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Trying to Get A Hernia Diagnosis
My daughter, college student aged 21, is in terrible pain and was just diagnosed at Thomas Jefferson University Hospital in Philadelphia via Musculoskeletal Ultrasound by an Interventional Radiologist as having bilateral inguinal hernias. The exact report states ‘In the maximum area of tenderness and bulging at the level of the inguinal ligament is a fat-containing left inguinal hernia lateral to the inferior epigastric vessels which is present during standing and Valsalva maneuvers. The hernia reduces spontaneously in the supine position and with relief of Valsalva pressure and there are no loops of bowel within the hernia. Similarly, but slightly smaller in size, is a right inguinal hernia lateral to the interior epigastric vessels that is present during Valsalva maneuvers and standing and spontaneously reduces in the supine position and with release of Valsalva pressure.”
I figured I would have the surgery closer to home and the general surgeon, who came highly recommended, ordered a CT with oral and IV Contrast to confirm the diagnosis. He called with the negative findings saying there were no hernias and he would not do the surgery. He additionally stated that we shouldn’t permit any surgeon to operate on her and said he would recommend a Pain Management Specialist for her.
This surgeon is actually the 2nd General Surgeon in the past year that told us that ordered and looked at a CT and said there is nothing wrong and my daughter should either take pain meds or go to see a Pain Management Specialist.I followed with a phone call to the Radiologist that performed the Ultra sound at the University Hospital again and she stated with complete certainty that my daughter has the hernias and that of course they wouldn’t show on a CT where she was laying down and having no abdominal pressure…that was in the report as stated above. Why would the surgeon trust the CT that is taken in a supine position when the results clearly stated the hernia wouldn’t appear?
In the meantime, my daughter is still soooo upset. If one more Dr referred her to a pain management specialist…..we finally have the definitive diagnosis and the surgeon doubts it again.
I totally trust the Radiologist and thank her for her definitive diagnosis. We are now following with and have an appointment with a General Surgeon back at Jefferson …which I should have done to begin with….of course I am kicking myself and feel guilty.
I have learned so much from reading Dr Towfigh’s information and articles that I know I can’t stop advocating for my daughter. I believe we are on the right track now. I just wish Tuesday’s appointment was here already.
The upset and frustration for the suffering patient AND the supporting family is enormous. I hope others can learn from my experience and I hope to learn from others. When you know you are doing the right thing, dont’t doubt yourself and don’t stop searching for the right answers.
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38 Replies
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1 minute ago
This is sounding pretty familiar. My 16 year old daughter suddenly started having pain in her lower right abdomen area. Since it persisted a week, we went to the Dr. She ordered an ultrasound which showed multiple ovarian cysts. Gyn put her on the pill and said come back in 3 months. 2 months later we had another ultrasound. This showed the cysts were gone, but the pain was still constant. It was not related to her period or to eating or not eating. Exercise and activity intensified it. Next had a CT scan. They couldn’t get the dye injected but she did drink some of the other imaging liquid. Nothing found although both US and CT scan report say a “large amount of stool” and that she’s probably constipated. She isn’t. The CT scan did mention that she might have a small Meckel’s diverticulum. Next did the nuclear med scan for gastric tissue. Negative. Pain now constant and severe. Last step: we just had a diagnostic laparoscopy. Results: everything looks normal!! Didn’t even see the diverticulum. My poor girl just cried when she came out of surgery and was told. Then I found this site. It seems to fit but wouldn’t the surgeon have seen the hernia? Please note that her brother had an inguinal hernia repaired at Sholdice when he was 18. Any help would be greatly appreciated!
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Trying to Get A Hernia Diagnosis
My daughter is now about 2 1/2 months umbilical hernia repair. While on the operating table, the surgeon additionally cleaned up some adhesions and scar tissue from her previous appendectomy. The surgeon stated that her abdominal fascia is barely there, it is virtually see-through. He would not be surprised if she had more hernias in the future. Her days of lifting anything are over, he said, but she can once again use the treadmill at the gym. We additionally went to a rheumatologist to rule out connective tissue diseases and disorders….which she did rule out. (Thank Goodness) The Rheumatologist was excellent regarding his field of expertise, but I hate to say that he was not up to date in his information regarding hernias in women and the pain that they can cause…but I am, which was just as important, I guess.
Thanks again to the information provided through this website, I was confident that my daughter’s pain was due to the hernia and not any other causes.
Once again, post-surgically, my daughter is painfree and has resumed a normal existence that includes the treadmill but no lifting.
I hope this is the last hernia she will have to deal with…..if not, we will deal with it as it comes. -
Are my symptoms from a hernia?
Is she better now?
