Post-op care locally after surgery at Mayo?

I can not answer all questions, but can shed light on physical therapy. You can do physical therapy at non-Mayo locations. Many of my relatives who live in Rochester and had orthopedic surgery at Mayo Rochester did their PT at other facilities. The Mayo provider wrote a prescription? (instruction) to the PT facility about treatment needed.

Laurie

Hellon @amywood20 My wife had very complex brain surgery at Mayo (Rochester), but after her hospital stay she did her rehab for over a year back in our home community, Her Mayo specialists interfaced terrifically with her gp back home, too.

Strength, courage, and peace

Amy, I'd like to bring @jolinda @rosemarya @lilypaws @jenniferhunter and @ken82. They can add their experiences to Scott's and Laurie's with respect to have surgery at Mayo Clinic and follow-up care locally back home and how Mayo clinicians coordinate that care.

When will you be having surgery?

@colleenyoung I don't have surgery scheduled yet. I am getting a guided injection into my shoulder on the 9th and then am supposed to see the spine surgeon in August as a follow up. He is the one who thinks this is a shoulder issue that was made worse by the cervical spine surgery. Depending on how it goes, I may end up at Mayo for their expertise.

@colleenyoung I didn't know where to send this to for Scott's and Laurie's surgery, so I'm sending this to you. It depends on the surgery. I had a back fusion from T-10 to my pelvis. My surgery was 9 hours long and 3 hours in recovery. To tell the truth it was very painful and I had low blood pressure, which they thought could be the valium they were giving me, but one of the nurses change my cuff to a smaller one, which also made a difference. I take flexiril now for the muscle relaxant. The day after surgery I had to go down and have anesthesia for them to inject cement in my T-10 and T-11 to keep my back stable. The anesthesia can really make you loopy and not able to think straight. When I had low BP I would almost pass out and my husband said I would talk, but it did not make sense. I also had low Hebagobin (SP) and had to have a Red Blood infusion. Mayo is the best place to have surgery. My surgeon was excellent and had all the qualifications to do my surgery. The surgeon resident that came and saw me everyday didn't do my meds correct. I was only sent home with oxycodone, because I told the nurse I had Tramadol at home and she said my doctor at home could order it for me. They mainly gave me Tramadol in the hospital. My husband called my surgeons assistant and he said, NO, NO, No, I was to also have the Tramadol filled at Mayo. And the way I take it is
is I take tramadol and then 3 hours later the Oxycodone and continue taking the meds that way, They did not tell me that when I was discharge. The surgeon came up to see me the day I was night before I was discharged. He didn't like the way my thing to keep me up right and to protect my back. He did not like it fit, but my husband made it fit better when I got home. Sorry I can't think of the name of it. I hope I didn't give them too many wrong ideas. It was just my surgery and like I said it depends on what kind of surgery they are having. I hope all goes well for them and Mayo is the best place to go.

Thanks @lilypaws. Your message is posted for all to see. I'm confident that @amywood20 will appreciate your response.

@lilypaws that's for sharing your experience!

@amywood20
Hi Amy,

I'm glad you are here as part of our community! I had PKD too, but I don't anymore... I received a laparoscopic bilateral native nephrectomy (to remove my PKD kidneys) at the same time I had a living donor kidney transplant. I had my major surgery at Mayo and coordinated my recovery and Physical Therapy with my local team. I have been very successful with a blended team effort (some Docs at Mayo and some locally). In your case it would be awesome to have your post care set up and ready to go locally before your surgery takes place. Depending on what computer systems your local teams use you can either share medical records automatically through EPIC or you can have them sent back and fourth in less automated ways.

PS if you have PLD evidence show you should NOT take Estradiol or Estrogen because it causes the liver cysts to grow in volume.

@amywood20 Only your surgeon can answer if you need to do surgical followups at Mayo, so you may want to ask that when you speak with someone about scheduling. I have had 2 surgeries at Mayo Rochester, cervical spine surgery 4 years ago and orthopedic surgery for a broken ankle just a few weeks ago. With my spine surgery, it was not necessary to come back to Mayo for every followup, until the one year followup, but I liked coming back there. There was a 6 week, and a 3 month followup. The 3 month was done remotely by mailing in X rays. My physical therapist was sending updates. With my orthopedic ankle surgery, I need to return for each follow up. That involves removing the splint/cast at 2 weeks and removing stitches, and in my next follow up, removing the fiberglass cast. My spine surgeon used dissolving stitches, making return to Mayo optional. The orthopedic surgeon used nylon stitches, and return is essential to remove those and place new support dressings for the ankle. I would expect a shoulder surgery might be similar and need a return. Shoulders need to be assessed for proper movement and a surgeon would want to know how that is progressing. One thing I would also ask is if they can evaluate you for thoracic outlet syndrome which is more common among spine injury patients. That is a neck/shoulder problem and I had that along with my spine problem with a collapsed disc. It creates overlap in pain symptoms, and you can have both as sources of symptoms. That is misunderstood by a lot of doctors, but Mayo is a good place to have that evaluated and that was part of my original evaluation to figure out where most of my symptoms were coming from. If you had spine surgery, and TOS was missed, you would likely still have the arm pain. I had carpal tunnel surgery and TOS was missed for a long time. My experience with recovery from spine surgery also caused my neck and shoulders to tighten up making pain a bit worse until physical therapy could be done, and my therapist did a lot of myofascial release to break up the fascial surgical scar tissue. Here is some info on MFR. It may be able to help you.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I could have found a local surgeon to operate on my ankle, but I didn't want to go to an urban medical center in a COVID hotspot, and I had concerns about infection rates at some of the smaller local hospitals and I didn't have enough information to know which surgeons were better than others. I knew if I came back to Mayo, I would have a really good surgeon and I would be in good hands, and I felt a lot safer at Mayo with the COVID precautions. It cost just a little more, because of lodging, but I think that's worth it for a better qaulity of care and healing. I contacted my spine neurosurgeon and asked is recommendation, and I'm grateful that I can ask that because of the good relationship I have with him and with everyone at Mayo. It matters to me to know that I could trust my care to world class surgeons, and I stop stressing about finding a good one on my own.

@jolinda Thanks for the info and congrats on a successful PKD surgery. In terms of the estradiol/estrogen, none of my medical professionals here seemed to know about that. I was on HRT for three years before learning from others I should not be taking it. I stopped it on my own July 2019. Went to Mayo in October and the PKD/PLD specialists were shocked that my family practice doc, OB/GYN, nephrologist and liver specialist had no clue. Last month I did do a telemedicine appointment with an OB/GYN at Mayo because after six years of not having a period (am not on birth control) and lab work indicating I am post menopause, I have started bleeding again. In my discussion I did mention to the Mayo OB/GYN about my PKD/PLD and the estrogen issue. She wanted to put me on Premarin cream, noting due to how it is administered, it should not be an issue compared to an oral pill. She was concerned about bone health. I have another call with her at the end of the month to go over new lab work she had me do here locally.