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Old 04-25-2008, 05:22 PM   #1
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Does anyone here suffer from adhesion pain?

I have "issues" with my lower back, sacrum area and that is the main pain being treated however, in the last year I have developed problems with adhesions. I have had 8 laparoscopies (belly button surgery), 3 laparotomies (full abdominal incision) and now the adhesions are rampant. My PM doctor is trying to treat "all" my problems but I find the meds don't really help with the adhesions. I'm just curious what others experience.

Thanks!

Cindy

 
Old 04-25-2008, 05:37 PM   #2
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Re: Does anyone here suffer from adhesion pain?

I firmly believe I do, and it may be the most painful condition I have - but not the one being treated.

My main CP issue is my osteoarthritic knees. They're both pretty much gone. However, I too have head abdominal laproscopic surgery and open abdominal surgery and I am sure adhesions are responsible for some of the severe pain I suffer. In fact, when I go down on pain meds, or neglect to take a dose, the very first pain symptom I feel is abdominal. I'm pretty sure it's from the gall bladder removal. Since the meds that I take for my knees also relieves my abdominal pain I don't complain.

How about you? And how did you come to this conclusion? Is you rdoc going to address the adhesions? If so, I'd love to hear more about it.

steve

 
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Old 04-25-2008, 06:35 PM   #3
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Re: Does anyone here suffer from adhesion pain?

Hi Steve,

In Sept of 03 I had an abdominal hysterectomy. Two months later I was having abdominal pain and was sent for for a CT scan. The scan came back as abnormal but the radiologist really couldn't say what he say. He called it tubulers. A month after that is when my back pain started full force. Actually, to back up, I had the worst back pain right after the hysterectomy and am convinced to this day that this surgery caused the problems.

Anyway, in Jan 04 is when everything started. I ended up having another laparoscopy in Feb 04 that turned into a laparotomy due to the massive adhesions. Since that time I could feel the adhesions but they never really casued me problems. In Nov 06 I had another laparoscopy to remove adhesions in hopes that that was what was causing my back pain. My bladder was tacked to my intestines, my intestines were all bound up etc. Since this last surgery I have had major pulling, tugging, pressure, pain in my female area. Sorry if I am embarrassing you but that is where my adhesion pain shows it's face.

I have been on soooo many narcotics, muscle relaxants etc and nothing takes away this pain that I have there. I now have a pain pump with fentanyl and still feel the adhesions.

I know there is nothing that can be done for the adhesions. If I have surgery to remove the adhesions it will only make more of them grow so I'm stuck (literally!!). I asked my PM doc about the adhesions and his hope is that the fentanyl will kick in. I also had a trial nerve ablation last week and the doc felt that might help as well. I'm having the radio frequency nerve ablation next Wednesday so I will specifically ask him about the adhesions.

What does your doctor say? What do you feel with your adhesions?

Thanks for asking!

Cindy

 
Old 04-25-2008, 07:09 PM   #4
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Re: Does anyone here suffer from adhesion pain?

Well this is what causes a lot of problems on my right foot if adhesion are the same thing as scar tissue, which I believe that it is. When I was recooperating from one of my foot surgeries, there was alot of scar tissue that formed, and then when the nerve went to start to grow back it was pretty much just slamming against the scar tissue with no where to go and that is what causes all of the nerve pain in that foot. So yes I do suffer from pain due to scar tissue. I have seriously thought about having another surgery where they go in take out the scar tissue and see if I have another neuroma in there but I am going to hold out. I want to see if this new podiatrist can get me out of alot of pain. Of course I need to get the money for the right shoes together first, cmon government surplus check hurry up

brian

 
Old 04-25-2008, 07:14 PM   #5
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Re: Does anyone here suffer from adhesion pain?

Quote:
Originally Posted by cindyx4 View Post
...What does your doctor say? What do you feel with your adhesions?

Thanks for asking!

Cindy
Wow!

I am so sorry you are suffering like this. I know it must be awful, because my adhesions are much less extensive and still painful.

