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Location: Northern California | Decisions, decisions... we are having a tough time! We had our appt today with Dr. Gupta at Shriner's here in Sacramento. It was a good visit- he was very pleasant and easy to talk with (despite us going against his recommendation to brace Ian last year). He gave us lot's of time and answered all of our questions. I felt confident and comfortable with him. He recommends doing the bi-lateral traditional growing rods vs. the veptr for Ian. He says in absence of fused ribs or chest wall deformities, he believes you get "much better control of the spine" which allows for better correction with growing rods. He is also concerned about the "high occurrence" of rib fractures that is seen with the veptr. I asked about the spontaneous fusion that commonly occurs with the growing rods and he says that while it does occur, it happens in very small segments which typically do not pose major problems or prevent significant continued growth of the spine. He says the veptr is very appropriate and successful for the intended population but he says the growing rods give better correction with less complications in kids with isolated scoliosis.
So we thought we at least had our decision made as to which procedure.... now I am re-thinking everything. The rib breakage scares me- Ian's x-ray reports dictate "osteopenia" and he is at increased risk of bone fractures due to his immobility and hypotonia. BUT, the spontaneous fusions and invasiveness to the spine also scare me.
We have a phone consultation set for next Wednesday with Dr. Smith in SLC. We have also sent Ian's info to Dr. Song in Seattle. Hopefully they will be our tie-breaker - with our luck- one will lean one way and the other the opposite! ;-)
So... would love to hear about others that have been in our situation- where you have had a choice between the two procedures. I realize if you are reading this, you likely chose veptr- why? I am also curious to know how many of you have experienced the rib fractures or migration with veptr. I suppose I should also post this on a general scoliosis board- but I have been given such great insight and support here... I wanted to ask you all first. Is there a general infantile scoliosis board that any of you can recommend? Ian does not have congenital scoliosis- it has been explained as "syndromic" or neurologic- so not sure if the congenital scoliosis board is the most appropriate?
Thanks so much everyone!
Colleen- mom to Ian
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Expert
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Location: Plymouth, Pennsylvania | JUST WANTED TO SAY, I KNOW THIS MUST BE VERY HARD....
FOR ZOE, THERE WERE NO CHOICES...AND AS HARD AS IT WAS BACK THEN, RECALLING IT NOW,
I OFTEN THINK SOMETIMES...PERHAPS THAT WAS FOR THE BEST...
I DON'T KNOW MUCH REGARDING THE "GROWING ROD", BUT I DO REMEMBER A CONVERSATION I HAD ONE TIME WITH DR. EMANS,
AND HIM SAYING...(THIS WAS FEW YEARS AGO)...."GROWING RODS" WERE STILL "HIGHLY REGARDED" AND DONE MUCH MORE THAN THE "VEPTRS"...
I MIGHT HAVE ASK WHY AT THE TIME, BUT THAT I DON'T REMEMBER...JUST TOO MANY YEARS....BUT I AM SURE HE ALSO WOULD ANSWER ANY QUESTIONS YOU MIGHT HAVE...
HE IS DR. JOHN EMANS @ BOSTON CHILDRENS'S HOSPITAL...HE IS HIGHLY REGARDED IN OUR FAMILY, AND REGARDED AS ONE OF THE BEST SPINE SURGEONS IN THE COUNTRY...AND HE IS ALWAYS OPEN AND NEVER TOO BUSY TO QUESTIONS...
LOTS OF THOUGHTS AND PRAYERS COMING YOUR WAY....
