My PCP's office called today, and my EMG results came back as "normal". Since Dr. Welby told me that he was sure what I didn't have, and discussed treatment for radiation induced lumbosacral plexopathy and possible cauda equina issues to boot, this is a little confusing. Not sure if I should be happy (no bad problems found) or unhappy (no bad problems found but symptoms persist).
Did some research tonight when I was able to sit, and found that EMG results on lumbosacral plexopathies are often inconclusive or negative due to the complexity of the lumbosacral plexus and the deep tissue and bony encapsulation of some of the pelvic innervation structure. Wondering if Dr. Welby's test was a waste of time and money. Or is it a ray of hope? At least I know I don't have peripheral neuropathy in my lower limbs to blame my burning buzzing feet and lack of sensation on.
My PCP's office said that my PCP needed to consult with Dr. Welby on treatment planning, so that is confusing also. What treatment planning is needed if testing is normal (even though my pain and weakness is continuing and not normal)?? This is where practical knowledge and medicine part company. All I know is that my pelvic pain has been terrible today - whatever is causing it!
As Danny Kaye said in the movie "The Court Jester": The vestle with the pestle has the pellet with the poison, the chalice with the palace has the brew that is true. Or does it?? Just remember that!!! So which is right - lumbosacral plexopathy or normal nerve functions? I think I just end up with the pellet with the poison every time!
Winny, so glad for a good report! Go with the ray of hope dear one! ((((Winny))))
ReplyDeleteJBR: Will try and be hopeful with a walk on the bright side today!
ReplyDeleteWinny,
ReplyDeleteMy experience with pelvic pain in regard to nerve issues is that it can be very difficult for doctors to pinpoint exactly what is going on.
My story in this area is extremely complex but I'll skip ahead to the "ending", so to speak.
After an inguinal hernia was ruled out and after having two CT-guided (pudendal) nerve blocks done, I finally broke down and agreed to have surgery to cut my so-called "entrapped nerve".
I say so-called "entrapped nerve" because of what happened next. I really, really did not want to have another surgery. (The January 2008 nerve-cutting surgery was my 7th abdominal surgery... 6 laparoscopies and 1 laparotomy).
The intended purpose of the nerve-cutting surgery was to do a nerve resection on the genitofemoral nerve. Long story short, the genitofemoral nerve and lateral femoral nerve were cut. (Don't get me started. No, I didn't consent to the 2nd nerve).
Now, the doctor who performed my surgery is an excellent doctor and surgeon who has helped me a great deal and has performed several of my surgeries. However, this last surgery did not go as planned.
I didn't think the pain could get any worse than it was when I finally broke down after 4 years of putting it off and had the nerve-cutting surgery. I was wrong. Really wrong.
In any event, the post-surgical trauma from my January 2008 surgery is expected by various neurologists I've seen to be a lifelong problem now. (The ONLY thing that has helped me get relief from the greatly increased post-surgical pain is acupuncture).
I just Googled lumbosacral plexopathy after reading your post and found some fascinating reading about femoral neuropathy and about the fact that surgery can induce these problems.
You had mentioned having had a hysterectomy? One of the things I was just reading mentioned that as one of the things that can initiate such nerve pain.
In any event, I don't know if you have this in your area or have ever tried it but there are physical therapists who specialize in pelvic pain. I have severe pelvic floor muscle dysfunction (likely induced by the surgeries I had for endometriosis, the endometriosis/scar tissue, or both).
Pelvic pain is complex and can be difficult to sort out. Do you have access to pelvic pain specialists in your area?
I have had 2.5 nerve conduction tests. The first 2 were for the peripheral neuropathy that primarily affects my feet. The 3rd one (which they had talked about on the phone as if it was going to be an EMG) was for my leg... the leg permanently damaged by the nerve-cutting surgery-gone-wrong. They had to stop the last test because, as the tech administering the test put it, she couldn't "torture me" anymore.
You see... I can barely tolerate the pressure of clothing touching my bad leg (the "botched surgery leg").
Feel free to contact me if you would like to talk about pelvic pain. I'm sure we would have lots to talk about.
I'm so sorry for your pain! Every day I sit at this computer, I am sitting on 3 fluffy blankets on top of my nice leather office chair.
I know what it is like not to be able to sit. :(
Hang in there!!!
Jeanne
Jeanne: so sorry you have these pelvic pain issues.
ReplyDeleteYes I have had a hysterectomy, but my pelvic pain seems to come from radiation induced nerve damage to my pudendal nerve (and probably the supporting ennervation). I High Dose Rate vaginal brachytherapy for endometrial cancer in 2004, and apparently I had a physicist that had problems with MATH and was a little over dosed. Not able to tell if the overdose or just my specific anatomy caused all the issues.
Have been told by some doctors that nerve stimulation would help the pain, by others that it would be a waste of effort. I'm just sorta waiting until I have no other options before trying anything in a surgical route, since most experiences I have found have been similar to yours - the pelvic pain doesn't really decrease EVER!
Yes, unfortunately with this part of the anatomy you can't stand, sit or lie down and get any degree of relief. Bummer on the botched surgery since now it seems to be your entire leg. owwww!
I do have narcotics I can take and muscle relaxers which help but then I am good for nothing. The narcotics are supposed to last for 12 hours, but have lately only been lasting for four hours but I am stubbornly not wanting to increase the dosage OR increase the frequency. But I find today I am sorta grouchy from the pain. OUCH!
Thanks for the message on Facebook, I have sent you one back! This is something women have but just don't talk about.
That is a bit confusing isn't it? What great news that the docs want to pull their heads together on your behalf! Rare :)
ReplyDeleteMigrainista: This is a spot where all the research on all the web won't help me figure out what is next. Guess I'll just have to be a patient patient. Not something I have a lot of practice at!
ReplyDeleteMy PCP is great! He's a young doc that came into the local practice to start a sports medicine practice (so he is really great with pain issues) but the doctor that ran the clinic (my old PCP) fell and had a stroke his first day there, so he became a general practitioner instead.