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=tsMy 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.
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.
Not a good night for Paula I'm having a bad night I know what happens when I have any intake but I try anyway. Today and to night I had some food and today I vomited very Beadle and I had some food later tonight and the same thing just got done vomiting and need to now. Alot of pain
ReplyDeleteI am Carol Mattis!` Paula Mattis twin sister!` My heart hurts knowing that I all I can do is pray for her!~ I hate she going through this!~ I think me or othier's should do a site whier dontaion's can be maded for my sis!` I wounder if I can do that her whier I live in Fl? I just wish find out why she not geting better & wish she can be back to normal & have no pain & no more sma!!
ReplyDeleteLove Paula Mattis Twin Siister
Carol Elizabeth Mattis!
Thanks sis. We need more rsearch and awareness on SMA SYNDROME. I go today for my get MRCP (enhanced with secretin) ongoing pancreatic issues at 3:15pm. I will keep you all posted and pary for all that have SMA SYNDROME and other with
ReplyDeleteRare disease like us.
Go look at my group for SMA SYNDROME the link is http://www.facebook.com/#!/group.php?gid=129829963700139 Thanks Paula Mattis
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI had my MRCP (enhanced with secretin) it was not fun but I got threw it. I call about my surgical consult tomorrow. I will keep you all posted. Thanks for all the support. Paula Mattis
ReplyDeleteI just hope they can find out what she needs to know & so she can be cured! I am going go to my bank tomory witch is wacova bank in daytona beach,fl on int. speedway blvd.to get a acount up for her so I we can help her medicale help with stuff her insurnce will not cover!~ I love her!` We my be two diffrent people but she family & love her & went see her get better!! Pass on to all this page ty!~ I will update you guys how donate help my sister ty!
ReplyDeleteHi, I'm another one of Paula's sisters. When Paula first told me about her problems, I knew she needed help fast. She had many people telling her she was faking to get out of work or to get attention (even doctors) but I can assure any doubters, this is real. You can't fake the pain she goes through. You can't fake the malnutrition. You can't fake the lack of energy. I have taken Paula to nearly all of her appointments. I was there when she was officially diagnosed. You could see the weight of the world come right off her shoulders that day. I was there for her surgery. We're devastated that she is still having problems. I feel that if her first doctor didn't spend years telling her she had bad heart burn, things would not be as bad as they are now. The syndrome has affected her entire body and every aspect of her life. Paula's always been skinny, but never malnourished. She always had energy and she was always happy. She liked working and took pride in whatever she did, even back in the days when she worked in a video store. Since this problem Paula can't do much of anything. She doesn't have the energy to do anything. She's been forced into early retirement. Sitting too long puts her in pain. Standing for too long gives her pain. Even laying down is painful, so it's a fight for her to even sleep. When people ask me what she's going through, I say imagine what it would be like if everything you tried to eat turned your stomach and intestines into knots and came back up. Imagine what it would be like to slowly starve to death. Let's hope people and doctors start taking this more seriously, start researching possible causes and work towards early detection.
ReplyDeleteAll us sister Are good moms & people!` WE always look out for family!~ What we are about! I agree with my sister wrote what she wrote!~ It just sucks!~ That my sister not geting help she needs from the right dr.'s!~ I love her & alway's in my heart & prayer's!
ReplyDeleteI have alot of pain today. The new test look fine but I'm not so I don't know if I'm being seen by the surgeon. I will fine out Monday are Tuesday. Bad intake, diarrhea,vomiting, constipation and Lot's of pain:(
ReplyDeletei wish i could come to know exactly why you have these digestive and absorptive problems after such an extensive surgery and so much medical care.you have been going through this ordeal for more than a year now i think and as a doctor i can understand your pain.but your courage is worth appreciation.you are one brave woman Paula.!that is exemplary patience and persistence.i can see you smile in the photos.we all are with you and you are our role model for life......May Allah bless you with health and a full recovery to a happy and prosperous life.all the best and stand firm.take care.
ReplyDeleteHave alot of pain today. The new test look fine but I'm not so I don't know if I'm being seen by the surgeon. I will fine out Monday are Tuesday. Bad intake, diarrhea,vomiting, constipation and Lot's of pain My GI is going to look at the test that are normal and then get back to me about the blood in stole that happen today. The other test in November where not normal so will see what he wants to do.
