Post biliary sphincterotomy and stent placement pain (Page 1)
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Conditions and Diseases
My wife started experiencing severe pain associated with her biliary system in mid February. An ultrasound revealed dilation in the CBD (about 1.5 cm) as did the MRI. An ERCP and hydoscan showed that the cystic duct wasn't taking up bile. She was admitted and the first doctor recommended removing the gallbladder. We went to a major university hospital for a second opinion.
That doctor recommended a percutaneous cholecystectomy tube to drain the gallbladder. There was abnormally high levels of pain from the tube after placement for about 1.5 weeks, but after that subsided she was ok for about 3-5 days, at which point the GB pain came back, although not as severely as before. The tube needed to stay in for a total of 7 weeks, as after 2 the wound channel had not sufficiently healed. After the tube was removed, her GB pain went back to its previous highs. They did notice that the CBD didn't seem to be draining.
The first doctor we saw removed the GB. He did find thickening of the walls and some erosion. That seemed to relieve her symptoms for about 1 week.
The symptoms did return, although not at the original highs. The GI doctor recommended a sphincterotomy to aid in draining of the CBD.
Another GI doctor did the ERCP. After performing the sphincterotomy, the CBD wasn't draining as quickly as he liked, so he also placed a stent. The stent is to be removed in 3 months.
When the stent was placed he could see the CBD draining quickly. This was on May 27th.
My wife was sent home about 1 hour after the procedure was finished. In addition to the normal gas pain, she began experiencing a twisting, stabbing pain in the center of her abdomen behind her rib cage. She said it felt like it was coming from her stomach and it felt like it was doing flips. The intense pain would come frequently and would typically last for anywhere between 5-15 seconds. It can be intense enough it could bring her down to her knees. In addition to that pain, she also feels as though she's been punched in the stomach. This is definitely different that the pain that she had been experiencing prior to this.
The night after the ERCP (May 28th), we went to the ER. They checked her blood levels, and aside from borderline lipase, were normal. On May 29th, after speaking with the doctor that performed the ERCP, he scheduled an emergency CT. The CT didn't show any pancreatic inflammation. He said the CBD's dilation had gone to 6 mm (from a max of 1.6 cm).
While the twisting/stabbing pain aren't as frequent as they were the two days after the procedure they still come just as intensely. They don't seem to correspond with eating or not eating. They come whether she is laying down or standing, although a trip to the store last night (June 11th), brought them on much more frequently. So even though they come when laying down (in the neighborhood of 10-20 per day), being up and active brought about 15-20 in a 1 hour period.
On the chance this was caused by a muscle spasm, her original GI doctor prescribed dicyclomine (10 mg, 3 x daily). The first day there were less, but that may just be coincidence as it doesn't seem to be affecting them now. She still has the "punched in the stomach soreness" as well.
Her doctor says he hasn't seen/heard of anything specifically like this (been a GI doctor for ~30 years). The doctor that performed the ERCP just referred us to the original GI doctor.
She's scared as we don't know what this is or what is causing it. Is this typical following an ERCP, sphincterotomy, and stent placement? Will the symptoms go away on their own? Will they go away when the stent is removed? Any insight into this would be greatly appreciated, we haven't been able to find much information about this.
That doctor recommended a percutaneous cholecystectomy tube to drain the gallbladder. There was abnormally high levels of pain from the tube after placement for about 1.5 weeks, but after that subsided she was ok for about 3-5 days, at which point the GB pain came back, although not as severely as before. The tube needed to stay in for a total of 7 weeks, as after 2 the wound channel had not sufficiently healed. After the tube was removed, her GB pain went back to its previous highs. They did notice that the CBD didn't seem to be draining.
The first doctor we saw removed the GB. He did find thickening of the walls and some erosion. That seemed to relieve her symptoms for about 1 week.
The symptoms did return, although not at the original highs. The GI doctor recommended a sphincterotomy to aid in draining of the CBD.