I haven't broached this with my doc yet, so I don't have his thoughts.

Feeling the adhesions - When I wake there's not much discomfort, almost as if rest has calmed things. As the day progresses I get stronger and stronger pain right in the middle of my abdomen, about 2.5 inches below the bottom end of my sternum. By afternoon or evening the only relief I can find is to lay in a fetal position and not move at all. But the opioids for my knees makes this livable (believe it or not, my spell checker says this is the correct spelling for livable). W/o the narcotics I would be miserable. It's the biggest reason I fear ever stopping the meds.

I'm afraid to take this up with my doc because I don't think this would be as believable as my knee pain, and wouldn't be treated as aggressively. Plus, I really don't want to endure all the testing that would be required to validate everything. I realize this may sound real strange of me, but it's how things are.

steve

 
Old 04-25-2008, 07:42 PM   #6
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Re: Does anyone here suffer from adhesion pain?

Quote:
Originally Posted by brianpain33 View Post
Well this is what causes a lot of problems on my right foot if adhesion are the same thing as scar tissue,
Brian, scar tissue and adhesions are indeed the same thing. The scar tissue can wrap around nerves, ligaments, muscles,intestines etc and cause a multitude of problems. Have you tried neurontin yet? I had surgery on both of my feet and legs (like tarsal tunnel) and remember my surgeon saying he used neurontin a lot for nerve pain.

I really hope your foot surgeon comes through for you! And that check too!

Keep in mind that if it is scar tissue then the LAST thing you want to do is have surgery again. Your doctor could go in there and clean up all the scar tissue, free the nerve but then the scar tissue goes rampant. There are gels and such that can be placed in a surgical site but they don't work very well.

Gosh, we seem to have a lot in common!

Blessings,

Cindy

 
Old 04-25-2008, 09:12 PM   #7
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stymie82 HB User
Re: Does anyone here suffer from adhesion pain?

Cindy, adhesions are my middle name. I suffer from adhesive arachnoiditis, which is scar tissue and adhesions in the spinal cord. Causes intense lower back pain and neuropathic bilateral leg and foot pain. I also have epidural fibrosis. Those of us who are prone to make scar tissue can have lousy surgical outcomes. My condition is not operable so at least no further invasive damage will be done to my poor spine

 
Old 04-26-2008, 11:21 AM   #8
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Re: Does anyone here suffer from adhesion pain?

Hey Cindy: I read your post and immediately realized that your situation is almost exactly like my sister-in-law's. She had a hysterectomy (uterine only) at 32, due to adenomyosis. She has since had her gall bladder, one ovary removed and 3 or 4 surgeries to "take down" her adhesions.

Because her husband was in the military, she has had a really difficult time with pain management. She has lived abroad and all over the U.S. and has had to change doctors many times. Several times, she has had to completely stop the pain regimine she was on and start all over again, with a new doc. Even when the one she was on, was helping.

Her adhesions are horrible. She is prone to keyloid scarring to begin with. They have affected all of her organs, her lower back and of course her pelvic area. She has found one thing that has helped her immensely with the pelvic pain. It is something called OB/GYN therapy. It is hard to find a therapist who has specific training in this area, but since her husband retired, the area they live in right now, has a practice that specializes in this.

I am not sure if you have ever heard of this, or if you have tried it, but I just wanted to let you know her story. There have been other modalities that have helped her as well, but I can't remember all of them at the moment. I do know that several of the pain management docs she has seen over the years have made it clear that her pain is "hard wired" and that there is nothing that can be done to "cure" it. They can really only do what they can to manage the pain.

Just wanted to let you know about her journey and if you have any questions, I can certainly ask her. Take care, cmpgirl

 
Old 04-26-2008, 11:33 AM   #9
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Re: Does anyone here suffer from adhesion pain?

Cindy,

This probably isn't news to you, but I have heard of docs using some kind of manual manipulation to break adhesions. It's done under sedation or anesthesia and some find success with it. I don't know if it caries the same risk as surgical repair and the automatic creation of even more adhesions, however.

