New & need help
 

Hello,Im hoping someone can help me as I'm losing my mind,about 9 weeks ago a had a back fusion surgery for L4 & L5 disc in my back.I have since been having severe pain in my left leg and foot and was told by my pain Dr that it was CRPS.I have had about 9 blocks in my back but they are not working anymore.My pain Dr has suggested a nerostimulator ,my back Dr is against this.I have read about some of the peoples experinces on this website and now am scared to do it.Can someone out there please give me some advice ...As it is now 4 am and I have again woken up from pain.
I havent worked in over 9 weeks and basically sit around in pain wondering how to fix it.....Thanks,Val

Hello Val !
 

http://dl6.glitter-graphics.net/pub/...mc9qskhjhb.gif

You will find many folks here who care and can understand what you are dealing with right now!
Ask if you need help finding your way around......
The Spinal Forum may also be a good place to check
Also the SCS forum (i think you said you've already found it) will give some info......
The frustrating thing you are facing (besides the horrible pain!) is that your 2 different Drs are telling you 2 different things.
I'm so sorry you are dealing with this.

The SCS is a huge decision to make....but the good part about that is you can do the trial first to see if it is something you'd want to commit to.

I wonder why your Dr's aren't agreeing on this? Is one of the doc mentioning the possibility of RSD spreading?

You'll find many caring friends here, Val!
Help is on the way!

Rae
:hug:

P.S....
 

.......feel free to shoot that little yellow bird up yonder! I just realized how 'irritating' he seems to us at this ungodly hour.....AND in pain! :o
......Got a BB gun handy?
:o

.....i'm not much of a morning person......especially waking up in pain!
My heart is with you.....

Thanks for the quick reply
 

Rrae,
Thank you for the quick reply ,belive me I needed someone to reply at this ungodly hour,I personally think my back Dr feels a bit responsible for my problems because he did the surgery and as he has said "I have never had a patient that this has happened to" I LOVE LOVE LOVE my pain Dr he has been a god send from the 1st time I met him.He walked in my room as I was balled up from pain and told my husband you will never see your wife like this again.He has been a persisant support system from day 1.
Unfortunetly I have to go to the back DR to get the ok for any kind of treatment because he has to ok that my fusion is doing well at this point.
I have an appointment this afternoon with back Dr he made me go get a cat scan and a MRI done this week,so I will see what he thinks I should do.At this point I just want some relief.
Im currently takking Cymbalta and Lyrca and they dont help at all.The only thing that has help are the blocker shots.
Thank you again and Im looking forward to chatting with others .
Thanks,Val

SO glad you are in good hands and feel good about your doctors!
It does sound like he's looking out for your best interests!
Sure would be nice if he could give you something stronger to deal with the pain!
I wish you the best! ...others will be along.......:grouphug:

.....me....I'm off to work!.......gotta earn that dollar for the day :o

Val~

Good morning..I just read your thread and i am very sorry for your pain and your delima.. Can I say that you are off to a good start!! You have at least one important Dr. who you like and feel is good in your pain management.. if he has rSD knowledge hold on to him for your care as many Dr.'s are not aware... and also you did good by having the blocks...RSD is UGLY..it is an animal and you must be aggressive in your care, be your own advocate and read lots to educate yourself..I wonder about the SCS as due to your back issue already or just not the poitive outcome from it or the concern of spread. I have one in my back but not a positive pain tool for me..Sorry! But you must not stop moving forward..What works for some of us does not prevail for others so keeping trying eveerything they offer you for pain control...Earlier this is caught the more chance to have ain control..possible remission.. There is no cure, presently and we must try anything we can for pain as this can and does spread..Stay away from cold as that will only make your pain worse and know that we can help you with questions and concerns...We are all in your situation to a greater or lessed degree.. say a prayer that never hurts and stay with us as we hold eachother up in support... Explore every avenue and ask many questions about is next for you!

Painless hugz..let us know what else we can do for you...

Kathy:grouphug:

Hi,
 

It sounds like he's pushing the SCS pretty soon after surgery and injury. You still need more time to heal from the back surgery.

I have a friend that has dealt with what you are. Larry had back surgery, had a SCS put in and it caused spread. He's had the SCS took out and on meds and is now back to driving a truck.

I would right now listen to the back specialist and give yourself more time to heal more from the back surgery.

