Portal vein

Posted by Lisa @techi, Sep 21, 2017

I want to know if anyone had shunt put on their veins in the Liver? I had a TIP procedure and the radiologist said l had 5 extra veins. I went to the Mayo clinic and the doctor was concerned about one of the veins and then he told me they didn’t do the procedure correctly. So l am going back to have another procedure but what l was reading is the doctor should see you often to make sure everything is alright with the stunts. My gastroenterologist retired and you would think l would be referred to another so after l came back to the Mayo Clinic l had to tell my doctor all the doctors l need tosee. I wonder who should get the pay. So now he decid. to send me to a liver clinic instead of a cardiologist should l be concerned? I haven’t told him about going to the Mayo Clinic until l get all the results back because so far all that they said was my diagnoses wasn’t. Even the neurologist l saw was surprised. That was God all the way. So l just wanted to know if their is shuts not put in correctly what do they do? The radiologist l had said l don’t have cirrhosis but the symptoms of cirrhosis. When l went to the Mayo Clinic they said the same. When l had my brain injury they said it was autoimmune encephalitis. I really don’t know what l have and l really think no one else does. So l guess l am a problem they can’t figure out only the Lord knows and he showing man you need me.

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@techi

I don’t know if l am in the right group. But l was diagnosed with elevate ammonia. It’s a kind of liver disease and my gastenerologist did a biopsy to see if l had cirrhosis of the liver. He told me no but the symptoms of cirrhosis well that sounds good. So with this extra vein l had to.have a procedure to put a shunt on it. When l had the procedure they found put l had five extra veins so now l have 5 stunts. I went to the Mayo clinic and the vascular doctor said one of the shunt had expanded and if it’s to wide if you bleed then it can go to your heart and then travel to your brain and that’s life threatening. So he said they didn’t do the procedure correctly and he would have to speak to the team to see what to do. If it’s not two wide we can leave it for now or if it’s to wide then we will have to do another procedure. He asked me was my doctor checking on the shunt because they have to, to make sure it doesn’t get to wide or to tight. He told me to make sure l keep my appointments because this is very important. Well I finding out that in three visits when l had to come to the Mayo Clinic l know more then l knew for over 20yrs. Very sad, but l am very bloated my legs swell when l walk to much and it’s even hard to walk because my foot hurts. But l don’t know if it from the surgery l had or not. And l been having 2 kidney stones that won’t pass since 2014. I thought doctor were suppose to do something if it doesn’t pass. And my doctor is so clueless. The only reason l still have him is l needed him to refer me to some doctors. And l wanted a certain neurologist and he send the referral and they sent me back to the one he sent me to before. I asked them why and they said doctors in the same field in the same office don’t want to take someone else’s patient. So you can’t go to who you want to. So he referred me to the liver clinic where they also do transplants instead of the gastro clinic l use to go to. So l don’t know if he thinks it could be something else because l didn t tell him l went to the Mayo Clinic or them about him because l wanted to find out about all the diagnoses l was told. And God blessed the neurologist at the Mayo Clinic said l was misdiagnosed. Well that’s nice to know. And another thing was l called my pharmacy about refilling my medicine for reflux which l don’t know why 8pm talking. Probably because my pressure was high. I accidentally called the corporate office and found out the medicine had been recalled. Isn’t that nice. They said call your local pharmacy and get the information from them. They never told me the name. I asked the pharmacy twice and both times they told me their was no new recalls. So they refilled the medicine and l didn’t find out until l looked.on tv and heard accidentally or may be a blessing. I liked blessing, and they refilled my medicine 8 days ago and l was told by corporate their was a recall and they didn’t tell me. So l been talking the meds up until yesterday so now l won’t take it anymore but instead of telling the pharmacy l will be telling a lawyer. Anyone knows a good one? And l don’t know if this is what been causing all my problems because l never had liver problems. When l asked my gastenerologist how did l get this problems with my liver he said it the meds you been taking because you don’t have hepatitis A,B or C and you don’t have a family history and l was only allergic to codeine and now since 2014 l have along list and the doctors said l can’t give you practically no meds. And they are scared to give me anything because l went into cardiac aresset when l was given a med l was allergic to
So now l don’t know if my bloating and stomach pain can be from my liver. And l tried to look on line and it’s very rare and l see websites about dogs having it. And l am definitely not part of the dog family. So if anyone know something about this, would you please tell me. I know your not a doctor but even my general practice doctor doesn’t know anything and l guess some research and some don’t. They just want the money and not the patient

