[bobber]

i started With this disease 6 months ago,,i t was only on my heel for 4months,,when i had total hip surgery [on the same leg] it has spread up the leg 3 weeks later and 1 week after that its migrated to the other leg as a mirror image,,,the npain started in the heel as well and is discloring the leg,,,i dont know when it will level off,,im throwing the kitchen sick at it and wiith meds,,and still waiting on a tens unit from 2 different dr,s to no avail,,,getting a tens units like pulling hens teeth! they dont call back,,,im new at this,,but ive found out thru my experience to be carefull about surgery,,its like pouring gasoline on a amber. sad thing with me is my hip is not healing right,,,so i got to throw the dice to see if i have the revision onmy hip in 6 weeks, because the cup is loose..or is the cup fine and its rsd in the hip,,im 8weeks post-op,they exray cant reveal,,,but if it doesny get better,,,the dr is swapping out the hip again in 6 weeks,,,talk about adding insult to injury,,,time will tell,,,my advice to anyone here,,be carefull with the surgery,,,you all know this anyway,,God will guide me,,,he has to for his name sake,,,thank you guys,,,with any advice,is well appreciaated,,,,,,,bobber,

[AintSoBad]

Bobber,
I'm glad to see you keeping the Faith!
I've not had surgery, so I can't tell you what to do, besides "Keep Prayin".

pete
Asb

[Mslday]

I'm sorry to hear of this rapid spread.

I highly recommend you find a doctor who can give you a continuous (possibly peripheral) regional anaesthetic block for a minimum of a week. I had one in Germany following surgery and it did the trick keeping the rsd at bay then.

You need more than a tens machine or oral meds to stop this beast in it's tracks.

MsL

[llrn7470]

Couldn't help but reply to your post.
I developed RSD post-op knee surgery in October. I have since returned to work (thank god for that), but it's been a rough road.
I use a TENS unit while working (I am an ICU nurse with access to a LOT of drugs, thus cannot take anything stronger or that will pop a drug screen.)
BE CAREFUL...regardless of the type of electrose I use, the RSD part of my leg develops patches of bleeding blisters-something between a burn and a rash-that is scarring my leg. Ironically, when electrode are placed above my RSD area and used-no problem. My pain doc says not to use it as my skin will break down and likely exacerbate my RSD, but I can't work without it and am waiting for "blessing" from my employer to take yet another leave for a spinal cord stimulator. (Already more than have been cleared to get one, but told that there is no guarantee that my job will be there once it's healed.)
Road test the TENS-it does give me some level of relief, but at a cost.

[bassman]

For a while I had a Pain Management doctor who was an anesthesiologist by training. There are probably more out there, since the combination seems to make sense. I do not know if it is possible (it will totally depend on the hospital rules) but if you could find an anesthesiologist who is also very familiar with RSD and have him do the surgical routine, it might help, it least with the recovery period.

Good luck to you,

Mike

[aj822]

Hey Bobber,
Understanding that everyone is different and at varying stages, I just wanted to put my two cents in on this subject. There was a thread a few weeks ago about this and it was talking about find a Anesthesiologist that knows RSD to assist with surgery to help minimize the RSD flare up after surgery. It was very informative. I have looked back and can't find it now (of course!). Maybe one of the other members remember this one and can you help find it.

Anyway, for me... I was told by my Ortho that I had to wait on my last knee surgery (final 3cm bone plug) until my RSD was under better control (12 mths before he will even consider it). He said that it could open a pandora box to my RSD and my Pain Specialist agreed. I currently have fluid under my knee cap and they won't drain it right now because they are afraid it will make the monster mad.

Since you feel that the RSD may be spreading and it appears to be full blown mad right now, you may want to really research and work with your doctors before the surgery to make sure you have done all you can to keep things to the minimum.

Just a thought from the peanut gallery!

