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Daughter's Esophagram Report - HELP ME UNDERSTAND!
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Daughter's Esophagram Report - HELP ME UNDERSTAND!

Our 10-year old daughter had an Esophagram done last week.  She has been complaining of difficulty swallowing (liquid and food) as well as a stomach ache.  Our daughter has never vomited but felt as though she was going to.  The report said there appears to be a lesion right laterally proximal dorsal esophagus at the level of the sternal notch.  It is smooth in multiple projections and located posteriorly.  It measures 1.5 cm.  This may represent submucosal leiomyoma.  WHAT COULD THIS MEAN?  I have never gone through something like this before.  We are very nervous.  Our daughter has a follow-up appointment on 12/10 so the waiting is difficult and I'm wondering if she should be seen sooner.  Any help would be appreciated!
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It  means a tumor which is easily removed thru surgery, and less than 2% are found to be malignant.
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I wonder how she got this?  I also wonder why she's having stomach issues too?  Could the tumor ever come back and be malignant?  I know that's not something you can predict, but talking things out with someone helps.  I have not received one phone call from the doctor since her results.  It's frustrating.  I appreciate you!
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It is just a randon occurrence, and it may come back as only a cyst.  It's extremely rare that it would be cancerous, they usually aren't.  They can also cause regurgitation.  This is usually only found during testing for something else, so you are very fortunate to have found it early.  They aren't even sure that this is what it is,  and I would be on the phone to her doctor every day!  The good news is that I think if it were a serious issue, you would have heard by now.  Be the perverbial "squeaky wheel" and call the doctor, don't wait for him.
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I don't even know you, but truly appreciate you!  May I ask...how do you know so much?  I need someone to talk to and get input.  My husband just says "everything will be fine" and prefers to leave it at that.  Unfortunately, I worry.  You're right, they don't even know if it's a tumor but I wish the doctor would call to give me updates.  You're also right that if it were serious, the doctor should have told us.  I guess not scheudling her appointment until 12/10 must be a good sign OR I have a terrible doctor.  I did see some unflattering reviews of her, which makes me nervous.  I only have communication with the Nurse and she told me the doctor didn't want me to worry.  I will continue to be a pest because this is my daughter!  Thank you!!!!
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I learned the hard way. I lost a son to an heriditary disease, and then my grandson just 11 months ago.  I learned how negligent a lot of doctors are.  It's a long story, very sad and just heart wrenching.  I cannot express strongly enough to educate yourself on medical issues with your loved ones.  I trusted the doctors......I shouldn't have.  There are good and bad ones.ALWAYS get a second opinion, can't hurt, may help.  Be a pest, YOU have to be your daughter's advocate. I come on the blogs as a way of dealing with my losses, feeling if I can help just one person, their deaths will not have been in vain.
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I'm so sorry about your losses!  May I ask what heriditary disease it was?  Any suggestions you can offer regarding the best way to educate myself is greatly appreciated.  Thankfully I never had any health issues as a child nor did my children until this happened, so I have no idea where to start.  I feel very overwhelmed and of course my initial reaction is to assume the worst.  I talked to the nurse today and the doctor is off all next week.  According to the nurse, the doctor does not believe her swallowing issues have anything to do with her constant stomach aches.  It so hard to know whether her stomach issues are caused by anxiety.  How could I know that for sure?  My daughter did admit her stomach hurts when she's nervous about a friend sleeping over at our house, away from us, etc.  I will pray for you and your family...mine too :)
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You can google symptoms, tests, everything.  Every hospital has medical resources, and I highly recommend the Mayo Clinic, Cleveland Clinic, and MD Anderson.  The disease in our family is FAP - Familial Adenomatous Polyposis.  It was first diagnosed with my brother-in-law when he died from colon cancer at 38.  Then my husband was diagnosed and died at 32, colon cancer.  This is when I was told to start getting my children yearly colonoscopies to detect the first symptom (known back then) which is thousands of polyps carpeting the colon. They were too young to have to endure these tests and know what they may be facing. I lived in constant fear and worry.  Both my sons were diagnosed at 12 and 16 and had their colons removed.  My youngest son is almost 39, healthy, and living a very fulfilling life.  But no children due to the chance of him passing this on.  My oldest son did not do as well, and suffered many setbacks.  He had a few years of good health, married and had 2 little boys, but as soon as the second son was born my son became ill again.  To make a very long story short, he developed a Desmoid Tumor which took him from us at 31.  His boys were 6 and 9.  They were being scoped yearly and just one year after losing their dad, my oldest grandson was diagnosed at 10.  By the time he was 16 he had endured 38 surgeries, then a 5 organ transplant, but we lost him on Dec. 1, 2008 at 18.  This disease has many facets, and the Desmoid Tumors although rare, are hideous.  My daughter is 37 and has not inherited the mutation, and has a 2 1/2 year old little boy.  But for now she remains vigilant with herself and him, because there is always that tiny little chance.   We have 7 geneticists across the country we work with, numerous hospitals and doctors.  I am doing all I can to help this grandson and my 16 year old grandson to never know the horrors of this disease.  Thank you for the prayers, and I have been keeping your daughter and you in mine.  Take care....
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How do you do it?  You must have a very strong faith?!?  I cannot imagine what your family has gone through.  Wow!  I asked what disease because Huntingtons Disease runs in my side of the family.  My grandmother passed away from it and my aunt (who is younger than my mom) also has it.  I don't see any signs in my mom and she refused to be tested.  I do wonder from time to time if things I see in my mom are the disease or just "her".  I would like to be tested, but I need to locate a genetic doctor.  It's hard to think of myself when I'm so busy worrying about my children.  I will definitely keep your family in my prayers, absolutely!  Please take care.
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Faith...very shaky.  But my children's are strong, even the grandkids, and I'm very happy about that.  My faith got me thru it all until I lost my son.  To watch him suffer so horribly for years, fighting for each day, only to die was very hard for me.  My oldest grandson looked and acted just like my son.  I then had to watch him endure even more suffering in his young life than his father, only to lose.  I don't understand why children have to suffer, never will. I think losing my grandson made me realize that with him I felt I had a bit of my son left, and with him went this and the sweetest young man. You do need to get a geneticist involved for yourself and your daughter.  They can tell you more about Huntington's than any doctor.
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This carries the same hereditary factors as our FAP.