GOD BLESS... |
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Expert
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Location: Utah | Hi Colleen, You knew I couldn't NOT reply  First, I'm glad you had a good appointment with Dr. Gupta. I was hoping it would be a positive experience. I would use the information you have from him, from Dr. Erickson, etc. and continue asking questions of Dr. Smith and Dr. Song. Once you have all your information sorted out, then you can make the best choice for Ian. Ask Dr. Smith about the low muscle tone/weak bone structure issues. He has lots of experience with kids like that and will give you an honest answer. As a VEPTR parent (yes, probably biased) I would try VEPTR first. It is least damaging to the bone structure. If it fails (ie, migration, breakage, or whatever issues would occur in Ian's situation) you can go back to growing rods. If you start with growing rods, there is damage to the spine that can't be undone. If growing rods fail, your only other option might be early fusion. Something you want to avoid as much as possible. Braydon has had one migration issue. It was such a slow migration that nothing needed to be done for a full year (or more). The bottom of the chestwall rod migrated through the lower rib it was attached to. He had two expansion surgeries before they fixed it, because it was still solidly in place (if it ain't broke, don't fix it mentality). When it finally migrated completely through, they reattached it to the solid bone that had grown in the same place. Worked out great. In 8+ years, he has only had one migration. Braydon is much more mobile than Ian, but when he had his VEPTR implants done, the OR report read that his bones were softer than expected. They attached the upper part of both rods to two ribs instead of just one. This was for stability. He has never had a problem with the upper rib attachment site. There is a infantile scoliosis list where the main focus is early intervention/serial casting. Anyone who has surgery on that list ends up unsubscribing because the majority of posts are about casting. Period. It might be interesting to hear what they say, but remember its a group of parents promoting casting. I think Ian's medical issues coincide more with the kids on the congenital board. Having "just" infantile scoliosis is a different animal. I know you are searching for as much information and as many experiences as possible. You can post to all the lists/messageboards you can find. Just remember Ian is unique. Keep us posted on your research.
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Extreme Veteran
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Location: Southern California | Did you give up on Dr. Skaggs? These would be good questions for him... In particular, because he uses growing rod devices in the manner of the VEPTR (attaching to ribs), as well as traditional growing rod methods, in addition to the standard VEPTR procedures... If you log onto my care page site, noted in signature line below, i have pix loaded of my son's original VEPTRs & his new hybrid growing rod placement...
Oh -- and yes, we've had the VEPTR migrate through the upper rib and also below through the vertebae at the bottom attachment site, as well as have a VEPTR snap in half... |
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Location: Plymouth, Pennsylvania | COLEEN,
JUST WANTED TO ADD...IN THE 10 YEARS ZOE HAS HAD HER "VEPTR" IMPLANTS...
ZOE HAS ALSO HAD "MIGRATION" ONE ON THE BOTTOM OF THE "HYBRID" AT THE FIVE YEAR MARK, AND
ABOUT 2 YEARS AGO, THE TOP OF THE BOTH "VEPTRS" MIGRATED INTO HER SCAPULA...
BOTH TIMES NOTHING URGENT, REPAIRS WERE DONE, AND SHE HAS DONE GREAT...
ALSO OF ANY THIS PROCESS WITH THE VEPTRS, THAT IS THE THING THATS SCARES ME THE LEAST...MORE IN FEAR OF THE CONTINUED SURGERIES AND ANESTHESIA'S..
ALSO 10 YEARS AGO, WHEN ZOE ENTERED THIS PROCESS, THE PLAN WAS, TO GET HER AS FAR AS SHE COULD GO, AND THEN SHE WOULD HAVE A
TOTAL "SPINAL FUSION"....PROBABLY AROUND 13 OR 14, BUT THOSE THOUGHTS HAVE CHANGED, AND I AM HAPPY TO SAY, IT IS VERY POSIBLE THAT ZOE WILL NO LONGER REQUIRE THAT FUSION...THE VEPTR ARE TRULY SHOWING THEMSELVES TOO ME MORE THAN ANY OF THE DOCTORS HAD THOUGHT POSSIBLE IN THE BEGGINING OF THIS...THINGS ARE IMPROVING EVER DAY...I'M SURE THERE IS A LONG WAY TO GO, BUT I THINK IT IS A WONDERFUL THING YOU ARE DOING RESEARCHING ALL THE CONCIDERATIONS...
KEEP US POSTED...
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Location: Northern California | Hi Everyone!
