Announcement

Collapse
No announcement yet.

Checking In 5 Mos Post-op

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Checking In 5 Mos Post-op

    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!
    Last edited by ARN010; 11-12-2008, 10:03 PM.

  • #2
    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
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

    Comment


    • #3
      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

      Comment


      • #4
        Originally posted by smileyskl View Post
        ... 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
        Fusion is NOT the end of the world.
        AIDS Walk Houston 2008 5K @ 33 days post op!


        41, dx'd JIS & Boston braced @ 10
        Pre-op ±53°, Post-op < 20°
        Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


        VIEW MY X-RAYS
        EMAIL ME

        Comment


        • #5
          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.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #6
            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

            Comment


            • #7
              Originally posted by smileyskl View Post
              ... 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
              Fusion is NOT the end of the world.
              AIDS Walk Houston 2008 5K @ 33 days post op!


              41, dx'd JIS & Boston braced @ 10
              Pre-op ±53°, Post-op < 20°
              Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


              VIEW MY X-RAYS
              EMAIL ME

              Comment


              • #8
                Sharon ...

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

                Pam
                Fusion is NOT the end of the world.
                AIDS Walk Houston 2008 5K @ 33 days post op!


                41, dx'd JIS & Boston braced @ 10
                Pre-op ±53°, Post-op < 20°
                Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                VIEW MY X-RAYS
                EMAIL ME

                Comment


                • #9
                  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
                  Last edited by Pooka1; 10-25-2008, 09:25 PM.
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #10
                    Originally posted by Pooka1 View Post
                    ... 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
                    Fusion is NOT the end of the world.
                    AIDS Walk Houston 2008 5K @ 33 days post op!


                    41, dx'd JIS & Boston braced @ 10
                    Pre-op ±53°, Post-op < 20°
                    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                    VIEW MY X-RAYS
                    EMAIL ME

                    Comment


                    • #11
                      Thanks for all the responses

                      Dear All:

                      Thx for all the responses and interest. Let me clarify....Amanda has muscle spasms mostly in her trapezius muscles....they become very tight and burn as a result of heat generated from the spasm. We have been giving her vicodin and/or valium 2-3 nights/week but this week have started Advil instead (with success). She is in physical therapy but there is little she can do in addition to all the exercise she already gets from her 5/day/week cheer activities. We have her stretching her ham strings mostly as these are quite tight. We have also tried the TENS unit but she hates that. Her treatment is:acupressure, medication, ice, heat, rest, not overdoing it (if possible). I am in constant contact with her doctor. He is not concerned about what she is experiencing and he states that it is common and different for everyone. Her body has a lot of adjustment to do. I can see her right side trying to go back to its former hump position although with the rigid hardware it cannot. The ribs/muscles were shortened on one side and lengthened on the other in order to pull all to the neutral position....this takes time for the body to get used to its new positioning and again it is different for everyone. She was doing pretty good until school, piano, and cheer started all in the same 2-week period (early Sept.) and hasn't let up yet. I took the sweet girl to Palm Springs during the week last month for a little hiatus from school and some "down time" and all calmed down quite quickly (as she drank fancy pineapple drinks at the pool!) We, as a family, get regular massage and she has been receiving massages since one month post-op....the girl LIVES for her massages....I can't afford to get her one every week but I would if I could...we go once a month; twice when she gets really bad. This really helps. The other thing that helps is the mentholated pain patches....they're the thin mint-smelling pads (I forget the name right now)....those give her a lot of relief as does BioFreeze. Regarding the growing rods, I could not even imagine having to take her back in for surgery one or more additional times. The first two weeks of surgery, hospital, first week home were very hard and upsetting. It was all about pain management and I was exhausted!!! I live in fear that something will "break" or the graft won't take and we'll have to do surgery again....that would be so hard. I am so happy with the result I would not even consider growing rods (they are the new technology and doctors love to use their new "stuff"). I watched a several day spine sympoisum and what I got from it is the doctors do not know everything and not every treatment is right for everyone. The rods/screws are very old, sturdy, tried and true and I am grateful that is what we did. I also got a second opinion from a Stanford expert and that was reassuring. I suggest to anyone to please obtain a second opinion from the expert in your area. Your doctor can put your films on disk and you can make an appointment with someone to review them with you. I did this and went through every possible side effect, adverse outcome, etc. I felt confident in what we were doing yet I still had to let go of my sweet child at some deep level that I cannot explain except to other parents with sick children. I was also VERY confident in our surgeon. He reviews new full spine x-rays regularly and her surgery looks terrific from the inside. Also, one last note....the sensation of "itching" is a very complicated thing...it can be nerves, skin, psychosomatic, allergic...it is a very interesting phenomena. I have also tried antihistamines (which also have a mild muscle-relaxant quality to them) as suggested by one of the docs at Stanford and that seems to help although this is prelimary info as I've only tried it twice. Anyhow, love to all of you going through this. You will make it. It is VERY UNCOMMON at this point (regardless of which procedure you choose) for anything catastrophic to occur....in fact, when I was researching I found some statistics that stated these more serious hospital admissions are actually safer as far as infection and other adverse side effects...could be that the docs/nurses pay more attention to those who are most severe....who knows....I do know that I am grateful to be on this side of it and wish us luck, we have a Pop Warner Competition in the morning at Santa Clara University (I've attached a recent picture from their Shoreline Amphitheatre competition just for fun; Amanda is the tall one standing in the middle, back row). Take care all!! Oh, and the other picture sums up how I felt when we were finally released from the hospital!!!
                      Last edited by ARN010; 11-12-2008, 10:08 PM.