Another GI doctor did the ERCP. After performing the sphincterotomy, the CBD wasn't draining as quickly as he liked, so he also placed a stent. The stent is to be removed in 3 months.
When the stent was placed he could see the CBD draining quickly. This was on May 27th.
My wife was sent home about 1 hour after the procedure was finished. In addition to the normal gas pain, she began experiencing a twisting, stabbing pain in the center of her abdomen behind her rib cage. She said it felt like it was coming from her stomach and it felt like it was doing flips. The intense pain would come frequently and would typically last for anywhere between 5-15 seconds. It can be intense enough it could bring her down to her knees. In addition to that pain, she also feels as though she's been punched in the stomach. This is definitely different that the pain that she had been experiencing prior to this.
The night after the ERCP (May 28th), we went to the ER. They checked her blood levels, and aside from borderline lipase, were normal. On May 29th, after speaking with the doctor that performed the ERCP, he scheduled an emergency CT. The CT didn't show any pancreatic inflammation. He said the CBD's dilation had gone to 6 mm (from a max of 1.6 cm).
While the twisting/stabbing pain aren't as frequent as they were the two days after the procedure they still come just as intensely. They don't seem to correspond with eating or not eating. They come whether she is laying down or standing, although a trip to the store last night (June 11th), brought them on much more frequently. So even though they come when laying down (in the neighborhood of 10-20 per day), being up and active brought about 15-20 in a 1 hour period.
On the chance this was caused by a muscle spasm, her original GI doctor prescribed dicyclomine (10 mg, 3 x daily). The first day there were less, but that may just be coincidence as it doesn't seem to be affecting them now. She still has the "punched in the stomach soreness" as well.
Her doctor says he hasn't seen/heard of anything specifically like this (been a GI doctor for ~30 years). The doctor that performed the ERCP just referred us to the original GI doctor.
She's scared as we don't know what this is or what is causing it. Is this typical following an ERCP, sphincterotomy, and stent placement? Will the symptoms go away on their own? Will they go away when the stent is removed? Any insight into this would be greatly appreciated, we haven't been able to find much information about this.
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First Helper nadmonk
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I have read many health forums but have never responded. I had to respond to this one tho..I too have the same exact pain/symptoms your wife has. I am in my early 40's, have had 8 ERCP's, too many stents to count, gallbladder removed, several hospital stays due to elevated enzyme levels (but never very elevated) and pain, pain , pain. I have been to a major university medical center (was there last week) and maybe someday we'll figure this out. In the meantime, I wish your wife the best and if you get a confirmed dx and/or treatment plan, I would love to hear about it! She is not alone.
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I am experiencing the exact same problems. Had gallbladder removed about a year ago and after continued pain, was told I had Sphincter of Oddi dysfunction. Had sphincterotomy 2 weeks ago. Still in lots of pain and I told my husband - it feels like someone is twanging my insides like an elastic band. It is very uncomfortable, especially when I stand. I am due to have the stent removed next week (although hospital haven't contacted me yet!). I am dreading more pain. As it is I have Crohn's disease which causes lots of pain anyway. How can I cope with work/children etc?
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Omg, same with me! If you look there is forum after forum of us on here and there has been no doctor with a solution. I live with these chronic attacks daily. No gallbladder and sphinctorotomy later, you would think I would be good, but my doctor seems clueless! It's so frustrating to live with this pain and no answers.
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13 ERCPS
I am 36 yrs old and have also had my gallbladder removed and tomorrow will be my 13th ercp! 6 months ago i had a stent put in and experienced the same pain, i was sent to a different dr at dartmouth in nh 1 month later and they took the stent out,i'm not sure why or how or anything as to why this happends. i believe that my dr will put the stent back in tomorrow and if it happends again i will be back on , but in the mean time if anyone has answers please let us know!