Just wanted to post an update since our phone consult with Dr. Smith and our trip up to Seattle to see Dr. Song and team. They both could not have been more accomodating and generous with their time! I gained so much info and thoroughly enjoyed speaking with both of them. They both requested that Ian have a traction x-ray before they made any recommendations about surgery. We decided to make the trip to Seattle due to their team approach and thorough assessment by the pedi. pulmonologist and general surgeon. As Ian's chromosome disorder and other "stuff" is so complicated and rare, we were excited to have this panel of doc's collaborating. The traction x-ray showed only a 37 degree curve! His seated one was in the 65-70 degree range. With this amount of flexiblity, Dr. Song did not recommend surgery yet. He wants to do a repeat x-ray (which he applies the traction himself in an effort to be consistent) in 4 months. We were shocked as we were previously told (by two other surgeons) that Ian should have the surgery asap. We question why this traction x-ray wasn't considered or recommended previously?? Dr. Song stated that he uses the traction x-ray for all pts. and does not recommend surgery until the "fixed" curve measures closer to 50 degrees in most cases. I am still so overwhelmed with all of the differing opinions, but am so thankful for this new information. While we are thrilled at the idea to put off surgery, I can't help but worry that we will see less overall correction by waiting... Is it beginning to sound as though I enjoy torturing myself ;-) AAAhhh, all in all, we came away feeling very confident with the thorough assessment and consideration of Ian as a whole. I have more questions for you all, but am going to wrap up for now as it's late and I am beat! I will post again soon. Thanks as always!
Colleen- mom to Ian- 3 and started special needs preschool last week! |
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Location: Monument, CO | Colleen -
As always, you have my thoughts and prayers! Call when you can, if you need to. In the meantime, don't forget your dign and know that you are being guided in the way that is right for Ian, whether that be CA, CO, UT or WA.
Have a great day! |
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Location: Northern California | Hello everyone! It's been a long time since I've posted, but ive enjoyed following the messages and continuing to learn from your experiences. Since our last update we have been back up to Seattle Children's twice for follow-up of ians spine. Thankfully, his curve has not progressed and is still quite flexible. His curve measures in the 60's when he is seated, but only in the 30's with traction. We are happy that we waited as we have not lost any ground to this point. Ian will be 4 in April and has developmental delays as a result of a rare chromosome abnormality. He does not have fused ribs or other structural abnormalities of the spine. He has low muscle tone and is not yet walking, though does bear weight and uses a gait trainer. We just returned Thursday from the latest f/u visit and our faced with the decision of wether or not to schedule surgery soon. Based on stable x-rays, good flexibility, and no detectable pulmonary compromise, the docs say we can continue to wait and watch, UNLESS we feel that his function is being compromised- ie walking and gross motor goals. We know that he fatigues easily when upright and he has a hard time stepping with his left foot as a result of his curve. What we don't know is how much better would he be doing if his spine were straighter? His developmental delays make it hard to predict. I would love to get some opinions and insight here. For those of you who have already gone through the surgery with your kids, do you feel that their function has improved? Especially for those who may have delays or were not yet walking prior to surgery. Also has anyone noticed a decline in gross motor function after surgery (after full recovery).
I really wish this were not our choice and it were more black and white! We want to spare him from additional surgeries as a result of beginning this process sooner than absolutely necessary, but we don't want to prevent or delay his developmental progress any further.... Thanks for reading and any comments! |
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Location: Utah | Hello Colleen- Your situation is similar to ours in many ways. Our son, Collin also had a very flexible curve, no detectable pulmonary compromise, and no fused ribs or other chest wall deformities. Collin has spina bifida, so he has decreased muscle tone in his lower legs. He started walking with a walker around the age of 2, and he started walking several steps independently just before his VEPTR surgery at age 4. Collin's scoliosis was diagnosed at age 1, so we also took a "watch and wait" approach for many years. Collin's curve was around 80 degrees at the time of surgery, but it was still very flexible and we got a nice correction. His curve was around 30 degrees post-op. I don't think waiting really affected the amount of correction.