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Well so far nothing has gone to my brain. In 1997 l was told l had viral encephalitis. Then when l went to the Mayo Clinic my neurologist Dr McEvoy you might know her. She told me in 2014 in my chart it said l had autoimmune encephalitis, encephalopathy also and so many other diagnoses. She said my neurologist in 2014 didn’t read my chart he just assumed l had conversion disorder. So after l went through all these test and doctor which l am very thankful she said l was misdiagnosed So they think it was my ammonia levels that made me fall out, hallucinating, and cognitive decline, also depression. So when l came back home l went to my gp and he doesn’t know l went to the Mayo Clinic the last thing we discussed l was going to John Hopkins and l probably would have because l heard about a new encephalitis clinic there in the US. But the Lord had another road for me to go because my appointment was setup right away. So when l told h l needed a new gasterentogist he sent me to a liver clinic that does transplants so l don’t know what he’s doing. So l really can’t wait to get back to Minnesota. My internal medicine doctor always said l want you to come here. So l don’t know if l have a fatty liver. No one has said anything. They wanted me to come back this month but when we said November nobody seem to think that would matter. So l pray l don’t have to have a transplant but if that’s what l have to do then l will. I’m trying to lose weight and keep my pressure and ammonia level down. Which l can’t tell because l am not getting it tested regularly. The last time l had my levels checked was in Aug so l guess that’s alright. I don’t know how often that’s suppose to be read. And also the neurologist said my ammonia level may fluctuate. And l think that’s very true. It’s so weird you can walk alright for awhile and then you may get wobbly or just fall. So then you become a housebound person. So.l am blessed l can get out a few times a week but it always have to be with someone. But even though l really can’t complain l am blessed to still be here.

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I’ve been swelling lately in my stomach, arms, legs and other places. I was told by the Mayo vascular doctor that my stents surgery wasn’t done probably and they were concerned about portal vein to the hepatic veins. I don’t know if this is cause of another allergic reaction to medicine or should l be concerned about bleeding in the veins or stomach. Has anyone experienced this before? I am still having problems with my doctors and pharmacy not listening to me when l tell them about medicine l am allergic too. Either they don’t document it or l have been given them and thank God l am aware of it before l take it. And then they say l have conversion disorder or depressed. I think they have the problem. Thank you for the Mayo clinic.

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@contentandwell

@techi I asked my husband to journal my HE episodes and he did but he would often wait and then his memory would be vague. Despite my condition I often remembered them more clearly than he did, except when I was at the worst of the episode, which I have little or no recollection of. I have no recollection of getting to the hospital during a bad one. I hate it when he accompanies me to the doctor because he tries to control me and stop me from asking questions, or making comments. Then he will ask questions that have already been answered. He insists on going though.
JK

