Hi Jen, have been prescribed Probanthine (muscle relaxant) for SOD, so far the results have been good, my G.P. has also mentioned that Botox is being used by some doctors with good results. Not heard anybody mention that before so not aware of any results good or bad
OMG I am so so sorry. I had to go out of Savannah as there aren't any doctors that can fix it. I had to go to MUSC. It has been so liberating to go there. They are so sympathetic to the pain of this horrible horrible disorder. I have been so degraded and humiliated by this problem that I feel so scared of doctors now. Once I had the diagnosis though I could find someone to fix it and I did. Her name is Dr Katherine Morgan. I don't know what insurance you have but get no DEMAND your pcp get you an approval from the insurance company to go there and get your life changed. You will live in horrible agony if you don't do something. I pray you get some help. Unfortunately if you say Pain in Savannah you have said a 4 letter word and you will get nowhere at all but labeled as a pain med seeker. I have been in such pain that I offered my virtue for pain meds. Was I a seeker YOU BET I WAS I WAS IN PAIN, NON STOP EVERYDAY ALL THE TIME.You bet I was but I had valid problems and they ignored them because of their arogance and ignorance. Please RUN DON'T WALK to MUSC and get some help. I think we can have our life and our dignity back.
peggy aughtry wrote:
Thanks so much for your advice! Is Dr. Morgan up at MUSC? I have an appointment on thursday with a local pain management doctor so hopefully I can get some help from her. It is such a horrible thing to be i pain all the time, especially when you know there is medication that can help you live a normal life. But your right...everyone thinks that you're a drug seeker.
Wish me luck for thursday and I will definately look into going to see Dr. Morgan. Can you tell me what kind of treatment she offered? I have type three and have not had a shincterectomy as much of what I have read says that many times type three's get no relief. I really feel stuck but I feel now with your help I have some options. Thank you so much for responding...I will keep you posted!
jennifer323 wrote:
I live near savannah and have been dealing with SOD for several years. Do you have any recommendations for doctors that you have seen in the area. I have gone to one pain doctor and he wasn't very helpful or sympathetic. He basicallytold me that I had to learn to accept that I will be in pain for the rest of my life. Not acceptable to me. Any advice or recommendations would be greatly appreciated!
OMG I am so so sorry. I had to go out of Savannah as there aren't any doctors that can fix it. I had to go to MUSC. It has been so liberating to go there. They are so sympathetic to the pain of this horrible horrible disorder. I have been so degraded and humiliated by this problem that I feel so scared of doctors now. Once I had the diagnosis though I could find someone to fix it and I did. Her name is Dr Katherine Morgan. I don't know what insurance you have but get no DEMAND your pcp get you an approval from the insurance company to go there and get your life changed. You will live in horrible agony if you don't do something. I pray you get some help. Unfortunately if you say Pain in Savannah you have said a 4 letter word and you will get nowhere at all but labeled as a pain med seeker. I have been in such pain that I offered my virtue for pain meds. Was I a seeker YOU BET I WAS I WAS IN PAIN, NON STOP EVERYDAY ALL THE TIME.You bet I was but I had valid problems and they ignored them because of their arogance and ignorance. Please RUN DON'T WALK to MUSC and get some help. I think we can have our life and our dignity back.
Thanks so much for your advice! Is Dr. Morgan up at MUSC? I have an appointment on thursday with a local pain management doctor so hopefully I can get some help from her. It is such a horrible thing to be i pain all the time, especially when you know there is medication that can help you live a normal life. But your right...everyone thinks that you're a drug seeker.
Wish me luck for thursday and I will definately look into going to see Dr. Morgan. Can you tell me what kind of treatment she offered? I have type three and have not had a shincterectomy as much of what I have read says that many times type three's get no relief. I really feel stuck but I feel now with your help I have some options. Thank you so much for responding...I will keep you posted!
Wanted to let you know that I put in a request for an appointment with Dr. Morgan. Hopefully I can get in soon!
