Monday, January 16, 2012
Tuesday, August 9, 2011
Wednesday, July 20, 2011
Rare Disease Day Belfast 2011: Paula Mattis is a real super hero she fights SUPER...
Rare Disease Day Belfast 2011: Paula Mattis is a real super hero she fights SUPER...: "With only about 500 reported cases in the history of English-language medical literature, recognition of SMA syndrome as a distinct clinical..."
Wednesday, March 9, 2011
Thursday, February 3, 2011
Rare Disease Day Belfast 2011: Paula Mattis is a real super hero she fights SUPER...
Rare Disease Day Belfast 2011: Paula Mattis is a real super hero she fights SUPER...: "With only about 500 reported cases in the history of English-language medical literature, recognition of SMA syndrome as a distinct clinical..."
Paula Mattis is a real super hero she fights SUPERIOR MESENTERIC ARTERY (SMA) SYNDROME
SMA syndrome is estimated to have a mortality rate of 1 in 3. Delay in the diagnosis of SMA syndrome can result in fatal catabolysis (advanced malnutrition), dehydration, oliguria, electrolyte abnormalities, hypokalemia, acute gastric rupture or intestinal perforation (from prolonged mesenteric ischemia), gastrectasia, spontaneous upper gastrointestinal bleeding, hypovolemic shock, aspiration pneumonia, or sudden cardiovascular collapse from increased velocity of bloodflow in the SMA due to the reduced mesenteric angle.
My journey started long time ago when i was not Diagnosis it took 3-4 more years for me have a diagnosis and they Sadie I did not have it even with the test saying I did so then I went and got a 2ND opinion at John Hopkins with a new gastric Dr is name is Dr. Gerard E. Mullin (gastroenterologist) I had a pick line in before I seen Dr. Gerard E. Mullin gastroenterologist then from there Lot's of test then he referred me to Dr. Michael R. Marohn, (laparoscopic gastrointestinal surgeon) after June We where going to have my surgery done for august 13Th before that date came I was back in the hospital at john hopkin with SMA SYNDROME and pancreatitis for 2 weeks but it was OK I got to have the surgery for august 13th before I went for surgery I had a feeding tub put in they took that out when he did the surgery for the SMA SYNDROME and also took out my appendix, my gallbladder and also took an biopsy of my livery wich was OK. I will be seeing Dr. Michael R. Marohn and another Dr on Wednesday 29Th. More things have been going. Paula Mattis
My journey started long time ago when i was not Diagnosis it took 3-4 more years for me have a diagnosis and they Sadie I did not have it even with the test saying I did so then I went and got a 2ND opinion at John Hopkins with a new gastric Dr is name is Dr. Gerard E. Mullin (gastroenterologist) I had a pick line in before I seen Dr. Gerard E. Mullin gastroenterologist then from there Lot's of test then he referred me to Dr. Michael R. Marohn, (laparoscopic gastrointestinal surgeon) after June We where going to have my surgery done for august 13Th 2010 before that date came I was back in the hospital at john Hopkins with SMA SYNDROME and pancreatitis for 2 weeks but it was OK I got to have the surgery for august 13Th before I went for surgery I had a feeding tub put in they took that out when he did the surgery for the SMA SYNDROME and also took out my appendix, my gallbladder and also took an biopsy of my livery wich was OK. I will be seeing Dr. Michael R. Marohn and another Dr on Wednesday October 29Th 2010. I seeing the Dr had blood work done and then I went to get a MRCP test done because they think now I'm have something going on with my pancreas. I go back to see the Dr on November 3rd 2010 to see about the blood work and the MRCP test I had on October 13Th 2010.
I'm in pain, vomiting, diarrhea all the same things I had befor my smas surgery and on TPN for month and 3 weeks with no weight gain, I cant go to my Dr's Intel I have insurance there are so many test to be done this has all been on hold for 2 months now. I had very good insurance from my job but dont have that any mor...e. The GI sade I cant go back to my job ever that in my condesion I cant do my job ever. My GI sined my disabilty retirement and I got an low estmated of retirement benefit of 88.00 a month only but wating for the state to give me amont then I will be in retirement. So sad I loved my job with spacel ED kid's those I worked with.
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January 8 at 11:42pm Need to see my GI sometime tomorrow because johns Hopkins called him and Sade that the TPN is not working I'm not gaining any wight and my symptoms have not improving. I have to get a high amount of bills Intel I can have insurances johns Hopkins Sade to the GI. So I'm waiting for the GI sucutery to call me back to see... if I see the GI tomorrow are not but Johns Hopkins Sade to the GI that he need to late them know if I need not to be on TPN any more are not, if thees test need to be done asap are go into hospital.
Also need a ride up to the GI.
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January 19 at 4:42pm My GI appointment was something else. I go to johns Hopkins for an Upper GI and small bowel on Monday the 31st then see my Dr on Tuesday Feb 1st and go to umc to get MRCP with secretin enhanced. I also have to see surgical consult at umc.
