update on Scott
- Thread starter Larra
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DSRIGGS
Yes, that is chocolate covered bacon
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Thanks Larra and my apologies for not updating you guys.
I am getting a sleep study tonight so don't have much time to go into detail but I was in St Mary's from Friday AM until yesterday at 4 PM. I am okay and had some pretty in depth testing. BTW, the nurses and Docs there were great, very thorough and listened quite well. When I have more time, probably tomorrow, I will give you a full update. I am positive about the testing that has been completed and think we are honing in on a DX.
I am getting a sleep study tonight so don't have much time to go into detail but I was in St Mary's from Friday AM until yesterday at 4 PM. I am okay and had some pretty in depth testing. BTW, the nurses and Docs there were great, very thorough and listened quite well. When I have more time, probably tomorrow, I will give you a full update. I am positive about the testing that has been completed and think we are honing in on a DX.
Hang in there Scott! Positive thoughts that the right diagnosis is forthcoming and you'll soon be back on the path to health.
Good luck with the sleep study, Scott.
hilary1617
First time at the rodeo.
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Good luck and hope it is a restful night despite the headgear!!!
writegirl
Work in Progress
Good luck, Scott!
DSRIGGS
Yes, that is chocolate covered bacon
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Thanks ladies.
I got back home about 6PM tonight. So they think my issue is that I still have mild to moderate apnea. Apparently when on my back I am having about 16 episodes an hour. The Dr said that if I can simply stay sleeping on my side that it would be as effective as CPAP. I don't tolerate CPAP so side sleeping it shall be. All of that being said, I don't buy that Apnea has anything to do with my issue. I am not sleepy tired at all 98% of the time and I don't "rubber neck", you know falling asleep for a second and waking up bobbling your head. I end up going out involuntarily with no warning and I wake up in a fog. The Doc said if after a month my issue doesn't go away he will do testing for Narcolepsy which I understand is a 48 hour test.
So that is an update with my "involuntarily falling asleep with warnings or intent to sleep".
Naturally with me nothing is ever simple or isolated to one issue. As I mentioned in my post at the top of this thread, I had a 24 hour EEG, was on Heart monitor for 3 days in hospital, had a brain CT and a brain MRI. Well on the MRI they didn't find a lesion or tumor on the hypothalamus because it can be a reason for my symptoms, however; the MRI showed that I have one or two lesions on my brain stem that are known as pontine cavernomas.
What the hell is a Pontine Cavernoma?
"A cavernoma or cavernous malformation is a vascular abnormality of the central nervous system. It consists of a cluster of abnormal, dilated vessels. Pathologically, it is red to purple in colour, appearing as a raspberry."
The good news is that it doesn't appear to be bleeding now. The bad news, I have a f**king lesion in one of the worst possible places and that makes surgery extremely risky if it does start bleeding or pressing on the nerves going through the brain stem (controls minor little things like vision, balance, breathing, etc.) and these things are known to bleed over time because the walls are weak. Blood can basically do a slow ooze or can develop a thrombosis (clot).
I also am not 100% convinced that this doesn't have something to do with my other issue but they are the experts and not me.
As far as treatment plan, well that has changed about 5 times today. I was scheduled for a follow up vist on 2/22 with the Neurologist to review the MRI and findings as well as developing a go forward plan. I stopped by that area after my sleep center appointment to understand what this Neuro visit was for because for one it just showed up on the printed itinerary they gave me yesterday, and secondly, the general med docs overseeing me in hospital told me the lesions were okay and to just keep systolic BP below 140 (no issue there as getting to 90 is abnormal for me) so I had no idea what the appointment was for (didn't list any testing and I didn't want a 6 hour drive again just for a "hey how are you doing " visit). The lady at the desk actually got the Doc on the phone and he explained what he wanted to do. My wife is going to Socal with her sister to move our niece to Anaheim and they were planning on leaving the 23rd so that was bad for Dianna. In any case they changed the appointment to the 17th of February. Then an hour later I got a call saying, well Dr Stitt spoke with the Department head and decided that I didn't need to make the trip back to Rochester now and that he would order an MRI in 6 months for me here in Peoria and then have disc sent to him for review. Treatment if not bleeding, is to watch the pontine cavernomas to see if growing or bleeding.