As far as gross motor skills...I remember after they took Collin into surgery I was crying and telling my husband how afraid I was about the surgery affecting Collin's walking ability. We had worked SO hard to get him to take those first steps on his own, and I was afraid it was all going to be taken away. I can tell you now that those particular tears were shed for nothing!! After Collin recovered fully from the surgery and his pain was gone, he had no problem picking up with his walking right where he had left off. In fact, in the subsequent months we saw a huge improvement in his walking. His balance was so much better and his gait was much more normal. I was watching videos recently of him walking, prior to surgery, and I could really notice a big difference. So, I guess my point is that I do think his curve was affecting his ability to walk to a certain degree, but I don't think it was enough that I would have put him through surgery any earlier. He was still making enough progress that I was content to wait until our surgeon thought his curve was severe enough to operate. I realize that every case is different, but I just wanted you to know that in our case, we definitely didn't see any decline in gross motor, and in fact, saw a big improvement post surgery. Collin is now almost 6, and is walking independently. He now only uses a walker or crutches for tricky areas or if he is walking very long distances.
Our surgeon is Dr. Smith in Salt Lake City. We were just there 2 days ago for Collin's pre-op appointment for his next expansion. We talked a little bit about VEPTR vs. Growing rods. He basically told me that it is the method that he prefers, of course, he was the doctor that first started using VEPTR as a growing rod, for patients outside the original intended population (TIS, fused ribs etc.) so naturally he prefers VEPTR. I am sure there are other opinions out there. He was our doctor from the beginning, but we also spoke to others, and did our own research. We felt VEPTR was the best choice in our case. Please let me know if you have any more questions. I would love to help! |
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Location: Northern California | Thanks so much for your post Rachel, so helpful! Yours is the first situation that does seem somewhat similar to ours. I am also relieved to hear that Dr. Smith also recommends waiting as long as possible when the curve is flexible. We found that this is very controversial among surgeons. I spoke with Dr. Smith last spring after sending him Ian's records and liked him very much. We also had a phone consult with Dr. Song and decided to go to Seattle as it is easier for us to travel there vs. Salt Lake (Southwest doesn't fly direct from Sac). Anyway, we have loved Dr. Song and team- sounds like he and Dr. Smith are very much on the same page. Anyway, Collin's progress post-surgery is so reassuring to me. How long roughly did it take for Collin to fully recover after the initial implant? How long has recovery been for expansions? Thanks again! I am breathing a sigh of relief after reading your experience! |
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Location: Plymouth, Pennsylvania | "I really wish this were not our choice and it were more black and white!"
I WISH I COULD BE MORE HLEP TO YOU COLLEEN, BUT IT WAS VERY 'BLACK AND WHITE' FOR ZOE...AND JUST IN THE SHORT TIME FROM EVAL. TO SURGERY, WAS
ONE OF THE HARDEST TIMES IN OUR LIFES...SO I CAN IMAGINE, THIS IS ALL EXTREMELY HARD FOR YOU...
BUT IN THE SAME THINKING, THERE ARE OPTIONS, AND WITH EACH DAY, THINGS IN THE MEDICAL WORLD CONTINUE TO IMPROVE...
THE 'VEPTR-TITANIUM RIBS' HAVE SAVED ZOES LIFE...SO IN THAT ALONE WE NEVER REGRET A DAY OF IT....THAT IS NOT TO SAY, THIS 'ROAD WE TRAVEL' IS AN EASY ONE...FOR SURE, THAT WOULD NOT BE TRUE...BUT IT HAS BEEN ONE 'WORTH TRAVELING'...
YOU ARE DOING A GREAT JOB...COLLIN CERTAINLY HAS A VERY FINE, AND LOVING MOTHER, AND ADVOCATE FOR THE BEST CARE THIS WORLD CAN OFFER TO HIM...
THANKS FOR JOINING US, AND UPDATING UP ON COLLIN, AND KNOW THAT OUR PRAYERS CONTINUE FOR HIM AND FOR YOU....AND I AM LOOKING FORWARD TO HEARING MORE ABOUT COLLIN...
GOD BLESS... |
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Location: Northern California | Thank you for your kind reply Johanna. Just to clarify, Ian is actually our son- Collin is Rachel's son. Thank you for your insight and support- SO appreciated!
Colleen |
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Posts: 3970
Location: Plymouth, Pennsylvania | SORRY COLLEEN...MY AGE IS SHOWING...LOL...
