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Author Topic: Cryoablation. Neuralgia  (Read 4789 times)

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Offline hubes

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Cryoablation. Neuralgia
« on: September 18, 2013, 12:10:04 AM »
Hello,
I am about to have cryoablation for saphenous neuralgia. There are a few posts from a few years ago on this topic but non active
I am at the end of the road on treatments for post acl IPBSN neuralgia incl 2 neurectomies and pulsed RF, most of the alternate treatments plus drugs plus plus. In line for spinal stim.
In need to connect with someone with similar problem to make me feel some hope!!!

Al

Offline fire535

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Re: Cryoablation. Neuralgia
« Reply #1 on: September 18, 2013, 08:01:12 PM »
Did you get any relief from the neurectomies or pulsed RF. 

Offline missmyknee

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Re: Cryoablation. Neuralgia
« Reply #2 on: September 20, 2013, 03:42:38 AM »
I posted a reply to your same question in the General section. Here is a link to that reply:

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=52347.0

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline hubes

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Re: Cryoablation. Neuralgia
« Reply #3 on: October 14, 2013, 09:49:30 AM »
No. Rf made it worse. Neurectomies either only brief relief or bizarrely , the nerve immediately proximal to it flared up .i am at wits end, first cryo no help , then am heading towards spinal cord stimulator . Is there anything else I should be trying? I'm going crazy!!

Offline MyKnee2010

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Re: Cryoablation. Neuralgia
« Reply #4 on: October 15, 2013, 12:40:18 AM »
Hi,

I am in the same boat as you pretty much. I had bilateral saphenous nerve transection a couple years ago. That helped but I have since had a lot of other nerve pain. I had a neuroma excised on medial side of knee this past January. That led to other issues which have now cleared up but now the nerve pain in that area have come back.

I am also in line for a spinal stimulator. I don't like the idea but I need to do something to help with the pain until I can find an OS to take a look in my knee to see what is causing excess fluid to be produced. That fluid causes swelling which presses down on the nerves all around my knee causing the nerve pain. At least, that is my theory which seems to make as much or more sense than what some OSs have come up with.

My pain med doctor says I have something like RSD but it's not RSD & it doesn't really act like RSD except I have pain & swelling. That doesn't make sense to me. I can't see that it would be RSD without the most likely symptoms of temperature changes, & skin color changes. Basically, I think the doctors don't care & feel that the spinal stimulator would take care of some of my pain so then I would hopefully go away. Not going to happen - I'll continue researching & talking to doctors until I find one who can really figure out my problem.

I have an appointment in November for a guided sympathetic nerve block. I am hoping maybe I'll get some at least short lasting relief but we'll see. If it works, it would tell the doctor what to do as far as the stimulator. If it doesn't work, they'll have to try something else. Maybe at that point they would have to entertain the idea that maybe there is something really wrong in that area.

Anyways, I hear you & understand where you're coming from. Nerves can be really rotten to you. I am really, really sick of nerve pain after having dealt with it now for the last 5 years. I have been out of work since last January because I hurt so much. I am hoping if I do the spinal stimulator, I can maybe get my life back to something closer to normal.

Good luck & hang in there! I still believe there are solutions to our nerve problems!

Offline missmyknee

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Re: Cryoablation. Neuralgia
« Reply #5 on: October 16, 2013, 05:06:31 AM »
Hi myknee

Did you know you can do a 5 day tryout of the spinal cord stim ?  The stim has been recommended for me too but with my scar tissue proliferation ,I am not jumping into it. I don't need to battle it in my spine too !

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline MyKnee2010

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Re: Cryoablation. Neuralgia
« Reply #6 on: October 16, 2013, 12:48:12 PM »
Hi Pam,

The pain doc said they'd do a temporary spinal stimulator once they determine which nerves are the main culprits. If the temp stimulator works & I decide to go ahead with it, then they'd do the real stimulator. I just don't like the idea of covering up the pain instead of trying to fix the problem.

You've described your neuromas as peas under the skin - do you know if they are always like that? I just ask because I've never had any neuromas that I can feel. Also, have you had any neuromas excised & then had them come back? If so, do you remember how long it took for them to come back?

I had a neuroma excised the end of January & now it hurts just as bad as it did before - but I still can't feel anything there. I can feel areas where the pain is severe but no bump.

How are you doing with your pains? I've followed your case for quite awhile now & I think it's amazing you can carry on with all you have to deal with!

Thanks,
Phoebe

Offline missmyknee

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Re: Cryoablation. Neuralgia
« Reply #7 on: October 18, 2013, 04:39:16 AM »
Hi Pheobe

Yes, my neuromas came back after excising and I developed new ones. I was told sometimes the ends of the nerves that where embedded in muscle, could work their way out, thus needing to be embedded again. Also after one nerve is ,  nearby nerves can become irritated. I have 20 neuromas in my knee and can feel them. Anywhere from BB size to pea size. They become so wrapped with scar tissue, that I can feel them and mark with surgical marker. My PM doc can feel them too. I still get all 20 injected, each one injected with spinal marcaine because it lasts longer than lidocaine. I also get a saphenous nerve block and tibial nerve block and 2 areas to the distal tibia , where I have a plate and 8 screws from hardware, when I broken my tibia, poking thru the skin and thick scar tissue...so in all 24 injections once a month. Unfortunately it only lasts 3-4 days , rarely beyond but worth it just to get some short relief in those areas. The lateral foot does not get any relief.

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline hubes

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Re: Cryoablation. Neuralgia
« Reply #8 on: October 31, 2013, 05:39:20 PM »
Hi Pam and Phoebe,
Well I've had 2 cryo ablation s now. Must say this doctor and I really were able to find the little branches with ultrasound and me using the nerve stim. Cryoed 4 branches ...day 3 4 and 5 really sore now settling. Really hoping nerves are dying ...if not I guess it's nerve root stim. it's not curing problem as you said but maybe by over riding it for a while it will settle down. no one really knows why these nerves get like this ...why some people like us get neuromas when nerves are cut while the other 99.9%of the population just gets harmless numbness.
Al

Offline missmyknee

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Re: Cryoablation. Neuralgia
« Reply #9 on: October 31, 2013, 06:33:27 PM »
Hi Al

I hope the cryo will allow you many months of relief, from your nerve pain.  :)

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline hubes

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Re: Cryoablation. Neuralgia
« Reply #10 on: April 07, 2014, 07:18:05 PM »
Well, the update is that the cryo did not help. The nerves just got irritated I have had two trials of nerve root stim that really didn't help very much and am now in line for something called DRG stim..a new type of nerve stim in the dorsal root  ganglion. Be very interested if anyone has heard of this or knows anything about it.
Al