James Skinner

[jskinner]

I thought I should give an update on how the appointment when with the ENT here in NS. First off I must say I liked this ENT. He spent over an hour and a half with me talking to me about my situation !!! I don't think I have ever had a doctors spend that much time with me, ever.

First off he wanted to send me for a few tests. He wants to have my nose and throat CT scanned (which is happening later today) Second he has ordered what he called a level 3 at home sleep test to see how well the mantibular advancement device is working. (Its definitely helping but not keeping the apnea under control well)

He proposed three possibilities once he has some of the results back:

1) He thinks that I should probably get the septoplasty and turbinate reduction done that I was originally going to get done in Ottawa. He doesn't know if it will fix the problem but thinks it might be worth a try. Its possible that the mucus membrane swelling with still occur after this. I'm a bit frustrated since this was supposed to be done on May 14 and then June 10th. I still think this would be treating a symptom (why is there swelling in there, no one seems to know) but at this point I would do it since I am desperate. He has booked the OR now in case we decide to go ahead with this option.

2) A temporary tracheostomy. This scares me a bit but I really need the relief. I can tell the last 6-8 months have been stressful on my heart and I have had numerous events (after my initial big on on Jun 15, 2006) that have affected my right side. I can't tell you how upsetting it is that hypoxia has damaged me this way. Worse yet no doctor to date believes that this right side problem could have been caused by my sleep apnea.

3) Sending me for consultation for possible MMA surgery. This too is scary but the thought that I could actually be cured is very appealing. Besides I seem to be running out of options. If I thought for sure this would work I would do it in a minute, despite the long recovery time. I got the referal today from the specialist in Halifax that would do it but the initial consultation. Its is not until Nov 19! Which I assume means that surgery would not be until 2008. I can not believe how slow the medical system is here...

Anyway I felt a bit hopeful after seeing this ENT. He was very upfront and honest. He gave me lots of options and seemed to try and help. He didn't seem to have the god complex that so many doctors have.

I'm so tired of waiting and suffering though.

-James

[DreamStalker]

You sure have been through a lot James ... I hope your new ENT helps get you all fixed up right soon.

Take care and best wishes!

[ozij]

I hope things turn out well for you, James, It does sound promising - even if it is frightening.

Keep us posted.

O.

[JeffH]

Why not try them in the order you posted them.

The first one makes sense to me, having had the septoplasty. You will probably be amazed what it will do for your breathing. You may be able to stop there. I say go for number one anyway.

Good luck,


JeffH

[mckooi]

Hi James,

I had my first deviated septum when I was 20 years old, prior to that I was not feeling well due to blocking in breathing thru my nose for couple of years and did reduced my performance in the classes and suffered from lacking of concentration. My ENT proposed to (deviate septum) remove the soft bones and I had it done. After that I had my flying colours again in the university. Due to able to bread well, I was able to do more execises and believe it or not I was able to run for 20km any time in any day and had my heart beat tested as 45-50 per minutes, which listed as superd athelatics.

After 10 years or so, I had my second deviate septum and turbinates reduction again as I had hard time to breath again and I guessed mainly due to stressful work life and quality of the air where I lived. Had my secodn devaite septum due to bones groeing back and remove the turbinates again. I was back to good health again for couple of years.

But snoring was getting worst and headache was very consistant in almost every morning when I wake up, I had headache (especially during winter season and only sleep couple of hours due to projects timeline - Real big Headache). The snorning continues and my performance in daily life also deteroiting until I was/am no longer enjoying daily life. Lately, I was convience that I had sleep apnea a severe condition (was detected fall in sleep during driving and caught dozzing-off and stop breathing right in front of the Red light on the road)...pretty scary thinking about it and I could had just killed/knocked down someone (thanks God it did not happened).

I enrolled into the Sleep center and after couple of tests and now the sleep specialist/research doctor enrolled me as one of the research participants. The doctor is very experience and very well known in the medical industry. The good thing is that this research program has 3 major doctors and researchers are conducting the evidence and finding of sleep apnea and related issues/symtomps. I was thinking that you might want to try and check it out. If you intretsed please PM me.

Take care and god bless you and those that suffers from Sleep-Apnea.

Best Regards,
Mckooi

[mckooi]

Hi James,

Can you let me know what time did this event occured (see cutting below messge from your previous)? It is between 4am to 9am?

Message from James.........2) A temporary tracheostomy. This scares me a bit but I really need the relief. I can tell the last 6-8 months have been stressful on my heart and I have had numerous events (after my initial big on on Jun 15, 2006) that have affected my right side. I can't tell you how upsetting it is that hypoxia has damaged me this way. Worse yet no doctor to date believes that this right side problem could have been caused by my sleep apnea. [/size]

[jskinner]

Hi James,

Can you let me know what time did this event occured It is between 4am to 9am?

