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My Journey - Severe Sleep Apnea and a Concussion

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Replied by pnaadmin on topic My Journey - Severe Sleep Apnea and a Concussion

It sounds like you definitely would benefit from going to a pituitary center. Cedar's has a great pituitary center and we do have some specialists in Colorado. I have included links to the pituitary program at Cedar's and a couple of the pituitary specialists in your area. There are other specialists in Colorado and you can find them in our physician listing. Go to the Extended Search and select CO from the drop down menu in the state field. 

https://pituitary.org/medical-resources/hospitals/1193-cedars-sinai-medical-center

https://pituitary.org/medical-resources/physicians/1551-dr-kevin-o-lillehei-m-d

https://pituitary.org/medical-resources/physicians/2961-margaret-wierman

It is amazing how resilient our bodies can be. I hope you are able to find good care and get some answers.

Take care,
Tammy
9 months 5 days ago #10734

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Replied by LucyG0877 on topic My Journey - Severe Sleep Apnea and a Concussion

That sounds like a good idea, thank you Tammy.  

I also forgot to mention, I have another skull based tumor on my right side skull.  It's called a benign osteoma, it's 2cm.  But the doctor said it's growing outward and not pressing into my brain.  I've had this osteoma for 15 years.  I'm thinking now that the pituitary tumor I have is causing the osteoma, which is a bony tissue growth to grow because the last 2 years it seems to have gotten larger.  

Sometimes I marvel how I'm walking around with 2 tumors in my head.  
9 months 5 days ago #10733

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Replied by LucyG0877 on topic My Journey - Severe Sleep Apnea and a Concussion

Thank you very much Tammy for all of this information!  I am going to read it all and be prepared for my apt. next Tues., 9/03.  I was in denial about the tumor for the last 6 months and was hoping it would all go away, but it's only gotten worse.  

Also, as I live in Colorado I realize we don't have the best hospitals and doctors that specialize in this so I will keep my endocrinologist in Denver but if surgery is needed I will be getting it done at Cedar Sinai USC hospital in Los Angeles because my family lives there and can help me recover and get back on my feet.  I called my health insurance today and they confirmed that the hospital is in network.  

Now I just have to take an MRI with contrast to get more details and the hormone lab panel to find out what the next steps are.  

Health & Wholeness!
9 months 5 days ago #10732

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Replied by pnaadmin on topic My Journey - Severe Sleep Apnea and a Concussion

I sent my previous reply before I saw your newest post. With all of those symptoms, I definitely recommend finding a specialist to help you determine the correct course of treatment. If you can go to a pituitary center, that would be even better because they have multi-disciplinary teams that all work together to determine the best options for your individual case.

Tammy
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9 months 5 days ago #10731

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Replied by pnaadmin on topic My Journey - Severe Sleep Apnea and a Concussion

Hello Colorado Gal,

Thank you for sharing your story. I recommend that you learn as much as you can about pituitary tumors before you go to your appointment with the endocrinologist. We have a great deal of information on our site that could be helpful, including information about symptoms, treatment options and how to get the best care. Not all endocrinologists have the experience necessary to successfully treat pituitary tumors so it is important to find out how much pituitary experience your endocrinologist has. Pituitary specialists can make a big difference in your quality of life.

Here is a section of our website that can be very helpful with information about the questions to ask and finding the right doctor:

https://pituitary.org/table/get-answers/

We also have a list of pituitary specialists and pituitary centers on our website. 

Pituitary Specialists:
https://pituitary.org/medical-resources/physicians

Pituitary Centers:
https://pituitary.org/medical-resources/hospitals

I also recommend learning about the different types of pituitary tumors and general information about the pituitary gland. This is a great section for finding out about pituitary disorders and general pituitary information:

https://pituitary.org/knowledge-base/disorders

I know this is a lot of information but we believe that knowledge is power and learning about pituitary tumors will help you make better decisions about your care. Feel free to contact us if you have any questions, we can be reached at (805) 499-9973 or you can email me at [email protected]

Take care,

Tammy Mazzella
Pituitary Network Association
(805) 499-9973
[email protected]
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9 months 5 days ago #10730

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Replied by LucyG0877 on topic My Journey - Severe Sleep Apnea and a Concussion

In case it may help others, here are the symptoms I had for both:

Central Sleep Apnea, Severe - 
Prior to my diagnosis for 1 year I had the following symptoms: 

Numb fingers and toes upon waking up in the morning
Waking up multiple times at night gasping for air
Low oxygen levels  
Heart pain 
Tiredness during the day

Pituitary Tumor - My symptoms, had for 3 years with progressive worsening 

Eye muscle weakness, floaters in eyes, eyelid drooping
Nausea
Severe headache in forehead and temple
Involuntary body movements when sleeping, tremors, hands and legs moving and twitching
Biting my tongue when sleeping, causing tongue to bleed
Dizziness and vertigo
Anxiety and depression
Pain at the base of my skull like it's on fire
Dry tongue, excessive thirst
Sinuses constantly draining
Nerve pain in jaw, so bad that I had a good tooth pulled out thinking it was a bad tooth.  I believe my pituitary tumor may be causing occiptical neuralgia, have to confirm with the doctor
Hair loss, hair falling out in clumps. Dermatologist said I have female alopecia, but I never took any tests
Central Sleep Apnea, severe
Weight loss:  1 year ago I was a healthy 150 lbs, today I am now 129 lbs.  I stand at 5 ft 6 in. and I am shedding weight like crazy, it's scarying me.  I had to drop down 2 sizes and do not look well.  
Confusion, most recently

I saw different doctors for all of the above for the last 3 years and no one was able to connect the dots, until the concussion in February forced an MRI to be performed.  I'm grateful now for that concussion. 
9 months 5 days ago #10729

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