Hopefully the mrereffers don't grow or bleed because surgery in that area can result in death or major disability
So we sleep on side and see if that helps my sudden loss of consciousness and if not better in 30 days the Dr wants a two day sleep test to check for narcolepsy. At the same time a watch and see protocol is being followed for the brain lesion(s).
Thanks for all the support!
I got back home about 6PM tonight. So they think my issue is that I still have mild to moderate apnea. Apparently when on my back I am having about 16 episodes an hour. The Dr said that if I can simply stay sleeping on my side that it would be as effective as CPAP. I don't tolerate CPAP so side sleeping it shall be. All of that being said, I don't buy that Apnea has anything to do with my issue. I am not sleepy tired at all 98% of the time and I don't "rubber neck", you know falling asleep for a second and waking up bobbling your head. I end up going out involuntarily with no warning and I wake up in a fog. The Doc said if after a month my issue doesn't go away he will do testing for Narcolepsy which I understand is a 48 hour test.
So that is an update with my "involuntarily falling asleep with warnings or intent to sleep".
Naturally with me nothing is ever simple or isolated to one issue. As I mentioned in my post at the top of this thread, I had a 24 hour EEG, was on Heart monitor for 3 days in hospital, had a brain CT and a brain MRI. Well on the MRI they didn't find a lesion or tumor on the hypothalamus because it can be a reason for my symptoms, however; the MRI showed that I have one or two lesions on my brain stem that are known as pontine cavernomas.
What the hell is a Pontine Cavernoma?
"A cavernoma or cavernous malformation is a vascular abnormality of the central nervous system. It consists of a cluster of abnormal, dilated vessels. Pathologically, it is red to purple in colour, appearing as a raspberry."
The good news is that it doesn't appear to be bleeding now. The bad news, I have a f**king lesion in one of the worst possible places and that makes surgery extremely risky if it does start bleeding or pressing on the nerves going through the brain stem (controls minor little things like vision, balance, breathing, etc.) and these things are known to bleed over time because the walls are weak. Blood can basically do a slow ooze or can develop a thrombosis (clot).
I also am not 100% convinced that this doesn't have something to do with my other issue but they are the experts and not me.
As far as treatment plan, well that has changed about 5 times today. I was scheduled for a follow up vist on 2/22 with the Neurologist to review the MRI and findings as well as developing a go forward plan. I stopped by that area after my sleep center appointment to understand what this Neuro visit was for because for one it just showed up on the printed itinerary they gave me yesterday, and secondly, the general med docs overseeing me in hospital told me the lesions were okay and to just keep systolic BP below 140 (no issue there as getting to 90 is abnormal for me) so I had no idea what the appointment was for (didn't list any testing and I didn't want a 6 hour drive again just for a "hey how are you doing " visit). The lady at the desk actually got the Doc on the phone and he explained what he wanted to do. My wife is going to Socal with her sister to move our niece to Anaheim and they were planning on leaving the 23rd so that was bad for Dianna. In any case they changed the appointment to the 17th of February. Then an hour later I got a call saying, well Dr Stitt spoke with the Department head and decided that I didn't need to make the trip back to Rochester now and that he would order an MRI in 6 months for me here in Peoria and then have disc sent to him for review. Treatment if not bleeding, is to watch the pontine cavernomas to see if growing or bleeding.
Hopefully the mrereffers don't grow or bleed because surgery in that area can result in death or major disability
So we sleep on side and see if that helps my sudden loss of consciousness and if not better in 30 days the Dr wants a two day sleep test to check for narcolepsy. At the same time a watch and see protocol is being followed for the brain lesion(s).
