My 13 year old daughter underwent surgery in November for a 7th Cranial nerve palsy. Although the surgery was a success, something during the 10 hour surgery went wrong.

She lost the use and feeling in her left leg. At first they had said it was "normal" due to the positioning during surgery and that given a week or two she should be fine and all will be back to normal. After about two weeks she was diagnosed with foot drop. Thankfully this has resolved and she no longer needs a brace. She has regained most of the feeling in her leg, although the process was extremely painful. As the nerve was coming back it was (as she describes) popping and shocking her. She would cry out in pain. The doctors have said it is RSD. She is walking again, but describes her foot as feeling like it is on a pillow. There was a point where if you even blew air on her foot it was painful for her, so walking is a HUGE step. She has also noticed that she can't feel temperature with her foot. internally it can feel cold, but if she puts it in HOT or COLD water she can't tell the difference. She is going for an EMG next Monday so we can have a block done in hopes that it will put this to rest for good. My question is mainly with the temperature sensation, I haven't seen on these boards or in other searches where this is associated with RSD.
Even her nuero seemed a little perplexed by this. I should also mention she is on neurontin 100mg 2x's day.

Welcome to Neuro Talk. You have found a really good site for information and compassion. There will be alot of people to help address your concerns with your daughters RSD. I am sorry that this condition has come into her life at such a young age. I know what suffering this condition can cause. There is also alot of hope for it, especially with the right kind of physicians and early intervention. I hope alot of good folks respond to you and give you more information to help. Neuro Talk was created just for this purpose. Please feel free to post any questions you might have, and join in on any conversation. Neuro Talk is glad to have you here. ginnie

I am very sorry to hear about all that your daughter has had to go through...so much for someone who is only 13.

With regards to the temperature thing...what you describe is a little odd. With RSD it is normal for the limb itself to get hot or cold for no reason...but RSD patients usually have very extreme reactions to cold temps and sometimes hot temps. The one thing I have noticed is that since I got RSD in my hands I sometimes have a delayed reaction to heat. Sometimes I will pick up something that is hot and I don't react right away...but it is usually only seconds before I DO register it. I don't know why this is but I assume it is related to the RSD. Cold on the other hand results in an immediate response of horrifying pain and ridiculous swelling.

I don't know that I have ever heard of an RSD patient not FEELING temperature at all...though that doesn't mean much because RSD affects so many people differently. I personally have experienced symptoms which RSD can cause but I didn't know about it (nor did my doctors) until I looked it up specifically and was like, "Yep...RSD can cause it...mystery solved." Hope someone can chime in if they have any experience like this or know someone who has.

There is not even a delayed reaction to the temperature. she can place an ice cube on her foot with no reaction. She noticed it when she was in the shower and she stuck her foot under the faucet and she could feel the pressure of the water hitting her foot, but she couldn't tell that it was hot. she has no real "feeling" in foot. It is cloudlike she says, like she walks on a pillow. Her skin on the bottom of her foot is also scaley, it's hard to describe, I liken it to a dry desert that is all cracked.
She doesn't get the swelling, or discoloration that i've seen mentioned on the board either. I am beginning to wonder if we are dealing with something similar and different.
At the worst of this, she was in a wheelchair and like I mentioned even air touching her foot was excruciating. She couldn't walk at all.

The temperature thing is a bit odd.....but what I've grown to know is that every case of CRPS has individual characteristics and symptoms. The hypersensitivity symptom is VERY common with CRPS.

I have been using gabapentin (generic for neurontin) since diagnosis; it is a godsend for me and is often the first drug that is diagnosed for this condition.

I will tell you though that 100 mg twice a day is a very low dosage. Who prescribed it? I would ask them about the dosage as she may not be able to get the full effects of the drug if the dosage is too low or if it isn't "stepped up" to a dosage that is appropriate for her condition.

Good luck to you guys and keep us posted!

smplylst

Welcome to neurotalk. I am sorry to hear about your daughter. I have to agree that the dosage of her neurontin is extermely low and should be adjusted. This will help her with the pain. Fortunately she is young and with aggressive therapy and interventions such as blocks there is a chance of remission. As far as the temperature difference. The only time I was like this was in the begining when my foot was swollen.
Feel free to ask questions make comments. We are not here to judge we are people learning from one another.