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I would pay attention to John Fisher's posts and trash all the rest, including my own.

avi123 wrote:I would pay attention to John Fisher's posts and trash all the rest, including my own.

So you think my suggestion to use a data capable machine to make sure the CPAP therapy works well is bad advice?

Hmmm.

Julie wrote:Why doesn't someone ask a neurologist instead of trying to play House?

i have been to almost every neurologist in my state but its not working out

I am not a neurologist, and I rarely watch House. Certainly do not want to play House, based on what I have seen. Cerebellar atrophy can be caused by many different things, some of which are listed here: http://www.ninds.nih.gov/disorders/cere ... ration.htm. Note that the first one includes lack of blood flow or oxygen to the cerebellum. Apnea, whether central or obstructive, that causes desaturations is going to be associated with a reduction in flow of oxygen. Probably, but not absolutely certainly, that will include to the cerebellum. However, determination of cause and effect is going to be very difficult, if not impossible. Maybe an oximeter would help determine if desaturation is still going on. If it is, a trial of an APAP or another sleep study would be needed to assess what the new pressure (or range) should be. So, at the end of the day we cannot assume that OSA causes cerebellar atrophy or vice versa. Nor can we assume that xpap will halt or reverse it. What we need to do is find out the optimum treatment for our particular symptoms. To do that we need to have answers for all the questions that a neurologist may have - if not the first time he/she asks them, certainly by the next visit. If we are answering for a loved one, we need to try and find answers somehow. Of course, our neurologist needs to be real, knowledgeable about sleep apnea, and able to consider all the possible options.

SleepyToo2 wrote:I am not a neurologist, and I rarely watch House. Certainly do not want to play House, based on what I have seen. Cerebellar atrophy can be caused by many different things, some of which are listed here: http://www.ninds.nih.gov/disorders/cere ... ration.htm. Note that the first one includes lack of blood flow or oxygen to the cerebellum. Apnea, whether central or obstructive, that causes desaturations is going to be associated with a reduction in flow of oxygen. Probably, but not absolutely certainly, that will include to the cerebellum. However, determination of cause and effect is going to be very difficult, if not impossible. Maybe an oximeter would help determine if desaturation is still going on. If it is, a trial of an APAP or another sleep study would be needed to assess what the new pressure (or range) should be. So, at the end of the day we cannot assume that OSA causes cerebellar atrophy or vice versa. Nor can we assume that xpap will halt or reverse it. What we need to do is find out the optimum treatment for our particular symptoms. To do that we need to have answers for all the questions that a neurologist may have - if not the first time he/she asks them, certainly by the next visit. If we are answering for a loved one, we need to try and find answers somehow. Of course, our neurologist needs to be real, knowledgeable about sleep apnea, and able to consider all the possible options.

Comment,

If we experience Oxygen desaturation because of apneas then our bodies would constrict the blood flow to our limbs but continue the flow to our brain and heart.

avi, it may be true that the normal body should protect against cerebral hypoxia. However, if we have severe apnea (or severe desaturation) the defensive mechanism is probably overcome. I did a search on PubMed and found 220 articles on sleep apnea and cerebral hypoxia: http://www.ncbi.nlm.nih.gov/pubmed?term ... 20hypoxia). I took a look at just one of the resulting citations (#22693128) - the investigators report that "Profound cerebral deoxygenation effects of SDB occurred in acute/subacute stroke." The changes in cerebral oxygenation and hemoglobin concentrations were much larger on the unaffected side, and hypoxia was more severe during obstructive than central apneas. That is reassuring to those who see "central" apneas on their SleepyHead or other software reports. To me it indicates that there is good reason to be concerned if we have severe desaturation (my levels went down to 74%) in the presence of obstructive apneas. The question is whether maintaining saturation levels throughout the 24-hour day for an extended period in people without stroke will allow a restoration of brain structure and function - or at least allow compensation for the damage. In the presence of significant brain changes, I believe it would be difficult, if not impossible. Research is required to substantiate the effects of treatment of sleep apnea on any changes that are seen in untreated patients.

SleepyToo2, you looked for cerebral atrophy but the present case is cerebellar atrophy. On a second thought I think that my above post is wrong b/c if you have desaturation in your body then the same desaturated blood would be channeled to the brain. Regardless, if a brain tissue atrophied then no blood, saturated or not, is going to change it. Adaptation, as you say, could help.

avi, you are right - I wasn't specific enough in my search. Obviously, cerebellar atrophy needs further research.

what about treatment , most of the docs have confirmed that it is degenrative as more symptoms coming into existence
the only thing remains is just to treat the symptoms ? aren't there anything except this ? like ayurveda , homeopathy

avi123 wrote:SleepyToo2, you looked for cerebral atrophy but the present case is cerebellar atrophy. On a second thought I think that my above post is wrong b/c if you have desaturation in your body then the same desaturated blood would be channeled to the brain. Regardless, if a brain tissue atrophied then no blood, saturated or not, is going to change it. Adaptation, as you say, could help.

