Im 16 years old. When i was 6 weeks old i had a tumor attached to my spleen. i had surgey that removed the tumor and half of spleen. Now at 16 ive been experiencing internal pain near my scar for the last 6 months. It happens when i run, before and after i eat sometimes and then sparatically. Im seeing a doctor but id like more opinions on my situation. I do have adhesions attached to organs such as my stomach lining and spleen. Ive been told surgery to remove the adhesions are dangerous and sometimes don't help. What do you think?
If your scar tissue has adhered to your bowels, then surgery may be your only option. I wouldn't say the surgery itself is "dangerous," but the risk lies in traumatizing more tissue and causing more adhesions to form. Adhesions get tougher and thicker as they age. Yours being 16 years old are probably pretty thick and ropy by now. If they've tangled up in a loop of bowel, that fits neatly with the symptoms you describe. Picture your bowels with a kink just like a water hose. That's a whole lot of pressure from gas and waste that can't pass through, and it causes a whole lot pain and sometimes nausea and vomiting. If the loop of bowel manages to unkink, the worst of the symptoms go away.
I've had several adheliolysis surgeries and when the symptoms came back two weeks after my last surgery, my surgeon and I agreed enough was enough. It was time to deal with what I had, so I quit working and went into pain management. No more surgery for me unless it's a life-or-death situation like a full bowel obstruction.
One word on adheliolysis. Adhesions aren't usually "removed" in the same way you think of say, a tumor getting cut out of the body. They're cut so that the structues that should be able to move freely (like sigmoid colon and small bowel) are allowed to do so. Actual dissection and removal of the scar tissue depends on its amount, location and what the surgeon sees in the individual patient.
You, on the other hand, being so very young and with only the one surgery under your belt, should be a fine surgical candidate unless there is another underlying condition we don't know about. A surgeon very skilled in laparascopic surgical techniques who will go slowly and disturb as little tissue as possible should be able to help you. There is no way of telling if you will go on to develop more adhesions. Most people don't. Then there are the few like me and a couple other people on this forum who form adhesions like they're being served MiracleGro.
Have your parents take a look at this page. We'll try to answer answer any questions you all may have. :-)
Hi Sam: I'm so sorry. Jaybay has asked me to reply as well and I got caught up with other things. My apologies.
Jaybay has given you better advice than I could have. If you have a good surgeon, this could be your only surgery. And possibly pain free for life. I really hope this happens. You're an excellent surgery candidate and should heal completely. Please keep us updated on how you're doing.
I went to my doctor's this morning and I'm getting a cat scan in a week. He knows I am going to need surgery but isn't sure which one yet. I have neuroma by the scar, so he would like to make a shallow incision to remove the whole scar. But if the scar adhesions are pulling dangerously, he has to open the scar back up and scrape it off. He says i have a 90% chance of being pain free forever. I hope he's right.
That is GREAT news, and even better - GREAT odds! If my surgeon gave me a 90% shot at being pain free - or even an improvement in symptoms - I'd drag him into the OR myself. I'm so happy you have a surgeon who is ready and willing to work with you. How do you feel about it all? I know surgery can be a scary proposition under any circumstances, but for a doctor to go out on a limb with odds of success like that, you hopefully feel pretty good about it. Good for you!
Let us know if you have any questions about surgery in general or what to expect. Most of us here have been in the OR at least once, so we can offer our personal experience with things like making recovery easier and that sort of thing. Please post back - we LOVE to hear good news! :-)
I know about adhesions pain, but I really am not at the point of going to see my dr. about them yet. I had a laparotomy where all my insides where literally all take out of stomach to remove a tumor that had behind my aorta. This was close to 2yrs ago. I have pulling, feeling of tearing & burning on both my sides. The last yr. it becomes painful when my food is trying to pass through my intenstines on both sides. I do have to take a daily drink of Miralex (sp) to help the food pass. I do avoid heavy foods, I mostly eat soup, pudding, apples sauce & thin slices of deli meat. I will eventually go to the dr. but I have read a lot that there really is not anything that can be done for them.
