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No notification my son's case was accepted?
Hello,
I have lots of questions.
Backstory: My 14yo son was being seen at Rush University in Chicago where we live (Chicagoland area) for benign soft tissue tumors in the knee area, of vascular malformation origin. Those caused him horrible pain starting at the age of 7 and it took a while to get an accurate diagnosis which was around the end of 2020, for the longest time I was told he had hip inflammation, or possibly juvenile arthritis
He was quickly sent to Rush for treatment, to quickly rule out cancer, thanks god it was benign. He saw 2 doctors over the past 5 years, an orthopedic/oncologist surgeon and a interventional radiologist. One tumor was removed surgically (ortho surgeon) in December 2020, it was in the thigh area so "easy" to get. The other was treated through intervention radiology in December 2022 (he had relief for a year until that other one started to act up) but hasn't been removed because it is in the intra muscular/knee area. But no more pain no more need to stack ibuprofen so he could walk (the morning waking up usually would be when pain came) we thought we were done. Condition been stable according to latest MRI in April this year.
Unfortunately, despite what we thought, the tumor wasn't done with him. As he is growing in height like weeds, the remaining tumor is moving with his legs growing and since his previous procedure 2 and a half years ago he has lost range of movement, about 20 degrees and Rush doesn't recommend anything else because it could make things worse. Basically "wait and see" because doing anything could make it worse due to location... great
So because i am a mom who would do anything for her son, i reached out to Mayo Rochester at the end of may.
I just learned he was accepted. But it's been almost a month since i had the original intake call and never got any news back since then, i went the day after the call to get the MRI images sent out. I had to call to follow up and just today because i called my son was placed on the 6-9months waitlist (which is fine for us we aren't in a hurry and we ve been dealiny with that for years already). Is that normal or did i mess up somewhere? Why did i have to call for him to be placed on waitlist while he had been approved it's not automatic? My understanding is that he was accepted at the vascular malformation center, which makes sense because this is the root of the soft tissue tumors (veinous malformation not vascular which was rooted out by radiologist interventionist at Rush through an angiogram), how was that decided vs say orthopedics? During intake I wasn't sure where I thought he should be seen, that's not for me to decide.
Also long shot: he was accepted, does that mean they are confident from his record they got that they can help him where Rush couldn't/wouldn't anymore?? Sure they aren't wasting their or our time having the same info his previous care team has if it meant they stand with their original opinion?
I am going to get a call in 6-9 months to be scheduled right? How can I know if I have a patient portal yet?
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All I can access is a bare minimum. Im going to call and sort this out next week. This is frustrating and not user friendly at all
Good idea. Also check to see if you can be put on a cancelation list. Then it alerts you when there is an earlier appointment because of a cancelation.
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1 Reaction@esadupree Can you sign in with your son with his login info, go to settings and change his phone and email address to yours so notifications go to your phone? Make sure to set up text notifications. This will be invaluable when he goes to Mayo as any change in schedule will go to your phone, as well as notifications for test results. I don’t know why this wouldn’t work as long as he uses your email and phone number. If you have to, you could create a new email address for his account so the system doesn’t associate it with you. Hope this helps!
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1 ReactionHe didn't get a log in. Im gonna have to call and figure that out
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1 ReactionHello @esadupree. Sorry to hear you are having a difficult time creating a patient portal for your child and gaining access as a caretaker. As you mentioned, calling may be the best route to get this sorted out.
If you are having technical issues with Patient Online Services, contact POS tech support (https://signup.mayoclinic.org/help). To get personal help with setting up or using your account with Patient Online Services, contact Mayo's Concierge Services (https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services).
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6 ReactionsSo I called the branch directly and they told me in our case any appointment notification will be done by phone/text message. Also the person told me since he was a pediatric patient they usually try to not leave them on waitlist for more than 3 months, so hopefully I get a call in September sometimes, which basically splits the timeline I was given in half.
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2 ReactionsJust got the call we're going on September 22 and 23rd!! That was faster than I thought.
Anyone knows how I get into the Ronald Mc Donald house?
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1 Reaction@esadupree
I am glad your son was accepted. If you have not arrange for lodging at Ronald McDonald house, see their site for additional information: https://www.rmhcmidwestmwi.org/stay/
I have never been thru process, but on page it mentions working with a Mayo Clinic Social Worker for a referal. You can reach a Social Worker by calling Mayo Clinic Social Work at 507-284-2131.
Also, if need additional assistance on lodging or travel advice, Mayo Clinic has a free Concierge Services. They can help make recommendations suited to your requirements. Concierge services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
By phone 7 a.m. to 6 p.m., Monday-Friday: 507-538-8438
Email: concierge@mayo.edu
Hope you get answers you are looking for.
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3 ReactionsThanks a lot I will call as soon as his appointments are showing up on his portal which should be sometimes next week i was told. Though I may need to call because he is 14yo and whatever I can access on his profile is limited.
We are very happy to get the call to schedule so early on. I wasn't expecting to hear back at the very least until September for an appointment later in the year
Finally got his appointments on his portal.
Except they re all on 22nd/23rd Except for one on 10/14.
This isn't possible we re not making 2 trips especially for one appointment. I requested they fix this or move everything on 10/14 or the day before or after.
They re not gonna let us like this are they?