ReplyDeleteI had very bad diarrhea not that long befor that having constipation blood in my stool
ReplyDeleteI have a very bad headache that has been going on for awhile now
ReplyDeleteSMA Syndrome, while rare, is indeed underdiagnosed. It is missed by physicians for a few key reasons: 1) the symptoms associated are very nons...pecific (abdominal pain and vomiting occur as a result of various conditions); 2) x-ray pictures are often obscure or appearing "normal" at the time testing is performed because the obstruction in many patients is intermittent, 3) it is a controversial diagnosis as well as a diagnosis of exclusion, so it is only considered as a last resort.
ReplyDeleteThe growing number of survivors joining this group is not a reflection of an increasing precedence of SMA Syndrome in the population at large, but rather an increased *awareness* of the existence of SMA Syndrome as a possible diagnostic option. The precedence of SMA Syndrome itself is probably the same as it has always been, its just that more sufferers are being properly and timely diagnosed
The surgeon at UMC is not going to see me so I don't know what my GI is going to do. I go to cardiologist Thursday.
ReplyDeleteWe are fighters and we will do what it takes to get better
ReplyDeleteThe GI's secretary is going to talk to the GI and get back with me. There is something going on with the pancreas duck. Novembers test see narrowing of anatomises where the surgery was done for the smas. The new test for this month does not see anything and the umc surgeon does not want to see me so the secretary for GI will get back with me Tuesday. I may have to see the first surgeon or some other surgeon don't know yet but I will keep you all posted
ReplyDeleteI'm on a holter monitor diary cardiac associates
ReplyDeleteI have had palpitations alot lately and chest pain off and on and shortness of breath. For years now I have had shortness of breath off and on also palpitations off and on but lately it has been going on more. The dr from cardiac associates thinks it irregular heart bit are it's are my lungs may be making it happen.
The GI secretary and she Sade should here what the GI wants to do about surgical consult and he may say go back to Michael marohn the one that did the surgery. The secretary will get back with me tomorrow sometime.
ReplyDeleteI have no more TPN I have a bill for $2,796.00 and $13,682.15 was self pay baltimore wich I will be getting that bill to I also have other bills that are over $4,000.00 too and I sent all this bill to case manger for the spenddown to meet the requirements for medical assistance eligibility and have not herd back fro...m the case mangerer yet. I have mate the spenddown I should have medical assistance right now and I don't I'm so mad because I'm now not going to have what i need wich is TPN.
ReplyDelete$600.00 for upper-GI and GI $200 and Dr $140.00
Sorry about all going through!~ I am going to still try site up a tax id!~ So people that care & went help othiers can but money into your account!~
ReplyDeleteSis I am alway's thier for you!` Try help you anyway can!`
ReplyDeletePaula I cant even began to imagine what you may be going through right now. Please stay strong I will put out good energy and prayers for you. I will pass on this page to family and friends.
ReplyDeleteCarol please post the info where to make donations once you get it set up so I can pass it around.
Blessing
~ A Friend
I have alot of pain but I'm so happy for my gift from my sweetie cant have the chocolate but he can have that on-top of this gift I'm getting a Minne makeover hair, Neils, wax's and any thing I want Tue or wed.
ReplyDeleteMy bill's are 20,700.00 now
ReplyDeleteGI need to get back with me and late me know about surgical consult and my picc-line that as of sunday no home care and no more TPN.
ReplyDeletePaula I hope you had a wonderful valentines day.
ReplyDeleteI wouldn't worry so much about the bills right now those things will be taken care of from family and friends once the trust fund is up and running.
We need to make sure you are getting your TPN.
If you don't mind me asking are the doctors denying you TPN? or is it something that needs to be paid upfront?
I am assuming your in Maryland have you been to the social services office yet to apply for state emergency medical assistance?
Carol are you having any luck with the banks down in Holly hill or Daytona?
I will work on trying to start a 501 (C) 3 non profit in the next few days.
I will keep you posted on the status.
~A Friend
Thanks im some what ok know but alot odf us need help
DeleteI have not been keeping anything down. Had sever pain last night and it's just now not as bad as last night. Have no home care right now for my pic-line TPN and other things that are not going well right now. GI need to get back with me and late me know about surgical consult and my picc-line that as of sunday no home care and no more TPN.
