Hi All,

My 11y/o daughter was recently diagnosed with CRPS.

Last summer she suffered multiple trauma in a tragic car accident which claimed the lives of two cousins and also injured her sister. The accident resulted in many months of inpatient and day-patient treatments. Both my girls are back at school now and have made a miraculous recovery, although they still have much work to do! We knew all along that my 11y/o had some nerve issues in her right foot, but had no name for the condition and were not aware it could spread etc.

As a result of the CRPS diagnosis, her PT routine has changed and she began taking gabapentin which does seem to be helping. She is being followed by the pain team at Sick Kids in Toronto, so I suppose we are lucky to have doctors who understand the condition.

My current dilemma has to do with a long-anticipated surgery. Right after the accident, her left leg was surgically repaired with internal fixation. The ends of the pins were deliberately left fairly exposed to facilitate easy removal once the fracture had healed, as is common practice for pediatric patients. She has significant pain at the pinsites, and has bravely accepted that this pain, unlike that in her right foot, would go away once the pins were gone... you see where I am going with this...

The CRPS Dx means there is no guarantee the surgical removal will reduce her pain, and could in fact make things worse. She is so young, my heart is aching that she will have to fight yet another battle -- while at the same time realizing we could so easily have lost her already and trying to find joy in that.

We are so new to CRPS, I'm thankful to have found this site!

Dear Mom22galz.....

AND I am so thankful you found us..You will find this site to be filled with compasionate, knowledgeable RSD patients...I also want to say that I am so so so so sorry that your daughter has been diagnosised with CRPS... she and your entire family have been thru so much already as a result of the terrible accident..And yes, you are right that you fortunate that she is recovering somewhat and still with you but that does not help trim those painful edges of what she and your family are still suffering... I really want to say the one positive to all of this is her age..being so young, quick diagnosis and treatments may possibly place her in a good spot with CRPS....remission..but time is of the essence...intervention is needed..although i realize you have much medical intervention ahead of you as far as the pin removal but plz. please focus on the CRPS itself and move fast..As far as the pin removal, personally, I am not sure you have a choice as the pain, although independent from the CRPS now..it may be encompassed by the CRPS later..as it does travel, don't allow anyone convince you it does not!! And surgical intervention can cause spread but it just may go there anyway..without the pin removal...

I hope I was able to shed some light on your situation..I am again so sorry for what your daughter has ahead of her but one thing to remember is she must be a fighter..don't not give up and when things become complicated and hard to sort out due to CRPS..you come to us!! It is gut wrenchtening as a parent watching our children bare such big painful hurtles..I understand and am sorry for you too...

Welcome...

Kathy

Welcome to the neurotalk Family. I am so sorry to hear your daughters story. We will pray for all of you. Keep the positive attitude going-she is lucky to still be here-Trust in Gods will for her. Have you checked to see if there is a Support Group near you? They can be found on the main RSDSA website, under Support. Keep us informed-Fondly-carol

Hi Mom22galz
I am sorry for all that you are enduring, and for the pain and injuries your daughter sustained....your family must be still grieving the loss of your daughters' cousins. My heart shares in your challenges.

It seems that the hardware removal is inevitable..I want to add to be sure that her medical team is aware of the protocol for surgery where CRPS is involved, mainly the use of additional blocks before and after the surgery, to minimize the possibility of spread. It is a good idea to meet with the team way before this procedure to ensure that everyone is on the same page and that there is a coordinated medical plan in place.
Special hugs for you and your daughter
Hope4thebest

Dear Mom,

Boston Children's Hospital in Waltham, Mass. has an excellent reputation for treating juvenile RSD. Same with Children's Hospital of Philadelphia (CHOP). I am fairly certain that children have a good remission rate from RSD with intense physical therapy.

You most certainly want your daughter protected during surgery for her RSD. Ensure that her surgeon is well versed in the right protocol to use. I have read that Dr. Schwartman's office at Drexel is very generous at providing this information when it is requested.

The best of luck to you and your daughters.

XOXOX Sandy

Thanks for the caring replies

I guess I should clarify a wee bit, but didn't want to overwhelm my original post with too many details:
The accident happened while visiting my sister and family across the country, and our initial treatment was with a different children's hospital on the east coast. We didn't return home until Christmas time. We stayed so long for severally reasons, partially to manintain a continuity of care for the girls, partially to remain near my sister who lost her youngest two children that horrible day, and partially because home isn't accessible and they required wheelchairs for quite a while.

We were referred to The Hospital for Sick Children in Toronto for follow-up, and it was this new ortho team who indicated the pins would only be removed if they caused problems. At that point, I was rather baffled since they have always been problematic. Our last appointment with the original surgeon still had removal in the plan. But the news was delivered by a resident we'd never met before, and we had the appointment at the Pain Clinic a few weeks thereafter. So I decided not to persue anything until we'd met the pain team.

During that marathon assessment where she was diagnosed with CRPS, the idea that surgerical pin removal may not ease her pain came up, because surgical aggravation may cause the CRPS to spread. I obviously only want her to have relief, and not unneeded surgery. But we were previously lead to believe relief would come with pin removal once she was ready -- not to mention preventing other complications should the bone grow over the internal pins etc. And I hadn't even thought about CRPS going there without surgery...

I am honestly not sure whether the ortho not wanting to remove the pins had anything to do with CRPS. She hadn't yet been officially diagnosed, but completely fits the profile and was encouraged towards desensitization training prior to our retruning home. I sort of assume the head of orthopedics in one of the world's top childrens hospitals might recognize CRPS, even though a lot of doctors do not.

The pain team left it with me, indicating that although she'd been orthopedically discharged, she could be seen there again if need be. We go back to the pain clinic in July, and I am just trying to learn about the Dx so I can do right by my daughter.