The S9 Escape Auto does offer AHI but doesn't offer the break down into event categories which would really be nice in this instance to see if any of the AHI happens to be central in nature.
What is the AHI that is being reported by the machine with the software?

Mayur,

I'm no expert on this, but have chased similar rabbits down similar trails and will only share some food for thought and things to look into that may help and stimulate further avenues of attack.

First, I commend you for seeking help for your father.

Secondly, and to your question, the answer may unfold a little by inverting the question, 'Is there any way OSA would NOT cause cerebellar atrophy?'. At least to me, the answer must be 'how could it not?'. OSA at its most basic level is a slow repetitive strangulation. Strangulation kills via asphyxiation of deep, basic life support systems in the brain and brain stem. Even if one were to asphyxiate, the brain cells do not all just die at once, some die before others (an atrophy - albeit a very short one) until there is an insufficient function left to support life. The difference between mortality and morbidity seems to simply be how much and what type of brain has it killed. Over time this may manifest as the 'death of a thousand cuts'. For this example, I'm simply using the critical-path tissue, of course long term morbidity involves many other tissues and factors.

I agree with John Fisher in that I suspect they both likely contribute to the other...in this case, they both seem capable of being either chickens or eggs...with the scarier notion that OSA, regardless of the source, is repetitively asphyxiating tissues, with the brain showing profound insult, whether by depressions, cognitive decline, memory impairment, or observable atrophy.

Thirdly, whether chicken or egg, it seems imperative to know if the PAP therapy is working if for no other reason than to rule out further desats altogether. Others know much more about this, so I defer.

Lastly, an atrophy is a loss...a decline. The big question then becomes slowing, stopping, and God willing, reversing that. There is some hope of late, that it may actually be possible to (re)grow brain tissue in vivo. The most important factor appears to be exercise...I believe the researchers called exercise 'THE Factor'. Dissected rat brains showed that exercising rats had brains 'fizzing' with new cells, while sedentary rats had atrophic brains and died at much younger ages. Another neurogenesis agent appears to be Lithium...with the orotate salt being available OTC. Lecithin also seems to improve cognition by supplying in sufficient amounts the phospholipids that the brain is primarily made of...no bricks-no house so to speak. Green tea is also a well-known cognitive improver and protector and is cheap and easy like the others.

I hope your find your answers for both of your sakes. Please look into these

Mayur,

Not to pile on, but a few other questions that might produce fruit just in case. Since you've been to so many neurologists, I'm offering a few things that may slip by traditional medicine.

Do you know your father's B12 and folate levels? These are critical to nerve building and since around half the population has a defect that interferes with their methylation into bioactive form (Google MTHFR), they are rampantly deficient. If caucasian, high IQ, hispanic, or of Mediterranean descent the odds are even higher. Easy fix: Use pre-methylated forms...Methylcobalamin..aka Methyl B12 (Jarrow brand is excellent)...and methylfolate, not folic acid...Solgar makes a good version using Merck source product, so it's the real deal.

Do you know if your father has amalgam (mercury) fillings in his mouth? Mercury is an EXTREMELY potent neurotoxin and if one has the MTHFR defect, is poorly detoxified and so at higher risk for Hg buildup. Having these responsibly removed would eliminate another high risk factor.

I hope you find some relief soon. Good luck.

Mayur, if you don't mind, I will jump back into the conversation and share my own experience, which hopefully will help you and your father.

First of all, a lot of neurologists are very hesitant to provide a "preliminary" diagnosis until there are very clear signs of a specific disorder.

Second, some disorders, such as Multiple Systems Atrophy, are quite new. So, unless your neurologists have kept up with the literature, they might not know the diagnostic criteria.

Also, I found during my search for a diagnosis that most neurologists are very reluctant to provide a possible diagnosis if there is some uncertainty. I suspect there are two reasons for this. First, they do not want to shut off avenues of exploration - which a diagnosis can do. Second, they fear legal action if the diagnosis is incorrect.

After a couple years working with a very good neurologist, I realized from my own research that it was most likely that further testing would not yield a definitive diagnosis. As a result, I took charge and asked my neurologist if my situation might be the result of a specific condition. I then had him walk through the diagnostic criteria. He finally agreed that the diagnosis of Sporadic OPCA was the most likely cause of my symptoms.