                      Comment


                      • #12
                        Arno ...

                        I think you hit the nail on the head with "Her body has a lot of adjustment to do.".

                        Taking a 50° curve to ZERO is HUGE. Your last post was the first mention I'd seen of a possible CTD: Is there any speculation that's they were able to achieve that type of correction?

                        I, too, live for my massages - LOL. I just had my first post-op one last Monday, and OMG ... 90 minutes of all over deep tissue and subscapular/piriformis/trap myofascial release was HEAVEN.

                        When he first started on me, he couldn't get my shoulder blades to *budge*. With quite a bit of joint effort (much of it was ME cementing them in place ... and it took a lot of deep breathing to relax enough so he could move them), they finally started stretching out.

                        I'd sent him my x-rays beforehand so he knew what he was dealing with now (same guy I used pre-op). Arno, I also wish I could go every week! I am, however, shooting for every other week so things don't get so tight again.

                        Oh ... and because I've mentioned it in every other post where I've seen BioFreeze mentioned (LOL ... I promise I'm not a rep), give Tiger Balm ointment and patches a try. They work better for me than anything! I even got some relief from itching with it (just make sure you haven't scratched first ... ack!).

                        Her doctor is okay with her taking Ibuprofen? The camps are kind of split on NSAIDS (some think it retards fusion). My doctor doesn't care if I take it, but some are adamantly opposed and say nothing but Tylenol (which, of course, does nothing for inflammation) for a year post-op.

                        You didn't say, but I assume y'all are icing her traps as well during spasm?

                        Good luck to y'all, and I hope Amanda settles in and gets some relief soon. BTW, looking at her cheer pic, she seems to be much taller than the other kiddos ... how tall *is* she?

                        And smileskl's question about growing rods makes me wonder, what was her Risser at surgery?

                        Take care,
                        Pam
                        Fusion is NOT the end of the world.
                        AIDS Walk Houston 2008 5K @ 33 days post op!


                        41, dx'd JIS & Boston braced @ 10
                        Pre-op ±53°, Post-op < 20°
                        Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                        VIEW MY X-RAYS
                        EMAIL ME

                        Comment


                        • #13
                          Originally posted by txmarinemom View Post
                          Sharon ...

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

                          Pam
                          Pam, Are they very common in kids? I suspect they might be very common in adults but I don't get the vibe from the testimonials here that they are at all common in kids.

                          For example, I haven't read many testimonials about kids needing much in the way of pain meds, much less other pain/itching interventions, after the first few weeks. Maybe I'm missing something.

                          I did re-read the symptoms of CRPS and they don't fit the constellations of symptoms ARN010 wrote. So my comment about that as a possibility was off base. The memory... so fragile.

                          Also, in re a lot of adjustment, my kid went from ~58* -> ~5* and much rotation to almost none. Still she was off pain meds for good after a few weeks.

                          One thing... she would not have been released to do cheer leading as Amanda was. She is still on restrictions until November (8 months). I'm surprised Amanda was allowed to start cheerleading at about four months. Our surgeon would have nixed that. On the other hand, if the fusion is solid, I would think the movement would help her pain situation. But what the heck do I know?

                          sharon
                          Last edited by Pooka1; 10-26-2008, 12:44 PM.
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • #14
                            Ah, but Sharon ... Savannah and Willow both have Marfan-like signs, no?
                            Fusion is NOT the end of the world.
                            AIDS Walk Houston 2008 5K @ 33 days post op!


                            41, dx'd JIS & Boston braced @ 10
                            Pre-op ±53°, Post-op < 20°
                            Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                            VIEW MY X-RAYS
                            EMAIL ME

                            Comment


                            • #15
                              And also, I was released to do things kids were not at 4 months post-op. By 5-6 months, all I couldn't do was deep sea fish (bay and surf was okay) - and I couldn't PLAY softball or golf ... but range and cage practice were okay.

                              It just depends. Mostly on the surgeon. Mine's far more liberal than most.

                              And nerve itching is very common in adolescents. And adults.

                              Pam
                              Fusion is NOT the end of the world.
                              AIDS Walk Houston 2008 5K @ 33 days post op!


                              41, dx'd JIS & Boston braced @ 10
                              Pre-op ±53°, Post-op < 20°
                              Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                              VIEW MY X-RAYS
                              EMAIL ME

                              Comment

                              Working...
                              X