What is Huntington's Disease?
Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. Whether one child inherits the gene has no bearing on whether others will or will not inherit the gene. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing. The rate of disease progression and the age of onset vary from person to person. A genetic test, coupled with a complete medical history and neurological and laboratory tests, helps physicians diagnose HD. Presymptomic testing is available for individuals who are at risk for carrying the HD gene. In 1 to 3 percent of individuals with HD, no family history of HD can be found.

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There is gene testing for Huntington's, has your daughter been tested?  There are actually two types, one that begins as you age, and one that is found in children and adolescents.  Don't want to scare you, but you and your daughter need to be tested, and meet with a geneticist.  Our disease has the same 50-50 chance of being passed on to the children of an affected parent.  You truly need to know if you have this for both of you.  Below are symptoms first seen in children.

In children:

Rigidity
Slow movements
Tremor
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You aren't scaring me.  I've been scared for years!  I worry that I've passed this along to all three of my children.  My mom refuses to be tested and doesn't want to know.  I will research geneticist and make an appointment.  I don't see those symptoms in any of my children, but you never know.  I feel so overwhelmed and don't know where to start.  I have my own health issues that I've been dealing with recently but now am trying to focus on my daughter.  I don't know where to start and just feel overwhelmed.  Thanks!
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I know how you feel, and have dealt with all this for 30 years now.  Just take it in baby steps.  Look up a geneticist in your area, and meet with him/her.  They will guide you from there.  Let me know if I can help.  With FAP it never skips a generation, and it hasn't thus far.  I will see what I can find out about this with Huntingtons, because if it''s not the same then there is a good chance you don't have it.  I always hated the not knowing, and learning new things about the disease.  I guess I wanted to bury my head in the sand and pretend it didn't exist.  But knowing and knowledge is our best weapon against these things.  Take care....
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I found this to be interesting.

How Does a Person Decide Whether to be Tested?

The anxiety that comes from living with a 50 percent risk for HD can be overwhelming. How does a young person make important choices about long-term education, marriage, and children? How do older parents of adult children cope with their fears about children and grandchildren? How do people come to terms with the ambiguity and uncertainty of living at risk?

Some individuals choose to undergo the test out of a desire for greater certainty about their genetic status. They believe the test will enable them to make more informed decisions about the future. Others choose not to take the test. They are able to make peace with the uncertainty of being at risk, preferring to forego the emotional consequences of a positive result, as well as possible losses of insurance and employment. There is no right or wrong decision, as each choice is highly individual. The guidelines for genetic testing for HD, discussed in the previous section, were developed to help people with this life-changing choice.

Whatever the results of genetic testing, the at-risk individual and family members can expect powerful and complex emotional responses. The health and happiness of spouses, brothers and sisters, children, parents, and grandparents are affected by a positive test result, as are an individual's friends, work associates, neighbors, and others. Because receiving test results may prove to be devastating, testing guidelines call for continued counseling even after the test is complete and the results are known.

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Hello!  I received GREAT news today.  Another Radiologist reviewed my daughter's recent test and said it's a completely normal result.  There is no compression or lesion.  I'm happy, but still wondering why the trouble swallowing.  I wonder what else could it be?
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How can radiologist read things incorrectly? I just really wonder at times. It is great your daughters is normal.
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