Staci's Story - In Need of Life Saving Surgery
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Staci’s Story
Up until 2011, my cousin Staci was a normal, healthy woman living outside of Dallas, married with three children and one grandchild. On January 2nd, 2011 Staci called her family with horrifying news that she had been in a car accident with her mom, step dad, and daughter. The medics believed her to be okay despite being t-boned by a truck on her side of the vehicle at 60 miles an hour. Months went by and she slowly started losing weight and noticing internal pain. She started seeing doctor after doctor and by January 2012 a gastrointestinal doctor believed it was her gall bladder causing the pain. She had emergency surgery to remove it, but months later the pain was still there. Staci has always described her pain as a lady with high heels standing on top of her. By May of 2012, she had gone from 145 pounds down to 120 and it was painful for her to eat and drink. She went to the Mayo Clinic in Jacksonville and they discovered Pelvic Congestion Syndrome and performed an embolism to help address the condition. She was still having pain and by the end of the summer of 2012 they told her there was nothing more they could do.
Staci continued to try and find the underlying problem and thankfully she had an angel on her side. Angie was an ultrasound technician that worked for her family doctor and spent endless hours doing research of Staci’s symptoms. Angie believed that Staci had a rare syndrome called Superior Mesenteric Artery Syndrome (SMAS) and asked the GI Doctor to order a specific test. Finally, in September of 2012, after another series of tests and a year-and-a-half after the car accident, we received news that she did in fact have SMAS. Staci went back to the Mayo Clinic in Jacksonville only to be told that many doctors do not believe SMAS is real. SMAS, or Superior Mesenteric Artery Syndrome, is the compression of the 3rd portion of the duodenum between the Abdominal Aorta (AA) and the Superior Mesenteric Artery (SMA). SMAS is also known as Wilkie’s Syndrome or Cast Syndrome. SMAS can develop naturally or due to traumatic injury. There are other related symptoms and syndromes such as Nutcracker Syndrome, Pelvic Varicose Veins, Reverse Peristalsis, Gastroparesis, Gallbladder failure, and Malabsorption Syndrome. Here is a picture which describes the SMA compression of the Duodenum causing the inability to eat and drink normally:
By November of 2012, Staci’ weight was down to 102 pounds and they needed to do something so, they scheduled Duodenum bypass surgery at Johns Hopkins in Maryland. The goal was to bypass the compressed section of the Duodenum so she could eat and drink normally. The family believed it had fixed her and Staci was able to eat, drink, and began gaining weight. She was up to 120 pounds and finally had relief but, roughly 6 months later, the issues seriously returned.
The pain and weight loss continued. Through online support groups they discovered a doctor in Virginia that had studied under Dr. Sandmann, a German physician that had performed and perfected SMA transposition surgeries. In February of 2016 the family made the trip to Virginia and Staci received a SMA transposition surgery where the Superior Mesenteric Artery is detached from the aortic artery and reattached at a lower point to remove compression of the intestines.
Once again Staci felt much improved. Her appetite was back, the pain lessened, and she began to gain weight. Unfortunately, this is the song that never ends. She returned to Virginia in pain and tests showed that her renal vein was being crushed potentially by scar tissue. The solution was to do a bovine graft on the vein. Once again, that surgery made Staci feel improved only to feel worse again. This same cycle has been going on for almost 8 years now.
SMAS is a very rare disease that has only affected between .013 - .3% of the population. Staci and her daughter Tara have been all over the country seeing doctors and have yet to find anyone who will do the surgery that Dr. Sandmann has perfected in Germany. Dr. Sandmann will go in and do everything at once versus addressing the issues one at a time. Therefore, her only hope of survival is to travel to Germany and have the surgery. The cost of the surgery is between $50-$60,000 and is not covered by American Health Insurance. It would also require a lengthy stay in a hotel after surgery to do follow up appointments and Staci will need a family member with her to assist with recovery and care.
As a family we are foregoing Christmas gifts this year and donating to Staci in memory of my beautiful sister, JoAnn DiMaso, who passed away from Cancer on October 31st. JoAnn would want us to start this fund as she was all about helping others, especially family. We are asking for any donation you are able to make and hope to raise atleast $75,000 to pay for the consult, travel to Germany, surgery and necessary lodging and other expenses that will be incurred. Staci is an incredible person who spends all of her time helping other SMAS patients and their families and, with your help, this life saving surgery could pave the way for others.
Thank you in advance for your generosity.