CONTINUED PRAYERS FOR IAN... |
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Location: Monroe City, MO | Colleen,
I remember posting the same question on this site, Veptr vs. Growing rods! We had to make the same decision with our daughter who is now scheduled to have her first Veptr implant on January 19th. Kimberly has Congenital Muscular Dystrophy and therefore has severly weak muscle tone. She can not ambulate but can sit up for a while once you put her in that position. We have maintained a very long wait and see policy as she is now 8 and has had scoliosis since she was 6 mo or so. Luckily/unluckily, Kimberly is already on a ventilator so we were able to wait and see when the scoliosis started to affect her breathing and had all the ways to check for this at home. Although her curve reached about 100 degrees by the time she was 6, no effect was seen on her respiratory funtion and all doctors agreed we could still wait. It wasn't until this past summer that her vent need increased and her back cramps starting hurting her so much she couldn't sit up as long as she used to be able to. By the time she got into her dr.s office her curve had dramatically increased to 135 and surgery was necessary. Then we saw one surgeon who recommended Growing Rods (but he has no experience with the Veptr) and another who recommended the Veptr and he does both. The reasons we went with the Veptr were 1) less invasive surgery, not going into the spine 2) Will be able to more easily physically handle her with the Veptr vs Growing rods (we were told with the growing rods that two people will have to carry her for the first year and we would need a lift) 3)the second dr seemed more sure of himself and had better bedside manners 4) with the growing rod she would have had to where a halo, not so with the veptr. Those are the biggest reasons we have. We were told to expect complications with both ways, but at least the second dr said his team could handle them. The first doc said it like it was a death sentence and it scared the crap out of us.
I don't know if any of this will help but good luck in your decision, and for my vote, I think waiting a while is okay considering there are no other physical anomolies with Collins chest cavity, just scoliosis. That is the same with Kimberly. I can tell you though that at one time her curve was considered flexible and is now pretty stiff so it seems over only a short 6 month period her curve got rapidly worse and stiff. It might have been better for her if the surgery was done before that so as to get a better correction but she was stable for so long there was no way to expect that. I'm sorry I seem to contradict myself  Her veptr doc has also repeatedly mentioned to us that the veptr is not used to straighten the spine but to give the lungs more room. The straightening is just a bonus side effect. so I really have no idea what kind of correction to expect.
Again, good luck and we'll be praying for you and your family.
Mary |
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Location: Utah | Colleen- I would say it took about 6-8 weeks for him to be fully recovered and pain free. Although, we saw improvement each week. Expansions have been super easy so far. He has only had 2, but they have both been quick recovery. I would say after about 48 hours he is his old self again. Of course, I still try and have him take it easy for about a week or so. |
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| colleen , can you please give my info about traction x-ray. because my dr. wants to do helo traction. and its can be done throuh surgery. |
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Member
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Location: Northern California | Hi kirti,
A traction is x-ray is simply an x-ray of the spine where the child is lying flat on their back and the dr. And/or tech pulls the childs legs while someone else pulls under the arms to "stretch"the spine. This method gives an indication of how flexible the spine is. Halo traction is done I believe to stabilize the cervical spine? I am not very familiar with this treatment. Sorry I couldn't be of more help. I am sure others on here might be able to give you more info on halo traction if you started a new message with Halo traction as the title.
Good luck to you.
Colleen |
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Veteran
Posts: 195
Location: Wyoming | Colleen,
I am an old member on here but just getting back to posting. We see Dr. Smith in Utah and absolutely love him. My son has had the veptr rods since he was 5 and he is now 11. Next week he will be having the rods replaced. This will be his second replacement. The first one he replaced it with the veptr 2 feeling it was a better match for my son. I know it is a hard decision to make whether or not to have surgery, prayers for you guys and let us know when he needs surgery and we will for sure say prayers for him. |
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Location: Sacramento, California | Colleen! I'm glad you went to see Dr. Gupta! He's great. Of course, I can't help you with your question...sorry. Veptr rods were our only option.
If you do go through Shriner's, it would be nice to have the boys scheduled on the same dates in the future. They could become veptr buddies. = )  |
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Veptr vs. growing rods for scoliosis w/o fused ribs or TIS