ReplyDeletePicc-line TPN home care is back on for 2 more weeks. I hope the medical assistance that they say I have now but they are sending me a later in the mail to late me now what I do next but the one thing I don't like is case manger Sade that I'm may have to pay for some of the bills from the spenddown wich I don't think that it's fairer to have me have all this bill to meet my spenddown then pay for the bills that I cant pay to begin with also if my Dr's and home care don't take this medical assistance then I need to see someone how does and I need to see the Dr's that know about me and specialize in SMAS. My aunt wants to help me and pay my $1,500.00 that I owe for my old insurances and wants me to get back the old insurances so I have better coverage ones I get my retirement. I thinks this will help me more the only thing that will not be good is that I will have to pay the premium that will make my income only 300.00 a month ones I do that. I have not herd back from the secretary from the GI dr and so I don't know what they want me to do about this surgical consult that did not happen and other things that are going on.
ReplyDeleteI'm calling the GI's secretary back Tuesday they say she has been out for the week so I hope she is back Tuesday she also has had SMAS also but I need to know what they want me to do about this surgical consult and other things that are going on. I need a new plan because I did what they Sade and nothings improving so I think he souled talk to Dr. Marohn at Johns Hopkins that did my surgery and see if he will see me again and if not have me go to another surgeon to get this surgical consult and go from there.
ReplyDeleteI go back to see my GI Thursday at 2:00pm
ReplyDeleteI'm getting my old insurances back in march
ReplyDeletePaula I'm glad to hear you are getting some help and hopefully some some relief. I am still working on the non-profit relief fund for you. I have been hitting a lot of road blocks along the way, but I have not given up on you.
ReplyDelete~A Friend
not good went to GI today and since he See's that I did not have the Stool test fecal emsime test done in November he wants me to have that done but i have not been having but only 2 blow movements in 2 weeks so this should be fun. Then we will see from there what the plan is. I have to stay on TPN. so I'm a mastery diagnosis again
ReplyDeleteI have to do a pancreatic enzymes test
ReplyDeleteI'm having alot of pain also getting sick on top of that tooth pain and gum pain with bump on my gum near my tooth and also on up under my lips on my gum need to see dentist asap yea I just don't now how many more health things can start up ontop of the ones I have, this is just getting to be to much
ReplyDeleteMy Fecal Pancreatic Elastase-1 came back OK so I don't know what the plan is now and I'm on the TPN for over 4 months now also having all the same symptoms befor my SMAS surgery now I have 99.5-100 temp for about 3 days now
ReplyDeleteFebruary 26,2011 I ways having alot of pain also getting sick on top of that tooth pain and gum pain with bump on my gum near my tooth and also on up under my lips on my gum need to see dentist asap yea I just don't now how many more health things can start up on top of the ones I have, this is just getting to be to much. now on March 3rd, 2011 My Fecal Pancreatic Elastase-1 came back OK so I don't know what the plan is now and I'm on the TPN for over 4 months now also having all the same symptoms befor my SMAS surgery now I have 99.5-100 temp for about 3 days now
ReplyDeleteSunday 2:45- Monday night I was in The ER at Johns Hopkins Befor I left the ER at Jhons Hopkins I was vomiting up green and not felling well but the pain meds was helpping but that's all. On my way home monday night in the car vomiting up alot in a bage not fun. Got up today pain very bad and cant keep fluids in me I'm going to see how things go in the next 3 days if i'm not doing better i'm going back to the ER. The pain has not got better so I more likely to go back to ER. I cant walk 3 stapes with out sever pain. Tonight I have a 99.2 temp right now it's 8:47pm my blood sueger is 122 when i'm done with my TPN in the morning I will see how my blood sueger is.
ReplyDeletefluids and anything is not staying down. If you go to my page you will see the video of my vomiting up green fluids.
I need to go back to ER. I have not been doing good at all. Keeep me and all with SMAS in your prayers
ReplyDeleteLet's hope people and doctors start taking this more seriously
ReplyDeleteLet's hope people and doctors start taking this more seriously. To all with SMAS dont give up keep on fighting. EVERY LIFE COUNTS!! So make all you run into support SMA SYNDROM.
ReplyDeleteGoing back to the ER at Johns Hopkins. I will keep all of you posted.
ReplyDeleteMy Dr where I live and my GI Dr from johns hopkins want me to go back to the ER at Johns Hopkins becouse my pain has gotting much more sever and othere thing have not gotting better.My wight is 89ib not good at all and i'm on TPN so I dont know waht to think any more. My wight tuesday was 95, wednesday it was 93 so that going down 6ib in 3 days. I Cant sleep becouse of the pain. Cant have intake. I have been very hot at times my tem is 98 something then it's up in the 99.1 tep. my blood sugers are... ok. Some time is to much but i'm not going to give up fightting, haveing faith. I love my family, my friends, all of my SMAS family and my life and most of all myself to give up. When the Dr's are done seeing me at the ER at Johns Hopkins I will late you all know if they keep me are send me home but more then likely they will keep me.