It's such a rotten condition. Not long after my gall bladder was removed laproscopically, I suffered a small bowel obstruction. Adhesions was the cause. What a terrible experience that was. It was then that I learned that with every surgery, especially laproscopic surgeries, even more adhesions will develop. Even surgery to break adhesions. It's a no-win situation. And it's the only condition I've ever heard of, except for stage 4 cancer, that no matter what you do it will get worse.

I so wish I could go back to the day the surgeon talked me into the laproscopic removal of my gall bladder. To this day they still don't warn patients of the risk of adhesions. I realize that open procedures also cause adhesions, but as far as I know, laproscopic surgery is the worse offender. People should be warned. I loved it that I needed almost no pain control and got out in 24 hours, but if I had it to do all over, I would have opted for an open gall bladder removal. No question.

Best of Luck to you.

steve

 
Old 04-26-2008, 06:34 PM   #10
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Re: Does anyone here suffer from adhesion pain?

Cindy, your case sounds similiar to mine. I had numerous laprasocopy, one emergency full abdominal cut vertical, hysterectomy hoizontal (Yes, I have a "T" in scars on my abdomen), and then an adhesion clean up.

During my clean up, we found my bladder and intestines were adhered to the abdominal cavity (but everyone said I was fine and sent me to psychatrists). Dr. Jean Giles Tchabo in Northern VA did my OB clean up. He could not believe the scar tissue from the surgeries and edometrosis. He was in for a very long time - I believe it was over 6 hours. Fortunately I recovered and have not had a problem since. He said he literally scraped my insides and said he was shocked at the condition. I feel he literally saved my life. To bad he does not fix backs.

Abdominal adhesions are very painful and there is nothing you can do except take meds. Surgery is not a guarantee.

Good luck and you are in my prayers.

Last edited by ms_west; 04-26-2008 at 06:35 PM.

 
Old 04-29-2008, 06:36 PM   #11
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Re: Does anyone here suffer from adhesion pain?

Hmmm...I'm wondering about this manual manipulation. I remember reading about a physical therapist who does some kind of manual massage to the abdomen shortly after having surgery. Well, 8 weeks after. I've read that it has to happen after a surgery because waiting just makes the adhesions worse. Unfortunately, I am a year and a half post surgery. I wonder if there is anythign that still can be done?

Although, I have to say that since having my nreve ablation trial and having my pump switched to fentynal I haven't had any vaginal pain. I am hoping and praying this lasts!

Thanks for all the info.

Cindy

 
Old 04-29-2008, 08:57 PM   #12
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Re: Does anyone here suffer from adhesion pain?

Cyndi: It might help to see if you can find a good PT or a liscenced massage therapist to do myofascial release on you. It is used to help with my condition, chronic myofascial pain, but I know some people with adhesions have it done too. It is a process, but because they start out very softly and work up to a deeper massage, gradually as you can tolerate it, it wouldn't be as painful as full on deep tissue massage. Just a thought.... cmpgirl

 
Old 05-14-2008, 07:18 AM   #13
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Re: Does anyone here suffer from adhesion pain?

OMG! Just from reading the first couple posts I now honestly believe that I am NOT crazy! Hello all! This is my first time on this site and I am so glad I found you! I am a 31 yr old female who has been going through H*LL for the past 10 years.

It all started with ovarian cysts that just wouldn't go away, and would keep recurring. All drs said the best plan of action was to just let them rupture. Were talking tons of ER visits b/c each time I would honestly feel like I was dying. After years of this, the pain became so constant that I had 2 laparoscopies (the first one the dr. said I had nothing wrong) then 2 months later I had another dr perform same only to find that my fallopian tubes were about 10x too big and had to be removed. I was only 24 at the time, but since I could still have children in vitro I figured had to be done.

