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Location: Dayton, OH | Hi everyone, I have not been on the site for awhile. I hope all your children are doing well. I promise to make the time to catch up with everyone soon! For those of you who remember us, Ana is doing REMARKABLY well. We have had very little illness this winter! We got a wonderful report from the Pulmonary doc earlier this week that Ana's chest wall seems to be evening out a little bit... with missing and (at least) four fused ribs - that can only be a miracle! Our biggest excitement this winter was rush to the hosp in an ambulance on a backboard (by order of her pediatrician) last month when she woke up with severe neck pain and couldn't sit up without excruciating pain. It appears to have "only" been a severe muscle spasm. The doctors had me keep her somewhat sedated over a couple days with a neck brace to support her head and then she was good to go.  God is so awesome. 
My question for all of you -- and please forgive me for not taking the time right now to research your prior posts for this info -- We are being offered an opportunity to ask the team of spine surgeons from Cincinnati Children's and Dr Peter Newton from San Diego three questions regarding Ana's diagnosis, prognosis, treatment, etc. when they evaluate her for spine surgery on March 28th, 2007. Ana has severe congenital scoli with two primary curves: cervical and thoracic. She has a bar of fused (on the left, but not right) & deformed cervical vertebra and similar but not as severe deformity in the thoracic area. Dr Emans recommended I NEVER allow a surgeon to install a growth rod. Her ortho surgeon in Cincinnati believes it will be necessary to stabilize her neck with complete fusion of the cervical spine before she's five. He's also discussed a growth rod. ... From your experience, do you have suggestions on what I should ask them?
She was disqualified for VEPTR two years ago because there was not enough room in her rib fusion area to insert a VEPTR. However, Dr Emans told me she should be reevaluated for VEPTR or newer technology at her pre-puberty growth stage when the thoracic hemi may cause greater concern. Thanks much, Melanie |
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Location: Dayton, OH | Alright everyone, are you thinking or did I ask a dumb question?? |
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| Hi Melanie,
your question is far from stupid.
I think a reason for slow responses is because most of the children referred to on this site have problems for which the veptr is suitable, and Ana's problem, like that of Chloe, need something different to VEPTR, at least in Ana's cervical spine, her thorax might be a different issue.
My granddaughter Ella is also being given options of fusion and/or growing rods
Fusion gives a good solid union but my understanding is that fusion significantly restricts the growth in height of the vertebrae which are included in the fusion
Growth rods go along the vertebrae and are attached to or through the bone on the sides of the vertebrae, that is, into bone but not where the spinal cord is.
They have to be lengthened every 6 months, as do VEPTR rods which are only attached to ribs or sometimes to the pelvic bone and rib
I would want to ask lots of questions, such as
1. can she have fusion or growth rods in the cervical spine--is there a choice? and the advantages and disadvantages of both.I could see why Dr Emans would be against growth rods in her neck, as you would aim at a good union in that region.But that might mean having a very short neck---but that might be the only option regarding surgery in her neck
2.how many vertebrae are they wanting to fuse in her neck--the more fused, the shorter her neck will later be
3. Given that Ana's thorax has less problems and also because it will not be as tricky or as risky as her neck regarding surgery, maybe they are considering growth rods or even VEPTR there, so another question would be will it get the same type of treatment as her neck,and can the thoracic procedure be done later on, what are the pros and cons of whatever surgery they offer in her thorax, and again how will it affect her development, mobility, activity etc in the coming years
sorry this is a bit of a rambly letter, it is midnight in Australia, but i really wanted to respond. regards,and hope this is some help, Margarita, Ella's grandmother
Edited by margarita 2007-03-19 8:40 AM
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Extreme Veteran
Posts: 395
| Hi Melanie. I do agree that I would have her re-eval. for the veptr. and whatever else may have been suggested to you in the past, as in my VERY NON-MEDICAL OPINION, I would believe fusion at a young age to be the very last part of a treatment plan, given it does prevent further growth of whatever has been fused. Too, I only suggest this not in disrespect to anyone...but has she been seen by Dr. Robert Campbell in Texas? I know he has seen SO MANY incredibly rare and difficult cases in children with thoracic and spinal abnormalities and thought an opinion from him would definately be worth learning from.
Good luck to you and I'm thrilled for Ana and you that she has been doing so well.