She also has a delayed union of her tib/fib in the CRPS affected limb. But the femur fracture where the pins are causing the knee pain is healed. I was thinking of contacting our original care team to get an opinion... I must admit we were spoiled there. The original accident received a lot of attention and my girls had arrived via air ambulance which thankfully isn't a common sight. They fairly amazed hospital staff with their progress. Not only on the ward, but everyone from xray/casts to the coffee shop knew my girls and wished them well. It was really great to feel so well cared for.

Now that we have new doctors at a bigger hospital and are well beyond the acute phase, they seem more numbers than children She also had a traumatic brain injury, which resolved without surgery, but adds another layer of complexity to her treatment. She's doing well now, but initially required intubation so it was pretty severe. It's hard to tell if some of her behavioural issues are related to the TBI, the pain, or normal puberty...

The pain team seems pretty good though, fingers crossed! She's had 2 more physio appointments since diagnosis, and the PT did a consult with the pain team to change her routine somewhat and get on the same page. Right now, I am happy to report she has been outside with friends most of the afternoon! She came home briefly to take her gabapentin (which tells me it's helping or she would have likely "forgotten") and was out the door in a flash to enjoy the lovely weather we are having.

It has also been recommended we get some more counselling, so we are looking into that as well. Has anyone found CBT helpful?

Thanks again!

Go to the RSDSA library, the 9th link and the top is "CRPS and surgery". Click on it and it will take you down the page to that section. There is a PDF about precautions to take when you have to have surgery with CRPS. It's the 2nd link in that section. The name of it is "Preemptive Analgesia in Elective Surgery in Patients with Complex Regional Pain Syndrome: A Case Report." The others are also worth reading in learning what may truly help and prevent it from spreading.

*hugs* to you and your family for all that you've endured and are still dealing with.

Hugs,

Karen

From my expericence and the advise I have been given is if you have CRPS surgery really should be a must and a last resort because it can aggrevate the situation. I have had 4 surgeries after I was DX, and pretty serious ones, and out of the 4 only 1 really made the CRPS worse. I worked with doctors at the Hospital for Special Surgery in NYC which is truly the best in orthopedics, my pain doctor also was from the same facility and I truly believe that my situation could have ended so much worse if I did not have that type of care.

I have had RSD for 7 years and how my case was handled was prior to each surgery I was given upper extremity blocks and ketamine as part of the anesthesthic used during surgery. My problem area is mostly upper extremity. She is very young and at the begining of the CRPS journey. I would discuss it with her PM Doctor, and make sure the surgeon. PM Doctor and anesthiiologist are all on the same page. I have heard that ketamine is used for pedicatric surgery normally all the time. You will see that word ketamine on this web site many, many times. Ketamine is also used, with mixed opinions, for CRPS Treatment.

I hope I answered some of your questions.

Gabbycakes

Thank you again for all your information. That link was pretty informative, Karen.

One question, is this protocol to be followed for any surgery a CRPS patient undergoes (tonsilectomy for example) or is it limited to surgeries in affected areas?? I'm assuming it's for all surgeries.

So I guess the $1million question is whether to have the pin removal surgery as recommended by the original doctors or take the wait and see approach proposed by the new doctors. More research to do... good thing I like to learn.

Take care everyone!

Dear Mom and daughters, first and foremost I am so sorry for your tremendous loss and trauma that your family has faced this past year. No matter what you decide on the pins, do get family counsel, because your lives have changed and for all of you to assimilate and ingest the losses and changes are just so overwhelming and could have major long term effects on all of you.

My family and I were also involved in a car accident 8 years ago suffering severe injuries, no fatalities, except family pet, I am so grateful. My daughter broke her hip and pelvic, my other daughter suffered head trauma and femur, my husband suffered femur and pelvic, my son was the most fortunate, with minor contusions. I suffered bilateral open calcaneal fractures with severe tibial nerve injury to right foot. I had external fixator, internal fixator, almost every contraption you could imagine. I did have the pins and screws removed, they are very painful, and I am grateful that I did. I have had multiple surgeries, some aggravated it(rsd) temporarily and some not at all, but it did not cause it to spread. The nerve damage will slowly do that on its own or it can heal. My daughter with the hip/pelvic was the most resilient. She does quite well. She also suffered nerve damage.

I was just too sick to get family counseling. There was so much during that time that I did not understand, I was in and out of surgeries, I could not be there for my children, my brother had to take my oldest daughter. The end result is I have causalgia in right foot and leg, which by the sounds of it that is what your daughter has, and rsd in my left foot. I am having a subtalar fusion (surgery) in left foot in two weeks. I have no cartilage, I need the surgery, however, my surgeon is taking precautions regarding the rsd/causalgia with special blocks and post op care.

Your daughters are fortunate that they have you, you are all truly strong women, however, I wish I had not been so sick so I could have helped them get through that difficult time. I would have definately gone to family counseling. I mean from my kids standpoint, they were 11,13 and 15. We were coming home from a family vacation, they were with the safest people that they knew and then in a blink of an eye, we were spread all over the road like yesterdays newspaper. Different hospitals, I didn't even know where my kids were or if they were alive, I know they felt the same. My kids are older now, and we got through it, but I have longstanding issues, they have alot of anxiety and fear and I just wish that I were able to get outside help to help us all adjust to this terrifying event.

God Bless your Family, I wish you the best of luck on your daughter's pin removal decison, I am glad I had mine removed. The CRPS is what it is, if it going to spread it will. If she is in a flare (intense burning pain)that is not the time to have them removed if you choose to have that done. Again, God Bless!!!

Jeanie