"Don't waste a minute not being happy. If one window closes, run to the next window-or break down a door." -Brooke Shields
It seems like we had looked for everything imaginable and seen so many specialists, but slowly started to face the reality that we may not ever find out what was causing my mom all her pain. She started telling my dad, "they'll find out what's wrong with me when they do the autopsy." My response was that we'll just put her under and do an exploratory surgery. From May until August the doctor visits had stalled, but the family continued to do their own research to see if there was anything we could find.Then one day we got a call out of the blue from my grandmother. An ultra sound tech, who works for my grandmother's doctor's office, came up with a diagnosis. The woman told us she thought my mom might has SMA Syndrome, better known as Superior Mesenteric Artery Syndrome. SMA is very rare and there only about 500 documented cases, but unfortunately many doctors do not believe this is a real syndrome which is an issue we ran into at the Mayo Clinic. Despite Mayo ordering more testing, "Approximately 0.013-0.78% of barium upper GI studies evaluating for superior mesenteric artery syndrome support the diagnosis." (http://emedicine.medscape.com/article/932220-overview) SMA Syndrome can be caused by a trauma incident or caused over time by someone that's always been very thin. Learning that a bad accident could initially trigger this caught my attention. Remember, in January 2011, my mom was in that bad car accident and then lost weight. The fat pads hold up the mesenteric artery keeping it at a minimum 50 degree angle. When weight is lost, there is trauma, or compression on that artery, it pushes on the duodenum which then pushes against the spine causing pain. All the pieces began to fit, but my mom remained skeptical. Thankfully we were soon headed back to Florida and had an appointment with "Dr. Death."
Sept 21, 2012
I went with my mom to meet "Dr. Death." That man drove me nuts. He didn't seem to know my mom's history despite her seeing him for almost a year. He asked her several times if she drank or smoked, asked what medicine she was taking, and even with us trying to show him the article on SMA Syndrome he basically brushed us off. In the meantime the ultra sound tech had been in contact with "Dr. Death's" assistant and together they figured out what test my mom would need to maybe show the SMA. I'm still not sure what made "Dr. Death" decided to do this test. Maybe it's because there were 3 women sitting in the office in tears because no progress was being made. Either way I'm thankful that this new CT scan was ordered. That following Monday my mom went in to get her CT scan done. I know my stress level was through the roof and I can't imagine how my mom was feeling. By Monday afternoon we received her results. The radiologist determined that nothing was wrong with her. I was still a little hopeful because I had read that most people didn't know what SMA was or how to recognize it in tests. My grandmother's office called him back that same day and asked him to specifically look for SMA Syndrome. We needed the results back asap because we were going back to "Dr. Death" the very next day.
Sept 25, 2012
My mom, grandmother and I were headed back to see "Dr. Death." We still didn't have an updated report from the radiologist and things were once again looking like we had hit another dead end. About halfway to the doctor's office we received a call from my grandmother's office and when I heard her on the phone I knew...the radiologist had changed his report. After re-examination the radiologist determined that my mom did have SMA Syndrome. Not many can understand that feeling you get after finding out what's been causing your mom so much pain. Unfortunately the next hurdle was dealing with "Dr. Death." Even with the revised report in his hands, "Dr. Death" continued to ask my mom if she drank or smoked, but this time asked if she was anorexic or bulimic. Are you freaking kidding me??? He caught my grandmother giving me a look, but we were beyond caring what he thought at that point. While we were in his office he was on google looking up what SMA Syndrome was and what to do to treat it. He thankfully decided to refer us to see someone at Shands and said he'd be willing to put in a feeding tube if my mom wanted. Meanwhile my mom was researching her own doctors. There was a doctor at Mayo that we wanted to see, but ended up with a vascular surgeon. He was the one that has upset me the most. He made me feel like he didn't care that my mom was in pain or that she had this diagnosis. He was the one that said many doctors do not even believe this is a syndrome. He ordered more tests which annoyed me because I wanted something done. As I quoted earlier the barium tests will rarely show SMA, which is what happened in this case. I felt like more time had been wasted by another doctor that didn't seem to care.