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Yes l went to a neurologist who l asked my doctor not to send me to but l want to get my release to drive and l told him l went to the Mayo clinic and they told me my memory was fine. I told him it was my liver and l was told l had autoimmune encephalitis and they said they couldn’t find anything currently going on, which l looked up about the symptoms and how doctors say it’s a mental disease and all your test can come back normal and you still can have it. The neurologist at the Mayo Clinic said l.had the residual of it. She also said l could habe had an allergy to meds. Which is 100% true because my previous gasterentogist said l got the hyperammonia because of medications. So l continue to tell him l could understand were my general practice doctor would want me to see him to make sure l can get the release to drive. He looked up my records and said he gave you the release since Aug well nobody called me to pick it up because somebody would have to go get it since l can’t drive. So l continue to tell him about the hyperammonia and l asked him if this could have been why l was passing out and having seizure like symptoms
He told me you had bipolar and schizophrenia. I told him l was cleared of that at the Mayo Clinic they just thought l might not have known how to deal with all that was going on. I also to him the vascular medicine doctor said the stents that was placed wasn’t done correctly and he said one isn’t flowing like it suppose too. So l just can’t wait to see the gastroenterologist at the Mayo Clinic because nobody wants to say they made a mistake. I also told him when l went to the pharmacy twice they gave me meds l was allergic too. And l told my husband what he said and he said l should have went in with you. He told me when l fell l hallucinate and what l said my husband said what he said was true. So l call my general practice doctor office to get my release and nobody knows where it is and he showed me where to very he signed onvery he the computer. I know l can’t hold that against them but it seems like l can’t go to anyone in this state for help because they are all covering up there mistakes. And l am trying to get off these meds and l really don’t know how so l wanted to know who l can ask if l have to go out of state?

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@rosemarya

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

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Rosemary yesterday l went to the neurologist l didn’t want to go to this one. My doctor was suppose to refer to another one l perfect. They called me to setup my appointment and they said l was going to the one l didn’t want to go to. They told me doctors don’t like taking another doctors patient. Well anyway l go to him and he asked me what l wanted to see him for. I told him l want a release to go back to driving but l had to come to him because my doctor didn’t fill out my release form and l can understand he wants me cleared by a neurologist because he is filling put the release. And l also wanted to know if because l was falling due to hyperammonia and l was told l had autoimmune encephalitis disease and l possibly had the residual from all my problems. He looked on my chart and told me you have bipolar and schizophrenia. I told him l was cleared of that from the Mayo clinic. I didn’t want to say where l went for a second opinion but l wanted to also be trueful. He asked me when l went and what test they did. I didn’t get into that with him. Then he looked up my chart and was telling me neurologist and psychiatrist l saw. I couldn’t remember there names because l was unconscious in the hospital at the time and l told him. I was telling him about the conversion they said l had and can it be from my liver issues. He told me when you.fell in January they checked it and it was normal. I didn’t tell him the internal medicine doctor at the Mayo Clinic said in 2015 before the shunt s were put in he wanted me to have an ultrasound of my stomach because when we were on our way home the internal medicine doctor wanted me to have it done. So l did get it done and then that’s when the vascular doctor wants me to come back. I asked my general practice doctor to refer me to a gasterentogist since mines retired. So he did and then l got a call from the gasterentogist clinic where my previous gasterentogist worked. I know l am stressed and maybe l am have anxiety but it because of all the lies. Every time l look at my records they have different diagnosis on them and dates l have seen other doctors and my allergy list. I have gone through this with every doctor and when my husband goes with me he also shows them the list. I.am very careful of medicines l take. I will look it up and l also will ask the pharmacy. So l really don’t know when they say one of your shunt is open so that’s why the vascular doctor wanted me to have an ultrasound of my stomach to see how wide and he said he didn’t know if that’s why l am having all these problems. Did you have shunt s and where they also not holding your extra veins close? And l want to know if you have regular visits with your gasterentogist? Because the internal medicine doctor was surprised know one has seen my since 2016 and that when my other gasterentogist retired. And when l tell them l never had anything wrong with my liver because when l was on antidepressants l had to get test to make sure l didn’t. My other gasterentogist when l asked how l have this hyperammonia he told me it was from the meds. When all this began l only was allergic to codeine now it’s about 15 meds l am allergic too. And so this neurologist showed me when my doctor filled put my release form he said in August and the time he had my license suspended is when he told me l couldn’t work or drive. And at the Mayo Clinic the doctor l know who knows about encephalitis is Dr Britton but l don’t know if you have seen one neurologist can you change to another or if one team is not sure do they consult with different doctors in that field? But they did put on my chart at the Mayo Clinic it could have been allergic reaction. And you don’t know what meds you are allergic to because they all say the same reactions. So can you tell me what you had to do? Thank you.

