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laassh
New Member


Date Joined Nov 2008
Total Posts : 14
   Posted 5/25/2009 7:21 PM (GMT -7)   
Hello,

I am a 19 years old and have suffered from severe joint pain for two-and-a-half years now. I live in a very rural area. I have been to many docs, including rheumatologists and neurologists. They have come up blank. I am now traveling to the Mayo Clinic in Phoenix as a bit of a last resort. It is a nine hour drive. It is fairly common for people in my area to travel there for a second opinion. So, once I am down there there is a possibility I will be sent home right away only to travel back multiple times or be there for up to two weeks. Honestly, I am quite scared. I was hoping some of you could give me some advice of to make the trip and the stay as pleasant and efficient as possible.

Thanks,

laassh

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/25/2009 9:43 PM (GMT -7)   
Hi, Laassh,
I'm so sorry to learn you have so much pain at such a young age. I had to go about 3 hours away for 2nd opinions, and additional consults, including, finally, my lumbar fusion surgery. One thing I did ask was what tests they needed to have done and whether I could have them done locally and either bring them with me or send them down (if you send any records, I would take a copy in hand with you, including CD's with MRI's, etc., because things can get lost, faxes misplaced, etc.) or have them sent. You may have an MRI, for example, but each doctor has policies about the tests - and how recently they must be done. My surgeon would not see me unless I had an MRI less than 6 months old, for example. Blood work can usually be done locally. So all this may save you time. Plus, most of these major centers are used to people who come from distances just as you're doing, so although they can't tell you everything until a doctor sees you, they may be able to give you some ideas if they know and/or review the tests you have/haven't had. Also, ask about whether there's a place for outpatients to stay that's affiliated with the hospital if you need to stay to have additional testing, etc., or see other doctors. Be sure they know how far away you live. Someone in the office should be used to dealing with these matters, but if not, call and ask for the hospital's social work department and see if they can point you in the right direction as far as who you need to speak with.

Hope this helps a bit. Good luck!

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 5/25/2009 10:17 PM (GMT -7)   
laassh
I can't tell you how the Mayo satellite campus's work, but the main Mayo Complex in Rochester Minnesota, they will have a Doctor see you, and then he will do an initial assessment, and then set you up with various appointments and test over a period of days, it can extend out to as long as a week or two, then after you have done all the test and seen all the Doctors, you will see the Doctor that did the initial assessment, and he will go over all the findings and recommendations, and then let you know what they feel needs to be done and what course of action needs to be followed. I would think that the satellite campus's would follow pretty much the same guide lines, as they all come under the main Mayo authority in Rochester! My daughter is a Nurse there and I have been thru there. I would like to caution you as to not get your hopes up to high, they do have some excellent Doctors and supperb test facilities, but there are other places that have outstanding Doctors too!, and Mayos is not the end all final authority in all medical problems! So just keep that in mind, they might be able to help you, but then again they might not be able to solve your problems.

I do wish you well!

Good Luck to You

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 5/26/2009 8:53 AM (GMT -7)   
Hello Laassh,

Welcome to the forum. As Whitebeard said, we are sorry to hear you or any young person in so much pain. It is just not fair. You should have a pain free life ahead of you at least for a few decades before the troubles start.

I used to live in MN for a while. I know that the hotels and motels near the med center offer special rates to patients in your situation. Check with the center in Phoenix and they should have listings with rates. They may even have on site lodging. If not, check with AAA for recommendations. You may find that a membership in AAA will pay for itself in reduced hotel rates for your upcoming stay. Worth checking out.

You are taking the best course of action going to the experts. I am sure you will get straight answers and appropriate recommendations for treatment.

I wish you the best. Feel free to come back frequently. We are happy to help!

Modelmaker
Degenerative disc disease, 4 back surgeries, fused from L2-S1, instrumentation. Being treated for chronic pain. Oxycodone 30 mg. IR. Candidate for SCS in the future.

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