Freezing of nerves for RSD

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shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/22/2008 9:25 AM (GMT -7)   
Hi everyone,it has been a while since i last visited with you all.
 
Since it's been a while, let me update.
 
I was 5yrs old (now 35) when i was run over by a ride on lawnmower. I had severe damage to the foot/leg, lost a toe to gangreen. Over the yrs, i did have some pain, but it was tollerable. about 9 yrs ago, i began having severe pain. I was dx with RSD and severe nuropathic issues, along w/ severe arthritis in the joints, bone spurs, ect. I was put on pain meds and started getting lumbar sympathetic blocks. They work well for my RSD pain, but am having more pain and it does not last as long as it used to (blocks last about 1mo now).
 
My PM doc is suggesting that i freeze the nerve. I have never heard of this. Does anyone have info, has anyone done it.  Will the foot be numb afterwards? Is it done the same as teh blocks? or is it an "open" surgery??
 
Thanks in advance for your VAST knowledge everyone! Shannon
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13476
   Posted 7/22/2008 9:32 AM (GMT -7)   
Hi SHannon glad to see you back but hate to hear you are having such a bad time. I have not heard of freezing a nerve. I have had Radio Frequency done on nerve endings which is done by heat. I had a good result with both my neck & back. Have you tried google search about this? I would be calling my dr and asking someone there what this procedure is all about. Please let us know. Hugs, Susie


Moon112744
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/22/2008 9:54 AM (GMT -7)   
Hi there! I have RSD, as well (see "23 y/o female with RSD" post). I would be careful with cryosurgery and nerve freezing, depending on the nerve they are looking at and why. If it is a motor nerve, there is reason for caution (like in my case). Is there a structural cause for your RSD that can be seen by tests like MRIs? Cryo would have a great effect if that were the case. For example, scar tissue is compressing a nerve and making it "angry," therefore, you kill that nerve to hopefully stop your RSD.

It's so tricky... Your doctor would know best, but make sure you educate yourself, too.

Good luck!

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/22/2008 12:04 PM (GMT -7)   
Hi Shannon: I agree with MOON be careful with RSD you could be opening up a Pandora's box filled with even more pain. Sorry wish i good write good news.
I used to be heavily involved in a support group for RSD and have seen this disease destroy limbs and people's lives due to Doctors who do not understand how to treat this pain monster. Best of luck, Tom
Tom Lasko


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/24/2008 4:32 PM (GMT -7)   
Thanks everyone! We have not decided to do the freezing, but my PM mentioned it on my last visit....I didn't really ask alot of questions, but will def. drill him about it next month when i go for my follow up.

This foot has just gotten progressivlly worse. When i originally had the accident (30 yrs ago), the ortho said that we should NEVER open that foot again for any surgical intervention...I know he is right w/ that , and so , sadly, im stuck with the bone spures that are growing toward the ground at the ball of my foot. Kinda makes standing painful KWIM...

I also dropped a large/heavy shampoo bottle on the foot a few months ago and have had alot of pain from that, so we are going to do an xray to make sure i didn't fracture one of the toe bones...I did tell him that my pain level as a result of that was pretty bad and i didn't think the dose of percocet (5mg 3x a day) was helping me. He was actually quite unsympethic and told me that he would not raise my dose. He said that, that is when we start running into problems resulting from the pain meds (ie, constipation, ect)...it sorta rubbed me wrong....Thankfully i am manageing, but it makes me worry that in the future if i REALLY needed a med increase that he would not be open to it...I have been w/ the PM for 8-9 yrs now, and there is not really any other groups in my area, so im sorta stuck no matter what.

He did add volteran?? gel, which i will try tomarrow. And i already use lidocane patches (12hr on 12hr off), which seems to help alot to.

