Update on my situation (to June 2008)

jskinner · Post by **jskinner** » Tue Jul 22, 2008 1:02 pm

People keep emailing me on my situation and I keep meaning to post an update but never seem to get around to it. (sorry for all of you that have emailed me and I have not gotten back to) Because of that I have decided to post part of an update that I wrote to my Dr (after which she told me my problem was anxiety and tried to prescribe a sleeping pill)

I have been doing better the last few months. Still unable to breath though my nose at night but the Liberty Mask allows me to by pass the nose. Daytime congestion is some better too. At this point I am waiting to get a surgery date for MMA (been waiting since Nov 2007)

Here is what has been happening:

From Nov 2006 until Nov 2007 I was suffocating at night. I had great difficulty breathing after lying down. My airway would block/collapse quickly. CPAP use caused additional swelling. In April 2006 I started using a Mandibular Advancement Device (MAD) to try to control the sleep apnea. This helped the apnea some but increased the suffocation since I could no longer open my mouth to breath at night to compensate for the nasal congestion. I suffered five or more of what seem to be tiny strokes to the combined effect of this suffocation and sleep apnea. All attempts to get help from doctors failed with most being dismissive. Out of desperation on May 3rd I went to Canadian tire and bought some black tubing that could be inserted into my Mandibular Advancement Device as a breathing tube. Finally after a year of physical suffering and injury I got some relief from the nightly suffocation.

Nov 5, 2007 I started physiotherapy in Berwick. Physiotherapist agrees there are subtle problems with my right side. The physiotherapist’s tests seemed much more thorough than any doctors’ up to that point. I find it frustrating that she could see the problem fairly easily when doctors have been so quick to dismiss the problem.

Nov 19, 2007 Dr Goodday takes x-ray showing obstruction. Finally I have visual proof of the problem. Up until this point doctors/family/friends continued to question that I could be suffering from sleep apnea (despite three positive sleep tests, oximeter tests, and six months of CPAP data.) Dr. Goodday is unsure if he can perform MMA surgery to correct. The xray can bee seen at http://james.istop.com/apnea/reports/Ja ... atxRay.jpg

Dec 1, 2007 Start back on CPAP in combination with MAD. This was a big step forward. The eight months off CPAP were almost unbearable, not to mention the physical damage done.

Dec 11, 2007 I continue to have problems with my heart acting up. Doctors do not believe me so my mother takes me to the nurse, Jan Spence, at Aylesford Pharmacy. She detects very mild arrhythmia. She says if she had not been a cardiac nurse for 13 years she might have missed it.

Dec 20, 2007 Dr Gooday calls and says he has decided he can do a partial MMA after all. However, since he can only do a 5mm advance rather than the typical 10mm he is unsure of the out come.

Dec 24, 2007 Received Dr. Goodday’s book chapter on MMA. I was surprised to find my serrated tongue connection to sleep apnea. I had been telling doctors for years that I thought there was some connection to my swollen tongue and my sleep but was always dismissed.

Jan 14, 2008 I’m having a lot of trouble with sore tongue since I am only able to breathe though my mouth at night. I buy a second humidifier to run in parallel with my CPAP which helps some.

Jan 31, 2008 I have an MRI of the brain done in Kentville. This is done at the request of Dr. King in Halifax to try to identify cause of the right side problem.

Feb 5, 2008 I went to Kingston, Ontario and met with Dr. Fitzpatrick, Respirologist, and Nancy Farr, Respiratory Therapist. They recommend switching to Liberty Mask as I am having lots of trouble tolerating (and sleeping) with the combined F&P 432 Full Face Mask and MAD.

Feb 5, 2008 Meet with Dr. Fitzpatirck and Andre Tan, ENT. Both feel that the nasal problem/swelling needs to be addressed. They recommend turbinate reduction and septoplasty. They think it makes more sense to get this done in Ottawa or Nova Scotia. They do not seem to realize that whatever is causing the swelling needs to be identified and treated.

Feb 6, 2008 At the request of Dr. Ruddy I visit Dr. Marsan, my Ottawa ENT, to see if he has any more ideas on how to treat the throat obstruction. Dr. Marson seems annoyed that I am there to see him again. He states there is nothing more he can do for me. He recommends against MMA but gives no alternatives.

