sensitive around the incision

[MATJESNIC]

Hi Everyone,

I just posted this on Spinekids. Is it normal for Nicole's back to be very sensitive to the touch around her incision? She has never let us touch her back and finally agreed to vitamin E on her scar today. I tried to then take a wash cloth and wash her back around her incision and she was crying that it really hurt so I had to stop. Please tell me this is to be expected? How do I wash her back then? She is almost 4 months post-op.

[scoliboymom]

Patrick has always enjoyed a good backscratch. But since his surgery he only wants/allows me to scratach the top and bottom of his back, even now 7 1/2 months later. There is a no go zone about two inches to the left and right of his incision and about 6-8 inches up and down, not the entire length of his incision. It was an area where his skin was numb after the surgery and I think with the nerves growing back it is just ultra sensitive to touch. He actually flinches if I touch him there. At the beginning I was able to scratch him there I think because it was numb but with the healing it has become more sensitive. I am assuming/hoping that eventually it will go away completely.

[dani]

I remember not wanting anyone to touch my back for the first month or two. I remember always moving away from my mom when she would put vitamin E on it (that was kinda funny ) but it didn't really hurt, I was just antsy about having someone touch my back so soon on my surgery. I don't think it lasted until I was four months post op though.

[Sherie]

Hi Melissa

Nicki is much further along than Sheena so I don't know how much this is worth but last week when I washed her hair, I was very gently washing her back with soap on my hand and she could only stand it for a few seconds. I wonder how long this will last?

[MATJESNIC]

Thanks Everyone,

Patrick's Mom, you have described Nicole exactly. She told me those areas are numb and actually can't take any touch there. Not sure how she can get her back clean. Those are the areas that seem to need the most washing. I will definitely talk about this in March when we go back.

If anyone else knows when this will get better, please let us know.

Thanks.

[flowerpower]

Hi Melissa,

Joe still has some residual numbness on the outer 1-2 inches around the incision. It has gotten better, but he really can't stand to have his back touched. From what the surgeon told us, if the feeling doesn't return after a year there is a possibility it may never fully return As far as cleaning, maybe you can help keep the area clean by (gently) wiping with baby or facial cleansing cloths.

Renee

[Christine84]

Hi Melissa,

I don't know if this will help, but when I started physical therapy around 4 months post op, I still wasn't at the point where I let my mom anywhere near the incision except when she applied Maderma. When I did allow her to do that I was always on edge and very sensitive to the touch. After just the first few appointments with my PT, I found that I could tolerate touch much better. I really think it had to do with me trusting that they knew what they were doing. Although it was painful when my mom would touch it, I really feel like the psychological part played a huge role in how I felt. Once I gained confidence with what my PT's were doing I gradually began letting my mom touch around the incision. Now because of all the itching (inside) I literally let my mom scratch my whole back. In PT I am also able to allow them to massage around the area. Hope I didn't ramble. I just know that it took me a long time to feel comfortable with my back being touched. It does get better.

Christine

[MATJESNIC]

Thank you Renee and Christine,
Good advice. I am wondering why some are told to get PT and others are not. Christine, why were you?

[Singer]

Melissa,

Thought I'd chime in to tell you that at 6-plus months post-op, I still jump 10 feet if anyone touches my scars. I've been told the only way to desensitize it is to gently massage it myself, a little at a time. But I can't bring myself to do that yet.

[MATJESNIC]

Thank you, Chris.

After the incident with Nicole I had a little pity party and cried for about 15 minutes. I don't know why. But the entire episode of her screaming and crying and me trying to wash her back just got me really down about the entire thing. I hate that she had to do this. I hate that she has to live with all of that in her back. Just your basic feeling sorry for my daughter. I will get over it. Thanks to all of you who remind me that she is not the only one.

[LorDon]

Hugs to you Melissa. I was so sad reading your post. Chris is still not permitted to get his back completely wet, so I don't know how he will react to it. As parents, we are so grateful what these surgeons can do for our children allowing them to live pain free lives. However, the fact of the matter is still that these are our little babies that we brought into this world loving them with all of our heart and soul and protecting them from anything that could harm them. Years later we are faced with putting them through a huge surgery knowing that they will live the rest of their lives with rods and screws embedded in their backs. It's heartbreaking. We all know that we did the best thing for our kids, but sometimes on a daily basis we are reminded of the changes that this surgery brings to their lives and we feel the unfairness of it all. Just looking at the sweatshirt that Chris wore to the hospital on the day of his surgery brings me to tears. I almost want to throw it away so I don't have to be reminded of all of the feelings I had while we were driving to the hospital on that dark, rainy morning in December. Thank God we all have each other as we go through this journey and we know that we aren't alone with these feelings. Our bond is a unique one and I am so grateful for that.

Big hugs,

[Singer]

As a mother, I'm really glad that I am the one who had this surgery and not my daughter. I hope my daughter never has to go through this!

That being said, I just wanted to add that I don't take the trouble to soap up my back -- I just let water run gently over it in the shower. It gets a bit of soap from shampoo, too. In other words, if Nicole can't stand to have it washed directly with soap, don't bother....I don't think it will matter.

[MATJESNIC]

Lori,

You know exactly how I feel. Yes, I could not be going through this without all of you. I was actually getting annoyed at Nicole thinking she was exaggerating her pain because of fear. After all it has been almost 4 months. I felt like the more she was telling me it hurt the more upset I was becoming because that meant she still was far from healed. I apologized to her today. I realize how common this is and that it is very painful for me to touch those areas.

Chris,

I normally wouldn't be getting involved in this, but there are patches of her skin that look dirty to me. It is strange because those are the areas that hurt. I guess I just want to scrub her back to where it can look as close to normal. But even a light touch hurts. She showers every day and washes her hair every other day. Water and shampoo run down her back so I am not sure what is going on.

[Christine84]

Hi Melissa,

Before I forget I want to address your comment about the dark spots on Nicole's back. I had the same experience (it might not be what she has but I think it could be) I found that once I was really able to scrub those areas it was just a bunch of dead skin. The more I used a washcloth/scrub the less noticable the dark spots were. It was basically like how sunburns peal, just a little more extreme!

Now, to answer your question about why my surgeon had me go through PT I have to first say I am not 100% sure how he determines who will need it, but I think he pretty much recommends it for all his patients who have had similar surgeries. The PT clinic is right above his office, and they work closely with one another. He told me it would help strenthen and stretch many of the muscles I hadn't used in a while. I would ask your doctor if Nicole would benefit from PT. It has helped me gain confidence with movement and what I am actually capable of doing. I was very scared to do really anthing the first few months. I have truly benefited from the PT. Hope this helps. Hang in there Melissa. You are such a wonderful mom!

Christine

[MATJESNIC]

Christine,

Thanks so much for your advice and your kind words. I will definitley discuss PT at our next appt. She was such an active girl and I don't want her to go through life afraid to move. Thanks for all of your help on this forum and I wish you a successful recovery.