REPLY
@rosemarya

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

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@techy, Hi Lisa. I feel bad that you are still in the midst of such confusion and stress with your medical issues. As an outsider, as a patient myself, I think you need to work to get all your doctors “on the same page” so that there is a consistency in your overall care. Sounds like you have too many opinions here that are not connecting. If I were you, I would make the medical release between doctors happen and these days it should be relatively easy with technology everywhere. You might be able to have the release forms mailed to you so that you can sign and return. That way you do not need to travel to the office (sigh of relief).

From my own experience, I also like to read my doctor reports. I have to admit that I do not understand most of the language at all. One thing that I have learned is that office visits and reports are a accurate picture. of what is happening at that particular time. For example if I looked at my reports from a year ago – they do not reflect what is going on today. Does that make sense? So I would encourage you to not get stressed over some of the medical jargon.

As far as the two doctors in an office thing – Yes, I know what you mean. In some offices, you see a variety of doctors; in others, you are assigned one. I don’t know why this is the way it is. It can be uncomfortable and awkward at times.

I am sorry to confuse you about stents. I included that only to point out that sometimes they don’t do the job they were intended to do. I think that is the issue that was being discussed at that time.
No, I am not familiar with neurology department.

Lisa, I hope this has been helpful.
Rosemary

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@rosemarya

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

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Rosemary l understand but what l don’t understand is that when you see a doctor in the same hospital and there computers are connected some times it takes awhile for them to acess the communications for instance when you go to the er in the medical connection. Then when l had my ankle surgery my doctor told me it would take 6months before he gets it. So you either have to go and get it and l can’t drive so l have to wait until my husband is off or l can have it mailed to me and either send to the doctors office by mail
And my general practice doctor his office they don’t always get in my chart. So l always have to make sure he knows what doctors l have seen and make sure my allergy list is always up to date. I have had several times they didn’t have all my allergies. Even just this week l saw before he had the correct date when l had my knee surgery and that was 4yrs ago and now they have it one year earlier. I’ve also seen that he said in 2012 is when l had my liver disease at first they had the right year now it’s 2yrs before. And l want to change my doctors but because l went to the Mayo l wanted some of the diagnoses that were not true changed and also l wanted to get my release to drive. Also if he says it takes 6months they can have the records faxed. It only takes minutes. Now l have l am being followed up with a gasterentogist after a year and l have had about 5 neurologist some retired, l don’t like or l don’t believe there diagnoses. And l had one at my daughter’ job that would talk to her and not me and l feel if l am the patient you should talk to me even if l passed out but them become conscious again. That to me is so rude and not professional. I also wanted to know how to wean myself off my medicine because my general practice doctor really can wean off the medicine he prescribed me and any other doctor who is a of different professions l have to go to them. And when l asked this neurologist he told me l don’t know your history even though l saw him before and he can read my chart on the computer and he didn’t even give me my discharge papers and this has happened twice before and l had to go to medical records to get it. I am just so discusted with the headache in this state. Our medical rates low and l usually like to go to doctors that has their degree from this state and that isn’t how you should have to select your doctors. So l know you are right completely. And when the doctor at the Mayo clinic say they didn’t do your procedure correctly and you have to go to another state is hard to think that’s what happened. So now l have to come the 4th time to the Mayo clinic which l am so blessed he saw that. And l saw that at the Mayo Clinic they ask questions and doctors work together. Especially when one doctor might not seen a symptom before or illness. And l know doctors aren’t God they are always learning and what one patients illness or symptoms are not the same so you must listen to the patients. Some people go to doctors just for drugs but some come to get a diagnosis and know what to do with their health so they can get better. That why l always have to listen to other preachers, music and alway remember what Job went through and how he came out. So l guess this is what l have to go through so l can help someone else to let them know they can make it. You have always give me good advice. Thank you. I will let you know what happens when l go to gasterentogist at the Mayo clinic and also in my home state.

