What to expect and chances of getting in?

Posted by fuzzlepuff @fuzzlepuff, 5 days ago

Hi! So I just had my first initial call yesterday and they went over paper work and my symptoms. Is it going to be a phone call or will it be on the portal? What are the chances of me not getting in? I'm going in for heart issues and a lot of other problems. What should I expect these coming weeks?

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Colleen Young, Connect Director | @colleenyoung | 4 days ago

In reply to @sbtheplumber1 "@jenniferhunter sorry you went thru so much I’ve been turned away by 4 Neuro surgeons. The..." + (show)

@sbtheplumber1, I'm confident that @jenniferhunter will have suggestions for you. She is so helpful, especially in back issues.

With respect to your finding a suitable hotel with a recliner in Rochester or other Mayo Clinic location, I recommend contacting Mayo Clinic's Concierge Services.

@cheyennepeterson and her colleagues can recommend options for you:
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

Jennifer, Volunteer Mentor | @jenniferhunter | 4 days ago

In reply to @sbtheplumber1 "@jenniferhunter sorry you went thru so much I’ve been turned away by 4 Neuro surgeons. The..." + (show)

@sbtheplumber1 I am doing well. Even though I was turned down by 5 spine surgeons prior to coming to Mayo, it was the right thing because those surgeons missed the diagnosis. They didn't have confidence in knowing what was causing the symptoms, so they should not operate if they don't completely understand the issues.

From what I understand, your spine surgery was a year ago. You are having L3 nerve issues, but the operated levels were L4 to S1, correct? It is possible that further surgery could make you worse off than you are now, and only a specialist can make that call. Prior to my spine surgery, my physical therapist was buying me time by doing myofascial release and using a Dolphin Neurostimulator on the nerve roots in my neck to disrupt pain signals. That prevented pain for about a week. All surgery creates scar tissue, and myofascial release may be something to try to see if it helps loosen the tight tissue. I have done a lot of work on my scar tissue both from my cervical spine surgery and surgery for a fractured ankle. It has helped a lot. Time helps too, and perhaps a year isn't long enough. Another surgery will add more scar tissue. I am 4 years out from the ankle fracture and have just recently improved a lot, and I'm now walking without pain.

If you do get an appointment at Mayo, I would recommend looking at Candlewood Suites for accommodations. They do have kitchens and recliners in the room and you can add pillows as needed to make it comfortable. I would recommend requesting a handicap accessible room that has a roll-in shower. Those are usually on the first floor, and I stayed in rooms like that with my ankle fracture when I could not weight bear at all. You would need someone to accompany you to drive. In Rochester, there is a hotel shuttle to Mayo (and most Rochester hotels have them). My drive between my home and Mayo was 5 and a half hours, and I did fine right after my surgeries coming home in the car. I was uncomfortable because of the surgery, and the drive didn't make it any worse. If you do get to go to Mayo, you'll find a way to figure out the travel part of it.

Here is our discussion where you can learn about Myofascial Release which is a type of physical therapy.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

fuzzlepuff | @fuzzlepuff | 2 days ago

They won’t take me in :((

Colleen Young, Connect Director | @colleenyoung | 2 days ago

In reply to @fuzzlepuff "They won’t take me in :((" + (show)

I'm sorry to hear that. That is hard news to get. Please know that you can continue to connect with other members in the Heart Rhythm Conditions support group here: https://connect.mayoclinic.org/group/heart-rhythm-conditions/

fuzzlepuff | @fuzzlepuff | 2 days ago

In reply to @colleenyoung "I'm sorry to hear that. That is hard news to get. Please know that you can..." + (show)

I actually did get in! It was internal medicine that denied me but I’m getting into cardiology.

Colleen Young, Connect Director | @colleenyoung | 2 days ago

In reply to @fuzzlepuff "I actually did get in! It was internal medicine that denied me but I’m getting into..." + (show)

That's great news. I'm not surprised. General internal medicine is a very very busy department. Given that you're primary concern is heart-related, you've landed where you need to be based on the review of your medical records by Mayo Clinic experts.