ReplyDeleteHi all. My name is Meghan and I just got back from my own visit with Dr. Mullin at Johns Hopkins and he said I should share my experience. 2 years ago I had the op. for SMA. (Performed by dr. Morohn) It went well for about almost a year but then started vomiting again. It was really bad to the point where I could not live my daily life normally. I had to withdraw from my college and was hospitalized for 2 weeks. They said that everything looked "beautiful" for the surgery and could not figure out why I was vomiting. I had several endoscopies with stretching and Botox they worked ok but I was still vomiting at least once a day (down from everything I ingested) so I could live like that (pretty pathetic!) I went back to school and had an environmental class; where they showed us a film on the food industry and animal slaughter. At that point I decided to be a vegetarian. So I stopped eating red meat and poultry. And without me even realizing it I stopped vomiting! I was very surprised by this and delighted. Dr. Mullin suggested that maybe I developed sensitivity to meat as a result of my surgery. All I know is I haven't gone this long without vomiting in a whole year and I couldn't be happier.
ReplyDeleteI'M KEEPING FAITH IN GOD, FAMILY, FRIENDS AND ALL OF MY SMAS FAMILY. I HAVE TO HAVE SOME FAITH IN THE DR'S BECOUSE BEUON SURGERY THERE HAS NOT BEEN ANY TIAPE OF PLAN FOR ALL WITH SMAS SO WE WILL SEE HOW THINGS GO. SOME DR'S ARE NOW THINKING THAT IT IS NOT THE SMAS THAT'S DOING ALL THE SAME THINGS BUT I DONT AGRE. THIS PAIN HAS GOT SO BAD THAT I CANT LIVE THE HOUSE AT ALL:( KEEP ME IN YOUR PRAYERS AND YOU ALL ARE ALWAYS IN MY PRAYERS. THIS SUCKS BUT I HAVE TO KEEP FIGHTING THE GOOD FIGHT. I HAVE ALL THIS APPOINTMENTS TO GO TO -Provider's Name: Dr. Vinu, Ganti Date/Time: Mar 31 2011 9:30am Tel. No. : 301-540-8146 Comments: Follow up primary car provider.(Other Issues:) - Please review the following: Please discuss with your primary care doctor if you need to be set up for outpatient iron infusions for your anemia. - Provider's Name: Dr. Gerard Mullin Date/time: Apr 7 2011 10:00am Tel. No. 410-933-7495 Comments: Follow up GI doctor, please keep this previously scheduled appointment -Provider's Name: Pain Psychiatry Tel. No.: 410-9557246 Comments: Please call to make an appointment, the office requests that the patient call. - Provider's Name: Dr. Linda Lee- Integrative Medicine Tel. No.: 410-828-3585 Comments: Please call if you would like to see Dr. Lee (discharge Dietss:) Devices:) - Vascular Access Device - Central Line Mar 23 2011 Infusion/Enteral Needs: TPN- Please resume your TPN
ReplyDeleteI'm on 3 Pain Medications and the pain is so bad that even going to the bathroom is so very hard to do, it's only about 14 staps away. I have to stop alot and line on wall not good at all:( cant eat anything. Been on TPN for 7 months now. My TPN line is not working so they have to call my GI to get a medications and I hope the blood line to my TPN will work tonight if not I cant use it and have to call Walgreen Infusion company. I have to see my primary dr on Mar 31 2011 at 9:30am thats what the Hospital setup and also in the Other Issues: it says to Please dicuss with your primary care doctor if you need to be set up for outpatient iron infusions for your anemia. The Hospital also wants me to set up with Pain Psychiatry and I called them and they sade that I can be seen inpatient but my insurance they do not take if I did go inpatient with out insurance it would be $700.00 I cant do that so I dont know what the plan is now for that. I have to see Dr. Gerard Mullin on Apr 7 2011 that was an previouse scheduled appointment that I had also that appointment was for Apr 21 2011 but his secretary upped the appointment to Apr 7 2011. The but a Dr. Linda Lee to see if I would like to see Dr. Lee Integrative Medicine but I dont now her are dont rembere seeing her becouse I was seen by my GI tem, Medicsion tem, My surgtions tem and Pain tem. I just need all of the dr's to not do a wait and see thing antel they see me agan and all this medications are not good for your body over a perued of time. I have had medications in my body for so long I lost count. I will keep my faith, love in God, Family, Friends and most of all my best friends and my family of fighters my SMA SYNDROME FAMILY GOD BLESS ALL OF YOU AND WE WILL FIGHT, FIGHT, FIGHT AND NEVER GIVE UP ON GETING BACK TO LIVEING.