Feb 11, 2008 I have a check-up with Dr. Peter Edminson, the sleep dentist who created my MAD. He says I need to get the nasal problem addressed before going ahead with MMA.

Feb 14, 2008 Failed sleep test in Kingston. I don’t made it past stage-two sleep. Dr Fitzpatrick books retest.

Feb 15, 2008 Switched to Hybrid mask since I had to return the borrowed Liberty.

Feb 29, 2008 Got word that the MRI is negative. Dr. King’s office refuses to book a follow up appointment stating that the problem is not neurological since it didn’t show up on the MRI.

Mar 5, 2008 I am very frustrated by this point. I feel like no one is hearing what I am saying or even believing me. No one seems to understand that the problem has been a swelling issue for the past 18 months. Sleep apnea is a serious complicating factor but the swelling is what has been the issue. Out of desperation I decide to try and find the best nasal specialist in North America. I decide on Dr. Tichenor (http:// http://www.sinuses.com/) in New York City. I fly there and have a very thorough four-hour appointment with him.

Mar 6, 2008 I return to Dr. Tichenor’s office for sinus endoscopy and cultures. Diagnosis is chronic maxillary sinusitis. Cause is unknown. He recommends trying the following protocol: Nasonex, Grossan Irrigator, Sudafed, Guaifenesin, Nystatin Gargle, and Amphotericin B Nasal rinse. He recommends that I consider getting sonoplasty done to reduce the turbinates (he discourages against turbinate reduction surgery) He says if the problem cannot be treated with medication I may need to have FESS sinus surgery. You can view my endoscopy at http://www.youtube.com/watch?v=44EB-Xc8my4

Mar 21, 2008 Since I was still having trouble with racing heart and no one will take me seriously in Canada my sister invited me down to Ohio for Easter so that I could see her husband’s cardiologist. Upon meeting me the cardiologist did not believe I could have sleep apnea. It was only after quite a bit of talking and showing of imaging did he even acknowledge it was possible. He recommends I get more investigation done.

Mar 25, 2008 Heart Stress test done. Rapid heart beat. Test had to be stopped early due to heart reate being over 200. Despite the findings the doctor dismisses them because I am on Sudafed and says it is probably due to that. He does give me the name of an apnea expert, Anthony Dimarco, that he says I should see to confirm my apnea.

Mar 23, 2008 Bought Liberty Mask since Hybrid didn’t work as well. Slowly start feeling better. After about two weeks in, my heart finally calms down. This is about the same experience as when I went on CPAP initially.

Apr 10, 2008 Sleep retest in Kingston with 24 hours sleep deprivation. Still did not sleep much so Dr does not see any sign of apnea. He does however notice the mouth breathing.

Apr 11, 2008 After a month on Nystatin I had developed terrible muscle pain.(Myalgia) Dr. Tichenor says to go off the Nystatin as it should have worked by now anyway. He recommends seeing a dermatologist about the tongue.

Apr 23, 2008 Saw Dr. Malgorzata Klonowska at the Halifax sleep disorders laboratory. She is very thorough and seems to want to get to the root of the problem. She seems to understand that there is more going on here than just a normal case of sleep apnea. She also seems to realize that the root of the swelling needs to be identified. She gives me a referral to a doctor in Dartmouth that does somnoplasty. Unfortunately Dr. Klonowska is moving to the US so will not be able to investigate more herself. Her report is viewable at http://james.istop.com/apnea/reports/DrKlonowska.pdf

May 1, 2008 Saw Dr. Ruddy, my local ENT. He recommends against septoplasty and FESS as had been suggested by the other doctors. Despite that he refers me to a local FESS Dr. and an local allergist.

May 26, 2008 Sent an information package about my problem to Dr Dement. Never got a response.

May 28, 2008 Saw Dr. Gina Lacuesta, allergist, in Halfiax. She tests my allergies and the usual cat and dog show up. She prescribes Singulair & Prednisone for 22 days. She recommends I see a more aggressive ENT in Darthmouth. Prednisone makes me very unable to fall asleep and unlike in the past it did little to bring down the congestion. I gained a lot of weight in the 22 days.