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@rosemarya

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

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@techy – Lisa, I do not understand how all of the medical computers work or how the systems operate, I agree that for us lay people it is confusing. Sometimes my husband tells me, “Don’t even try to figure it out.”
I hope that you get some things worked out soon. And start to feel better.
Rosemary

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@rosemarya

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

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Rosemary l wanted to know when you first had problems with your liver did you get dizzy and past out out. Because they were saying sometimes my ammonia,levels can be high and cause me to fall and hallucinate and don’t remember anything. The last time l fell l always tell th e doctors l fell flat on my face and my husband and the doctors say I was sitting on the floor. I don’t understand that , isn’t that weird?

REPLY
@rosemarya

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

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@techy, I did not have any of those symptoms. I am sorry that I cannot provide you with any clues that might help you to understand.
I hope that you feel better about all of this soon.
Rosemary

REPLY
@rosemarya

@techi, I am sorry to learn of your complicated, and confusing medical history. I have a liver/kidney transplant, and some of the items that you have mentioned sound familiar to me-but that is all. Like you, I am a patient. I applaud you for learning about your situation and advocating for yourself.

I can understand your fear and genuine concern about all of this. I think that it is not too unusual for some doctors not to communicate. I am glad that you were able to be seen at Mayo Clinic. I get the impression that you are a distance from Mayo, am I right? If so, Are your current doctors going to accept the findings from Mayo? What steps are being taken to decide if the procedure needs to be repeated?
Rosemary

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Thank you Rosemary

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Today was a good day. I went to church and my husband had the CD In the car and the song was playing the encouragement a nd Thanks to God because if it wasn’t for him l wouldnt be here. The song is # Can’t Give Up Now by Mary Mary so if anyone is going through something right now and need a little lift up and to let all the things you went through or still go through right now. It will let you know you can make it. This week l might my new gasterontergist in my state and l have 2 l was given so l will decide which one l like and agrees with the Mayo Clinic and keep watch of what’s going on because l believe if they did the followup l wouldn’t have to go and have another procedure done but hopefully it will be done correctly.

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I had a TIP 2yrs ago and when looking was the Mayo Clinic like was told it was done correctly. So let am supposed to come back to the Mayo Clinic and have it done a second time. I asked my general practice doctor to refer me to a liver doctor which leads really feel he’s a great doctor. He told me he would do the procedure himself since he seems it wasn’t done correctly. I really don’t know how long feel about that since it was done at the same hospital and let only had one appointment with him. So let really don’t know what to do? Then also l have been telling so many doctors office a symptoms of not being able to walk. I went with my husband to get a sandwich for lunch. He looked at me and ask me if left was alright. I said yes. Then let tried to eat but let couldn’t well that something usual everyone does that. When we got home last tried to get out the car, but let couldn’t. I had to ask him to help me. I couldn’t stand up and let was walking side to side. Then he got me to the house and took me to the bedroom. I asked him to get me a package that was delivered to the house. I tried to open it and let couldn’t my hands were shaking and let couldn’t pick it up to bring it closers so long could try again. I failed so long had him bring it closers and let used my teeth to open it up. So let did but let couldn’t get the items out. So let just gave up. Then let thought leaders better go to sleep so long tried to pickup my covers and my hands were shaking so much l just said forget it. I went to sleep and then when looking woke up everything was normal again. This has happened before several times but it hasn’t happened for months. I tell the doctors and they run test and everything comes back normal. Has this ever happened to anybody? Please let me know nobody else knows.

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