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Trying to Get A Hernia Diagnosis
Well, once again, I am thrilled to be a part of this blog…although I wish I didn’t need it. In the past few weeks since my daughter’s Dr said yes to to a hernia and yet her last Ultrasound was negative, her pain has been up and down. She tried to resume to her normal activities including running and hiking. Three days ago, she again began with excruciating pain that wouldn’t go away. Pain high enough that she considered going to the ER. We also noticed that her belly button area actually looked more flat than round…something new. Her local Doctor ordered a Stat CT Scan this afternoon and the results came in as Positive for an Umbilical Hernia. Do you believe that I am correct in assuming that the weakness was there when this most recent event happened a few weeks ago and her recent activity finally broke it open all the way?
This time, the physical exam with the correct radiology…CT….found the hernia.
I hate hate hate that my daughter once again has to have surgery but, on the other hand, I am happy that we have a diagnosis and she will again return to living pain free.
Thank you again for the support you provide.
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Trying to Get A Hernia Diagnosis
As we have reported before, a negative ultrasound is not helpful if the clinical suspicion is high for a hernia. That is, there is a high false negative rate with ultrasounds. If there is a clinical suspicion, then further imaging (CT with Valsalva without contrast) may be warranted. That said, for umbilical hernia, a physical exam is all that is usually needed. And if she has discomfort and it affects her daily activities, that warrants intervention.
Before any procedure, I would address the straining with bowel movement. Why is she straining? That is not normal and poses a high risk for hernia development and recurrence after any repair. All straining must be cured prior to any hernia repair. If it is a constipation issue, I recommend to my patients any combination of milk of magnesia, mineral oil, and/or Miralax. -
Trying to Get A Hernia Diagnosis
I’m confused now. We saw the surgeon yesterday. She said she definitely felt something but wasn’t sure if surgery was warranted. We were able to get a dynamic ultrasound by an Interventional Radiologist (the same one we have used in the past). Her finding was that there is no signs of a hernia.
So now, I have the Internist who said Hernia, the Surgeon who said something is there but not sure if surgery is necessary and the US that said no Hernia.
In the meantime, my daughter is not in pain but definitely has so me discomfort. Additionally, straining to make a bowel movement is difficult.What is your opinion in terms of next steps I should pursue or is it a wait and see if things become worse. I hate having her uncomfortable and also afraid of what will happen next.
Thank you in advance.
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Trying to Get A Hernia Diagnosis
1) no rush to get the umbilical (belly button) hernia repair done. It is not an emergent or even urgent problem unless she has problems with pain, vomiting, the hernia content getting stuck.
2) the only connection between her umbilical hernia and inguinal hernias is she may have a genetic predisposition toward developing hernias. Otherwise tone does not cause the other. Also, perhaps she has other risk factors for developing hernias, such as obesity, nicotine use, chronic constipation, cough, straining, repetitive lifting of heavy objects.
3) PT does not cause hernias.
4) mixed connective tissue disorders are among the genetic family of diseases which may predispose patients to hernias. Commonly collagen vascular disorders are associated with hernias. These include Ehlers Danlos syndrome, Marfan’s syndrome. Lupus, scleroderma, and rheumatoid arthritis are less associated with hernia, but there is a weak link.Thank you for your positive comments about this Forum. Please let there know about it.
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Trying to Get A Hernia Diagnosis
My daughter is about 14 months post successful bilateral inguinal hernia laparoscopic surgery. She has been doing Physical Therapy to strengthen her core and break up scar tissue from previous pelvic/abdominal injury as listed earlier in this blog.
She recently started becoming aware of discomfort in the belly button area and could feel a bulge…I could definitely feel it too. She went to her Internist who confirmed by physical exam that she indeed has an umbilical hernia. She now has an appointment with the same surgeon that did her previous surgery…the earliest availability is about 2 weeks. She is fully aware to go to the ER if there is concern of strangulation.
My questions are:
1) Do I need to try to schedule with a different surgeon in the group if I can get in sooner?
2) Do you believe there is a connection to her previous inguinal hernias and muscle tear (abdominus rectus muscle)?
3) Do you believe there could be a connection to PT? (which she has stopped)
4) I have a mixed connective tissue disease. Do you believe this could be related to a Rheumatological issue – Connective Tissue disorder.Thank you in advance for your opinion. This blog is truly a wonderful support
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Trying to Get A Hernia Diagnosis
I would like to give a follow up report regarding my daughter who is now about 10 months post laparoscopic bilateral inguinal hernia repairs.
It is a good news story. She has had a few scares with pelvic pain where there was concern that she had another hernia. Each time, it was ruled out via Dynamic Musculoskeletal Ultrasound at Thomas Jefferson Univ Hospital in Philadelphia. She was given total clearance to begin to exercise. We made the decision for her to have Physical Therapy….another great decision we made. The intent is to build core muscle strength and to make sure that any scar tissue doesn’t impede further progress.Dr Towfigh, let me thank you for support. We were on the search for 2-3 painful years to find the doctors to believe her pain had a physical basis. Getting in touch with you confirmed that I had to keep fighting to get a proper diagnosis for her. I did and it worked!
My daughter is a second semester senior in college and finally this year, for the first time, she is having a “normal” college experience.
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Trying to Get A Hernia Diagnosis
Yeah! Please spread the word to your doctor and your friends!