June 3, 2008 Saw local allergiest Dr Jonathan Murray in Wolfville. Want to retest allergist even though they where just done a few days ago in Halifax. He gets me to record food intake.

June 4, 2008 Try to update Dr. Jiwani, my GP, with the latest developments since going to Ontario and NY. She insists I need tranquilders! I gave her a book on sleep apena since she doesn't seem very well educated about it, she didn't seem very impressed by that gesture. I told her to leave it in the waiting room for patients to read if she is unwilling to read it.

June 11, 2008 Sent an information package about my problem to Dr. Anthony Dimarco in Ohio.

June 16, 2008 Dr Murry allergy tests, cat, dog, and dust show up. Wants me to go on Candida diet again. I did this diet for 2 months while on powerful oral antifungals, I'm not sure of the point of doing it again.

June 20, 2008 Met with local member of the NS legislation (MLA), Leo Glavine, to see if there is anything he can do make the medical system more responsive. He says he will call my doctors and get back to me. Haven't heard anything from him yet.

June 23, 2008 Saw Gina Lacuestra again, she said if the predisone and singular haven't' helped by now then they won't. She is very skeptical about the idea that its a fungal problem and says to stop with the antifungals unless I get a positive culture.

July 3, 2008 Dr. Anthony Dimarco sends me an email saying that he has received my information. He says he is forwarding it on to Dr. David Hudgel at Henry Ford Hospital who is 'the expert in this field and in the best position to help you'.

tangents · Post by **tangents** » Tue Jul 22, 2008 1:55 pm

Jim,

Thanks for the update. Like others, I often wonder about your health status. I'm so sorry that you haven't found a definitive diagnosis and treatment yet. I hope you continue to feel better with the Liberty mask.

Keep in touch,
Cathy

PS. Does your sister live in the Cleveland area? Not that I know any "good" or even "qualified" sleep doctors, but I'd love to meet you for lunch or something!

Guest · Post by **Guest** » Tue Jul 22, 2008 2:49 pm

This is so outrageous. I want to just kill every doctor you've ever seen.

You are such a valuable member of the human race. Why can't people HELP YOU instead of jacking you around???????

You've helped so many people with your Analyzer. You've saved lives. I can't believe you're going to DIE of Sleep Apnea before the medical community will treat your problems!!!!

Isn't there an RT or Doc on this board that can help James??????????

Crap, we're willing to go overboard for a 6 year old in Brazil, and we can't help one of our own??????????????????

I just want to sit down and cry now.

Huggers,
Babette

Hawthorne · Post by **Hawthorne** » Tue Jul 22, 2008 3:04 pm

James- So good to hear from you! Everytime I come onto this forum (almost every day) I think of you and wonder how you are doing.
You have been through so much!
It is good to hear that you are some better but, I know it must be frustrating and discouraging not to have any definitive answers. This must be very hard on you. It has been!
All the best, James. I'm hoping that, very soon, there will be a clear diagnosis and treatment that will work for you and that you can put this all behind you and feel good again.
Thank you for updating us. So many people on this forum care about you!
Keep in touch as best you can.

danw61 · Post by **danw61** » Tue Jul 22, 2008 3:14 pm

Jim,
I have nasal swelling & congestion from allergies. Allergy shots have reduced the congestion by 90%. You should certainly be tested for allergies. If nothing else, it's one more thing you can confirm or rule out.

We're all pulling for you. Keep in touch.
Dan

JeffH · Post by **JeffH** » Tue Jul 22, 2008 3:27 pm

Hang in there James. You know we are all pulling for you. Wish there was something I could do.

JeffH

danw61 · Post by **danw61** » Tue Jul 22, 2008 3:27 pm

I forgot to mention, I use your Encore Pro Analyzer software all the time. It's great! Thank you so much!

JeffH · Post by **JeffH** » Tue Jul 22, 2008 3:29 pm

For those using James's software, there is a Paypal button on his site. If you are using it and haven't made a contribution, he could probably use it about now.

http://james.istop.com/EncoreProAnalyzer/

GumbyCT · Post by **GumbyCT** » Tue Jul 22, 2008 3:53 pm

Jim,
Good to hear from you. Hopefully you know that if you need for us to do something - just mention it here and I am sure something will come of it.

