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Post by Mariposa(Heather) on Feb 3, 2015 21:11:28 GMT -5
I have this very pregnant looking painful belly that bulges out especially when I am standing and when I am in a halfway sitting up position. I have always felt like this was a hernia and when I last saw my Dr. on Friday, he agreed and sent a referral to a surgeon to have it checked out. After I received these results from the CT scan I had yesterday, and his notes, I am confused. I asked if the scan showed a hernia and he just referred back to what he said on the scan results- Your pain is likely related to chronic changes from that clot in the veins. Will see whether the bariatric surgeon has an idea if that can be somehow solved. Alternativey, you may need to see a vascualr surgeon- What kind of clot looks like a 8 pound fetus? Anyone have an idea? I just don't believe that. The pain is worsening daily and I ended up buying a used electric hospital bed to sleep in because I just couldn't stand sleeping in a recliner anymore. I have an appointment with the surgeon this Thursday. If anyone has any imput I would appreciate it.    |
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Post by Simba on Feb 3, 2015 21:41:05 GMT -5
Hi Mariposa,
You had a superior mesenteric venous thrombosis, did they tell you the reason for your thrombi? Important to know why. Have you had genetic testing? F-V leiden, PT G20210A? they are the 2 most common hereditary reasons for clots. Your diagnosis actually makes sense, of course I have not seen you but that affects your entire abdomen. What did Dr K say? and yes I would consult with a vascular surgeon. Especially if pain is increasing etc. I hope you get some answers real soon and feel better.
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Post by newyorkbitch on Feb 3, 2015 21:50:55 GMT -5
I have this very pregnant looking painful belly that bulges out especially when I am standing and when I am in a halfway sitting up position. I have always felt like this was a hernia and when I last saw my Dr. on Friday, he agreed and sent a referral to a surgeon to have it checked out. After I received these results from the CT scan I had yesterday, and his notes, I am confused. I asked if the scan showed a hernia and he just referred back to what he said on the scan results- Your pain is likely related to chronic changes from that clot in the veins. Will see whether the bariatric surgeon has an idea if that can be somehow solved. Alternativey, you may need to see a vascualr surgeon- What kind of clot looks like a 8 pound fetus? Anyone have an idea? I just don't believe that. The pain is worsening daily and I ended up buying a used electric hospital bed to sleep in because I just couldn't stand sleeping in a recliner anymore. I have an appointment with the surgeon this Thursday. If anyone has any imput I would appreciate it. What type of surgeon are you seeing Thursday? Have you been prescribed blood thinners? Are you on the pill? Are you eating and pooping regularly? |
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Post by Mariposa(Heather) on Feb 3, 2015 22:50:11 GMT -5
Thanks for your responses. I am negative for factor 5 but not sure about PT G20210A. 3 of my 5 sisters have had blood clotting issues so my hemo is keeping an eye on me. I have been on XARELTO since August. No birth control. I eat and poop regularly. I am seeing a bariatric surgeon who also does hernia repair, his name is Samer G. Mattar on Thursday. we made the appointment before the scan came back. The receptionist said that he does not do the DS because it is an outdated procedure. She tried to set up an appointment with his nutritionist. I told them I was not interested in seeing him for bariatric issues. I will go to Dr. K for that, if needed. I have not been keeping D r. k in the loop on this because I thought it was under control and there is not much he can do for me unless I go to LA. I attached the blood disorder results and my CT scan from august. Thank you both.     |
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Post by newyorkbitch on Feb 3, 2015 22:59:24 GMT -5
Who prescribed the blood thinner for you? Are you seeing a vascular surgeon already?
Obviously bring all those test results with you on Thursday.
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Post by bboop on Feb 3, 2015 23:25:03 GMT -5
I'm totally clueless but wanted to reach out and say, I hope you get this resolved soon. I also hope the docs can decide what's wrong and if surgery is needed again. I would definitely keep Dr. K in the loop.
I hope you feel better very soon. My thoughts are with you.
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Post by Simba on Feb 3, 2015 23:42:35 GMT -5
Mariposa,
You have attached the results of F-V leiden and JAK2, I find it hard to believe that you were not tested for PT G20210A, MTHFR and Lupus Inhibitor when you were testin for JAK2. But it appears your hem/onc is testing you for appropriate genetic markers. Your hem/onc can also request a consult with the hem/onc or pathologist of the coagulatoin dept. for an interp. of your entire coagulation workup and suggest other labwork for complete investigation and resolution of your hypercoagulation state. Keep on it so you have a root cause. Ask him the next time you see him. Having multiple family members with clotting issues is a risk factor, especially if they have had PE or DVT, being MO that also increases your risk, with surgery added on top of that also increases your risk. I would shoot Dr K an email FYI just to get his perspective and maybe he can guide you also. The DS is an outdated procedure since, they have no idea what they are talking about and think you mean jejunoileal bypass. I know you are doing everything you can, keep it on the front burner, not the back. Your consistent pain is troubling and hopefully it is resolved soon.
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Post by Mariposa(Heather) on Feb 3, 2015 23:46:33 GMT -5
My Hemo is the one who prescribed the blood thinner. I will make an appointment with a vascular surgeon ASAP.
I will definitely be in contact with Dr. K if I need surgery. I will bring all of my results to my appointment.
Thank you all.
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Post by Mariposa(Heather) on Feb 3, 2015 23:56:48 GMT -5
Simba, it is possible that I have been tested for other markers, I am going thru the tests looking for the ones that you mentioned.