Methadone is a good pain med you might ask your Dr. about and also Lidocaine patches. Others will tell you of other meds they are on that might help with the pain.

Hope you start feeling better soon.

Ada

Hi. I am sorry for all your facing. The doctor who suggested the SCS does he deal a lot with RSD? It is a very hard choice because we all respond so different. I am big on 2nd or even 3rd opinions if possible could you see another anestesolgist to see what he or she feels in terms of the scs? If those meds are not helping could you talk about other meds? Or what dose are you on because sometimes it is not enough? I wish I had more answers for you and from my doctors I often get a conflicting treatment plan too. When that happens I do try to stay with less invasive and work my way up if need be.

New & Need Help
 

Neurostimulation can be a godsend to CRPS patients. There are two factors that will increase your odds of success with SCS - the depth of experience your physician has implanting SCS and the earliest possible point of intervention to your diagnosis of RSD. There was even one study that suggested that SCS can cause RSD to go into remission in some patients.

My RSD was so aggressive that I was bedridden within a year with two extremities involved at Level 10 pain. I was fortunate to be in the care of a top pain center but failed all treatments, including several experimental protocols. They recommended I be fast-tracked to SCS by, interestingly enough, not them, although they performed SCS, but by a top physician who was an expert in SCS.

They referred me to an expert who implanted a trial within two weeks. My permanent SCS has been installed for six years.

You will know instantly on the operating table when they perform your trial whether the SCS will mediate your pain. The trial is not perfect, but will give you an idea of the potential.

SCS does not eliminate CRPS, but it enables me to live with the help of meds. The faster you are able to pursue it, the greater potential benefit it has due to the way CRPS develops.

The other factor to be sure to evaluate are the two SCS vendors, ANS and Medtronix. Their products differ and one may be better for your long-term needs than the other. Typically, a given doctor only works with a single vendor. Vendor selector may impact your choice of surgeon. It is easy to become educated through the vendors websites and forums like this.

I wish you improved health. I hope that your pain doctor can help you on this path!

Hi Val and Welcome
 

Hi Val, I am so sorry you are having so much pain. what stuck out for me in your thread is the fact that you are not even healed from your surgery. Those back surgeries can take months or up to a year to heal as well as some of the nerves that go with it. You stated you had nine injections, is that since your surgery? If that being the case isn't that like putting salt on an open wound. Early intervention is crucial for this illness, but your doctors need to get on the same page. And then to add the SCS implanted! You need to get your pain under control and allow your body time to heal from the surgery. I don't know if this helps, but you have a lot of business going on with your body right now. Do take the time you need to heal so you can make the proper choice. God Bless

Jeanie

Skooz!
 

That is absolutely FANTASTIC information!! Sure wish we could copy this info over on to the SCS/Pain Pump Forum ! This would help to answer alot of questions being asked over there....

Thank you for this!
:hug:

Some releif
 

Hello all,
Thank you all for your responses...The day I posted that I went to my back Dr to get the results of my MRI and CAT scan.Well the Dr wanted to have surgery done again,I was very hestiant to do this ,I called my Pain Dr and he agreed that I should go ahead with the surgery (due to the fact that I had no muscle control in my leg)
So I did go ahead with the surgery on Friday and the Dr found a peice of bone in my cage where the fused my L4 & L5 ,also there was alot of scarring.
As of today my leg and foot are feeling a bit better just a little bit of burning and tingling.Im hoping it stays this way.As my first sign of burning and tingling wasnt until 5 days after my 1st surgery.Thank you all for your support I really appreciate it.
Thanks,Val

I hope the worst is behind you now and you will heal well

Foot pain back
 

Good Morning all,
Well its been almost 2 weeks since my last back surgery and slowly but surely the pain has come back in my foot .I was so happy after the surgery and thought this was the answer to my problem.
Im now more confused than I was before,I have spoken to another pain mang Dr and he agreed that I have CRPS.
So now what?If anyone can give me some advice on what to do now.Im thinking maybe I should try the pain blockers again and hope that they will last more than 3 days.This is sooo frustrating .I will try to get as much info as I can about CRPS but Im hoping I can get some info from this site as well.
Thanks all,
Val:confused:

Aww, Val, I'm so sorry the pain is returning. Your post last week was so encouraging and optimistic. :(

I'm so sorry. I do hope you are able to get something that helps with the pain. Be well and keep us posted on your progress. :hug: