Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.
Connect
@esadupree,
Welcome to Mayo Connect. I am not an Mayo employee, but let me see if I can address some of your questions.
The appointment coordinator and staff who reviewed the medical records determine what section they think your son should be seen in first. You may be referred to additional sections after first consult.
Most sections open up calendars around 3 months in advance. At that time the appointment coordinators book re-checks and new appointments from list. How many patient that get book that month is based on availability and priority based on medical staff evaluation. I typically receive a portal message and notification via email to contact Mayo when I need to make an appointment.
As far as if Mayo has a different answer to your son's situation, it is impossible to say.
One last item you mentioned is patient portal. Did you receive a letter with information about patient portal or a clinic number? If not sure, you can contact Mayo's free concierge service for advice on how to set up your son's patient portal and 2nd, how to get authorized to your son's medical records. They can also advice you how to set up notifications so you know if Mayo sends you a message.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
Hope this helps with some of your questions.
-
Like -
Helpful -
Hug
4 ReactionsThanks for your reply.
No letter, just like everything i had to call to find out and ask, maybe it's just timing and I would have received smth. Also since he s a minor i cannot figure out how to add him to my portal as a caregiver despite having his patient #. So if they don't call me how will I know it's his time?
-
Like -
Helpful -
Hug
1 Reaction@esadupree
I found a Patient Portal support page to help with creation of online sign-on and info on Proxy access for parents and caretakers.
https://onlineservices.mayoclinic.org/patientportal/support
Creation and proxy information under Account option.
In addition, you can call 877-858-0398 for assistance, Monday thru Friday, 7:00 a.m. – 7:00 p.m. Central time.
-
Like -
Helpful -
Hug
3 ReactionsThe proxy access was authorized already when try to do that. I still can't add him to my portal account. Why is it such a headache after they turn 13? They re still minors and us parents are still in charge and making decisions for them. I ll call the number thanks for your reply.
I joke to my son that this whole leg ordeal is going to give him good material to write on college application essays!
Ok so I just checked and his profile appeared overnight on there so it's all good.
Though my access in what I can see and do is very limited. How do I know I'll be able to see any message or appointment offer on there when the time comes?
@esadupree
Not sure how works for care giver / proxy, but under Account Settings, there are Notification setting where you can turn on how to receive messages. Under "Appointments", if take Advance settings, you will find notifications for Appointment Offers.
Again, not sure how works for caretaker, but can always call number mentioned above for more details.
-
Like -
Helpful -
Hug
1 ReactionWill do.
I am also going to try to see if I can have full control, if they need him to get on the phone and approve verbally he ll do it, not like he cares nor knows that such portal exists, he is 14 and he still expects and counts on me to handle everything for his medical care, despite what the portal allows or not, if anything it is working against his well being that I could potentially miss contact with Mayo.
Good if you have finally set up Mayo Portal. One can also get the Mayo App on one's phone and access the portal. And one can get text messages when there is a new message for one on the portal.
It is important to use the portal. It shows all appointments and one can send messages to providers. AND all the exams, tests, interventions, Doctor's Notes are promptly posted on the portal (this is the law for all medical providers now). I find it invaluable to read reports and doctor Notes. Mayo also now has a user-friendly trick with reports. One puts cursor over a word in the report, and a pop-up gives one the definition of the term
The problem is that i cannot do any of that as a caretaker which is ridiculous
Understood, but if you have his login and password can you not just go onto his portal site and pull reports etc.
Or do it together with him if he has an interest.
Also, because there are times when you might need to update certain information like pharmacy used, insurance, etc.
Technically there might be an issue with creating a second sign on to a patient record.
-
Like -
Helpful -
Hug
1 Reaction