Cyclical Cushings Disease - My Surgery Story
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- Опубліковано 23 лис 2020
- Hi, I'm Noura and I have Cyclical Cushings Disease! Subscribe to me for more information on Cyclical Cushings disease, how to test, how to get diagnosed, and follow my post surgery journey!
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Thank you so much for sharing your experience, my wife will be operated tomorrow and I feel kinda better once i watched your video ..
I'm so glad I was able to help. I hope your wife is doing well.
thanks for your story. how long was recovery??
about 6 months for major recovery for me
Hi, first of all thank you for sharing your story. Last year my son who was 7 got diagnosed with Late onset CAH. Since started on Hydrocortisone hes put on 20plus kgs (im a aussie) and hes autistic so eating is sensory and not alot. However Ive noticed buffalo neck, high blood pressure, round face stretch marks etc. I just got his blood work back 17 ohp high which isnt unusual CAH but SHBG was low. My question is too you, Do they do a SHBG test for cushings? Hes never had that test done and im wondering if there testing him for something else. Thank you once again
Hi! Late onset CAH and Cushings overlap a bit because theyre both cortisol related! I have a family member with CAH. That being said, it can't hurt to test for Cushings. They do sometimes use SHBG as an indictor for moving towards testing of Cushings. See this article for more information: medlineplus.gov/lab-tests/shbg-blood-test/
I was told I had Cushing syndrome 3 years ago I had a Buffalo hump 3 years prior to that and it was removed 3 years ago. I thought I was back to normal but lately I been seeing the Buffalo hump is back my face has gotten rounded I have gain so much weight and I feel so depress😩 how long has your process been
I’m so sorry!!!! My process has been going on for upwards of 6 years, but two with active cushings disease
I'm pretty sure I have this and it's gotten worse the last couple of years. I had high cortisol then a normal ATCH test and then for my suppression test that was normal but I have every single symptom and my thyroid levels were 100% normal as well.. I just don't know
sometimes with cyclical patients you have to do more testing. I had 10 normal tests before my abnormal ones
how did you find your neurosurgeon and would you recommend the doctor who did your surgery?
Does the weight come off after the surgery? Thank you for sharing your story 🙏🏼
i lost almost 20 pounds post surgery, but then had a second tumor and gained 50.
Okay so tell me if I have Cushing's why should I do surgery and why not just stay with the cushings
Because Cushing's disease reduces life expectancy. Plus the over weight that has a enormous impact on your social life. The tiredness too... Well, there are a looot of reasons.
well you have to treat it somehow. its dangerous and life threatening. however, there are different ways to treat. I'm treating my second tumor medically. I would consult your doctor about your options so they can best explain the positives, as well as the risks.
How long did you have the tubes in your nose.... and could you breathe with them in?
The tubes weren't so bad. I had the balloons in for three days and those were way worse for me. I couldn't breathe through my nose with the balloons in.
@@Chronicallyyours_ im claustrophobic so tubes scare me... this is why I ask.
@@TTPSURVIVOR the tubes itself were not overwhelming for me. However there are alternatives I believe. You should speak to your surgeon prior to find what works best for you!
@@Chronicallyyours_ thanks...