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Lorri
@lorri

Posts: 1
Joined: Dec 13, 2011

How to get the most out of a visit?

Posted by @lorri, Sep 16, 2016

I went to the MC about 6 years ago for my back. Besides arthritis and several bad discs I have pain in my muscles and sometimes feel like I am being poked by my bones. I exercise daily, that and ice and Voltaren Jell are the only things that keep me for going mad from the pain.
I have been thru everything, short of surgery.
But I am writing for my husband, not myself. I had a very bad experience. Although my mri’s were 3 years old they didn’t take new ones. They did some blood tests and were very nice, but all they ended up doing was suggesting I go to physical therapy, (we are a 6 hour drive round trip from them and I had done the physical therapy locally with no relief) All they ended up telling me was it was a mystery why I was/am in so much pain, but my back was to far gone for surgery, although the surgeon chose not to see me personally. I was not seeking drugs, I have been thru the “pain management” w/drugs and it almost killed me. I was pretty much shuffled out after a few hours and we had set such high hopes on the Mayo Clinic being the answer…

My husband is having a number of issues, pain in his legs, he had lime disease when he lived up north and we don’t know if that is a factor. He has terrible trouble with his stomach, and has had is gallbladder removed some time ago. He has been tested for just about everything here, and no one seems to be able to find anything. He is depressed, and getting more and more withdrawn.
We want to give it another try but don’t know how to make sure we get the full value of a trip up there. Our primary doctor can’t seem to help and I don’t know where to start. We have BC/BS and I am wondering if the MC really doesn’t like dealing with it? How do we figure out who we will be seeing in advance. What info to have collected, anything anyone can think of that might help his visit work out better than mine.. we are getting desperate.

Michael is 63, as am I, a little over weight, but not bad. Better diet than most, we used to walk daily, but he doesn’t seem to have the energy for that anymore.

REPLY

Hi @lorri, and thanks for sharing your story with us on Connect. There are quite a few members on Connect talking about pain and coping with severe pain that I’d like to introduce you to – @IndianaScott, @jimhd, @johnbishop and @amkaloha. I’d also like to introduce you to @dawn_giacabazi, who has discussed gallbladder issues in the past.

I’d encourage you and husband to make another trip to Mayo Clinic. Here is a link to the Patient Services portal that outlines what to bring to the appointment: http://mayocl.in/2ct833y. I’m also including the link to request an appointment if you decide to do so: http://mayocl.in/1mtmR63.

Hi @lorri, thank you for sharing your story. I agree with Alyse with giving Mayo Clinic another try. If the online form is a challenge (not being able to list everything you want to tell them for the appointment) you might try calling the phone number listed on the right side for the Mayo Clinic site you are making an appointment for and talking with a live person. It can be a challenge to get the right diagnosis and treatment. One thing that might help is to make a list before you call or make the appointment of all the questions you might have and the symptoms your husband has. I find that helpful when talking with a doctor or setting up an appointment. Hoping you will get some answers soon for your husband.

Hi @lorri, I also would encourage another visit to MC. I have BCBS and never had any difficulty with medical claims from MC visits. I did have genetic testing that MC sent out. Since test would be billed by outside facility, I was asked to sign a form that if insurance denied payment then i would be responsible for payment. I was informed that if denied, MC would assist with providing records, medical literature to insurance to help get the claim paid.
Unfortunately, in the past I too had a disappointing visit. It was a follow-up after several prior visits for a neuromuscular mystery. I didn’t receive a diagnosis or recommendations for further care. A complete medical work up was performed over the period of 6 months. The disappointing experience was with a neurology fellow, who did not remain at MC as an attending. When he had no answers to give me, he was at a loss in providing any options for me to pursue. In hindsight, I should’ve insisted on speaking with the attending physician. I was contacted by phone, by the end of the call I was a bit distraught. That experience did not tarnish my respect for MC. During those visits, I had met so many outstanding and compassionate physicians, nurses and ancillary staff that helped me in many other medical areas. The disease that MC couldn’t diagnose was ultimately investigated at the NIH. The disease is very rare, with very few specialists able to manage it. Unfortunately, one is not at MC. I’m glad I didn’t give up on the Clinic. I have returned many times since for other medical problems arising from this disease, will return again at the end of Sept. MC may not have diagnosed my illness, but the many physicians and staff have greatly improved my quality of life by diagnosing and treating the cascade of other problems the disease causes. MC has been the only medical facility (besides NIH) where I’ve always been treated with respect and compassion. I’ve learned many things through this medical journey. A few are…don’t be afraid to ask the physician for a referral to another medical center if unable to treat you. Request and keep all records of test results whether or not abnormal. I was overrun with paper copies, that I now scan all results to flash drive and organize by dates/categories. This way records can be easily retrieved, printed when you need them. Request films or CD of any radiology tests along with the reports,. Keep journals of medications or therapies tried and any positive or negative effects. Lastly, keep a daily log of symptoms, anything that may help or worsen symptoms- weather, exercise, amount of sleep, diet, etc. By logging this, there may be patterns that were missed. Just a few things that have helped me. Appointments with specialists can be overwhelming. Many times patients think of questions after they’ve left the office, which makes it difficult to get answers. Going to these appointments well prepared with the medical data and a list of questions, may help the visit be more productive. Lastly, MC is very efficient with utilizing prior results if they’re deemed of good quality, not ordering tests just to repeat them. That’s why the CD for CT scans, xray, mri is important. MC radiologists will read it themselves. This practice decreases unnecessary testing that has the potential of insurance denial.
Sorry for the length. I hope this helps and your husband gets answers.

*I got great relief doing the stretches a Physical Therapist taught me. She
focused on a couple areas where I experience pain. Now I have relief just
doing maintenance stretches as required. *

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