[ali12]

Hi Bobber,

So sorry to hear that your RSD has spread so rapidly! I really hope that things start getting better for you soon and that your RSD doesn't spread any further!!!

I agree with you completely about being careful with surgery and RSD! I haven't had any major surgeries since RSD but the 2 supposidly 'minor' procedures caused a LOT of problems for me!!!

I was diagnosed with RSD just under 2 years ago when I was 12 years old. I developed RSD in my left leg in March 2007 after I fell and sprained my ankle and it took about 5 months to get diagnosed.

When I was initially diagnosed with RSD, my Pain Management Doctor decided to do a Guanethidine Nerve Block on me as he said it could reduce the pain in my foot.

The day after I was diagnosed, I went and had the block. Because of my age, my doctor decided to do the block under general anaesthetic as he said it would be too painful to have it done awake.

As soon as I woke up from the block and was told I was OK to walk after a few hours, I found that my legs weren't working! Everytime I tried to stand or walk, I would fall all over and was very wobbly!!

My doctor said that the problems would probably settle down but they didn't and has the days went by, things got worse and worse. It got to the point where I was wheelchair bound as I had lost all co-ordination in my legs. If I needed to go to the toilet or anywhere, my mum had to literally carry me otherwise I would fall.

After I had the block and the complications started to develop, my mum found an article on the internet stating that you should never inject directly into an RSD limb unless you absolutely have to. We didn't know that at the time so decided to go ahead with the procedure.

When we mentioned it to my doctor, he said that he had never heard that you shouldn't inject into an RSD limb and said he would never do it again to anyone else.

A few months after the block, I fell and the RSD spread to my right arm. I had to have intense PT to try and get that under control somewhat as my arm went into a fist and wouldn't open.

About 4 months after the spread, I developed an ingrown toenail on my RSD leg. We tried to ignore it the best we could but it became really bad and got infected so my doctor told me I had no choice but to get it removed.

I had the toenail removed a few days later and my dr did a ring block into the toe as it was supposed to reduce the pain. With the ingrown toenail removal though, I developed severe myoclonic spasms and my leg just bounced around in the air uncontrolably. My doctor couldn't believe how bad it was and in a desperate attempt to get rid of the spasms, tried lots of muscle relaxants with little relief.

My Doctor has told me and my mum that I have the most 'on edge' nerves he has ever seen and says that I should never have any surgery unless I absolutely have to (eg, for life saving treatment) as it will only make my RSD worse.

I hope you don't have to have surgery on your hip as I agree with you, I would never have surgery unless I absolutely had to, especially given the circumstances. Just wondering when you had your surgery, did your doctor do a block before and after? I read somewhere that a block before and after surgery could help with the risk of spread - though it isn't guaranteed to. I've also read somewhere that a Ketamine infusion/epidural could help so that might be something to look into if you haven't already.

Take care of yourself and thanks for posting this and making people aware of the dangers and risks involved! I am keeping you in my thoughts and prayers and hope you get some much-needed relief real soon!!

Alison.

[CRPSbe]

Originally Posted by bobber

sad thing with me is my hip is not healing right,,,so i got to throw the dice to see if i have the revision onmy hip in 6 weeks, because the cup is loose..or is the cup fine and its rsd in the hip,,im 8weeks post-op,they exray cant reveal,,,but if it doesny get better,,,the dr is swapping out the hip again in 6 weeks,,,talk about adding insult to injury,,,time will tell,,,my advice to anyone here,,be carefull with the surgery,,,you all know this anyway,,God will guide me,,,he has to for his name sake,,,thank you guys,,,with any advice,is well appreciaated,,,,,,,bobber,

You're still pretty new to RSD but you already know that surgery is a bad thing, good for you. I didn't. My orthopedist at the time didn't know I had RSD and went ahead with laparascopic knee surgery despite the discolorations and other symptoms I was experiencing. My entire leg turned a very weird darkblue / purpleish / grey-blackish color right after surgery, this was depending on how long I was upright which wasn't very long because the nursing staff ordered me to bed *right* *away*.