ReplyDeleteRemove PostPaula Mattis
ReplyDeleteI'm not keeping the mediction down right now so I need to late the GI and my Dr know about that monday. My pain is very bad but having some what of a better day today, I cant get around that will at all like it been for over month.
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Let's hope people and doctors start taking this more seriously. To all with SMAS dont give up keep on fighting. EVERY LIFE COUNTS!! So make all you run into support SMA SYNDROM.
ReplyDeleteGod Bless
Today i'm not getting around very will like it has been but I'm wores then now then I have beenbefor my surgery. I cant keep much of any thing down. I have not been having good intake like I have been Have not had a bowe movement at all it was the 23rd of march only that's when I came home from the hospital. I'm keep the faith and fighting. I have lot's of medication and I dont lik takeing alot of medication but if the dr think it will help I will take but having medication in your body to me is not good for your body over time. I have lots of appintment. I will keep you all updated. Thanks all for your suport and love for SMAS. God Bless all.
ReplyDeleteI cant keep food down and I sould stay on the liquid diet that's what Dr's sade I only do a liquid diet but I want to see if I can keep down food and I now evry time I do it do's not stay down. It comes up all at once are a litel at a time threw out the day. I sould now better but I just want to see if one time I can keep down food and be ok.
ReplyDeleteI finly had a B-movement but it was diarrhea. The last time I had a B-movement was wed 23 of march and finly on the 28th I had one not a good one but I had one. My friend ask if I wanted something from 7 Eleven and at frist I sade no then I sade I can have liquids so I sade can you get me a slurpee and my friend says yes I will get you one so my friend did and I sadw thanks so much. I had some then some came up then some more ech time I had some. All liquids have stade down but not now:( I dont want my friend to feel bad becouse it has not happen and now it is.
ReplyDeleteMy one line for the TPN is bad so RN has to come out to see if they can make it work. Thank god I have 2 lines to my picc-line one is for TPN and one for blood. The one that's not working is the TPN line so i'm using the blood line for my TPN.
ReplyDeleteI had another bowe movement today but it was diarrhea. My home care RN came out today to take care my TPN line that was bad but it's good now. Thanks for all the love and suport.
ReplyDeleteI have been not getting around very well. the pain is a some what batter. I have a tmp now of 99.2
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteMy pain is better but the pain is making me not get around well. I have a temp of 99.6 right now on wed march 30th 2011 I'm very week. I go to my primary care Dr march 31 2011. On April 7 2011 I see Dr. Gerard E Mullin GI Dr.
ReplyDeleteIt's now 99.7 temp
ReplyDeleteI went to my primary care Dr today for follow up from being Discharge from Johns Hopkins Hospital on mar 23, 2011 and to see about iron infusions so he sending me to Dr. Ram tuehan for outpatient iron infusions for my anema but will see if he is the right Dr and see if he can get this iron infusions for my anema. I had a temp 97.7 and now it's 98.6. My primary Dr. Vinu Ganti want's me to see some where I have been befor Advanced Pain Management Services. Jhons Hopkins did want me to see some one at Hopkins for Pain Management they are called Department of Psychiatry and Behavioral Scinences and all so Pain Psychiatry not the same office but they do not take my health insurance it would have been $700.00-$750.00 just for the consulation only so that's way i'm seeing Advanced Pain Management Services. The pain medications are helping a some. I cant get around very will and the pain can get wores if i'm moveing around more are sitting, standing, walking, bending, lying down some times and other things that I cant do becouse the pain gets wores. On April 7 2011 I see Dr. Gerard E Mullin GI D
ReplyDeleteI cant eat any thing it comes up and I have pain when I eat any thing and i'm on liqiud diet also on TPN I have a picc-line for my TPN.
