Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-25-2010, 05:35 PM #1
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Default Ileo-linguinal nerve entrapment

I went to the Surgeon yesterday and I am going to wear a tens unit for awhile to see if it helps with this pelvic pain I am having. He is leaning toward surgery to cut this nerve. He thinks it is what is going on with me.

This is about the 5th Dr. I have seen about this pain and I really like this guy and I do believe he is determined to help me even if he has to do this surgery.
It doesn't hurt that my Gyno is in the same office and he is fed up with me not getting the right help so he is encouraging this Surgeon to help me.

Have any of you ever heard of this problem? He thinks that I have adhesions causing this problem. He said it would make the area numb but it should help with the pain.

Any ideals on this?

Thanks for the input.

Ada
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Old 05-26-2010, 04:40 AM #2
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Smile Please get a 2nd opinion

Quote:
Originally Posted by dreambeliever128 View Post
I went to the Surgeon yesterday and I am going to wear a tens unit for awhile to see if it helps with this pelvic pain I am having. He is leaning toward surgery to cut this nerve. He thinks it is what is going on with me.

This is about the 5th Dr. I have seen about this pain and I really like this guy and I do believe he is determined to help me even if he has to do this surgery.
It doesn't hurt that my Gyno is in the same office and he is fed up with me not getting the right help so he is encouraging this Surgeon to help me.

Have any of you ever heard of this problem? He thinks that I have adhesions causing this problem. He said it would make the area numb but it should help with the pain.

Any ideals on this?

Thanks for the input.

Ada
Hi Ada,

Sorry to here of all of the pelvic pain and the suffering you are doing.

I had a ulnar nerve entrapment which is the main nerve that runs down your entire arm and I believe is the biggest nerve in that area. Anyway when I had it done and my problem is completely different than yours but what struck me is that your doctor said it would be "numb". Well let me tell you that is the most uncomfortable feeling not painfull but weird. My doctor also explained in detail to me and my husband that in dealing with nerves and nerve surgery,they call it vascular surgery,it can be a very tricky area of surgery and can come with a high rate error. I would get a second opinion, you mentioned in your post that this is your 5th doctor but I mean an opinion by doctor who does this type of surgery in the pelvic area.

I wish you the best. Please don't rush into nerve type surgery. We all want a quick fix,but after all I have gone through what I have discovered it's best to step back take a breath before you make any decisions.

Good Luck,

Gabbycake
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Old 05-26-2010, 06:45 AM #3
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Default Of course this makes common sense

Sounds like you found a guy who knows his stuff!

Surgery is always scary, but listen to the common sense in it all. Of course there's a reason he wants to go in and cut out all that nasty damage. I'd check with any other doctor you trust locally before going under the knife, but as long as you don't hear about this guy being banana's, it looks like it's time they go in and clean out the mess that's causing you pain. While the procedure might sound invasive, believe it or not, it's an option a lot of us wish we had.

You've got a few hard weeks ahead, but it sounds like you're headed the right direction. Wow, talk about a great future! Bob.

Quote:
Originally Posted by dreambeliever128 View Post
I went to the Surgeon yesterday and I am going to wear a tens unit for awhile to see if it helps with this pelvic pain I am having. He is leaning toward surgery to cut this nerve. He thinks it is what is going on with me.

This is about the 5th Dr. I have seen about this pain and I really like this guy and I do believe he is determined to help me even if he has to do this surgery.
It doesn't hurt that my Gyno is in the same office and he is fed up with me not getting the right help so he is encouraging this Surgeon to help me.

Have any of you ever heard of this problem? He thinks that I have adhesions causing this problem. He said it would make the area numb but it should help with the pain.

Any ideals on this?

Thanks for the input.

Ada
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Old 05-26-2010, 07:27 AM #4
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Default Hi,

Gabby,
I had ulner nerve surgery on my right elbow, rotator cuff surgery twice, triggerfinger surgery, and thoracic outlet surgery all on my right side. I have been lucky to have good Drs.

The Drs. I have seen for this has been two other Gynocologist, one pelvic pain Dr, my Gynocologist I have had for 8 years, and several in Denver. Actually it's been more then 5. My PCP gives me triggerpoint injections for the pelvic pain. The Denver Drs. put 28 shots in my stomach which was experimental. No diagnoses. The pelvic pain Dr. said he'd leave it up to my PCP to deal with the pelvic pain, the others were idiots too. This Surgeon is the first one that has even offered to see me so many times and do everything he can for me. I know we take chances with all of these Drs. we see but I feel I have been blessed that I have found some of the best ones but it is like pulling teeth to find that right Dr. anymore. They are just so far and few between.