Why did I do that? First of all, I finally had to admit that we were in a range of conditions where there is nothing that the doctors can do except help address the symptoms. Further tests might help confirm the situation. But they probably would not. So, I got on with living with a chronic illness.

I also took time to read about living with a chronic illness. I can highly recommend the following book:

http://www.amazon.com/Delicate-Balance- ... 738203238/

It's not perfect, but it definitely helped me realize that while I am *constantly* impacted by a chronic illness, it does not need to define me.

And finally, I decided to be stubborn. Though I am constantly dizzy, and have had more than my fair share of chances to commune with the ground (in other words, I fall down periodically), I still continue to walk. It's a daily struggle. But I firmly believe in the "Use it or loose it" approach. So, if, due to the dizziness and in-coordination, I gave up on walking, I would quickly loose my ability to walk. I force myself to speak clearly. I force myself to read (due to the cerebellum problems, I have pretty severe nystagmus). Accepting a chronic condition is just the first step. Deciding to live in spite of it is the next, and constant battle.

One thing I have found as my own condition has progressed is an increase in my sleep apnea. In addition to the severe obstructive sleep apnea, I developed pretty severe central sleep apnea. And yes, central sleep apnea can be a serious issue. Due to unmanaged central sleep apnea (i had a hard time getting my neurologists to pay attention to it), I developed uncontrolled high blood pressure. That combined with Ibuprofen to address the early morning headaches led to permanent kidney damage.

So, it is very important to get the sleep apnea under control.

Using an auto CPAP might be one way to find the best pressure for your father. And it's quite likely that he needs more than one "best" pressure. Most doctors would not believe that, but I *KNOW* from my own experience that if I am stressed and tired, my apnea (both obstructive and central) are worse than if I am not. And of course, that only makes all the other symptoms worse, which sets me up for another bad night.

In fact, getting my sleep under control has been the most important thing to help me manage my situation. I finally went on disability several years after my neurologist recommended it. The stress at my work environment as magnifying all my symptoms. Going onto disability (and having the social security administration agree that I was permanently disabled within only three months) greatly reduced my stress and helped me reclaim some of my ability. It continues to progress. So, I know that I will once again be back facing those same symptoms. But at least I will have a few months / years without them.

I share all this to help you understand that I do understand your father's situation. I also know that getting sleep under control is probably the most important thing to help him feel better able to face his situation.

But you might need to have a pretty frank discussion with a neurologist that is a sleep specialist. I went through the very same situation. I talked with my neurologist about my situation and how I found it important to sleep well. We went through a few iterations and tests that confirmed what I was saying. He now recognizes that I am trying to make the most of my situation and not just looking for disability. In fact when I came back to him a couple years after he suggested disability, he laughed and told me that it's almost axiomatic that those who they feel need disability the least want it the most and those who need it the most want it the least.

But it may take a year or two before your father is able to find a doctor who will work with him in that manner.

I sure wish you and your father well. You have my sincere empathy as you struggle toward a better control of his sleep and symptoms. And if you need to take the conversation offline, please feel free to private message me.

[quote="JohnBFisher"]

(in other words, I fall down periodically), I still continue to walk. It's a daily struggle. But I firmly believe in the "Use it or loose it" approach. So, if, due to the dizziness and in-coordination, I gave up on walking, I would quickly loose my ability to walk. I force myself to speak clearly. I force myself to read (due to the cerebellum problems, I have pretty severe nystagmus). Accepting a chronic condition is just the first step. Deciding to live in spite of it is the next, and constant battle.

[quote]

About falling, I wonder if taking rehab physical therapy for "Balancing" could help.

avi123 wrote:... About falling, I wonder if taking rehab physical therapy for "Balancing" could help. ...

Thanks for asking. It won't help me the same as it would help someone that does not have degeneration. Instead, I need to just push ahead and concentrate on keeping going.

For example, I've been in VERY busy environments before (such as at a State Fair). The crowds and the sounds stress my cerebellum. At one point one year it reached the point that it felt as if the world was turned 90 degrees. I was standing straight and walking ... I had to focus only on what my eyes were telling me, because my sense of balance was telling me that I was on my side walking along a wall.

That amount of variability requires that I constantly focus on walking or getting about. And that amount of concentration on those perfectly automatic things we do tends to tire me.

The physical therapists to whom I've talked said that in my case that same variability makes it very hard to "reset" my sense of balance. And they felt that what I do helps more than anything else. Still, I walk with at least one and sometimes two hiking staves to help keep myself upright. I don't need it for support. But without it, I am much dizzier than I am with it.