Surgery went well and I was OK for about 2-3 years. Then it all came flying back...after about 6-7 months of horrendus (sp?) pain the dr.s decided I had to have a complete hysterectomy there was no other way for me to live a "normal" life. So I gave up ever having children to hopefully be OK.

The dr. messed up in surgery and cut through my intestines, so I had to have a bowel resection during the hyster. I woke up with an NG tube in my nose -ugh! horrible! and was in the hospital for a week. I started to recover ok for the 6 wks following then started to get horrible abdominal pain again. I spent months with different dr.s and in and out of the hospital when one GI guy said it was c.diff and was treated for 6 months for that (it is HARD to get rid of). The other thing dr.s started telling me was that I had tons of adhesions and scar tissue from all my surgeries and that is what the pain was coming from. I finally started seeing a pain mgmt dr. and he was a saviour! I was actually able to work again. He had me on different combinations b/c it always seemed like one thing would work for awhile then it would stop. So I went from oxycontin for ER and roxicodone for breakthrough pain, then fentanyl patch for ER and roxi for breakthrough. These seemed to really work.

My husband finally found an adhesions specialist in Orlando (hour away from me) and I went to see him and he said he could lyse my adhesions but that I would have to quit smoking and come back in 6 months (apparently smoking causes more adhesions) I left the office bawling b/c I finally thought I had found someone to help me!! After a month went by I was in emergency again for non stop vomiting and intense pain and he moved my surgery up for like a week away.

He did the surgery, he removed my gallbladder then was going to just do a lap to lyse the adhesions, but when he went in, my intestines were sewn to the abdominal wall. So, I had to have another bowel resection and part of the wall removed. He says I will need the lysing every year. Only problem is surgery just causes more adhesions...catch 22!

That surgery was in August and I really haven't been back to any kind of normal yet. In Feb I found a new PM that offers the hypergastric blocks as well as meds. He also switched me to Opana from Oxycontin. Has anyone here tried it? It really in my opinion is much better that the OC's. Its oxymorphone instead of oxycontin it just seems like it works better to me. Although I have been on meds for almost 2 years now.

It stinks b/c the pain isnt gone, I have had too many dr.s calling me crazy, prescribing me ad, saying it was all in my head..when meanwhile I was always right when there was something wrong with me.

I just couldn't believe when I read the other posts on here that there really are other people like me out there. Thank you so much! I can only hope that they will finally figure out what is exactly wrong with me, or if its just I have to have a bowel resection every couple of years. You have given me so much hope!!! Thank you! SO SORRY for the long post!!!!

 
Old 05-14-2008, 07:48 AM   #14
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Re: Does anyone here suffer from adhesion pain?

I also have endometriosis and have had too many ovarian cysts to count. I just had my 7th abdominal surgery, ALL of it related to previous surgery. PT can help, as the more mobility you have in the areas of adhesion, the better. The pain is caused mainly by the natural stretching and pulling that are necessary for movement. One of my worst triggers is going from a sitting to standing position. Many of my problems stem from my pelvic ligaments being fused to my hip area.

PT can work by helping flexability in many areas, and allow the adhesions to stretch as much as possible. This is painful therapy, but it can be done if you have a good doctor to treat the pain while you are doing it. I had to take pain meds before AND after treatments. DO NOT have more surgery. You will just end up with more adhesions and serious complications from numerous abdominal surgeries.

I hope this helps someone! Good Luck! I know the pain and suffering you all are going through, and it's life altering. Hang in there, and look into PT treatment.

Amanda

Last edited by butrfligirl28; 05-14-2008 at 07:54 AM.

 
Old 05-14-2008, 10:59 AM   #15
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forginon HB User
Re: Does anyone here suffer from adhesion pain?

Manders,

Welcome!

You have definitely found the right place. Please keep posting. You will find so much support here, and lots of good info too.

There is just no winning with adhesions. Until they find a way to remove or release them w/o surgical intervention we're stuck. Literally!

May I ask about the Opana? What dose did you settle on that you found to be better than the OC? I'm very curious.

steve

 
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