Does you elbow have a numb spot where you had the ulner nerve surgery? Mine doesn't.

This isn't a quick fix. I have been dealing with this for over 5 years and it has actually gotten worse.

Bob, I see my PCP this afternoon and I will discuss it with him. He is always hesitant about me having a surgery but he's there if I need him.

I do know what you mean by wishing it was an option others could have. I have been wanting this option for a few years now. I have been so frustrated with this due to seeing so many Drs. that knew nothing or did nothing. I have ran into some of those Drs. that are bananas.

Ada
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Old 05-26-2010, 08:06 AM #5
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Quote:
Originally Posted by dreambeliever128 View Post
Gabby,
I had ulner nerve surgery on my right elbow, rotator cuff surgery twice, triggerfinger surgery, and thoracic outlet surgery all on my right side. I have been lucky to have good Drs.

The Drs. I have seen for this has been two other Gynocologist, one pelvic pain Dr, my Gynocologist I have had for 8 years, and several in Denver. Actually it's been more then 5. My PCP gives me triggerpoint injections for the pelvic pain. The Denver Drs. put 28 shots in my stomach which was experimental. No diagnoses. The pelvic pain Dr. said he'd leave it up to my PCP to deal with the pelvic pain, the others were idiots too. This Surgeon is the first one that has even offered to see me so many times and do everything he can for me. I know we take chances with all of these Drs. we see but I feel I have been blessed that I have found some of the best ones but it is like pulling teeth to find that right Dr. anymore. They are just so far and few between.

Does you elbow have a numb spot where you had the ulner nerve surgery? Mine doesn't.

This isn't a quick fix. I have been dealing with this for over 5 years and it has actually gotten worse.

Bob, I see my PCP this afternoon and I will discuss it with him. He is always hesitant about me having a surgery but he's there if I need him.

I do know what you mean by wishing it was an option others could have. I have been wanting this option for a few years now. I have been so frustrated with this due to seeing so many Drs. that knew nothing or did nothing. I have ran into some of those Drs. that are bananas.

Ada
Hi Ada...

Not to be a downer but I have been told never cut a nerve, least not on purpose..When I had my TOS bilaterially surgery, my T Dr. cut my sympathetic nerve.. both sides.. he needed the room to get out my ribs... back then no question he had to do it...he was super careful WHERE he made the cut due to the ramafications from cutting the nerve ..my eye lids could have been dropped and tons of others issues..now 20 + odd yrs. later..RSD shows up...sympatheticomy...humm?? Just go cautiously...

Keep us posted..Kathy
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Old 05-26-2010, 08:52 AM #6
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Default Hi Kathy,

I have not heard anything good about a sympethectomy. I don't think they are done anymore, if so very rare.

He said he's go in and clean out all of the adhesions and if the nerve has to be cut then he will do it. I am thinking the adhesions are causing some of my stomach issues. They have gotten worse in the past 3 years.

He's trying this tens unit first. I am kind of leary about it due to it waking up more nerve pain. I was going to wait and talk to my PCP about it today but then I thought I need to wear it to see what happens. If it wakes up more nerve pain then I will be in my PCP's office getting shots until we get it calmed back down. It's like you are damned if you do and damned if you don't.

Thanks for the help.

Ada
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Old 05-26-2010, 09:25 AM #7
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Quote:
Originally Posted by dreambeliever128 View Post
I have not heard anything good about a sympethectomy. I don't think they are done anymore, if so very rare.

He said he's go in and clean out all of the adhesions and if the nerve has to be cut then he will do it. I am thinking the adhesions are causing some of my stomach issues. They have gotten worse in the past 3 years.

He's trying this tens unit first. I am kind of leary about it due to it waking up more nerve pain. I was going to wait and talk to my PCP about it today but then I thought I need to wear it to see what happens. If it wakes up more nerve pain then I will be in my PCP's office getting shots until we get it calmed back down. It's like you are damned if you do and damned if you don't.

Thanks for the help.

Ada
Ada..You are right..damned if you and damned if you don't..Turns out after my sympathectomy(s)..I was alerted never to cut a nerve..My thoraxic surgery, who at the time was highly thought of at the time..ended up with a brain tumor and no longer practices...

You will know the right route to take..follow you heart (and gut) feeling..You will be in my thoughts and prayers...Good luck at your PCP's today..update us..

Hugz, Kathy
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