Checking In 5 Mos Post-op

[txmarinemom]

... ETA: There are at least two kids on spinekids who reported having RPS and who were getting treatment. How bad was their pain such thhat they were diagnosed with that?

I have no farking idea about the specifics of this. All I know is I read what those kids wrote, looked up the condition, and was on the lookout for it in my daughter.

It has nothing to do with RPS. Some people just have more issues with failed/misfiring nerve regeneration. It not a syndrome ... it's just a thing.

The fact she has itching (severe itching) points to nerve issues.

Pam

[Pooka1]

Pam,

Yes but that often per week to the point of tears at five months?

My kid did not have that to anywhere that degree and I'm not under the impression she is atypical in this respect.

At what point does a parent decide that a pain specialist should be consulted? How do they know?

sharon

ETA: There are at least two kids on spinekids who reported having RPS and who were getting treatment. How bad was their pain such thhat they were diagnosed with that?

I have no farking idea about the specifics of this. All I know is I read what those kids wrote, looked up the condition, and was on the lookout for it in my daughter.

s

[txmarinemom]

Sharon ...

Burning/itching/pain from nerve regeneration is common. VERY common.

Pam

[txmarinemom]

... I did speak with Janet at Shriners and she said that the growing rods were a good option for my daughter in her particular case. She said very few doctors perform VEPTR (because of lack of training and acceptance) and only in certain circumstances. ...

That's pretty much what I said. Docs who don't know VEPTR don't recommend it ... because they can't DO it. Unless there's something really odd about your daughter's case (i.e., you just *can't* get to a VEPTR doc), Thoracic Insufficency Sydrome or not, chestwall issues or not, I've yet to see an advantage growth rods have over VEPTR. Maybe worth asking Janet what *they'd* do if you took her to Philly.

Regards,
Pam

[smileyskl]

Hi Pam,

I did speak with Janet at Shriners and she said that the growing rods were a good option for my daughter in her particular case. She said very few doctors perform VEPTR (because of lack of training and acceptance) and only in certain circumstances. She said the newer growing rods and procedures were much better than in the past. I just want to clairify that I have considered VEPTR and checked into it and in our case it is not the best option. I would travel anywhere to get my daughter the best treatment but after my discussion with Janet, I realized that the new treatments aren't for everyone even though they are great for many and I am glad that I checked into it. I wish their was a better option for us but it seems like this is the direction we are meant to go. I just thought it was strange, that with all the available treatments today, that a fusion would be done on Amanda at such an early age, but it may be that I am misunderstanding what exactly she had done so that is why I asked.

smileyskl

[Pooka1]

ARN010,

My daughter is six months out tomorrow and has none of those pain/burning/itching issues for months. Plus they were never bad enough to mention... she only told me when I asked if she was having any issues. She certainly never cried. The recovery was fast and with no setbacks.

My point here is that, based on my daughter and the testimonials of the other kids I've read, I think the issues your daughter is experiencing at this point are atypical and need attention by a pain specialist. Some things are better solved the sooner they are treated.

Maybe others can comment on my comment... maybe I'm out to lunch.

Good luck.

[txmarinemom]

... When she had her surgery, growing rods weren't an option but now seems to be the recommended thing if you can't have staples.

smileyskl,

I can't say why Amanda was perm fused vs. temporary, but as far as growing rods, only surgeons who don't do VEPTR recommend growing rods.

Regards,
Pam

[smileyskl]

Just wondering - why did your daughter have a fusion instead of growing rods. My daughter is 10 and she is very close to or at 50 degrees (we haven't went back for the checkup but she was at 46 and steadily progressing) and her doctor says its not good to do a fusion that young so we are talking about growing rods. I was thinking this was normal practice. Just wondering. I have a good friend who was fused at age 10 and she is now 22 with two kids (both of which she had naturally with no complications -one 9lbs 2oz and one 8lbs 5 oz) and lives a very normal, active life. When she had her surgery, growing rods weren't an option but now seems to be the recommended thing if you can't have staples. I am trying to get as much information as possible as to all my options. Thanks.


smileyskl

[txmarinemom]

Arno ...

That's fantastic Amanda got such great correction, and most importantly, that her self esteem has increased so much.

(BTW, she is fused at exactly the same levels as I am - T4-L1 - and our curves were about the same in severity ... I bounced between 48°-53°, and just happened to measure 53° at my last pre-op x-ray. In reality - with the margin of error - I'd remained about 50° for almost 30 years.)

What kind of "tearful pain" is she having? The fact you mentioned "horrible burning and/or itching sensation nearly daily" makes me wonder if both might be nerve related.

There are drugs out there that can help with the itching and burning. Is the burning a solid burn (like at the top of her shoulder blades) or a sudden, shock type burn like ant bites/bee stings?.

The itching I'm describing is not itching at the incision ... it's a deep itch (unreachable) caused by nerve regeneration - or attempted regeneration. Some people never experience it, some people have it for a short period/intermittent periods, and some people always have it to some degree.

The reason I asked about the solid burn (keep in mind our fusions are identical) is because about 4-5 months I had burning at the top, inner corners of each scapula. It was just tightness and the pain was aggravated by activity/holding my head the way I had pre-op. That type of pain will resolve: Self-stretching, postural awareness, and myofasical release/deep tissue massage helps keep mine at bay now. She's probably not far enough along for massage, but you might ask her surgeon. I just had my first post-op massage last Monday, and OMG ... HUGE diference.

If the burning is more along the lines of electric shock/ant bite/bee sting, it's nerve related.

She could also have BOTH types of burn sensations ... I did.

Ask her doctor if she's a candidate for Neurontin (the generic is Gabapentin) or Lyrica (there are also other, lesser used, meds). I don't know if they use either on kids her age, but it's certainly worth a try. At 8-1/2 months post-op I'm still on 100 mg of Gabapentin x 3/day, and I while I still experience brief itching jags, it's NOTHING like it was before. The itching was driving me INSANE some days!

Gabapentin can also help with pain, and *maybe* (hopefully!) it could help with her bad nights, as well.

Also, ice packs (I use one of the large gel ones) can be a huge help for itching and pain/spasms related to inflammation. As active as she is, and as early as she is post-op (I know by 5 months you feel pretty good, but you can still overdo without really feeling like you did and cause swelling ... the effects of which you DO feel!).

Keep us posted on her progress - and what the doctor says about the meds on kids her age. Tell her to keep up the good work and I think she's a strong, brave young lady!

Best regards,
Pam

[ARN010]

I am sorry I haven't written....Amanda is doing great. She experiences tearful pain 2-3 nights/week and has a horrible burning and/or itching sensation nearly daily. But, she is also doing Pop Warner cheer 5 days/week, is in an afterschool GATE program, does choir, piano, and is quite active. Given all that activity, I think she is doing way better than I would 5 mos. after spinal fusion (T4-L1). I can feel where the spinal processes were trimmed....that's kind of weird. She's doing great self-esteem-wise and is still SO GRATEFUL to be out of the brace!!!!!! I have tearful moments as it was so hard for me as her mom. I was listening to Sheryl Crow's "Lullaby for Wyatt" and she sings to her baby about "love is letting go" and it reminded me about how deeply I had to let go of my sweetheart and trust with blind faith through this whole ordeal. All said...I would do the fusion again. I think it has saved her psychologically and clearly physically. She was 50 degrees curved at the time of surgery. She has a zero curve now and the hump is completely gone. I have a lot of tips for the hospital stay. We had surgery at Kaiser Oakland by Dr. Lincoln who is absolutely the greatest! Love to all of you!