Adhesions are so difficult for the patient and doctor alike. They don't show up on tests, and doctors and insurance companies want concrete test results before any surgery.
Surgery is the only "cure" for adhesions, but you probably know that there is a risk with surgery. When more tissues are injured, they come back. Most people never have another problem after adheliolysis. It's when they keep coming back in shorter and shorter amounts of time after surgery that you have to put a stop to it.
Scar tissue development is a normal part of healing, and there is no way to tell if it will form on a spot that will cause trouble. Some people have a belly full of the stuff and never have a problem. Others may have one single strand that kinks up a loop of bowel and present with a full obstruction needing emergency surgery.
I guess what I'm saying is to not rule out surgery automatically. It may be the best thing you ever did. Interview two or three surgeons about their laparascopic skills and personal experience with adhesions and patient outcomes. You need a very patient surgeon who will disturb as little tissue as possible. I'm not at all surprised that you have adhesions after that laparotomy you describe. A situation like that just begs for adhesion trouble. Best of luck to you, and great job on managing the symptoms by the way. :-)
I will bring this up with my doctor. Would I go back to the surgeons who did my surgeries? I had two surgeons. One was my gyno because I had a 4.5cm complex cyst on my ovary so they had to remove the ovary, faliopian(sp) tube first, then the vascular surgeon did his part. I was lucky because both surgeons agreed to work together so i would only endure one surgery. My pain is not severe enough yet, right now just avoiding heavy foods helps.
A good general surgeon is who you want to talk to about adheliolysis surgery. Preferably one who is skilled in minimally invasive techniques. Check the hospitals in your area. Many of them are now actively advertizing minimally invasive surgeries for all kinds of problems. If you have pain in your lower pelvis, then it might be beneficial to also consult with a gynecologist. The reason for that is that if adhesions have formed on your uterus, down in the cul-de-sac, or remaining tube and ovary, a gynecologist would be the better choice for working in that area.
One of my surgeries was similar to yours. I had a gyno working on endometriosis while a general surgeon worked on adhesions in the upper abdomen. The surprise was finding a hot appendix while they were in there, so the general surgeon was able to take care of it right there and then. That was such a funny situation. I had begged my general surgeon to take a peek inside because I knew something was very wrong in spite of all tests saying otherwise. I knew the endometriosis was back and started questioning him about how well he recognized and dealt with various flavors of endo since that's typically something a gyn deals with. It was too funny! He finally started laughing and said, "You know more about it than I do, so how about we get Dr. Gyn to work on that part?" LOL! He called his friend Dr. Gyn right there in front of me, explained the situation, and sent me right over for a consult. A few days later I was in the OR with both surgeons. It pays to do some research so you can ask detailed questions about surgical techniques, etc. Some docs get their egos in a twist when patients ask too many pointed questions, but those are the ones you don't want working on you anyway.
I really admire the way you've been able to manage your symptoms for so long. Lord knows I understand how tiresome it can be to find something to eat that won't leave me a shaking, vomiting mess for hours. Mostly I have to avoid fiber, which means I miss out on many of my favorite foods: fruits and veggies. Fat is another problem, but I've found a way around that in the form of avacados. They're a great source of omega 3 fatty acids and all kinds of other nutrients. They also give me plenty of calories in a small package, which is difficult to find unless you're talking about high-sugar foods with empty calories. Don't you love being your own nutritionist?! :-)
The cat scan i had done showed no scar tissue. My doctor believes i have neuroma, but the injections he gives me don't help. He says if they did, the surgery would be 100% successful. But, since they don't help i have a 10% chance of my pain not going away or getting worse. I'm going to go to another doctor and ask their advice, but I'm leaning toward the surgery. If you have any advice for me it would be much appreciated. I don't know what's best and it's a tough decision being only a Junior in high school.
Scar tissue doesn't show up on CT scans, so that test is really inconclusive at best if they were specifically looking for adhesions. It's a great idea to have a second opinion - go for it! It's also your body, and ultimately your decision what will be done with it, but I think you're on the right track. All any of us can do is make an educated decision, and you're doing that. Best of luck and do stay in touch! :-)
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