitamin
D levels. Even walking out in sunshine won't make my skin make vitamin D, except during the
mid-summer months when the sun is strongest. I don't make enough to have the reserves to
take me through winter. Vitamin D inhibits excess parathyroid hormone level production. Low
vitamin D, parathyroid hormone levels get too high, and that decreases bone density.

Surprisingly, Forteo studies showed intermittent (daily) injection of Forteo (parathyroid hormone)
would build bone density - i.e. pulsing the body, but it is inappropriate for those who have a parathyroid
hormone problem. It can also cause Osteosarcoma (bone cancer), and the first few cases were
recently reported in women using Forteo for a long time. Another medication with problems.

My bone density doctor is head of the Bone Density and Endocrinology clinic at University of
Chicago, and he did check vitamin D and parathyroid hormone level and serum calcium a few years
ago, and found the Secondary Hyperparathyroidism problem (Primary would mean parathyroid
tumors or cysts or hyperplasias, and I don't have that).

I have to take high doses of calcium and vitamin D (Twinlab Tri-Boron Plus, plus some D3
softgels, daily, which also has boron, magnesium, etc., etc.), but my levels are now in mid-range
of normal. Calcitonin nasal spray is my bone density med, and, in my opinion, a safe approach.
It doesn't cause jaw bone death or bone cancer. It can cause a sore in the nostril it is sprayed in,
and it is possible to be allergic to it, but it is salmon-related (lab-made) and I get along with salmon.

My bone density is slowly increasing now. That is fine with me. I also am very into complimentary
approaches like the MK-4 form of vitamin K2 (research in Japan showed it worked as well as bone
density meds), called Menatetrenone, and their are three brands of that in the right strength, OTC,
that can be purchased online. Also Ostivone. The vitamin D intake promotes bone density. Vitamin D
plays a very important role in bone density, and not just in limiting parathyroid secretions.

You are right about Boniva and the other meds and how they work. The pharmaceutical industry is
out to make money, not advise people on the extent of the risks of their medicines and how long they
are at risk if they take them, especially long-term.

I consider myself fortunate that I only took biphosphonates for 18 months.

Vicki

********


Mark in Idaho said:

Vicki,

Have you had a good hormone panel done. Bio-identical hormones adjusted to your specific body's needs may help with your osteoporosis. My wife has had a life changing experience with them. It takes a knowledgeable physician. My wife sees a RNP (Registered Nurse Practitioner) who specializes in women's health.

My new physician is a PA (Physician's Assistant) who specializes in men's health issues. First, he is going to get my hormones and such balanced. Then he will work on neurotransmitters. The Central Apnea will come after he corrects the other two. I have a long history of concussions. I may have brain damage that is effecting the other issues, hormones, neurotransmitters, Central Apnea. )

Your comment of "doing everything right" is based on Big Pharma's standards. Shotgun hormones are just that. Throw a mess of hormones at the problem and hope it hits the target. Bio-identical Hormones are like having a sniper sharpshooter hitting the target dead center. It has improved my wife's moods, skin, and her bones are staying sound. I got my 'old' wife back after a few years of crabby wife.

I understand that Boniva does not build up bone. It instead stops the absorption of the old bone cells. So, the patient ends up with bones that are old and fragile, even though they have the proper density. Your bones become an old bone yard with no room for new bone to grow. Yuck!!

• ▶ Reply

Permalink Reply by Jan on October 6, 2009 at 8:39pm

Hi-- I took an overnight sleep study last week and am scheduled to go to the lab again tomorrow night to be fitted with equipment. The results of the test were that I have severe sleep disordered breathing. During the 172 minutes I actually slept, they recorded 20 central apneas, 94 obstructive apneas, 93 hypopneas (???), and 12 respiratory effort related arousals. (I don't rven know what the last two things are but will continue to research)

What is scariest to me is the large variety of equipment available and the number of stories I have read on here and other sites about the difficulties in figuring out the right equipment and making sure that technicians/insurance companies don't short change you or steer you to cheaper equipment.

Frankly, if need be, I can pay for the equipment out of pocket.

Given the variety of issues I have going on-- I am wondering if anyone is able to narrow down to several models the very best equipment I should be looking at? I do travel some, but that needn't be the main consideration.

Thanks for your help, I do feel under some time pressure given tomorrows scheduled visit to the sleep lab.

Jan

• ▶ Reply

Permalink Reply by Vicki E Jones on October 6, 2009 at 8:48pm

Jan -
Hard to say if you need CPAP or the more complicated machines for Central Sleep Apnea.

With that high a level of obstructive sleep apneas, correcting the obstructive with CPAP, or
with an oral appliance that advances the lower jaw, or both may get rid of the Central events.
You won't know until they decide what to do for the obstructive events.

They should do an overnight titration with whatever machine they feel is appropriate, to see
what air pressure you need, and whether it corrects the obstructive and the central.

There are many different machines, masks, little nasal masks that just go around the nose or
end of nose, nasal pillows that go under the nostrils (soft silicone), many different headgear
systems - some simple, some elaborate, brands, styles.