You will be so glad that you did. I have NEVER in my life been so disrepected and degraded as I have been here in Savannah. I hear c**p all the time that it is because we are one state up from Florida where pain meds are issued like candy but I could give a c**p about that. There is legitimate people out here with legitimate pain and that is who they should save their compassion for. What I have learned is that there is no pain worse than pancreatic pain and no one can understand that. you will learn what a normal respectable person you are from the minute you walk in to the door at MUSC, Savannah could take a lesson from them. The worse part of all this mess is I work in the doctors offices that have done this to me. Well most of the offices. It is a nightmare and I shake just to know that I have to go to the doctor anymore. I have a family full of doctors so I know how smug and arrogant they can be but NOTHING can compare to what I have been through. I am healing and I think that things are going to resolve. I have a sphincterplasty which is the open surgery because I had gastric bypass 10 years ago so you can't do an ERCP on me. you can't get down that far. I know that I am in good hands. Even the times I have had to go to the ER I now drive the 100 miles to Charleston just so that I know I don't get my treatment delivered with a HUGE side of humiliation and degradation. Good luck you will soon know that you call to Dr Morgan is the BEST call you have EVER made in your life from the second you walk in to check in with her staff until you meet her tiny little self in person. ***this post is edited by moderator *** ***
private e-mails not allowed*** Please read our Terms of Use
private e-mails not allowed*** Please read our Terms of Use
Well the pain management doctor I went to see today wouldn't even see me...the nurse told me that she will not treat any patients with gastro issues
I went to my PCP today to get a referral and when I requested an appt at MUSC they won't let me make an appt with Dr. Morgan because she is a surgeon. I have to see a regular GI guy first. Did you have to do this too?
So after the sphincterectomy were all of your symptoms resolved or do you still take meds? I will let you know as soon as I get an appointment up at MUSC. Thanks for all of your help
I went to my PCP today to get a referral and when I requested an appt at MUSC they won't let me make an appt with Dr. Morgan because she is a surgeon. I have to see a regular GI guy first. Did you have to do this too?
So after the sphincterectomy were all of your symptoms resolved or do you still take meds? I will let you know as soon as I get an appointment up at MUSC. Thanks for all of your help
Most pain managment docs only treat like injury type things, or like back leg hip pain that type of stuff. Most won't treat like for instance cancer pain that is not what they do. I was a referral specialist at my last doctor office for 2 years and they wouldn't take pain caused by illnesses. I did see 2 gastro docs and one doc that did my gallbladder removal because the regular gastro docs here will not do surg on post gastric bypass patients. I call EVERY GI doc here in Savannah and all of them said they refer out to MUSC. In fact this is funny Dr. Oliver Whipple the leading GI surgeon here for gastric bypass pt's nurse asked ME how to spell it so she could ask him. Now if his main nurse can't spell it believe me he ain't touching me again. Besides all of the mental abuse he gave me is unbelievable. I kept getting sicker after he did my gallbladder removal that was supposed to be routine laproscopic but he got in there and my GB was 4x's it's normal size, he had to removal every foot of my intestine to get it unknotted from a HUGE hernia and found stones in my appendix so it had to be removed. I woke up to a life that is unrecognizable to me. I never recovered and he got mad at me, thru his hand in my face 8 weeks later and said "I don't know surgically you are fine see a GI or something" and walked out of the room. I was in the hosp 22 days in June because I was so incredibly ill going in to this surg I just never recovered but it was inconvenient to him because he was going on vacation. I call 2 days after I was released and said I couldn't breathe and I was swelling worse and he said "call your PCP" now I did work for my PCP and what in the hec could she do for me. He ordered an US of my legs and when the tech just 4 floors up from him saw me she gasped and called him immed and said she doesn't have a blood clot but you should see this. I was so swollen in my legs she had to use doppler for find my pulse he said have her call her PCP. It was a friday afternoon at 4pm I was in congestive heart failure and severely malnurished. I had TPN feeding for 11 days and released but it just never stopped. My liver enzymes were all over the place but by March I was just a mess. Most of the tests ran were normal but my blood work. They all said the pain was psychosomatic. I said whatever but please let me have TPN. They said I could get PICC infec I said true enough but I could die from malnutrition. I finally had a test say suspicious of SOD. My PCP was able to do the referral. If you have a workup that confirms or points right at SOD they most certainly can do the referral and don't you let them say they can't in fact in the insurance co eye the PCP has to do it. THERE AREN'T ANY DOCS IN SAVANNAH THAT CAN TREAT SOD. You HAVE to go there. Who is your ins co if I might ask. My symptoms are getting better everyday. I still don't experience hunger or thirst but I was left to die for a year so my body is going to take time to wake up and do this stuff on it's own. My pain is significantly better. I have a Gtube in just incase I am not taking in enough to keep me safe nutritionally. I did get a severe PICC infection. It took 2 months of PICC TPN 24 hours a day just to get me healthy enough to survive the surgery. That is how bad off I was nutritionally. What are your symptoms? What is wrong, what is your proof????? Girl do NOT let these people say what they cannot do!!!! That is over and it is over because you are NO LONGER going to allow it. Fight for yourself!!!! Go over their head if they won't The reason you have a PCP is because they manage your care so in the eye of the ins co they are who the referral MUST come from with info to back up their claim. Knowledge is power, get it right now and become powerful. You can call your ins co tell them you have a rare condition that has to be treated at a specialty center the closest and most qualified for you is MUSC and what do you need to be able to be treated and healed there?????
