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Old 12-14-2009, 02:58 AM #1
WendyNZ WendyNZ is offline
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Default New member - going for surgery next month

Hi everyone

I've had MP for over a year now and I share your pain The cause is unknown in my case but it's possibly related to my chronic inflammatory arthritis (an auto-immune disease). I also had a hip replacement on that side 3 years ago.

I've had all the conservative treatments including steroid injections, Neurontin etc and I also had nerve decompression surgery in May 2009. That fixed it for 3 months and then the pain slowly returned, along with the numbness. The neurosurgeon I saw today says that sometimes scar tissue from decompression surgery recompresses the nerve and then the whole thing starts over again... So I'm having the nerve (the LFCN) cut (sectioned) next month and fingers crossed it will provide a permanent solution.

The one piece of advice I have for those newly diagnosed is to speak up and keep complaining about the pain - I have had nights when I'd go to bed and cry (because it's always at it's worst for me at the end of the day).

Best wishes,
Wendy
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Old 12-14-2009, 11:52 AM #2
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Welcome to NeuroTalk Wendy. I'm sorry you have so much pain with MP. I don't have it but I can offer hugs... I hope all goes well with the surgery and you'll get pain relief soon after. Keep us posted!

Take care,
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Old 12-16-2009, 01:22 PM #3
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Default Thanks Ewizabeth

Quote:
Originally Posted by ewizabeth View Post
Welcome to NeuroTalk Wendy. I'm sorry you have so much pain with MP. I don't have it but I can offer hugs... I hope all goes well with the surgery and you'll get pain relief soon after. Keep us posted!

Take care,
Thanks for your support I thought I should post here because MP seems to be uncommon and there are few online support places. I'll report back after the surgery...

Wendy
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Old 12-16-2009, 01:48 PM #4
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Lightbulb

I had severe MP for years after my C-section.

Finally Lidoderm patches came out and I tried those and it
put me into a remission. The numbness is even better now, 5 yrs after using them. I still get twinges if I overextend my thigh, but it is for the most part...sleeping.

I used a patch cut in half and put over the exit of the nerve at the top of the thigh and to the side... for 2 weeks in a row, and the nerve stopped going crazy and calmed down finally!

I think surgery is a last resort. But if you have tried Lidoderms and failed, I guess that is all that is left.

Mine was very painful... like 100 bee stings all at once!
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Old 02-22-2010, 04:04 PM #5
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Default mp/lfcn surgery

how does your leg feel now?
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Old 02-23-2010, 03:32 AM #6
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Question MP/LCFN surgery

Hi.

Well, I had the surgery a week ago and the jury's still out: I had decompression surgery by an orthopaedic surgeon 8 months ago ("surgical release'') and this time the neurosurgeon who was going to sever it actually couldn't find the nerve - it must have gone into hiding!! He spent over 2 hours trying to find it so I still have some residual pain at present at the wound site.

But so far the burning thigh pain has not returned so maybe all the digging around may have helped - you can probably tell I'm am optimist...

I wouldn't contemplate surgery lightly but am only 44 and have had this pain daily now for over 2 years now and can't face the prospect of another 40 I'll post again when the healing's completed.

Wendy
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Old 07-14-2010, 04:56 PM #7
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Wendy,
I would love to see an update to your post! I hope this last surgery gave you lasting relief. I am in tears or near screaming to the walls when I try to sleep at night. I can't really talk to anyone about it because they don't understand and it seems to be rare? I am 5'4" 124 lbs, never wore restrictive clothing, but have had past abdominal surgeries. It really doesn't matter to me how I developed this, rather my goal is to be able to live with it! Tried Neurontin, Cymbalta, and Lyrica but can not tolerate the side effects. I feel so helpless...will begin PT next week.

I would like to hear a "success" story on MP!
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Old 07-19-2010, 03:13 AM #8
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Hi Wendy
Where in New Zealand are you and how are you now ?

J, Christchurch
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Old 05-22-2012, 09:02 PM #9
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Default Still there?

Where did you have surgery

I've had MP for over a year now and I share your pain The cause is unknown in my case but it's possibly related to my chronic inflammatory arthritis (an auto-immune disease). I also had a hip replacement on that side 3 years ago.

I've had all the conservative treatments including steroid injections, Neurontin etc and I also had nerve decompression surgery in May 2009. That fixed it for 3 months and then the pain slowly returned, along with the numbness. The neurosurgeon I saw today says that sometimes scar tissue from decompression surgery recompresses the nerve and then the whole thing starts over again... So I'm having the nerve (the LFCN) cut (sectioned) next month and fingers crossed it will provide a permanent solution.

The one piece of advice I have for those newly diagnosed is to speak up and keep complaining about the pain - I have had nights when I'd go to bed and cry (because it's always at it's worst for me at the end of the day).

Best wishes,
Wendy[/QUOTE]
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Old 09-03-2012, 12:22 PM #10
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Default Meralgia Paresthetica (LFCN damage)-? re Nortriptyline

Hi All,

I'm new here, am 63 and am looking for your experiences re treating Meralgia Parestica with Nortriptyline.

Mine MP is a result of abdominal surgery (woke up with a numb thigh). It has been determined to be permanent by the top neurology/pain management group here in Albany NY (after 18 months of no improvement). I was told that my LFCN nerve was injured during surgery either by 1) it being stretched-very likely, 2) entrapped-less likely, or 3) severed-very unlikely... And no imaging test can determine the exact damage. I have the numb spots, prickly spots, shooting pains, and can't stand to even put lotion on my thigh.

I'm quite anti-medication and only used anti-inflammatory meds for the first month with minimal relief and was worried about taking them because I also have an acid reflux problem. So I decided to brave the gabapentin that was prescribed....and it worked. I started out with 300mg/day and worked up to 1500mg/day. I hated the side effects of it though -- very hyperactive, irritable and non-stop talking. So I decided to wean down to a tolerable level which ended up being 500mg/day -- just couldn't miss a dose though without the sharp pains starting, and I'm not that much less irritable either :-).

I had one nerve block which did nothing. And the highest neuro/pain doc said those blocks rarely work for permanent relief, if at all -- that the LFCN is too big. He also said he wouln't recommend any of the remaining solutions (additional blocks, radio frequency ablation, severing the nerve surgically, etc) -- they have been clinically proven to have high chance of causing worse pain or further complications. He said that medication is the better gamble, and if I'm still having a problem with gabapentin side effects, he would like me to try weaning down off that and start taking nortriptyline (a supposedly mild antidepressant that works on some people for nerve pain also).

I tried the nortriptyline for about 3 nights and even though it's suppose to make you sleepy I was awake about 2-3 times during the night very irritated by dry mouth and dry eyes. I gave up on it because I was going on vacation and am now thinking about trying it again. SO....DOES ANYONE HAVE EXPERIENCE WITH NORTRIPTYLINE working for MP and having the side effects of non-sleep and dryness diminishing -- if so, how long after starting it? I read a few reviews about it also making you sick if you drink alcohol with it, but am wondering if only a few cocktails occasionally still can cause you to get sick???

I hope my info is useful and am anxious to hear back from someone successfully using nortriptyline. Thanks for reading my story.
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