I'll repost from page 111. I seriously suggest reading as much of this board as possible before meeting with Dr. UM and have all your questions written down. If you end up having to travel over 5,000 miles for surgery, you will need to be confident you are doing the right thing. It's not a minor decision.
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I'll break this email down so people can share it with others by bullet points.
1. If you are having pain in your groin, leg, testicles and lower abdomen and you have seen doctors here in the US with no real findings as to what is causing your pain, then you need to see a specialist to see if you have a tear in your abdominal wall that may be causing your pain. I recommend seeing Dr. Muschaweck for an Ultrasound.
2. The Ultrasound test Dr. Muschaweck does will be able to detect a tear in your abdominal wall and an approximate size of this tear. If you have a tear in your abdominal wall, it will need to be surgically repaired. I'll detail why.
3. If you have a tear in your abdominal wall off the bone, then it is NOT going to heal itself thru rehab. Here is why. The lower abdominal wall is used in almost every movement we all make during the day from getting in and out of bed, lifting small objects, exercising, getting in an out of the car...you name it, it is being used. When you have a tear in this location, this is the action that is causing your pain. When the lower abdomen is flexed, the bowel behind the abdominal wall is going to be pushing thru this tear almost constantly. If it is a small movement, the bulge of the bowel pushing through will be small. If you make a big movement really flexing your muscles, the a very large amount of your bowels will be pushing through this hole in your abdomen. There is no way anything is going to heal and reattach to the bone if you constantly have your bowels pushing thru it 100's of times a day.
A picture of my tear from the surgery is here. It was 3cm x 3cm.
http://www.flickr.com/photos/rasmikey/3629312074/
4. How do I know this is happening? While in Munich on June 9th doing my pre-op exam, I was meeting with Dr. Bergen (who was fabulous). She once again did the same test on me that Dr. Muschaweck did in New Jersey. She did the finger test looking for an inguinial hernia, OUCH!!! Then she did the ultrasound. During the Ultrasound, it is clearly evident that the bowels are pushing thru this hole in my abdominal wall. When I did a very strong flex with my lower abdomen and legs at the same time, a HUGE amount of my bowel was going thru this hole, then receded back when relaxing. When I did a very minor flex of just my abdomen while simulating getting out of bed, a smaller amount of the bowel was going thru the hole. It did not matter if the flex was strong or small, the hole was always being penetrated by my bowels. There is no way something is going to heal on its own with this going on daily. The exact opposite is going to happen! The tear is going to continue to widen as more and more of your bowels push thru the hole and then recede.
In my case the tear was 3 cm x 3 cm, a rather large tear that started small and got bigger over time. It was NEVER going to heal without a surgical repair.
5. Why the pain? The pain is caused because when the bowel pushes through the hole, it is compressing itself up against your groin canal and the major nerves that reside there. The nerves of course do not like this. Over time the nerves begin to get damaged and frayed. This sends signals of pain to our brain. The more this happens, the more the nerve gets damaged and the more pain we feel. The main nerve has branches that come off of it and go into our leg, groin, testicles and abdomen. These branch nerves are the first to get damaged. Once they are damaged, you will start to get a constant burning pain 24x7. There is no turning back at this point. Removing the branch nerve is the only solution to relieve the pain. If this compression against the nerve canal continues for a very long period of time, the main nerve will start to be damaged. At this point you can start to get pain in all of the above areas, as well as the hips and lower back. Thank God I got this issue resolved before getting to this point.
In my case the branch nerve that went into my leg, groin, testicles and abdomen was removed. The nerve pain is completely GONE now.
6. What are the risks of not getting the tear fixed. If you do not believe in surgery and think this issue can be resolved by rehab then these are the risks you run going forward. This only applies to people who have had an exam and been officially diagnosed with having a tear of the lower abdomen off the bone. Risk # 1 is that the tear will continue to get bigger and cause more bowel compression against the nerve over time resulting in more nerve damage. Risk # 2 is that over time the tear will get so big that one day you will flex strong and push so much of your bowels thru the hole that it will not recede. At this point, you have a major issue. The bowel is now a true hernia protruding into your groin canal and up against the nerve 24x7 until it is fixed. Mesh will be required at this point. I can't imagine the pain that would cause. Risk # 3 is what has happened to Albert, JC and others. The abdomen attaching to the pelvic bone is a major balancing point for our bodies. Once this balance is thrown off, you will start to put stress on other areas of your body, causing additional injury. Dr. Meyers is more of a specialist when it comes to this area so listen to those guys once you have past the point of just having a tear in your abdomen.
I hope that is some good information for you guys. Whether or not my tear got larger during my rehab will never really be known. The rehab did help me feel better and absolutely made my recovery and management of the pain after the surgery much better, so do it...but don't over do it if you know what I mean. Listen to your body, and then listen to your doctor when you go see them. I did not start any rehab until after I met with Dr. Muschaweck in early April. Discuss this with her.
Dr. Muschaweck's team in Germany is absolutely amazing. I could not have been treated any better. They are real pros. It is surgery, so get yourself mentally prepared if you decide to go that route. I would absolutely do it again. There is pain the first 48-72 hours, so you have to gut through it and get out of bed and walk like Dr. Muschaweck says. Take someone with you if you can and I recommend staying for 3-4 days after so you can address any issues if they arise and let the swelling go down before flying home.
Good luck to everyone on this board and I'll check back, but my days of posting are coming to an end. Mentally I am done and letting this thing go. I am going back to my core rehab and will slowly work back up to jogging and playing sports over the next 4-6 weeks. No need to get back any sooner than that. Slow and easy is how I will take it. I have come to far to go back now and no one pays me to play.
I wish all you guys on the board the best of luck. Go see a specialist and follow their advice and you will get better, it just takes some time and mental toughness to get there.
Mike in Va