ReplyDeleteI was not abel to get to my pc last night becuse of what you are about to look at. I was writing some things down that my next Dr's Appointment needed for the April 4th at 2:15pm and sitting for some time doing that and the pain just got worse and when my boyfriend called to ask me if I can make hem some thing to eat I sade ok know that this pain was going to get worse if I was standing for some time so I went to make hem a bag meal and I had to open this bag to put in to make the meal so one of my roommates to help so the roommate got it open for me went back to make the meal and with this meal I had to do alot of stirring frequently for 12 minutes then the pain just got worse then I went out side and almost did not make it out side came back in the pain took overy and I dropped to the floor in the kitchen crying non stop in sever pain then got up went to the frge to get a drink to take my medaction took it and I was lenning on the kitchen canter then went to see if I can get to the livingroom and did not make it I dropped once again thisw time it was so sever I could not get up crying more than ever before so I was baening on the floor saying help me gary wich is my boyfriend so he come's to help me he picks me up and we get to the dinning room and living room but we have a gate for the dogs there so he had to carey me over the gate and put me on the couch. I was there for a long time the came to my PC to up date all of you but my pain is getting up there again so i'm getting of here to go to the couch. Love all of you and all of you are in my prayers all the time. God Bless and nite, nite
ReplyDeleteI had a bowe movement today but it was diarrhea but it's been march 29th when I had the last one. Last night was bad as you can see on top post.
ReplyDeleteI go for my frist iron infusion tretments next week and then eah week. Fun, fun, fun
ReplyDeleteI go to GI on april 7, 2011 Have to see new pain specialist becouse the one I had for my back will not see me any more. Lots more appointments to make. DR's DR's DR's I will keep you all updated on all the new appointments, new tretments and tretment plans. God Bless all my SMA SYNDROME FAMILY, MY FRIENDS AND FAMILY. I HAVE SUCH GRAT SUPORT FROM ALL OF YOU. THANKS SO MUCH AND YOU ALL ARE ALWAYS IN MY PRAYERS.
It was not a good news and plan today at the GI with Dr. Mullin. Dr. mullin sade that I need to see someone that nows more about sma then hem becouse i'm not getting beter afther surgery and he cant speek for the surgetion also he has me on a picc-line so that it keeps me from dieying prety much he sade that i sould see a nutrietuones at Hopkins are from where I live to help me with the liquid diet and see some of the mayo dr's. He is a good Dr but there is only so much he can do for me right now. Dr mullin at Hopkins has beeen very good to me. The surgtion he sade he cant speek for is Dr. Marhon at Hopkins He is a good surgtion it's just he can only do the best he can do to and also he does not know any thing bass sugery too but my Gi thinks the suryger may have not been sasfull but only one test in nov that he seen nearween but all test have been fine up to this pont so that's way I think the surgtion is not going to help.
ReplyDeleteGo and look at this link http://www.facebook.com/#!/home.php?sk=group_203299953023588&ap=1 Thanks
ReplyDeleteI have to see a nutrietuones at Hopkins then see a Pain Psychiatry. When Dr.Mullin (GI) and Dr. Marhon (surgtion) get reports back from the nutrietuones at Hopkins and Pain Psychiatry then they will tell me if ether one of them can see me, but for right now TPN and need to see nutrietuones at Hopkins and Pain Psychiatry
ReplyDeleteNae is experiencing the same thing..she has to go in to be fed thru IV today....I think we may have to travel further as her surgeon seems to be at a loss too....I refuse to give up no matter how discouraging it gets...I love you all and am on my knees praying!
ReplyDeleteThanks Tiffany go here to see more about all of us with smas. http://www.facebook.com/event.php?eid=185909371452579#!/home.php?sk=group_203299953023588
ReplyDeleteThe Dr's need a report from them and to help on my liquid diet with being on TPN AlsoThey need to do somthing now are i'm going to get wores , my wight has been 89-96to help with my wight are to see if other liquid can help. The Dr's are wored that it will get much wores and they dont want that to happen. the TPN they have uped as much as they can without making my surgers bad I cant do food food like befor my surgery I cant keep any food down and that's way i'm on TPN and a liquid I have had boost and it has came up on me I was on nausea med but nt any more and i have had prblomes keeping med down also I cant keep down med's some timesi'm on TPN for 7 months nowI think now it's 8 months.
ReplyDeleteback from hopkins well the nutrietuones she gave me ensure Enlive Therapeitic nutrition Drink Apple Naturally & artificaly flavored wich is taste bad and makes me feel bad the other one she gave me is unjury Medical Quality Proten 20 grams to use for the day. She ask me if i ask the dr about tub but in lower stomach I sad no have not and told her to put that in her report
ReplyDeleteI see the Pain Psychiatry thur
ReplyDeleteI went to psychiatry in may it took some time for them to send the report to my GI's office but now I have to here back from GI to see what's next and if he says that I have to go to mayo and if he will give me any new tretment. I was sapost to here back from the GI's office last friday and this pass Monday but i have not yet.