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Common bile duct stent pain
I had my gallbladder removed 4-08,..2 days after liver enzymes sky high,..pain,...more severe than GB pain. Today I have had 3 ERCPS which included 2 sphincterectomies on the first 2 and stent placement on the 3rd which was almost 3 weeks ago. I have been pain free up until about 1 week ago. Sharp stabbing pain but only for less than 5 minutes,...this morning...I have had 2 episodes and had to take 3 levsin. Was told bile duct could not spasm with a stent,...is this true?...any advise would be appriciate...
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proublems after gallbladder removed alot of pain
i see there are many like us out there i had mine out gallbladder july 12 2006 have pain all the time lay in bed cry no insurince husband got laid off all they wanted to do is ct scans went to different hospitals said theirs was better been to several emergency rooms when i had insurence was treated like crap wanted to know if i could be pregnant said no husband had vicetamie did i cheat on him i said no i did not same place asks did i come to er just to get drugs isaid no im sick as a dam dog there are days i cant do nothing in pain everything wears me out i just try to deal with it my own way no one listens any way i can tell when i fill real bad i pee in a container let set within a half hour urin will turn dark like coke with white cystals in it laying in bottom have took to doctors theyblow me off i say im done throwing money away thanks sheila c
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Hello again! Unfortunately, there are others like me out there. Sorry for your luck. 
I have decided to bite the bullet and go for surgery. I am too young to be hurting like this and I take too darn many pain killers. I just want to go about my day not wondering if I have pain meds close by. Hate going to the ER where they look at you like a drug seeker. I will be having a Transduodenal Sphincteroplasty the first week of November. I was referred to a surgeon that I like and trust (I have checked him out too) and my husband and I figure why not at this point. Hope you all are feeling better soon. I'll keep you posted.
I have decided to bite the bullet and go for surgery. I am too young to be hurting like this and I take too darn many pain killers. I just want to go about my day not wondering if I have pain meds close by. Hate going to the ER where they look at you like a drug seeker. I will be having a Transduodenal Sphincteroplasty the first week of November. I was referred to a surgeon that I like and trust (I have checked him out too) and my husband and I figure why not at this point. Hope you all are feeling better soon. I'll keep you posted.
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Hello out there. I am now 4+ weeks post op from my transduodenal sphincteroplasty. I had the surgery at the IU Med Cntr in Indpls. I am happy to report that they are 90% certain this surgery will stop the constant pain. Basically what they do is pull the sphincter of oddi, common bile duct and pancreatic bile directly into the duodenal space, filet them open and sew them down to the intestinal wall. This way, stones and sludge and pancreatic juice can't get blocked up and dumps directly into the intestine. They use a very long (9inch) vertical incision and the pain the first 3 days was almost unbearable. I spent 6 days in surgical ICU then was xfered to a med/surg floor for an additional 2. The only pain I have right now is from the upper part of the incision. I have been told it could be an incisional hernia. I am seeing my surgeon tomorrow so we can figure out why just this top part of the incision isn't healing properly. Otherwise, I am VERY pleased. Not too much info online about our problems which is frustrating. My goal is to be off all pain meds for this by June. I hope you all are feeling better soon!
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Pancreatitis
What Dr. Do you see at IU Med Center.? Please send me all the info on your problems, etc. I hace had surgery there once, but still in alot of pain. Please email me. Thanks
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UGH! Make it STOP!
I had my gallbladder removed in 06, was pain free till beginning of 2009. I had a sphincterotomy at he end of April '09. I had a few episodes again in July and now having the same problem, pain in my RUQ. The doc said my belliruben is elevated but my Liver Function test are all normal.... I am getting super tired of always being in pain. My poor hubby is always hearing me complain, he is super supportive but I am sure I am getting on his nerves! I just got home from the ER tonight and he is referring me to a GI specialist asap.. I am sick of taking pain meds, I just want to get better!