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Post by Simba on Feb 4, 2015 6:16:57 GMT -5
Simba, it is possible that I have been tested for other markers, I am going thru the tests looking for the ones that you mentioned. you need a hypercoaguable screen performed especially since they have not figured out what the root cause is. With your sisters having the same issue you most likely have a genetic hypercoaguable state and not acquired. Having a thrombi in the mesenteric vein, in that locations also points to genetics as root cause. Looking at your avatar, I assume you are less than 50, that also points to genetics. Yes at a minimum you need the genetic testing I listed from my prior post, but also check to make sure you had: Protein C&S, AT-III, APCR and homocysteine and a coagulation interp from the hematologist or the pathologist of the coaguation department. Have your labwork performed at a reputable location, not a walk in private lab, preferably an acute fully functing hosptial that has a coagulation department and a transfusion services department. They can perform these assays on site and will have the hematologist or pathologist onsite for evaluation and your hematologist can call them, as the pathology interp can be difficult to understand. To get to the root cause it is a matter of the utmost importance, superior mesenteric venous thrombosis is a serious condition. Your pain is most likely due to the prior thrombi and new potential ones that can still be forming. Unexplained pain, especially what you are describing is your body's way of saying help me there is something wrong, in layman's terms. |
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Post by newyorkbitch on Feb 4, 2015 7:44:24 GMT -5
Simba, it is possible that I have been tested for other markers, I am going thru the tests looking for the ones that you mentioned. you need a hypercoaguable screen performed especially since they have not figured out what the root cause is. With your sisters having the same issue you most likely have a genetic hypercoaguable state and not acquired. Having a thrombi in the mesenteric vein, in that locations also points to genetics as root cause. Looking at your avatar, I assume you are less than 50, that also points to genetics. Yes at a minimum you need the genetic testing I listed from my prior post, but also check to make sure you had: Protein C&S, AT-III, APCR and homocysteine and a coagulation interp from the hematologist or the pathologist of the coaguation department. Have your labwork performed at a reputable location, not a walk in private lab, preferably an acute fully functing hosptial that has a coagulation department and a transfusion services department. They can perform these assays on site and will have the hematologist or pathologist onsite for evaluation and your hematologist can call them, as the pathology interp can be difficult to understand. To get to the root cause it is a matter of the utmost importance, superior mesenteric venous thrombosis is a serious condition. Your pain is most likely due to the prior thrombi and new potential ones that can still be forming. Unexplained pain, especially what you are describing is your body's way of saying help me there is something wrong, in layman's terms. Heather, you need to get assertive, today. Call your hematologist and go in now. Make sure all the tests described in these posts are discussed. This situation is urgent. A hernia, if you have one, is the least of your worries. |
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Post by Mariposa(Heather) on Feb 4, 2015 13:49:41 GMT -5
I'm on it. Thanks for the help.
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Post by west4thavenue on Feb 4, 2015 16:49:30 GMT -5
I have nothing to add other than all my best wishes. Take care and keep us posted, Heather!
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Post by Mariposa(Heather) on Feb 7, 2015 13:50:28 GMT -5
I met with the surgeon and found out I have rectus diastasis, separating of the abdominal wall. He wanted to refer me to a plastic surgeon to have it repaired along with having my panni removed since he feels that the weight of my panni is making it so uncomfortable. I told him that I want to wait on surgery until my weight has stabilized and until I have figured out my clotting issues. We set up a follow up appointment in 6 months. I will attach a couple of example pics of what this looks like. I am so glad to know what is going on at least with this part of my situation. Thanks for all of your support.   |
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Post by goodkel on Feb 7, 2015 15:54:12 GMT -5
Your weight may not stabilize for another year or so. Do you really want to be in pain for that long? Get the panni removed and you can go back for the full tuck after you have reached and held a stable weight for a year.
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Post by Mariposa(Heather) on Feb 7, 2015 23:16:23 GMT -5
Your weight may not stabilize for another year or so. Do you really want to be in pain for that long? Get the panni removed and you can go back for the full tuck after you have reached and held a stable weight for a year. I still need to figure out my clotting issues before I have another surgery. I looked up what people do about this non surgically and bought a special binder that pulls the muscles to the middle and holds them tightly. I also added support underware to hold my panni tight against me.Today is the first day I wore them and I was not in as much pain. I am truly just glad to know the cause of the pain, instead of imagining the worst. |
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Post by goodkel on Feb 10, 2015 2:12:33 GMT -5
Well hopefully it won't take too long to work out your clotting issues so you can have the surgery to remove your panni and ease this pain. I'm glad that the binder offers some relief.
Is your appointment with a hematologist already scheduled?
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Post by Mariposa(Heather) on Feb 10, 2015 23:46:51 GMT -5
Yes, I have an appointment scheduled with my hemotologist. I am looking forward to getting all of these issues resolved as soon as possible!
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Post by goodkel on Feb 11, 2015 0:50:31 GMT -5
Please keep us updated. We worry.  |
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Post by Joanne on Feb 18, 2015 14:24:16 GMT -5
I just wanted to add that I have many of those same factors Simba mentioned.
When I had my DS consult, I mentioned to my surgeon that I had two aunts and a mom that all had PE's after different types of surgeries. He sent me to a hematologist who did a hypercoaguable profile. I didn't have Factor V which is the most common, but I did have Factor 8, Lupus anticoagulant, MTHFR defect, elevated homocysteine level, protein S...there were about 5 or 6 things that made me what the hematologist called a ticking blood clot time bomb.
She also assured me that one of my biggest clot risks was being MO, so we went ahead with the surgery. They monitored me closely and kept me inpatient a few extra days. They did an ultrasound of my legs, and also kept me in a monitored bed to keep check on my vitals longer than usual. I was also sent home with Lovenox. I made sure to stay hydrated and to move my legs in bed, and walk as much as I could.
After getting through that, years later I had plastics and a lower body lift. The plastic surgeon used extra caution again, but of course it was not without added risk.
I hope you get to the bottom of these issues and have a plan - definitely not something you want to play around with.
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