It was during the night while I was sleeping. No way of really knowing for sure what exact time. I went to bed perfectly fine on June 15, 2006 and woke up with numbness, tingling, and weekness in my right side. It took me about 2 months to recover from that but I did get pretty much back to normal expect for a few odd sensations in my limbs.

However during the Dec-Apr time frame where I had terrible congestion during the night and trouble breathing even during the day. I probably had a half a dozen or more smaller events like the initial one. Each time I would wake up with a splitting headache and have trouble moving my arm and leg. Sadly it doesn't seem to be clearing up after all these additional events I can not tell you how upsetting it is. Epically since I knew all those months that I was injuring myself nightly and in grave danger from not being able to breath but I could get no medical professional interested...

[jskinner]

Why not try them in the order you posted them.

I would likely agree with you if I was not suffering so. Getting the first one done means that I will likely have to wait 2 or more months before I will know (by the time the surgery is done and healed) I'm just not sure I can continue to suffer that long. I'm also just not sure if its safe to go that long. I wake up every morning now with my hearth racing and a heavy pressure on my chest. (In addition to all the usual apnea symptoms) It takes 20-30 minutes for my heart to get back to normal each morning. It often takes 8 or 10 hours before I feel like doing much. Before getting on CPAP I had the racing heart but not the heavy chest feeling. Even more scary is that I had another small one of the right side events on Friday. I just have to get the apneas stopped. I'm leaning towards going #2 first although I think the ENT will agree with #1 first.

I also have real doubts weither #1 will fix the problem. All the ENT's that I have seen have said that the deviated septum is slight and that they normally wouldn't recommend fixing it. Also when they decongest my nose my turbinates are not to large, the surgery would just make more room for the swelling. To me the swelling seems to be on all a musucs membrane issue so I'm not sure that making more room at the inferier turbintes will solve the problem elseware (but it should help some) In the end I will do it though as something needs to be tried and it seems like its relatively safe.

My gut still says its a problem that has not been figure out yet and that is largely a tissue/mucosa issue.

-james

[JeffH]

Sorry my friend. I really hope you find a solution to this mess. I hate it that your are suffering.


JeffH

[jskinner]

Sorry my friend. I really hope you find a solution to this mess. I hate it that your are suffering.

The one thing I can say is that the support of this group is one of the few things that has helped me continue through all this. I am indebted to you all. Thank you.

[gulfpearl]

James I hope the doctors get you straightened out, you have been through so much. I think we are all indebted to you for all the help your Encore Pro Analyzer program has helped all of us that use it. Thans very much. My heart goes out to you.

[Guest]

James,

My thoughts and prayers continue to be with you in your dealing with these issues. As stated above, I too am indebted to you for the program of EPA and how it has helped me.

I think that I remember a while back that cultures were done on the mucus membranes, but if they were not, maybe the doctors can take some cultures to see if there is a bacterial infection. Even if they already have, if you opt for the deviated septum surgery ask the dr to take some deep cultures while he is performing the surgery (at least then you will be under anesthesia and would not have to be conscious for the culture swabs).

Also, have you done any research on autoimmune conditions that could be the cause of the problems (really just a shot in the dark, but I have/had one where my body attacked by blood platelets and reduced them to levels that pretty much gave my dr's heart attacks.) I will see if I can find anything on this on the internet and PM you any links I can find.

TM

[Auricula]

James, Have you inquired if you could be a patient at the National Jewish Medical and Research Center in Denver, which is considered the top respiratory hospital in the U.S.?
http://www.njc.org/
I don't know what their current policy is on payment, but its services were free when it was founded. Maybe you could present your interesting case and they would agree to treat you.
A member of this board (can't remember who) was evaluated there several months ago and was very impressed with their work. He wrote extensively of his experience there and it sounded like his workup was incredibly comprehensive.

[LDuyer]

James,

My apologies for not having followed your posts enough to know what led up to this. But I wish you well.

I hope that your heart is being watched, considering what you mentioned. I know that's viewing the symptoms and not the cause, but that's a symptom you don't want to neglect. I'm guessing you've got every doctor checking you out, but I had to mention it.

BTW, I've also heard wonderful things about the National Jewish Medical and Research Center in Denver.

Take care.


Linda

[ozij]

James, Have you inquired if you could be a patient at the National Jewish Medical and Research Center in Denver, which is considered the top respiratory hospital in the U.S.?
http://www.njc.org/
I don't know what their current policy is on payment, but its services were free when it was founded. Maybe you could present your interesting case and they would agree to treat you.
A member of this board (can't remember who) was evaluated there several months ago and was very impressed with their work. He wrote extensively of his experience there and it sounded like his workup was incredibly comprehensive.

That member was dllfo.

O.