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Mayo Clinic hidradenitis suppurativa clinic

Posted , 4 users are following.

alex70929
alex70929

Just wanted to share my experience at Mayo Clinic in Rochester Minnesota for all of the people who have this horrible disease. I first found this specialty clinic on Mayo Clinic website. They have a video with a Dr talking about all kinds of different treatment options available for us. I made an appointment, waited several months and then in late July headed out from Chicago to Minnesota. I will not write a book on this experience all I will say is that if you are planning on attending this specialty clinic make sure that you get all of your information about the clinic and instructions from the specialty clinic coordinator Peggy. I was supposed to see the people at the stop smoking clinic which I did but have yet to stop smoking. Next was a visit to the patient education center where I was supposed to attend a class on bandaging, wound care and living with the disease. None of this happened, the instructor told me my options were either a stress management class or weight management class and that the bandaging, wound care and living with the disease class was not available. I was very disappointed to say the least. Let me stop at this point to tell everyone that you should bring a lunch. The way Mayo schedules your appointments there is no time for lunch. I then proceeded upstairs to register for my appointment and when I arrived I had to redo the 50 page application that I had mailed in. Also they only had 4 pages of my medical records from my dermatologist here in Illinois........the doctor didn't listen, the resident was an incompetent fool. They told me to have surgery on my abdomen and also have additional surgery on both my inner thighs which I originally had surgery on in 2015. I left with a tear in my eye and very VERY depressed. It was like false advertising, the doctor didn't offer any of the treatment options that they spoke about on the video on the website. I now have a surgery appointment set for September 25th here in Illinois with a general surgeon. All I can say is I feel like their "specialty clinic" was more like just a regular dermatologist appointment. Good luck everyone! As we all know each day is a struggle.

0 likes, 3 replies

3 Replies

  • brown45840
    brown45840 alex70929

    Posted

    Thanks for the heads up! Sorry you had to go through all that. 
  • harry87125
    harry87125 alex70929

    Posted

    I am going to the Cleveland Clinic in Ohio this coming Friday 9/08/17. I've had HS for 10 years. There is a new form of surgery to excise lesions using a CO2 laser. MUCH lower failure rate. My lesion is not big....maybe as big as a quarter in area. I'm a good candidate for the CO2 laser surgery. Not sure if larger, extensive areas are also  a good candidate for this type of surgery. Will keep the group informed.

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