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ERCP/cholecystectomy
Responding to Vivvers...I just experienced a cholesytectomy on Nov. 30th and 5 days later had the bile leak explode and cause unbearable pain that I too got many excuses for having but the GI Dr locally tried to stent me(ERCP) and sent me on to IU med center as well...Dr. Cote, where he found my insides challenging to maneuver too. He is very knowledgable and attentive and I have a stent in place currently and am trying to heal and rest to recover for another procedure in January. I have times when it feels like someone is holding on to the "tubing" and yanking it around, it takes your breath away. I didn't eat for a week, so I am still getting my tummy used to eating again. I am eating every four hours, and resting/sleeping so much as my body deals with the bile that is still in my abdominal cavity...you have encouraged me! thx so much. Merry Christmas!
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SOD
The docs at Indy (Indiana University) are fantastic. I had my procedure there too and trust them 100%. They are very caring and take a long time to explain everything and make one feel comfortable. They are experts in this subspecialty. I feel like if they can't help, nobody can.
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I am so happy to have found this forum..I feel so alone with this problem.. I just had my 5th ercp with bilary sphincterotomy...i am experiencing the twisting/pulling pains.. i am still on a brat diet.. eating is so painful..stents and surgery have been discussed but have not under gone .. it is so good to know i am not alone.has anyone developed cystic lesions on the pancreas? i have had pancreatitis twice due to ercp, and now have 4.5cm lesion..
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Having Multiple ERCP w/ stents
skl,
I just had my 3rd ERCP, this time w/ lithotripsy and thought would be the last stent, but due to fragments I was stented again (4th time).
Anyone know how many times they can stent me? Someone told me after lithotripsy the fragments have to dislodge so they may have to stent you one more time, but that is what I was told last time. The medical cost are eating me alive as this procedure runs about $30k a pop leaving me about 3-4k the last time and likely 2-3 for this time.
I have met a lot of people who have had their gallbladder taken out, but I'm the first I know of w/ a bilary duct disorder so any suggestions of where to look for more info would be appreciated.
Anna
I just had my 3rd ERCP, this time w/ lithotripsy and thought would be the last stent, but due to fragments I was stented again (4th time).
Anyone know how many times they can stent me? Someone told me after lithotripsy the fragments have to dislodge so they may have to stent you one more time, but that is what I was told last time. The medical cost are eating me alive as this procedure runs about $30k a pop leaving me about 3-4k the last time and likely 2-3 for this time.
I have met a lot of people who have had their gallbladder taken out, but I'm the first I know of w/ a bilary duct disorder so any suggestions of where to look for more info would be appreciated.
Anna
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Upper right abdominal pain
I have had my gallbladder removed and was told that my bile duct sphincter muscle is too tight and spasms. I was also told that the only way to fix this is sphincterectomy. However every dr. I have seen says I am too high risk because I am only 26 and this procedure often causes pancreatitis. Anyone know of a dr in the MD/ VA/ DC area that might help me. I am sick of being in excruciating pain and having to visit the ER. Pleas help!
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I am 28 and am about to have an ercp with stent placement. I have already had the pacreatitis and the pain is horrible. I was hospitalized over the summer and my surgeon just said I had an ulcer in my stomach which they cannot reach, since I had a gastric bypass. Then I was just hospitalized for a week during thanksgiving to have surgery and schedule the ercp with stent placement, from the elevated liver enzymes and pancreatitis. I am looking to find out if anyone knows the recovery of a ercp with stent placement. To top it off I had to have a gtube placed to have this all done. I hope you found out some information. I am trying to figure out if I have to take off work again, after the stent placement. Especially since I work with heavy lifting. Anyone know?
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ERCP
My daughter is 23 and had stones in her biliary duct, she had her gallbladder taken out 9 years ago.
2 Weeks ago she had an ERCP and also they placed a stent in her duct. Hours after the surgery she developed excruciating pain and later on CT showed significant pancreatitis. It was a rough few days at the hospital. She left hospital last Tuesday and she is still experiencing a lot of pain, now at 23 all she is doing is taking hydromorphin for the pain and she can barely eat anything. Doctors are inconclusive with their reasons and don't even advice on diet etc... I am hoping her pain goes away and she can get on with her life. It may be the stent or something else. I see all this posts and all they tell me is that our doctors are not communicating what we can expect and why the pain etc... I don't know how long it will take for her to feel better again. I wish you luck and good health.
