Discussions

I saw this on facebook today and asked if I could share it here. I do not know the family myself but I know people who do know them.  
 
They are looking for ideas and places to help with her condition. 29 days in hospital not eating is terrible.  
 
Please find the story here in the link.  
 
https://www.facebook.com/brittanyhunkin  
 
 
PLEASE SHARE!!  
 
My name is Brittany Hunkin. My mother, Sharon Ellerington has been at Brandon Regional Hospital for 29 days now, due to a rare condition of which only 10 other people in the world have been diagnosed with. It's called "celiac artery compression syndrome". Basically, she has a ligament which is strangling her celiac artery which - I'm sure I don't even need to say - is very serious, painful, and life threatening if not properly taken care of. She has had no food or water in 29 days, and has a tube coming from her stomach and out of her nose to drain her stomach of anything that could pass through her intestines. The doctors have been trying to get a surgeon to do this extremely necessary surgery but have failed every time. Doctors have been contacted in Winnipeg about this and have virtually done nothing. No one is willing to take her case and help her get the medical CARE she desperately needs. So, I'm writing this to try and shed some light on her situation so that maybe someone, anyone, can help her become healthy again. Imagine if you were in her shoes: laying in a hospital bed for almost a month with no idea of when you'll be able to go home, feeling like the doctors couldn't give a damn about her well being, having your stomach tissue die a little more everyday along with your hopes of being healthy again. My mother is an incredibly strong woman. I've seen her battle breast cancer along with almost 30 surgeries. I need my mom in my life. I need her to be healthy and happy again. I need the doctors to care and step up and start trying harder to help her. Every time I walk into her hospital room and I see all the tubes and IV's coming out of her face and arms, my heart breaks a little more. I've seen and helped her through some rough health problems, but this is by far the worst. Please help my mother get the care and attention she not only needs, but immensely deserves. I just want my mom back.  
 
Thank you,  
Brittany Hunkin

anyone you think might be able to help or have a suggestion.

You should email this to newspapers and tv stations in Canada. Maybe that would push someone to come forward and help.

I am very surprised that her attending physician has not reached out for specialist assistance, what a shame. Anyway, my best suggestion would be to contact the Mayo Clinic in Rochester Minnesota and see if the docs there can help. www.mayclinic.org

It does sound like the attending physician is trying to get a surgeon onboard to take on the case. I can see how that would be very difficult and many surgeons wouldn't be willing to take this case on as it's extremely high risk. Perhaps her condition does not make her a surgical candidate? Does the risk outweigh the benefit for this surgery? What is this prognosis after surgery - if the surgery was to be successful. Unfortunately - not everyone and every medical case can be solved without causing undo harm. I feel for this lady and her family and I hope my post doesn't come across as being insensitive. It's an extremely rare condition and if it were my loved one I would urge them to go to a bigger center or find a doctor/surgeon who has previous experience in dealing with this exact condition. Try the Mayo Clinic would be my first avenue. Writing to the MLA's and politicians won't do much for finding a doctor willing to take this on in this area as it seems they've tried already.

It's been sent to numerous radio, paper and tv stations. The doctor has apparently contacted the voicemail or nurse in one place in wpg. But has now waited two weeks and heard nothing back nor tried elsewhere. Although rare and a touchy surgery something needs to be done to find a doctor asap that's willing to help Sharon. Please keep passing it on in hopes they find a Dr soon ..

I am quite certain that the statement that the doctors 'don't give a damn about her well being' is false, as is the statement that 'nobody is willing to take her case and get her the help she needs'. This is a rare condition (although not as rare as stated in the OP), and a surgeon needs to be able to perform the surgery; if he/she has never seen a case, how are they competent to do the surgery? The fact that she hasn't had food or water for 29 days does not mean that she is starving; the tube feeds and IV's are designed to get her the nutrients and fluids she needs without causing more symptoms. It is terrible that immediate care for every single common and rare disease isn't available for everyone in every city or town, but it is unrealistic to expect it. Posting this on Facebook or eBrandon is not helpful. To people watching a loved one who is sick, it may seem like the only or best thing to do, but it really doesn't take into account all the 'behind the scenes' work that goes on in finding care for an extremely rare condition, and someone to perform an extremely risky surgery.

Hopefully they find the right specialist and can help this woman, however not eating, being on iv only, for extended periods isn't that uncommon. I had a very close family member go 6 monthes last year. It can be very frustrating and discouraging. Keep talking to you doctor or ask for a different one if you feel you arent't getting the care you need. Good luck.

My heart goes out to this woman as it can be so awful to need help but cannot get it. Just the not knowing is worse than anything I think.  
 
But you are right, there is another side to this story that sadly we are not hearing. I wish someone from PMH would speak to the reasons - whether it is that there is no surgeon in Manitoba capable of doing a surgery like this or if no one wants to do the job. Which I can see - I know of instances here in town where a surgeon has refused to do a surgery as in his opinion "it was not worth it". I fully understand PMH's stance that due to privacy they cannot comment, but this family has made it fully public, so it is obvious they are good with it .  
 
People are getting the impression the health authority is heartless, it would be nice to hear they are not. I can't see them giving up on a young woman like this without exhausting everything at their disposal.  
 
Wishing the best for this family....

forgive me for this, some of you posters are missing the point, although yes there is two sides to every story....this side is coming from a daughter, hoping to get help for her mother. She is desparate to get help for her mom, it comes from her stand point, not the doctors or nurses. Have some compassion for this poor girl trying everything she knows in her power to do, awareness is a powerful thing especially in this day and age of social media! She has no medical knowledge of iv or feeding tubes. She just wants her mom healthy and out of the hospital, cut her some slack!  
Brittany I truly hope you find the help your mom needs! Thoughts and prayers go out to you, stay strong!  
 
Edited by socialmom, 2016-10-30 08:37:44

to the daughter for posting and getting this viral. SQUEAKY Wheel gets the grease. It worked and her mother will be getting surgery next week in Winnipeg according to the Brandon Sun and other news media outlets.  
Sometimes you just need to do what you think is right and be your own advocate.  
 
Edited by AnimalLover, 2016-10-30 08:58:25

http://www.cbc.ca/news/canada/manitoba/brandon-woman-to-get-surgery-1.3827880  
 
PS the public should know, hospitals cannot respond, your medical history past, present and futur are a matter of privacy