For the more complicated machines for the Central Sleep Apnea, there are only two machines,
but it seems to me they should first try an oral appliance, or oral plus CPAP. There are some
very small CPAP machines out there, and some fairly comfortable face masks and nasal pillows.
I have problems with allergies and facial contours, but you are not likely to have that.

Vicki
******

Jan said:

Hi-- I took an overnight sleep study last week and am scheduled to go to the lab again tomorrow night to be fitted with equipment. The results of the test were that I have severe sleep disordered breathing. During the 172 minutes I actually slept, they recorded 20 central apneas, 94 obstructive apneas, 93 hypopneas (???), and 12 respiratory effort related arousals. (I don't rven know what the last two things are but will continue to research)

What is scariest to me is the large variety of equipment available and the number of stories I have read on here and other sites about the difficulties in figuring out the right equipment and making sure that technicians/insurance companies don't short change you or steer you to cheaper equipment.

Frankly, if need be, I can pay for the equipment out of pocket.

Given the variety of issues I have going on-- I am wondering if anyone is able to narrow down to several models the very best equipment I should be looking at? I do travel some, but that needn't be the main consideration.

Thanks for your help, I do feel under some time pressure given tomorrows scheduled visit to the sleep lab.

Jan

• ▶ Reply

Permalink Reply by Jan on October 6, 2009 at 9:07pm

Vicki E Jones said:

Jan -
Hard to say if you need CPAP or the more complicated machines for Central Sleep Apnea.

With that high a level of obstructive sleep apneas, correcting the obstructive with CPAP, or
with an oral appliance that advances the lower jaw, or both may get rid of the Central events.
You won't know until they decide what to do for the obstructive events.

They should do an overnight titration with whatever machine they feel is appropriate, to see
what air pressure you need, and whether it corrects the obstructive and the central.

There are many different machines, masks, little nasal masks that just go around the nose or
end of nose, nasal pillows that go under the nostrils (soft silicone), many different headgear
systems - some simple, some elaborate, brands, styles.

For the more complicated machines for the Central Sleep Apnea, there are only two machines,
but it seems to me they should first try an oral appliance, or oral plus CPAP. There are some
very small CPAP machines out there, and some fairly comfortable face masks and nasal pillows.
I have problems with allergies and facial contours, but you are not likely to have that.

Vicki
******

Jan said:

Hi-- I took an overnight sleep study last week and am scheduled to go to the lab again tomorrow night to be fitted with equipment. The results of the test were that I have severe sleep disordered breathing. During the 172 minutes I actually slept, they recorded 20 central apneas, 94 obstructive apneas, 93 hypopneas (???), and 12 respiratory effort related arousals. (I don't rven know what the last two things are but will continue to research)

What is scariest to me is the large variety of equipment available and the number of stories I have read on here and other sites about the difficulties in figuring out the right equipment and making sure that technicians/insurance companies don't short change you or steer you to cheaper equipment.

Frankly, if need be, I can pay for the equipment out of pocket.

Given the variety of issues I have going on-- I am wondering if anyone is able to narrow down to several models the very best equipment I should be looking at? I do travel some, but that needn't be the main consideration.

Thanks for your help, I do feel under some time pressure given tomorrows scheduled visit to the sleep lab.

Jan

Thanks, Vicki, for your quick reply. I had some serious TMJ treated a number of years ago, so I am probably not going to be very happy with any oral device that moves my chin forward....but I'm receptive to anything that will work. I received a two page report from that initial test and the lab said "The patient has mixed apnea. A CPAP titration study shoudl bbe performed to determine the efficacy of this devive in treating the patients sleep related breathing disorder and to determine the correct pressure blah blah...

I've read about "automatic machines" and also BiPap machines and was wondering if anyone had a view on whether these are features I should be looking at...

• ▶ Reply

Permalink Reply by Mark in Idaho on October 7, 2009 at 3:12am

FYI,

93 hypopneas (???), and 12 respiratory effort related arousals.

Hypopneas is where your breathing is not sufficient to keep your oxygen levels where they need to be. They may be interupted apneas where your brain started you breathing better before you stopped completely.

The 'respiratory effort related arousals' are when you start to wake up due to your breathing difficulties. These were probably related to the Obstructive Apnea events as they can cause arousal more frequently. Central Apnea does not cause the same kind of arousals from my understanding.

Has anybody suggested laser tissue tightening or removal? My neighbor had great success when they removed some tissue and shrunk/tightened other tissue.

It appears that you averaged an apnea event each minute. If you breath at 10 Resperations Per Minute normally, you were probably not breathing for half of the 172 minutes. I would suspect that an event would need quite a few breaths missed to effect you blood Ox level. WOW !!

Did the report say what your oxygen levels were average and at the lowest. ?

I would love to have a recording PulseOx meter to sleep with to track my Oxygen levels. I bet my sleep oxygen levels coincide with my level of functioning each day.

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• 3
• 4
• 5
• 6
• 7
• Next ›
• Page