Once you have your initial appointment, testing and assessment, additional appointments in other departments (including internal medicine if necessary) will be arranged. Your cardiologist will be your main provider and will quarterback any additional needs.

Here are a few discussions that may help as you prepare for your appointment:
- Your Tips on How to Get Off to the Best Start with a New Specialist
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
- First Visit to Mayo Clinic: How do appointments work? What to expect?
https://connect.mayoclinic.org/discussion/new-internal-med-patient/
- Mayo Clinic Patient Portal: How do I find it? Do you use it?
https://connect.mayoclinic.org/discussion/mayo-portal/

Have you downloaded the Mayo Clinic patient portal?

glt | @glt | 2 days ago

In reply to @emo "Hello, and welcome. I hope you’re able to get an appointment, but I don’t think anyone..." + (show)

@emo

Hello, and welcome. I hope you’re able to get an appointment, but I don’t think anyone can really say what the chances are…

Typically, if you’re offered an appointment, you’ll get a call in about 2-3 business days. If not, it’s most likely the request will be denied, but they’ve sent the denial letter by snail mail and it just hasn’t gotten to you. Or at least that’s how my experience has been based on one time getting an appointment and all the other times denied except for when I got in touch with a department that accepted self-referrals.

You can call them directly if the requisite number of business days has passed, and they can check the status of your request.

I can share my honest experience: I’ve been seen at Mayo Clinic twice, and once was a physician referral where he provided the maximum allowed number of pages of clinical notes, and I got an appointment that way. Years later, I self-referred twice and was denied.

Then I was referred directly to a specialty clinic that at the time accepted self-referrals. I basically called, they put me on a wait list, and in 9 months (they advised me of this estimated wait time) I got a call to offer an appointment. That seems a unique scenario though.

So it sort of depends on the specialty area you requested or were referred to. I was told by a staff member that Cardiology, Neurology, and GI are among the most difficult. I seemed out appointments in the latter two, and that turned out to be true for me. And they also base things on “urgency,” and whether or not they believe they can contribute meaningfully to the direction of your treatment, especially if you’re not able to access that care locally.

But in my experience, that can be quite subjective, as I’ve been denied twice when my local providers specifically referred me, saying they can’t connect me to said care at home. It didn’t matter.

Sometimes it seems quite random. And you’ll hear often that, “Mayo Clinic receives more appointment requests than they can grant, so unfortunately they can’t fulfill all requests.” There are many stories here, one person wrote they’d “walk on broken glass” to get established at Mayo (and did), and many others who were not so lucky. These pages are littered with tales of denials, including my own.

I personally did not have the most positive experience either time, but I realize I’m saying that owing to the privilege I had to be seen twice at all. But having seen it from both sides, Mayo is a unique and amazing organization, but it’s also not without its own flaws. It can feel euphoric to get an appointment, but it doesn’t necessarily mean you’ll get the answers or care you seek. And getting a denial can feel soul crushing. But it doesn’t mean your pain is any less real.

It’s good to keep options open and I had to remind myself they’re not the be all, end all, despite the fancy commercials.

I do hope you are able to access the care you need, whether it’s at Mayo or elsewhere.

Editor's Note:
Correction: The statement above "Typically, if you're offered an appointment, you'll get a call in about 2-3 business days." may not be accurate in all circumstances.

Mayo Clinic doctors review records sent by the referring physician or self-referring patient carefully in order to tailor the patient's visit to the right tests needed and to avoid performing unnecessary tests. This also helps ensure the patient is scheduled with a physician who has the expertise best matched to their needs and condition. Naturally, this attention to detail takes time.

Because each request is specific to the patient, the time to hear back will differ from person to person.

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I self referred to MD ANDERSON IN Houston. I was offered an appointment within a week and met with a GU Oncologist within 4 weeks. I was seeking a second opinion for advanced prostate cancer. The entire process was straight forward and seamless.

walkinggirl | @walkinggirl | 1 day ago

In reply to @fuzzlepuff "I actually did get in! It was internal medicine that denied me but I’m getting into..." + (show)

Wishing you a successful outcome! The cardiology department at Mayo is the best in the world for many conditions and shares top rating with the Cleveland Clinic for a few others. You are in the best hands.