As for the Trocar site, it sounds like it may be a hernia. An exam by your surgeon should be all you need. And/or an ultrasound. Those are easy to fix.
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Trying to Get A Hernia Diagnosis
The bulge is at the site where the scope was placed.
It doesn’t feel the same as the original hernia bulges did. It feels ‘jiggly’ (a very non-scientific description) and seems to be more above the surface.
She doesn’t really complain about pain at this point, it is very visible and shows through clothing.
Should I pursue it with radiology again?
Thank you for your advocacy’
Through your input since I first emailed you and then continued to stay in contact via this forum, I have a daughter that is no longer in daily, constant pain and has returned to a normal life. -
Trying to Get A Hernia Diagnosis
Is the bulge at the incision? I can’t tell if the incision is there. If so, then yes, that’s a hernia at
The Trocar site. -
Trying to Get A Hernia Diagnosis
‘This is a test message Please disregard
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Trying to Get A Hernia Diagnosis
You posted your issue as a response to my daughter’s problems. As the mother of a patient, I can only say that I am sorry for your chronic pain and I hope you find a resolution.
I believe that you posted this on my section by mistake. What you want to do is to start a new topic describing g your own symptoms and then the Doctor and/or other individual people will respond.
I hope you find this helpful and best of luck to you.
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Trying to Get A Hernia Diagnosis
Hi, I´m 37 years old man, since January suffering from pelvic pain not specified, my pain has take me to visit many doctors but nobody knows what is causing my problems, that are: pain and sensation of numbness on the rigth side of my butt, constipation, irradiation on the legsand my back. I see that hidden hernias could be the cause of my problems. I am very sad with all this because I have no diagnosis.
Leonardo
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Trying to Get A Hernia Diagnosis
Attached is a picture of the appendectomy scar in question. On the basis of it’s appearance, do you still believe that it could be a trocar site incisional hernia?
Please excuse the picture quality, it is from my cell phone.
Again, thank you for your opinion. -
Trying to Get A Hernia Diagnosis
We have the appointment with the Radiologist the 18th of August. I will post again when the official results are in. At the moment, my daughter won’t let me take a picture….vanity at the moment. When she allows, I will do so. Thank you for your thoughts, Dr Towfigh. Once again, We want it taken care of, although I feel terrible that she is probably facing a third surgery in a year and a half. The good news is that it can be diagnosed and fixed.
To be continued…… -
Trying to Get A Hernia Diagnosis
Sounds like a straightforward Trocar site incisional hernia. This can occur if she had an infection at that site, if the fascia was stretched to remove the appendix through it, and/or if the fascia was not closed at the end of the operation. It seems your daughter also has a propensity toward herniation.
I recommend an open repair with mesh insertion. And recreation of her belly button to make it look like a nice innie.
Please submit a picture so others can see what a small Trocar site hernia looks like. And thanks for spreading the word about this discussion board.
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Trying to Get A Hernia Diagnosis
My daughter is doing well 4 months post bilateral inguinal laparoscopic repair.
My question regards whether it is possible or likely to have an incisional hernia from an emergency laparoscopic appendectomy that was done exactly a year ago. FYI, her previous health history in the 3 prior years includes 4 ruptured ovarian cysts. We finally got that under control after getting her on the correct birth control pill.
Most of her scars have healed normally and are straight lines. The one scar that lies about an inch above her belly button has always been different. It is round and almost feels ‘jiggly’ or gelatinous. It is raised and actually can be seen through her shirt. There is no appearance of infection, the tissue appears clean and healthy. If you press into it, it is definitely uncomfortable, creating internal pain.
A physician suggested to us that it may be an incisional hernia or possibly something is getting stuck at the scope insertion site.
I have made an appointment with the same Interventional Radiologist at Thomas Jefferson Hospital in Philadelphia that found and injected her previous aponeurosis of the abdominus rectus muscle (she was a competitive field hockey player) AND discovered her bilateral inguinal hernias.I have 2 questions for you. One, do you believe that she could have a generalized weakness in her abdominal wall? And two, what are your thoughts about the appendectomy scar where the scope was inserted, could it possibly be an incisional hernia?
I have been following the other discussions on this forum and I am truly amazed at the number of people that have suffered from hidden herniated as my daughter. I wish there was more that I could do to raise awareness. Thank you in advance for your opinion.
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Trying to Get A Hernia Diagnosis
I would be very happy to give you the names of both the Radiologist and the General Surgeon who are both affiliated with Thomas Jefferson in Philadelphia. Please understand that my experiences with both were excellent and I do highly recommend both as well. I wish you the same success in finding the cause of your pain.
Interventional Radiologist is Dr Suzanne Long
909 Walnut St, Ground Floor, Philadelphia. Phone (215) 955-4121
General Surgeon is Dr Karen Chojnacki 1100 Walnut St 5th Floor, Philadelphia
Phone (215) 955-8666I wish the success we had. Good luck
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