ReplyDeleteYes the old Wilkies Syndrome. My husband was diagnosed with this way back in 1983. He had all the operations, the nausia, the vomiting, all the treatments, the tube feeding, all the pain, all the medication, all useless, worse at the end of it all. He suffered for over twenty years and know what, unknownst to all, there was a cure and he only got it by chance, being treated for something else - and after 20 years of suffering. But it was really too late then. But he did have about three years free of the disease until something else got him. But I realised before he died what caused Wilkies Syndrome, not that that would have helped. It was the cure and the cure is there. If you want any more info email me at poemsgalore3@live.co.uk
ReplyDeleteIt's off to the Mayo Clinic in Fl August 22nd and app on the 30th.
ReplyDeleteI'm now living to FL on the 24th of august and go see the Dr @ Mayo Clinic on August 30th. Need all the prayers I can get
ReplyDeleteI have not been doing good with post-op sam syndrome and other things so if you like to look @ this link you can go look at http://www.causes.com/causes/644572-turn-facebook-purple-for-the-new-year-to-raise-awareness-about-sma-syndrome
ReplyDeleteI will keep you all update as much as I can. you can also go to the links on facebook, twitter and other links I have. My twitter is Good1paula. Thanks for all the support and well wishes
ReplyDeleteI go see Dr's soon to start out my new year and I have to make phone calls to ask about bad blood work to see if the want me to go to Hopkins ED- ER like they did befor the holidays. I have to get an EKG so I can have the foot surgery also other things. so im going to be very bessy this 2012. God Bless all my love ones, friends and SMA Syndrome family
ReplyDeleteCalling yourself a hero doesn't make you one.
ReplyDeleteI'm a hero for fighting SMA Syndrome and all my SMA Syndrome Family are Hero's also and I will fight for me and all of my SMA Syndrome Family. Why would you make a comment like that? A good friend put this up for me and all with SMA Syndrome. All of us that have SMA Syndrome have a very bad time and are life has not been the same and you need to have a heart Justno. My God Bless you.
ReplyDeletePaula you ARE a hero/warrior. I have been saying this to my granddaughter Scarlett who has been struggeling with SMA for a few years. Geez, I have seen her face when bad news comes or a new tube is inserted, etc. I have watched and died inside as she puts her brave face on to fight her tears of pain, fear, and exhaustion. You guys are WARRIORS because you're in a BATTLE! Stay strong, this will NOT defeat you. You ARE a hero, I've seen it...
ReplyDeleteThanks so Much!! Much love an blessing to you and your granddaughter!! Prayers Always
DeleteIf you want to help all with SMA Syndrome go to this link http://www.causes.com/causes/644572-turn-facebook-purple-for-the-new-year-to-raise-awareness-about-sma-syndrome
ReplyDeleteI have been back in the hospital on Feb 6,2012 needed pic-line removed and new on put in then foot surgery also have not been doing good with pain, intake and other things!
ReplyDeleteIm going to see lots of Doctors soon. Im on my way of getting this nonprofit going. God Bless and I would like to post this for a awesome person that all the SMA Syndrome family will miss, Im so sadoing and sadoing for you and your family at this very hard time. Laura Westfall Brown will always be with us and it her fight that helped so many of us and we are forever thankful. I know she wanted to help all because her and Samantha wanted to start a nonprofit to help All with SMA Syndrome and to inform educate all so SMA Syndrome is looked at more then it is. I talked to Samantha Mina about helping getting the nonprofit going and I have getting most of the paperwork done and retyping it then send it back out to Samantha to sing then have more fundraisers to make the money needed to send the paperwork out because their fees that go along with the paperwork also legally Im going to get the $900 need to do that also. GOD Has Blessed All Of Us With The Love, Faith, Caring, Compassionate, The Fighting Spirit And Much More Of Laura Westfall Brown!! RIP My Friend, MY Sister, My Inspiration Also Much More!! Intel We Meet Again In The Heavenly Place Your Always be With Me And All Of Us and Helping From Haven!!