I have a narrowing from the surgery so they may have to go back in also have things going on with pancreas. My Dr Sade today I my not be well for the rest of my life because of both things going on I may be on TPN long term.
Samantha Mina Much love to you too, Paula! Thank you for always being positive despite all you are going through. I am sorry you are experiencing ongoing problems from your surgery.
Everyone: It is important to note that many of the patients who do not fe...el relief post-op are struggling with significant issues other than their SMAS that contributed to the condition's development in the first place. It is necessary to identify if a co-morbid condition, root cause, or even a consequence/complication of SMAS is present and address that issue as well, because intestinal bypass surgery will only treat the SMAS and nothing else.
Everyone, let us keep Paula in our prayers as she battles ongoing post-op problems. She will have a surgical consult soon, to discuss the possibly narrowing of her anastomosis. She also has to see a cardiologist. She had an Upper GI on 1/31, she saw her doctor yesterday. She is going to UMC to get MRCP (enhanced with secretin) her ongoing pancreatic issues on Thursday at 3:15pm.
***Visit our sister group, by Samantha Mina: http://www.facebook.com/group.php?gid=170641319067&ref=ts and her Group http://www.facebook.com/group.php?gid=129829963700139&v=app_2373072738&ref=ts#!/group.php?gid=129829963700139My journey started long time ago when i was not Diagnosis it took 3-4 more years for me have a diagnosis and they Sadie I did not have it even with the test saying I did so then I went and got a 2ND opinion at John Hopkins with a new gastric Dr is name is Dr. Gerard E. Mullin (gastroenterologist) I had a pick line in before I seen Dr. Gerard E. Mullin gastroenterologist then from there Lot's of test then he referred me to Dr. Michael R. Marohn, (laparoscopic gastrointestinal surgeon) after June We where going to have my surgery done for august 13Th 2010 before that date came I was back in the hospital at john Hopkins with SMA SYNDROME and pancreatitis for 2 weeks but it was OK I got to have the surgery for august 13Th before I went for surgery I had a feeding tub put in they took that out when he did the surgery for the SMA SYNDROME and also took out my appendix, my gallbladder and also took an biopsy of my livery wich was OK. I will be seeing Dr. Michael R. Marohn and another Dr on Wednesday October 29Th 2010. I seeing the Dr had blood work done and then I went to get a MRCP test done because they think now I'm have something going on with my pancreas. I go back to see the Dr on November 3rd 2010 to see about the blood work and the MRCP test I had on October 13Th 2010.
I'm in pain, vomiting, diarrhea all the same things I had befor my smas surgery and on TPN for month and 3 weeks with no weight gain, I cant go to my Dr's Intel I have insurance there are so many test to be done this has all been on hold for 2 months now. I had very good insurance from my job but dont have that any mor...e. The GI sade I cant go back to my job ever that in my condesion I cant do my job ever. My GI sined my disabilty retirement and I got an low estmated of retirement benefit of 88.00 a month only but wating for the state to give me amont then I will be in retirement. So sad I loved my job with spacel ED kid's those I worked with.
See More
January 8 at 11:42pm Need to see my GI sometime tomorrow because johns Hopkins called him and Sade that the TPN is not working I'm not gaining any wight and my symptoms have not improving. I have to get a high amount of bills Intel I can have insurances johns Hopkins Sade to the GI. So I'm waiting for the GI sucutery to call me back to see... if I see the GI tomorrow are not but Johns Hopkins Sade to the GI that he need to late them know if I need not to be on TPN any more are not, if thees test need to be done asap are go into hospital.
Also need a ride up to the GI.
See More
January 19 at 4:42pm My GI appointment was something else. I go to johns Hopkins for an Upper GI and small bowel on Monday the 31st then see my Dr on Tuesday Feb 1st and go to umc to get MRCP with secretin enhanced. I also have to see surgical consult at umc.
I have a narrowing from the surgery so they may have to go back in also have things going on with pancreas. My Dr Sade today I my not be well for the rest of my life because of both things going on I may be on TPN long term.
Samantha Mina Much love to you too, Paula! Thank you for always being positive despite all you are going through. I am sorry you are experiencing ongoing problems from your surgery.
Everyone: It is important to note that many of the patients who do not fe...el relief post-op are struggling with significant issues other than their SMAS that contributed to the condition's development in the first place. It is necessary to identify if a co-morbid condition, root cause, or even a consequence/complication of SMAS is present and address that issue as well, because intestinal bypass surgery will only treat the SMAS and nothing else.
Everyone, let us keep Paula in our prayers as she battles ongoing post-op problems. She will have a surgical consult soon, to discuss the possibly narrowing of her anastomosis. She also has to see a cardiologist. She had an Upper GI on 1/31, she saw her doctor yesterday. She is going to UMC to get MRCP (enhanced with secretin) her ongoing pancreatic issues on Thursday at 3:15pm.
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