Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

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Hoyt Finnamore (@hoytfinnamore) posted · Wed, Apr 15 4:07pm · View  

Roman’s Road to a Second Birthday

Anna Ryabova and Oleg Pecherskii, with their sons, Sergei and Roman.Faced with losing their newborn son, Anna and Oleg, searched far and wide for an answer. They found it and a new birthday for their son at Mayo Clinic.

After an ultrasound at 32 weeks into her pregnancy, Anna Ryabova, along with her husband, Oleg Pecherskii, faced a grim prognosis for their unborn son.

"The doctors in Russia told us his kidneys were very small, that they had not developed according to his gestational age, and that he would likely die within five days of his birth," Anna says.

But Roman miraculously survived, and on the 10th day, he was moved to one of Moscow children's hospital, where there was a nephrology department.

There, a nephrologist told to Anna and Oleg that Roman's condition would lead to a number of disabilities: he would have difficulty walking, as well as problems with his hearing, vision and mental development. Oleg asked doctors there about kidney transplant as a possibility for Roman. They answered that it was not a good idea and that children under five years had little chance of survival, in Russia especially. Instead, doctors suggested peritoneal dialysis.

"Nevertheless, we did not lose hope and were determined to do everything for our little son to get him out of disease. We staunchly believed in the best, and today we can say that our grit was rewarded by our very active and cheerful boy," Anna says.  [...]

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Margaret Shepard (@margieshepard) posted · Wed, Apr 15 2:57pm · View  

Research forges path to effective treatment for sclerosing mesenteritis

Carol Bolton outside Mayo Clinic in Rochester, Minn.

Carol Bolton enjoys a breath of fresh air between appointments outside Mayo Clinic in Rochester, Minn.

With more than three decades of experience as a nurse and nurse manager, Carol Bolton of Exeter, Calif., was acquainted with most medical conditions. But in 2004 when she began experiencing abdominal pain along with episodes of diarrhea or constipation, she was baffled by what it could be. Most likely, she thought, it was related to grief over the abrupt death of her husband of 35 years.

But when the pain persisted and grew worse, she saw a gastroenterologist, who ordered a computed tomography (CT) scan. Carol was shocked to learn that a mass (about the size of a quarter) had been found in her mesentery. The mesentery, a membrane that anchors the small intestine to the back of the abdominal wall, is comprised of delicate folds or leaves filled with blood vessels and nerves. [...]

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Caroljean2852 (@caroljean2852) responded:

I was recently diagnosed based on ct scans. I live in a small area in upstate NY and need to find someone for a second opinion. I am scheduled to see a surgeon next week. I don't even know what to ask...scared

Posted Thu, Feb 19 at 5:36am CDT · View

LS4 (@lisas444) responded:

Hi carol - i sent you an email in response to the one you sent me on yahoo! :) Lisa

Posted 3 day(s) ago · View
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Mary E (@marezdotes) posted · Tue, Apr 14 8:43am · View  

I am an RN married to a Physician and have SM with symptoms. I am having difficulty finding both up to date information and a doctor who is willing to treat me because of the side effects of the drugs. Can you help direct where I can get more information and possible consultation. I read your story with hope and identification.
Mary Siha

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Margaret Shepard (@margieshepard) posted · Thu, Apr 9 10:13am · View  

Relief for pain caused by Chiari type I malformation

Sean Murphy on the ski slopes

After surgery for a Chiari malformation, Sean Murphy is back to skiing and his other normal pastimes.

When Sean Murphy's chronic headaches set in, they first bothered him after physical exertion, then after a stressful day at work.

Within months, the headaches were constant, always localized in the back of his head. The pain became debilitating.

Murphy consulted his family doctor and was referred to a neurologist. His hometown physicians were stumped.

Murphy was referred to Mayo Clinic, where he was diagnosed with Chiari malformation type I, a rare condition in which the brain tissue at the back of the head protrudes into the spinal canal. The disorder causes a variety of neurological symptoms, but is treatable.

Mayo Clinic physicians initially sought to relieve Murphy's symptoms with medication, but as his health continued to worsen they decided surgery was his best option. [...]

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Gerriann (@gerriann) responded:

My son is 37---his story is almost identical to Sean's, but, unfortunately, though he had surgery 2 years ago at the Chiari Care Center in Denver, he still suffers debilitating headaches. He has been having 30-50 botox injections in his skull every 90 days for some relief. The last treatment does not seem to be working. Does Mayo have any further advice? Our son works as a construction superintendent/ has 4 children & a wonderful [...]

Posted Thu, Apr 9 at 10:13am CDT · View
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