2 Weeks ago she had an ERCP and also they placed a stent in her duct. Hours after the surgery she developed excruciating pain and later on CT showed significant pancreatitis. It was a rough few days at the hospital. She left hospital last Tuesday and she is still experiencing a lot of pain, now at 23 all she is doing is taking hydromorphin for the pain and she can barely eat anything. Doctors are inconclusive with their reasons and don't even advice on diet etc... I am hoping her pain goes away and she can get on with her life. It may be the stent or something else. I see all this posts and all they tell me is that our doctors are not communicating what we can expect and why the pain etc... I don't know how long it will take for her to feel better again. I wish you luck and good health.
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ERCP with stent and liver enzymes are still spiking
Wow, glad I found this site. I have had gallbladder removed, and had 3 ERCP's. Two times with stent placement. Of course had recurrent pancreatitis. Most maddening thing is my liver enzymes continue to spike anywhere from 350 to 900 even with the stent in! My doctor doesn't seem to have an answer. Each time this happens he suggests lets do another ERCP, cut the sphincter a little more and place another stent in. UGH. Has anyone else experienced elevated liver enzymes with the stent in? I've been in the hospital twice since the stent was placed because enzymes so high and pain is unbearable.
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3+ years out
Hello out there.
Just wanted to check in and tell you all that I am now 3+ YEARS post surgical Transdudenal Sphincteroplasty. I underwent the surgery at the IU Med Cntr in Indianapolis. I have had only ONE ER visit in that time for pancreatitis. I am off of all pain meds and feel fantastic. I would highly recommend Drs. Zyromski and Nakeeb. They went above and beyond my expectations. I was beginning to feel that not only was I the only one on the planet with Sphincter of Oddi dysfunction, CBD occlusion and pancreas divisum. Thanks to your stories I know I am not alone. If you live in the midwest I urge you to contact the IU Med Center. They really know what they are doing and explain everything in easy to understand terminology - and I work in the scientific part of the medical field. Only problem I have now is an incisional hernia from the surgery that will be repaired next month. That should be a walk in the park. Keep the faith, I did and I'm "all bedder" now as my then 6 yr old told me
Just wanted to check in and tell you all that I am now 3+ YEARS post surgical Transdudenal Sphincteroplasty. I underwent the surgery at the IU Med Cntr in Indianapolis. I have had only ONE ER visit in that time for pancreatitis. I am off of all pain meds and feel fantastic. I would highly recommend Drs. Zyromski and Nakeeb. They went above and beyond my expectations. I was beginning to feel that not only was I the only one on the planet with Sphincter of Oddi dysfunction, CBD occlusion and pancreas divisum. Thanks to your stories I know I am not alone. If you live in the midwest I urge you to contact the IU Med Center. They really know what they are doing and explain everything in easy to understand terminology - and I work in the scientific part of the medical field. Only problem I have now is an incisional hernia from the surgery that will be repaired next month. That should be a walk in the park. Keep the faith, I did and I'm "all bedder" now as my then 6 yr old told me
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Transduodenal Spincteroplasty
Just told today that I need transduodenal spincteroplasty. Very nervous. Read your post and feel a little better about the whole thing. You did mention though the first few days were incredibly bad. Hoping I have the courage to go through with this. Definitely tired of hospital trips b/c of elevated liver enzymes and horrible pain. Keep me posted of your progress please.
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Transduodenal Spincteroplasty
Just told today that I need transduodenal spincteroplasty. Very nervous. Read your post and feel a little better about the whole thing. You did mention though the first few days were incredibly bad. Hoping I have the courage to go through with this. Definitely tired of hospital trips b/c of elevated liver enzymes and horrible pain. Keep me posted of your progress please.