Be careful with any surgery that isn't totally necessary and where precautions can't be taken (and even then it's risky). I'd try and figure out first if there's RSD in your leg/hip or if it's because of the hip joint being out of place.

The very best of luck! I hope you get some answers soon.
Keep us posted.

[bobber]

Originally Posted by ali12

Hi Bobber,

So sorry to hear that your RSD has spread so rapidly! I really hope that things start getting better for you soon and that your RSD doesn't spread any further!!!

I agree with you completely about being careful with surgery and RSD! I haven't had any major surgeries since RSD but the 2 supposidly 'minor' procedures caused a LOT of problems for me!!!

I was diagnosed with RSD just under 2 years ago when I was 12 years old. I developed RSD in my left leg in March 2007 after I fell and sprained my ankle and it took about 5 months to get diagnosed.

When I was initially diagnosed with RSD, my Pain Management Doctor decided to do a Guanethidine Nerve Block on me as he said it could reduce the pain in my foot.

The day after I was diagnosed, I went and had the block. Because of my age, my doctor decided to do the block under general anaesthetic as he said it would be too painful to have it done awake.

As soon as I woke up from the block and was told I was OK to walk after a few hours, I found that my legs weren't working! Everytime I tried to stand or walk, I would fall all over and was very wobbly!!

My doctor said that the problems would probably settle down but they didn't and has the days went by, things got worse and worse. It got to the point where I was wheelchair bound as I had lost all co-ordination in my legs. If I needed to go to the toilet or anywhere, my mum had to literally carry me otherwise I would fall.

After I had the block and the complications started to develop, my mum found an article on the internet stating that you should never inject directly into an RSD limb unless you absolutely have to. We didn't know that at the time so decided to go ahead with the procedure.

When we mentioned it to my doctor, he said that he had never heard that you shouldn't inject into an RSD limb and said he would never do it again to anyone else.

A few months after the block, I fell and the RSD spread to my right arm. I had to have intense PT to try and get that under control somewhat as my arm went into a fist and wouldn't open.

About 4 months after the spread, I developed an ingrown toenail on my RSD leg. We tried to ignore it the best we could but it became really bad and got infected so my doctor told me I had no choice but to get it removed.

I had the toenail removed a few days later and my dr did a ring block into the toe as it was supposed to reduce the pain. With the ingrown toenail removal though, I developed severe myoclonic spasms and my leg just bounced around in the air uncontrolably. My doctor couldn't believe how bad it was and in a desperate attempt to get rid of the spasms, tried lots of muscle relaxants with little relief.

My Doctor has told me and my mum that I have the most 'on edge' nerves he has ever seen and says that I should never have any surgery unless I absolutely have to (eg, for life saving treatment) as it will only make my RSD worse.

I hope you don't have to have surgery on your hip as I agree with you, I would never have surgery unless I absolutely had to, especially given the circumstances. Just wondering when you had your surgery, did your doctor do a block before and after? I read somewhere that a block before and after surgery could help with the risk of spread - though it isn't guaranteed to. I've also read somewhere that a Ketamine infusion/epidural could help so that might be something to look into if you haven't already.

Take care of yourself and thanks for posting this and making people aware of the dangers and risks involved! I am keeping you in my thoughts and prayers and hope you get some much-needed relief real soon!!

Alison.

Thank you for the info,,,tryt zanaflex for the jerks and spasm,,,works great for me,,,,your in my prayers as well,bobber

[Mslday]

Hi Bobber,

Here is a link to an article on RSDSA.org about continuous peripheral nerve blocks being used on Soldiers injured in the Iraq war.

RSDSA.org is the best resource for up to date and accurate information about RSD/CRPS.

http://www.rsds.org/5/news/2005/buckenmaier.htm

I wish I had the opportunity to have had this done early in my diagnosis but it was too late for me.

I wish you well.

MsL