ebnursey wrote:
I asked a Dr one time how he got to my head when I was even pointing to my abdomen?? They want to be smug and arrogant then by golly I am going to do something to amuse myself as well. I speak trucker fluently if you know what I mean and I must use something and it is usually humor to keep me from just cussing them out. I would totally be able to understand another human (a quality they seem to lack) tell me I don't know what it is but we will find out together. But when I am vomiting for hours and in pain, my liver enzymes are a mess and I have a positive cancer marker test and I am told it is all in my head, geesh I know some super duper nut cases and I don't think they can do that to themselves. So everytime they mention my head I politely interrupted them and said they must have me confused with another patient because mine is all in the abdomen and sometimes around to my back and up into my breast. But back to you as for weight gain I have to say the complete opposite for me. I almost died from malnutrition. I became a literal skeleton. for someone who used to weigh 305lbs 10 years ago I usually weigh about 140ish I went down to 108 and it wasn't pretty. I still struggle. I do not have the sensation of hunger or thirst, they say it will eventually come back, I think it might be. I have a G tube in right now just incase there is a problem. The pain is there but I think it is getting better too. This has been a nightmare. It has been degrading and humiliating. I now have a nice healthy fear or doctors and find I don't say much to them anymore. I mean I do at MUSC because I feel safe to talk to them there about what is going on but it just isn't safe in Savannah but I have to keep saying the 4 letter word...P A I N Doctors run when they hear the word and it almost killed me......literally. It has truly destroyed my life. I don't recognize myself anymore. I woke up June 1, 2011 to a life that I do not recognize. It is awful. Even though it is getting better I need to find a way to deal with the anger and the hurt inflicted by those sworn to do the opposite. Good luck keep us all posted. We all can learn from each other.
ebnursey wrote:
Guest wrote:
Guest wrote:
I had my gallbladder removed and continue to have pain as well. I was thinking of asking my dr about spincter of oddi dysfunction. Just curious, along with the pain did you also experience unexplained weight gain?
I had choledochoduodenostomy, or Roux-en-Y for short (not because I was heavy) This is almost the same surgery they do for gastric by pass. Mine was for upper quadrant pain. All tests indicating gall bladder. Had an ERCP only to have surgeon nick pancreas 4 times and I ended up with pancreatitus (11days in hospital) No surgery for gall bladder removal until 3-4 months later. (another 11 days because there was a stricture in common bile duct. A few months go by and I'm gaining weight. Start having same pain as before surgery. I've had every regulat test done and nothing. Three years later, I'm now 50 lbs more than when I started with this nonsense and I'm still having upper right quadrant pain. But............it is all in my HEAD. GEE, THANKS DOC"S.
Cholycystectomy in Dec 2005, four months later referred back for right upper quadrant pain, referred to gastroenterologist - gastroscopy barium and colonoscopy, showed hiatus hernia (already knew about) Diverticuli (already knew about) CEA raised but as bowel o.k. no further action - guess what, TOLD IT WAS PHANTOM PAIN AND ALL IN MY MIND! not amused, gradual weight gain continued, unable to lose weight no matter what, upper quad pain continued though intermittent until jan this yr became continous for two months night and day. referred back to gastro, all tests repeated, same results although polyp removed this time from bowel. This time was told the pain was due to my weight! will refer to endocrinologist for failure to lose weight. Saw my G.P. this morning who realised another G.P. had passed my thyroid function test results as normal when it clearly stated abnormal. (he was not amused as this young G.P. keeps checking up on him - cheek) Thyroxine increased with a review in a month, and a ? sphincter of oddy dysfunction, prescribed probanthine, again for review in one month, lets see how things go, only been ongoing for 6 years so far. Another treatment he mentioned although only temporary is botox into the sphincter itself.
Progress report on above - Probanthine appears to be helping a great deal. Not 100 % but so so much better. Then disaster, the drug manufacturers are having problems with this drug and currently are not manufacturing Probanthine. Pain returned and for a few days back to square one, till I found a dispensing chemist who still had some left. G.P. has prescribed different antispasmodic Buscopan but have not yet started using it. G.P. has mentioned Botox injections into Sphincter have not heard anybody mention this yet as a treatment and whether it is successful.
I asked a Dr one time how he got to my head when I was even pointing to my abdomen?? They want to be smug and arrogant then by golly I am going to do something to amuse myself as well. I speak trucker fluently if you know what I mean and I must use something and it is usually humor to keep me from just cussing them out. I would totally be able to understand another human (a quality they seem to lack) tell me I don't know what it is but we will find out together. But when I am vomiting for hours and in pain, my liver enzymes are a mess and I have a positive cancer marker test and I am told it is all in my head, geesh I know some super duper nut cases and I don't think they can do that to themselves. So everytime they mention my head I politely interrupted them and said they must have me confused with another patient because mine is all in the abdomen and sometimes around to my back and up into my breast. But back to you as for weight gain I have to say the complete opposite for me. I almost died from malnutrition. I became a literal skeleton. for someone who used to weigh 305lbs 10 years ago I usually weigh about 140ish I went down to 108 and it wasn't pretty. I still struggle. I do not have the sensation of hunger or thirst, they say it will eventually come back, I think it might be. I have a G tube in right now just incase there is a problem. The pain is there but I think it is getting better too. This has been a nightmare. It has been degrading and humiliating. I now have a nice healthy fear or doctors and find I don't say much to them anymore. I mean I do at MUSC because I feel safe to talk to them there about what is going on but it just isn't safe in Savannah but I have to keep saying the 4 letter word...P A I N Doctors run when they hear the word and it almost killed me......literally. It has truly destroyed my life. I don't recognize myself anymore. I woke up June 1, 2011 to a life that I do not recognize. It is awful. Even though it is getting better I need to find a way to deal with the anger and the hurt inflicted by those sworn to do the opposite. Good luck keep us all posted. We all can learn from each other.
I can't even get a N/J Tube or TPN and I am seeing a great doc who specializes in the biliary tract! I am 5'10" and 103lbs (scary thin!) and they will not give it to me. I have asked repeatedly. I am so jealous right now, I just know that if they gave me nutrition I would have more energy. Here I am a stay at home mom of a 3 year old, how can docs not think I need the energy?!
What was it that finally got your docs to give you the added nutrition?
What was it that finally got your docs to give you the added nutrition?
Reading this website is a little scarey to me... but a little bit of a relief. I just spent yesterday in Urgent Care for 6 hours. Had another bout with severe pain that sounds just like what you all are describing. About 10 months ago, the pain was so bad I almost went to the emergency room but told my primary care physician about it. She has known me for years and knows I don't frequent her office very often and don't like taking meds. We did all the EKGs, stress test on the treadmill eliminating heart problems. Then on to the Hydascan and unltrasound. By the time all these tests were all scheduled and the results all came back clear, the pain hadn't been around for a couple months so I just let it go.
Three weeks ago, it came back with a vengence, only for one day. The pain was so bad I did vomit. Then yesterday it came again. The Dr. at the urgent care didn't know what to think of the CTC scan since it didn't show anything he thought could be the problem so he set an appt with a surgeon to let him see the results. He asked me a thousand questions, looked at all the tests I had done 10 months ago and wants me to do another Hydascan. He said he will be totally shocked if it's not my gallbladder.
I sound like I'm at the beginning of the many journeys I am reading here. Same pain, different drs. Not sure what to do.
Make an appointment to see a gastroenterologist. If you still have your gallbladder then you could have gallstones. If your gallbladder has been removed then you may have SOD. Make the appointment and educate yourself as much as possible before you go see the doctor. Also, keep a journal about the episodes - how often, how severe, what you ate etc. The hardest part of SOD is that so many physicians are not very knowledgeable about it and there is no definative test for it. Best of luck to you- and remember...don't accept being told it's nothing or let a doctor minimize this in any way. With healthcare you have to be the squeaky wheel!
Jennifer323
I have an enlarged liver, dialated common bile duct and my gallbladder was removed due to functioning at only 13% (common symptom of SOD). I never got better after the removal. My duct was dialated before the removal (it is normal after the removal but not prior). My docs are thinking it's SOD. I haven't had the ERCP due to being a mother to a 3 year old. I have no one to take care of him if I get pancreantitis. It is the next step, though. I am so thin and wondering how you got TPN? I have asked a couple of times for it, also asked for a N/J tube. My docs will not give it to me. Won't give me a straight answer, either. What was it that finally got your docs to think you need it?
Oh yes, for VJohnson
I have seen 26 doctors (6 of them Gastros) in a 3 year time frame before I found a doc to finally admit something is wrong with me. All the other doctors said everything came back clear dispite the radiologists putting notes on my CT that my common bile duct was dialated, and a note on my MRI that my liver is enlarged. Mayo Clinic even ignored these findings!!!! On top of the fact I am in constant pain and have constant nausea!!!
Don't give up, docs could be flat out ignoring things they see.
I really appreciate your quick reply. I still have my gallbladder but am scheduled for another Hydascan to check gall bladder dysfunction. I just don't want to go under the knife for a "process of elimination" proceeding if the doctor is JUST not that sure.
And being treated for SOD doesn't seem to be the answer - I mean, some people here have done that and it has caused other complications. Thanks for your encouragement.
And being treated for SOD doesn't seem to be the answer - I mean, some people here have done that and it has caused other complications. Thanks for your encouragement.
Well, it makes you want to scream for "Dr. House". Thanks so much for your reply. If you lived nearby I'd help you with your 3 yr. old. I'll give updates to this sight. Hopefully you will too.