Anyways, i just have alot of anexity about it all, as when it first started acting up, i spent 3mo in a wheel chair cause i couldn't even rest the foot on the floor it was so painful...I have two kids and that is just NOT an option at this point. I just don't know what to do anymore...
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/24/2008 7:48 PM (GMT -7)   
Shannon : did You mean Pain Doctor groups or support groups for RSD ?? I met with so many women that had RSD in their feet and also from carpal tunnel surgeries that failed. Makes me wonder ? If You need a referral to pain or support i am working on putting together a list : State by State of Caring Doctors and support groups for each type of problem. Please advise if I can help for not being able to walk drives me up my walls. God bless, tom
Tom Lasko


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/25/2008 4:00 PM (GMT -7)   

Hey Tom, thanks for the reply! I mentioned my PM (pain management doctor)...i have not joined a RSD support group, but maybe it's time...Im in miami, florida if u have any info on a group in my area??

Anyways, thanks again Tom!


2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/25/2008 9:09 PM (GMT -7)   
Hi Shannon: you made the first step towards dealing with RSD simply by seeking out others with the same disease and sharing tips and medical information is worth it's weight in Gold. Also, I guess by now your social life will suffer ?? You will have friends at the support group that understand the pain and insurance company complications so you will not feel like it's You against the world PLUS you will always have me and all the other great members here to help in any way we can.
I will send out a bunch of emails asap and advise You with the results. At least you live in a high population area so it should not be very hard. God bless, you friend in pain and life Tom
Tom Lasko


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/26/2008 7:09 PM (GMT -7)   
Thanks again tom!

Thankfully, my family and my friends have been very understanding. I have select few friends who know that i am not well, they know that plans may need to be changed/cancled...they never get mad at me...im very thankful for that.

I would love to be in contact tho with people who have RSD and can help me come to grips w/ what is happening w/ my body...

anyways, thanks again for reaching out! hugs, shannon
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/26/2008 8:53 PM (GMT -7)   
Hey Shannon: Have Your ears been burning ? ? Lots of talk about ya in the RSD world, since i have RSD symptoms such as burning,weakness. pain, but not "true" RSd
I kinda back off the the Chat rooms and attending RSD meeting. I was very pleased with recieving over 100 emails about you and I.
Since i do not know personal information, email etc. I can only give you their websites and simply email them and a wealth of information and mostly a lot of understanding and love will come. okay:www. rsdinmotion.org starting a new support group in Miami. next one in ST Lucia ?? rsd-fightingback.org
or simply Google RSD Support Groups in Florida. you will see your problem is widespread and years ago was resolved by cutting off the limb that was causing the pain, hair loss to the limb and the muscle loss of the limb.
you will find Doctors, family or general docs plus specialists that "know" how to deal with RSD which is usually nerve blocks and also ketamine infusions.
there are solutions to many RSD problems. If for any reason you do not get what You need PLEASE email me at painkiller@healingwell.net and k9partnersforlife@inbox.com since i do German Shepherd rescue i constantly monitor the K9 site. Your friend in burning pain, Tom
Tom Lasko


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/29/2008 4:26 PM (GMT -7)   
Hey Tom , thanks for the websites, i will check them out asap!!! I will check out the one in Miami....the port st. lucie one is about 3 hrs from me, so, that one is out...

I will be interested in doctors in my area that know how to treat rsd....My pain management doc already does lumbar sympathetic blocks (nerve blocks) and we do use ketamine during the anesthiea when i get my blocks. So, obviously my PM doc is doing the right thing....just sux that the blocks are starting to not work as long.

ps, i grew up w/ a german shepherd named Thor (god of thunder, i think)....he was a great dog...good for you to help rescue them!
Thanks again for the help
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/29/2008 6:53 PM (GMT -7)   
Shannon : Out of all I have been thru I found the RSD Support people simply great. I am ashamed of myself for not attending more of there meetings
If for some reason you are not happy PLEASE let me know asap. After I recieved the emails of the sites i sent You, I Googled them and there are many more groups that were not apart of the ones i belonged to. Also please go to more than one meeting or attend a social event for there are always people who do not make all the meetings and that one person could really help/ great friend.
Please stay in touch Your pain buddy, tom
Tom Lasko

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