Thanks for all the support!
Larra
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@DSRIGGS I bet it feels good to be back home again, even with only partial answers. For all you know, those pontine cavernomas have been there for years without causing any problems and are very stable. You wouldn't even know about them if they hadn't scanned your brain for a completely different reason. Let's hope they prove to be just, as they say, an incidental finding.
bearmom
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Glad to see this here. I glanced for an update on FB, but too much to wade through. It sounds like your finally getting answers that may lead to resolution. I wondered about narcolepsy when you posted something before. I've known one person with it, but her symptoms sounded more like yours than what I'd always thought, but I guess they'l figure that out.
I also met someone with pontine cavernomas while taking my mom to get a gamma knife (also called radio surgery) procedure for trigeminal neuralgia. The lady with pontine cavernomas was getting gamma knife for it, and I hadn't heard of it before that. She said it wasn't usually done that way, that hers had a genetic component, and relatives had had other things done. She was pretty open about sharing, and now I wish I'd have let her go on and on.
I sure hope the sleeping more soundly off of your back does the trick.
I also met someone with pontine cavernomas while taking my mom to get a gamma knife (also called radio surgery) procedure for trigeminal neuralgia. The lady with pontine cavernomas was getting gamma knife for it, and I hadn't heard of it before that. She said it wasn't usually done that way, that hers had a genetic component, and relatives had had other things done. She was pretty open about sharing, and now I wish I'd have let her go on and on.
I sure hope the sleeping more soundly off of your back does the trick.
Clematis
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So not sudden syncope but sudden snoozing? Wow. You'll acclimate quickly to sleeping on your side. (My whole life I slept on my side until I was dx-ed w/ GERD just before DS and was told to sleep elevated on my back. It took me a while to adjust to sleeping on my back on a bed wedge but now, a year later, I can't sleep on my side.)
As for your scary-sounding pontine cavernoma -- what Larra said: They could just be benign thingies that never cause trouble.
Hope the new sleeping strategy does the trick!
As for your scary-sounding pontine cavernoma -- what Larra said: They could just be benign thingies that never cause trouble.
Hope the new sleeping strategy does the trick!
I'm glad you got some answers.
Susan in Tennessee
Well-Known Member
Welcome home! I'd be just like you, Scott, apprehensive that they've nailed the DX with the apnea. What did they say about your problems that make you think you have the redundant colon, obstruction, hernia, etc?
Annette
Annette
Spiky Bugger
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Guess what! You might save from money with this. My husband, who has positional sleep apnea that kicks in only when he's on his back, does not do well with CPAPs. But there is a device that is an apnea monitor...most often used on babies. Or senile people. Or, maybe, those who can't adapt to a CPAP. An alarm rings, wakes you up and you roll over. We need to get one.
And, in our part of the world, an apnea monitor...but not a CPAP...counts as "life support." And our electricity is charged for in "tiers," as you use more kW hrs, you move onto more expensive tiers. Those on life support get an additional 16.5 kW hrs per day at tbe lowest tier. So--because we have an ancient house with lousy insulation and useless AC ductwork and a pool and I need AC, but only to breathe--and we use LOTS of electricity, 16.5 kW hrs at the highest rate would be charged at the lowest rate, saving us about $75/month.
Just a suggestion.
And, in our part of the world, an apnea monitor...but not a CPAP...counts as "life support." And our electricity is charged for in "tiers," as you use more kW hrs, you move onto more expensive tiers. Those on life support get an additional 16.5 kW hrs per day at tbe lowest tier. So--because we have an ancient house with lousy insulation and useless AC ductwork and a pool and I need AC, but only to breathe--and we use LOTS of electricity, 16.5 kW hrs at the highest rate would be charged at the lowest rate, saving us about $75/month.
Just a suggestion.
Munchkin
Full of Fairy Dust
Wow. Glad to hear you are OK. Complicated problems are never solved quickly!