ReplyDeleteI talked to the GI's sacitary and she has me going to see him on June 6, 2012 and My blood work is not good my blood sugar is 50 and other things so Im seeing my Dr on Tuesday!! My blood auger from Mondays blood work is not good it's at 50 also a lot of other things like my Bp was 157 which is high it from the 90s -119. Got appointment for my dr Tuesday for the blood work, Bp, I'm having bad headache and that can be from the blood sugar being so low then I see GI on June 6, 2012 for a lot of rezones but I have been having a lot more going on that needs to be talked about also want to talk to him about my TPN and Pic-line because I have been having big problems with that. My tempter was 96.2-96.6 today very low.
ReplyDeleteI'm seeing more often that a lot of people that had SMA Syndrome are no longer jus having SMA Syndrome also been diagnosed with gastroparesis,neurological problems and much more, somewhere somehow Theres Links to All of this!! Always in my prayers and God bless
ReplyDeletePaula Mattis
ReplyDeleteI have optic nerve problem in my brain and getting checked for some other neurological problem that has to be addressed aggressively if Diagnosed, Possibly have MS my cousin had MS and also high-risk Colen Cancer with my grandmother died at the age of 60 and now I'm a very high risk because I had precancerous cells. also no control movement in my neck and that's when i was in the hospital and now also I have no functioning of my left hand now
I have to go to hopkins for ever thing now!!
ReplyDeleteI have been in the hospitals from Aug- Nov:(
ReplyDeleteI'm very Bloated usually if I tried to eat more than that's what happens so If I do smaller portions throughout the day it just the really bad diarrhea and besides that I'm very weak feel like my body is shutting down and can't balance properly so I'm Konefal never and can't properly functioning walk and do things that should be simple
ReplyDeleteI'm now hitting 83- 79 my wight not good. GOD BLESS YOU AND ALL MY SMA SYNDROME FAMILY AND ALWAYS PRAYERS
ReplyDeleteI'M Taking CENTRUM, Gabapentin 3 times a Day, Pantoprazole 1 every day, Iron 3 a day,FABB 1 a day and vitamin B-1 100 mg
I have to see lots of specialists soon if I'm not hospitalized again. Neurologist doctor told me that I have very small nerves and he couldn't understand why, its his first case I guess seeing that. He took a educated guess and said may be small people have small nerves!! He said that he's going to load me up with vitamin B And that should make me feel little bit better. I had blood drawn The regular CBCs.Because of problems with my picklines I cannot have anything placed there so they been debating on what they want to do and now the neural neurologist is put his foot down and saying she has to have Placement for nutrition or she will die. I had problems surgically post op have not gotten better and There's a lot of other things going on medichttp://sphotos-a.xx.fbcdn.net/hphotos-ash4/1098_3685520863471_46851878_n.jpgally that converse with everything else!
ReplyDeleteHopefully The Doctor's will have me on there show!!! If it's OK with them I would like to have Samantha Mina on the show and if she is OK with that also!!!
ReplyDeleteI Will be Staying at Johns Hopkins Hospital some time in the mild of December are the end. They are very worried they cant amended me regular so they are butting me in the eating disorder clinic not because i have an disorder with eating but this is the only way so they can save my life and find out way My body is not keep food in with very bad bowel problems, way my body is not keeping natures, way my guts not working properly and much more. They will have my specialist involved when needed also other Doctor's if need.
ReplyDeleteI'm doing good now
ReplyDeleteI'm not doing so good and I will let you all know soon
ReplyDeleteHi Mattis,
ReplyDeleteI am crying when I read your story and your post. How are you doing now? My 19 y old daughter was diagnosed SMA syndrome in Jan this year. She lost over 10 lb in the past 6 months. She has the same SMA doctor, but she does not like him at all. Do you have any suggestion for finding a better doctor? I do not want her to do surgery and try to re-build her GI by adjusting food recipes. I know God has a plan for each one, including patients like you and my daughter. I will pray for you and my daughter. May God listens to my prayer and crying and cure you and my daughter. One last question I would like to ask you is: How many years this disease has been bothering you? Thanks.
I have on only disease and I believe this is the main reason the SMA syndrome and all the complications to begin with!! I’ve been having a hard time mabilitie going downhill an much more!!
ReplyDeleteHello my name is Dara Ritch I live in Portageville mo. I'm not the one who is battling sma my 9year old daughter was diagnosed with sma on Dec 1st after 3 years of not getting answers an being in the hospital about every 4months for at least a week at a time.
ReplyDeleteThe past two episodes she's had have been bad with a complete blockage an we was sent to st. Louis children's hospital to see a GI specialists who was great. She is more than likely going to have the feeding tube put in before the end of the year