They say what doesn't kill you, only makes you stronger. You must be one tuff one about now

Still rootin for ya,
GumbyCT

Slinky · Post by **Slinky** » Tue Jul 22, 2008 4:09 pm

James! It is soooo good to hear from you. I only wish it could have been w/good news! *sigh*

You know, I'd be tempted to take that picture you posted here when you were so badly swollen and have it put on 6-7 T-shirts. Have your original avatar w/that beautiful smile of yours on the back of your T-shirt and the swollen one on the front and just "Before" and "After" and I would wear one to EVERY doctor visit!!!

Have cultures and biopsies NEVER shown ANYTHING??

The US News & World Report annual America's Best Hospitals issue is out. The top 5 ranked ENT departments in the USA are:

1] Johns Hopkins, Baltimore
2] U of Iowa, Iowa City
3] U of Pittsburgh Medical Center, Pittsburgh
4] U of Texas Anderson Cancer Center, Houston
5] Massachusetts Eye and Ear Infirmary, Boston

God's blessings, James

sleepycarol · Post by **sleepycarol** » Tue Jul 22, 2008 4:16 pm

Man have you gotten the run around!!!!

I wish we could do something here for you.

jskinner · Post by **jskinner** » Tue Jul 22, 2008 4:31 pm

tangents wrote:PS. Does your sister live in the Cleveland area? Not that I know any "good" or even "qualified" sleep doctors, but I'd love to meet you for lunch or something!

Yes she lives nearby in Painsville. I was down there for a week around easter. I spent a couple of days exploring Cleavland and near the end I went down to the Cleveland clinic just to wonder around. I visited the sleep clinic there and learned that I could have seen someone there with just a few days notice had a I thought of it sooner.

goose · Post by **goose** » Tue Jul 22, 2008 4:35 pm

Hey James,
It's great to hear from you again. I think about you often and wonder how things are going.....

Sounds like you're still going through the mill....that's a total drag!!!! I'm sorry to hear you're still suffering with no resolution in sight.....It's rather hard to believe that with today's medical technology that something can't be determined, however it sounds like a lot of your problem is doctors that just don't give a s**t......That's a sad commentary on the medical profession and business, whatever country or insurance system!!!!!

Hang in there James, you know you have a lot of supporters here that are pulling for you!!!!

Take care
cheers
goose

jskinner · Post by **jskinner** » Tue Jul 22, 2008 4:40 pm

Hawthorne wrote:You have been through so much!
It is good to hear that you are some better but, I know it must be frustrating and discouraging not to have any definitive answers. This must be very hard on you. It has been!

Yes its been pretty unbelievable. In many ways its completely ripped my life apart. Its hard to imagine that only a few of years ago I was a busy person working at a well paying telecommunications company in Ottawa. Life can surely change quickly when you get sick.

In some ways I wonder if I should have ever started CPAP. Life was hell before it but one has to wonder if the CPAP didn't contribute to nasal problem, it sure made it worse when it started.

Also I have to say a warning about mouth taping. I know its done widely on this board and if you don't have congestion problems I think its pretty safe. However once I got congestion I continued to do it, I should have stopped but didn't want the apnea. I was faced each night with suffering with apnea or taping and then slowly suffocating due to swelling. I have to wonder if I had just stopped using CPAP if I might not have had that second nurological accident. Will never know now but please if you mouth tape, be careful.

Hawthorne wrote:Thank you for updating us. So many people on this forum care about you! Keep in touch as best you can.

Thanks. This board has been a big support system for me. especially when I was living alone and in Ottawa when the problem first started.

jskinner · Post by **jskinner** » Tue Jul 22, 2008 4:42 pm

danw61 wrote: You should certainly be tested for allergies. If nothing else, it's one more thing you can confirm or rule out.

Been tested by three different allergist since this problem started. Always the same thing: cat and dog, and most recently dust.

I don't live with any animals.

Mask

Additional Comments: Equipment isn't correct, S9 ASV w/H5i

Update on my situation (to June 2008)

Update on my situation (to June 2008)

Update on my situation

Re: Update on my situation