Accessing Sloan Kettering Late Effects Clinic

Hi,
I've read many positive posts about the Late Effects Clinic at Sloan Kettering. I am experiencing neck and shoulder weakness and have been told this is related to mantle radiation treatment for HD which I had many years ago. I am interested in finding out more about the program at SK and the best way to arrange to be seen. I have called several times and am always told to send my records first. I have requested to speak to a coordinator but this is impossible until I send my records. I guess it is the chicken and egg problem. As you know, getting together years of records can be a big commitment time wise and financially, so I am trying to get more information before I do that to see if it would be worth my while. Maybe those of you familiar with the clinic can help. Here are my questions: How many days is one expected to stay to go through the process? Do they automatically perform more scans and other tests such as EMG, even if you already have had recent tests? Are you seen by a comprehensive team such as cardiology, G.I., PT, and more, even if you don't have symptoms? What is included in the evaluation and treatment? Is insurance checked ahead of time by them? Last, does Sloan Kettering offer so much more than another great hospital to make it worth while to trek a great distance? These are lots of questions, but if anyone who has been through the process at SK and is willing to share information, I would really appreciate it.
Thanks, Viola

Comments

  • catwink22
    catwink22 Member Posts: 281
    Other Discussions
    Hi Viola,
    I'm sorry I don't have any answers to your questions, but I thought you might want to also post this in "Other Discussions" under "Long Term Effects of Treatment". I wasn't sure if you knew about that discussion board, it's easy to miss if you don't scroll down. I'm sure there are lots of people who might have the answers you are looking for that might not see your post here and I wouldn't want you to miss out on any helpful information. We certainly need all the help we can get fighting our battles! Good Luck to you!
    Cat
  • cathyp
    cathyp Member Posts: 376 Member
    Late Effects Clinic
    Hi Viola,

    I'm a patient at the clinic. I'll send you a message later tonight to answer your questions, the best I can!

    Cathy
    HD 1989, 1994
    IDC 2007
  • viola43
    viola43 Member Posts: 20
    catwink22 said:

    Other Discussions
    Hi Viola,
    I'm sorry I don't have any answers to your questions, but I thought you might want to also post this in "Other Discussions" under "Long Term Effects of Treatment". I wasn't sure if you knew about that discussion board, it's easy to miss if you don't scroll down. I'm sure there are lots of people who might have the answers you are looking for that might not see your post here and I wouldn't want you to miss out on any helpful information. We certainly need all the help we can get fighting our battles! Good Luck to you!
    Cat

    "Other Discussions"
    Hi Cat,
    Thanks for your great suggestions about scrolling down to see "other discussions." You are right, I did not see that and it will be a good place to post. Thanks again. Viola
  • viola43
    viola43 Member Posts: 20
    catwink22 said:

    Other Discussions
    Hi Viola,
    I'm sorry I don't have any answers to your questions, but I thought you might want to also post this in "Other Discussions" under "Long Term Effects of Treatment". I wasn't sure if you knew about that discussion board, it's easy to miss if you don't scroll down. I'm sure there are lots of people who might have the answers you are looking for that might not see your post here and I wouldn't want you to miss out on any helpful information. We certainly need all the help we can get fighting our battles! Good Luck to you!
    Cat

    "Other Discussions"
    Hi Cat,
    Thanks for your great suggestions about scrolling down to see "other discussions." You are right, I did not see that and it will be a good place to post. Thanks again. Viola
  • viola43
    viola43 Member Posts: 20
    catwink22 said:

    Other Discussions
    Hi Viola,
    I'm sorry I don't have any answers to your questions, but I thought you might want to also post this in "Other Discussions" under "Long Term Effects of Treatment". I wasn't sure if you knew about that discussion board, it's easy to miss if you don't scroll down. I'm sure there are lots of people who might have the answers you are looking for that might not see your post here and I wouldn't want you to miss out on any helpful information. We certainly need all the help we can get fighting our battles! Good Luck to you!
    Cat

    "Other Discussions"
    Hi Cat,
    Thanks for your great suggestions about scrolling down to see "other discussions." You are right, I did not see that and it will be a good place to post. Thanks again. Viola
  • viola43
    viola43 Member Posts: 20
    cathyp said:

    Late Effects Clinic
    Hi Viola,

    I'm a patient at the clinic. I'll send you a message later tonight to answer your questions, the best I can!

    Cathy
    HD 1989, 1994
    IDC 2007

    Off line comment
    Hi Cathy,
    Thank you for your off line comments. I wasn't aware that was possible and I wonder if you could tell me how to send (and retrieve) a private comment. Your email disappeared after I read it.

    Thanks,
    Viola