I have SMA and was diagnosed in 2011 and had surgery in 2011. My doctor is at Mayo Clinic Jacksonville, FL and has seen a few patients with SMA and is very experienced in it. Doctor John Cangemi is the GI doctor who handles my SMA care. I don't have the phone number to his office as I schedule everything online. You can send an appointment request online or find a number on Mayoclinic.org. The staff is fantastic and helping you.

My mother was diagnosed with this at the beginning of this year. Her local doctors chose conservative therapy with some success. She is now back in the hospital with a 20 lbs weight loss and we are looking at trying to get her to Mayo under the care of Dr. Cangemi. I have heard he is the best at treating SMA. Any advice or words of wisdom?

Hi @tracys, welcome to Connect! Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2015-2016 by U.S. News & World Report. You can find a complete listing of all the Gastroenterology & GI physicians here http://www.mayoclinic.org/departments-centers/gastroenterology-hepatology/doctors

To Request an Appointment, visit http://mayocl.in/1mtmR63 to find the contact phone numbers or use the online form.

I'm tagging @ej9718, @smfjf101, @jobones94, @mattis1bestyahoocom, @malaki and @sbraudrick13 to see if they have any words of wisdom.

I've been going to Mayo Clinic in Jacksonville for over a year, I have SMA syndrome but my doctors never agreed with that diagnosis (My local GI diagnosed me) mayo wasted a year for me, wrongfully took me off a feeding tube, and accused me of anorexia, Finally I saw a general surgeon, who spoke to my local GI and now I have the surgery in a few days. I wish I had started out with the doctor you had. I wasted a lot of time, money, and health with Mayo clinic in jacksonville.

Hello @xiaright,
I am sorry to hear about your frustrating experience, and not being able to get the right diagnosis.

As you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I would like to tag @tracys, @ej9718, @malaki, @hamiltl80, @manzfiled, @sbraudrick13, and am confident that they will give you more information on SMAS.

@xiaright, we look forward to getting to know you better; please keep us updated, and let us know how your surgery goes. What symptoms are you experiencing now?

Thanks for tagging me. I haven't been on here in a long time. If anyone needs someone to talk with they can message me privately.

Hi @sbraudrick13,
Thank you for the all the support you are offering @xiaright.
Stephanie, please note that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option.
Thank you for understanding and thank you for all your support.

Thank you all so much for the support, I had my surgery 7 days ago, I stayed at mayo for 5 days, and I actually feel worse. I also have gastritis and internal bleeding so my surgeon just discharged me and said to give it time. There is so much more pain, in the beginning drinking water was unbearable and they were giving me morphine to help me cope. I am 21 years old, and I still have to finish my last year of undergrad but it all feels impossible. During my stay at mayo, my GI team did not even once reach out to me, they denied me of SMA syndrome for so long, when all along I knew I had it, and it should be such an embarrassment to them to know I had surgery for treatment of it. Right now, I feel heavily nauseated, pain when I eat, acid reflux, and still recovering from the operation and stitches, I am exhausted at this point.

Hello @tracys,

We were wondering how your mother is doing? Did she get seen at Mayo Clinic?
Do keep us updated, and we hope all is well.