In the meantime I'm trying to stay positive for my mom and just trying to help her in any way that I can. It's difficult to see her struggling and not eating. I'm always trying to watch her and make sure she's okay. I rush her through stores because I know being on her feet too long will trigger the pain. I fall apart when I see her not eating or knowing she cant keep her food down.
At this point I'm looking forward to Oct 15th. My mom is headed back to Florida to see a doctor in Tampa that has diagnosed and successfully treated someone with SMA Syndrome. I pray that he has the answers we are so desperately needing and hoping for. No more closed doors or windows for us we need a resolution with positive results.
Sept 21, 2012
I went with my mom to meet "Dr. Death." That man drove me nuts. He didn't seem to know my mom's history despite her seeing him for almost a year. He asked her several times if she drank or smoked, asked what medicine she was taking, and even with us trying to show him the article on SMA Syndrome he basically brushed us off. In the meantime the ultra sound tech had been in contact with "Dr. Death's" assistant and together they figured out what test my mom would need to maybe show the SMA. I'm still not sure what made "Dr. Death" decided to do this test. Maybe it's because there were 3 women sitting in the office in tears because no progress was being made. Either way I'm thankful that this new CT scan was ordered. That following Monday my mom went in to get her CT scan done. I know my stress level was through the roof and I can't imagine how my mom was feeling. By Monday afternoon we received her results. The radiologist determined that nothing was wrong with her. I was still a little hopeful because I had read that most people didn't know what SMA was or how to recognize it in tests. My grandmother's office called him back that same day and asked him to specifically look for SMA Syndrome. We needed the results back asap because we were going back to "Dr. Death" the very next day.
Sept 25, 2012
My mom, grandmother and I were headed back to see "Dr. Death." We still didn't have an updated report from the radiologist and things were once again looking like we had hit another dead end. About halfway to the doctor's office we received a call from my grandmother's office and when I heard her on the phone I knew...the radiologist had changed his report. After re-examination the radiologist determined that my mom did have SMA Syndrome. Not many can understand that feeling you get after finding out what's been causing your mom so much pain. Unfortunately the next hurdle was dealing with "Dr. Death." Even with the revised report in his hands, "Dr. Death" continued to ask my mom if she drank or smoked, but this time asked if she was anorexic or bulimic. Are you freaking kidding me??? He caught my grandmother giving me a look, but we were beyond caring what he thought at that point. While we were in his office he was on google looking up what SMA Syndrome was and what to do to treat it. He thankfully decided to refer us to see someone at Shands and said he'd be willing to put in a feeding tube if my mom wanted. Meanwhile my mom was researching her own doctors. There was a doctor at Mayo that we wanted to see, but ended up with a vascular surgeon. He was the one that has upset me the most. He made me feel like he didn't care that my mom was in pain or that she had this diagnosis. He was the one that said many doctors do not even believe this is a syndrome. He ordered more tests which annoyed me because I wanted something done. As I quoted earlier the barium tests will rarely show SMA, which is what happened in this case. I felt like more time had been wasted by another doctor that didn't seem to care.
In the meantime I'm trying to stay positive for my mom and just trying to help her in any way that I can. It's difficult to see her struggling and not eating. I'm always trying to watch her and make sure she's okay. I rush her through stores because I know being on her feet too long will trigger the pain. I fall apart when I see her not eating or knowing she cant keep her food down.
At this point I'm looking forward to Oct 15th. My mom is headed back to Florida to see a doctor in Tampa that has diagnosed and successfully treated someone with SMA Syndrome. I pray that he has the answers we are so desperately needing and hoping for. No more closed doors or windows for us we need a resolution with positive results.
No comments:
Post a Comment