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same boat, vivvers
Hey vivvers, I had the same surgeries at Indiana University health, too! Small world, but they are a big medical center. But, I ended up with a lot of incisional pain there, too. It just kind of nagged for a long time. Then, I heard about an outpatient physical therapist at the hospital named Nari...can't remember her last name. She did this visceral therapy and it totally helped get rid of all the pain I had starting with my cholecystectomy so many years ago--just in case you need a little extra help, since you're in the area
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I had the Transduodenal sphincteroplastic surgery in Sept of 2009. Still in pain. I had a few weeks relieve after an additional ERCP done because they saw a particle of food in the common bile duct. This is after the surgery. Currently I am in so much pain. It goes from the upper right abdomen to my back, up to my right shoulder! The pain is pretty constant. I can't eat, because causes additional pain!
I was told by my surgeon that if it did not work the next procedure would be additional mayor surgery. This last one took so much out of me! 10 days in the hospital. I believe this next surgery is so much worse! I am so scare, I guess I have to decide what to do, can't live like this!
I was told by my surgeon that if it did not work the next procedure would be additional mayor surgery. This last one took so much out of me! 10 days in the hospital. I believe this next surgery is so much worse! I am so scare, I guess I have to decide what to do, can't live like this!
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15 ERCPs!
Well, it's nice to know I'm not the only one out there who suffers with so much pain. I had my gallbladder removed on an emergency basis in May 2007 (10 days after I had my baby, who was born 3 weeks early). Eight months later, came down with severe acute pancreatitis. They tried to admit me to the hospital then, but I refused as I had an 8 month old and a 3-1/2 year old at home who needed me. A month later, had another attack of pancreatitis and this time I had an ERCP because the gallstones had caused scar tissue to block up the pancreatic duct. Had a stent placed then and did well for about 8 months, then the severe pain recurred.
I've now had 15 ERCPs, some with stent placements in the pancreatic duct, the common bile duct, or both. My body did not react well to the stents and I had severe cramping while the stents were in (very different feeling from the pancreatitis). This pain was minimized by Botox injections in the duodenum and by anti-spasmodics (although I'd still have them, they were just milder and less frequent).
I am now 2 months after the last pancreatic stent has been removed. Last week, I had another bout of pancreatitis. The pain and nausea have been so bad. I'm just now starting to have solid food again, just avoiding fat meat. I go see my GI doctor next week and going to demand a real plan to deal with this on a long-term basis. It's not fair to my family that I'm always in pain or on pain meds, I can't eat normal food or be as active as I'd like to be. And I can't get life insurance because of recurring pancreatitis. I need an end to this!
I've now had 15 ERCPs, some with stent placements in the pancreatic duct, the common bile duct, or both. My body did not react well to the stents and I had severe cramping while the stents were in (very different feeling from the pancreatitis). This pain was minimized by Botox injections in the duodenum and by anti-spasmodics (although I'd still have them, they were just milder and less frequent).
I am now 2 months after the last pancreatic stent has been removed. Last week, I had another bout of pancreatitis. The pain and nausea have been so bad. I'm just now starting to have solid food again, just avoiding fat meat. I go see my GI doctor next week and going to demand a real plan to deal with this on a long-term basis. It's not fair to my family that I'm always in pain or on pain meds, I can't eat normal food or be as active as I'd like to be. And I can't get life insurance because of recurring pancreatitis. I need an end to this!
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hi all, i too have sod following the removal of my gallbladder in march this year. i'm in constant pain, every few days i have a couple of days where i vomit back everything i eat and two weeks ago had botox injections into my sphincter of oddi. i see some of you have already tried the botox and get the impression that they don't work. my gp has just started me on nefopam for the pain as tramadol are no longer doing much to allieviate my pain. i also use paracetamol and have morphine liquid at hand for when the pain is unbearable. can anyone tell me how long they had to wait between ercp's as my doc wants to wait 6 weeks before i see him again and i am getting sick and tired of not being able to do much because of the pain.
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