Here are some before and after pictures of Staci:
Up until 2011, my cousin Staci was a normal, healthy woman living outside of Dallas, married with three children and one grandchild. On January 2nd, 2011 Staci called her family with horrifying news that she had been in a car accident with her mom, step dad, and daughter. The medics believed her to be okay despite being t-boned by a truck on her side of the vehicle at 60 miles an hour. Months went by and she slowly started losing weight and noticing internal pain. She started seeing doctor after doctor and by January 2012 a gastrointestinal doctor believed it was her gall bladder causing the pain. She had emergency surgery to remove it, but months later the pain was still there. Staci has always described her pain as a lady with high heels standing on top of her. By May of 2012, she had gone from 145 pounds down to 120 and it was painful for her to eat and drink. She went to the Mayo Clinic in Jacksonville and they discovered Pelvic Congestion Syndrome and performed an embolism to help address the condition. She was still having pain and by the end of the summer of 2012 they told her there was nothing more they could do.
Staci continued to try and find the underlying problem and thankfully she had an angel on her side. Angie was an ultrasound technician that worked for her family doctor and spent endless hours doing research of Staci’s symptoms. Angie believed that Staci had a rare syndrome called Superior Mesenteric Artery Syndrome (SMAS) and asked the GI Doctor to order a specific test. Finally, in September of 2012, after another series of tests and a year-and-a-half after the car accident, we received news that she did in fact have SMAS. Staci went back to the Mayo Clinic in Jacksonville only to be told that many doctors do not believe SMAS is real. SMAS, or Superior Mesenteric Artery Syndrome, is the compression of the 3rd portion of the duodenum between the Abdominal Aorta (AA) and the Superior Mesenteric Artery (SMA). SMAS is also known as Wilkie’s Syndrome or Cast Syndrome. SMAS can develop naturally or due to traumatic injury. There are other related symptoms and syndromes such as Nutcracker Syndrome, Pelvic Varicose Veins, Reverse Peristalsis, Gastroparesis, Gallbladder failure, and Malabsorption Syndrome. Here is a picture which describes the SMA compression of the Duodenum causing the inability to eat and drink normally:
By November of 2012, Staci’ weight was down to 102 pounds and they needed to do something so, they scheduled Duodenum bypass surgery at Johns Hopkins in Maryland. The goal was to bypass the compressed section of the Duodenum so she could eat and drink normally. The family believed it had fixed her and Staci was able to eat, drink, and began gaining weight. She was up to 120 pounds and finally had relief but, roughly 6 months later, the issues seriously returned.
The pain and weight loss continued. Through online support groups they discovered a doctor in Virginia that had studied under Dr. Sandmann, a German physician that had performed and perfected SMA transposition surgeries. In February of 2016 the family made the trip to Virginia and Staci received a SMA transposition surgery where the Superior Mesenteric Artery is detached from the aortic artery and reattached at a lower point to remove compression of the intestines.
Once again Staci felt much improved. Her appetite was back, the pain lessened, and she began to gain weight. Unfortunately, this is the song that never ends. She returned to Virginia in pain and tests showed that her renal vein was being crushed potentially by scar tissue. The solution was to do a bovine graft on the vein. Once again, that surgery made Staci feel improved only to feel worse again. This same cycle has been going on for almost 8 years now.
SMAS is a very rare disease that has only affected between .013 - .3% of the population. Staci and her daughter Tara have been all over the country seeing doctors and have yet to find anyone who will do the surgery that Dr. Sandmann has perfected in Germany. Dr. Sandmann will go in and do everything at once versus addressing the issues one at a time. Therefore, her only hope of survival is to travel to Germany and have the surgery. The cost of the surgery is between $50-$60,000 and is not covered by American Health Insurance. It would also require a lengthy stay in a hotel after surgery to do follow up appointments and Staci will need a family member with her to assist with recovery and care.
As a family we are foregoing Christmas gifts this year and donating to Staci in memory of my beautiful sister, JoAnn DiMaso, who passed away from Cancer on October 31st. JoAnn would want us to start this fund as she was all about helping others, especially family. We are asking for any donation you are able to make and hope to raise atleast $75,000 to pay for the consult, travel to Germany, surgery and necessary lodging and other expenses that will be incurred. Staci is an incredible person who spends all of her time helping other SMAS patients and their families and, with your help, this life saving surgery could pave the way for others.
Thank you in advance for your generosity.
Here are some before and after pictures of Staci:
Organizer and beneficiary
Jim Sirignano
Organizer
Largo, FL
Staci Gruber
Beneficiary