Elizabeth |
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Expert
Posts: 3243
 
Location: Utah | Hi Melanie, I think part of the problem about not getting people to reply is that this thread is not used on a daily basis. Maybe people forget to look at ALL the threads... anyway, I'm glad you posted! I agree that Ana needs to be re-evaluated for VEPTR. She is older, and more stable than before. The VEPTR advances have improved and changed in two years also. I also agree that with a malformed spine like hers, growth rods are NOT recommended. They are too invasive in an already compromised spine. Please consider all options before allowing growth rods. Fusion does have its time and place. Cervical malformations are unique. I don't have direct experience with cervical surgery, but I know Dr. Emans does. I have met Dr. Newton and he is young and wants to be on the cutting edge of surgery. Listen to his comments, but make sure you have ALL information before making a decision. Dr. Newton tends to lean to growing rods over VEPTR, and I just don't think that's a good idea for Ana. This is my very humble PARENT opinion. I'll think about what questions I would ask. Hmm... interesting. You already have some good thoughts. Take care and I'll post again later. |
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Location: Plymouth, Pennsylvania | HI MELANIE,
I COMPLETELY MISSED YOUR POST...
GREAT TO HEAR FROM YOU AGAIN...AND THANKS FOR THE
UPDATE ON ANNA...
I ALSO HAVE TO AGREE THAT I THINK ANA SHOULD BE RE-EVALUATED FOR THE VEPTRS...
THE DIFFERENCE PF 2 YEARS COULD MEAN A GREAT DEAL...
I WOULD ALSO MAYBE CONTACT DR. EMANS AND POSE THE QUESTION TO HIM AS WELL, AND ASK HIM HAS HIS THINKING CHANGED IN THESE PAST 2 YEARS REGARDING ANA...
SENDING YOU OUR THOUGHTS AND PRAYERS FOR THE APPT. COMING UP...AND WE LOOK FORWARD TO HEARING ALL ABOUT IT WHEN YOU HAVE THE TIME...
GOD BLESS... |
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Location: Dayton, OH | Thank you all very much! You have given me great food for thought regarding a re-eval with Dr Emans and possibly Dr Campbell (he was on the first team to eval her two years ago with the Cincinnati ortho surgeons). I also appreciate the insight into Dr Newton's practice more than I can ever tell you. I would have never known that without you! AND, since that's the way Dr Crawford leans (growth rods) - it is really good to know ahead of the appt. You are all very kind and have a wealth of knowledge that is invaluable!
By the way, I was going through some of the older posts and found a thread regarding falling... and whether any of the VEPTR kids had experienced that issue. I find that facinating because Ana has been a child who "just falls" for no reason her whole life. One incident report at daycare said she was just standing still all by herself reading a book and fell over into the bookshelf. She doesn't do it as much right now as she did from one to two years old. I have spoken with the ped and ortho doc several times and they always poo-poo it like they never heard of it. I sort of tracked the pattern myself and discovered it seemed to happen the most during growth spurts which makes sense to me because the curves and assymetry would throw off equilibrium.... But it sounded like some parents were linking it specifically VEPTR. |
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Elite Veteran
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Location: Chittenden County Vermont | Melanie- Maggie use to fall for no reason much more before her veptr surgery. She seems to have a permanent bump on her forehead because of it. Her balance and equilibrium has vastly improved since the VEPTR.
On the other issue- I am a big fan of second opinions and third etc. I am also a big fan of Dr. Emans' honesty so I would go back to him if you have seen him or even if you have not.
susanne |
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Location: Dayton, OH | Thanks Susanne! Maggie's a little doll baby! I appreciate your confirmation re: falling. We have met Dr Emans and I was very impressed with him ... AND his compassion!
You all have helped push me to a decision: I just emailed Sue Ellard in Dr Emans office to schedule and appt to visit with him this summer. ... Melanie |
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Posts: 3970
Location: Plymouth, Pennsylvania | MELANIE,
IF YOU ARE GOING TO BE THERE IN AUGUST, WE MIGHT GET TO MEET YOU ALL...
I WILL BE GETTING A DATE SHORTLY FOR ZOE'S SURGERY...
GOD WILLING WE WILL BE STAYING AT THE DEVON NICOLE HOUSE, IF NOT WE WILL BE AT THE BEST WESTERN...
GOD BLESS... |
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Location: Dayton, OH | Johanna, that would be wonderful! I have airline tickets for the children that i need to use by early to mid August. Let's stay in touch. I've still got your phone number in my cell phone - just in case. Funny, I feel like we're old friends already!
I hope Zoe is better. You're in my thoughts and prayers. Melanie |
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Posts: 3970
Location: Plymouth, Pennsylvania | GREAT ANA,
I AM GOING TO BE LOOKING FOR A SURGERY DATE FOR THE FIRST WEEK IN AUGUST, AND AT THE LAST THE SECOND WEEK...
HOPE TO SEE YOU...
I WILL LET YOU KNOW WHEN...
GOD BLESS...
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| Hi Melanie,
We were told a while ago to fuse Gabi's cervical spine. I did a lot of research at that time and one thing that concerned me was that the head has to turn so much, I was reading that it puts a strain on whatever is not fused, becuase the cervical area sees so much twisting and moving. I have read it to be necessary sometimes. We put it off and have done okay so far. We were told that because there is a hemi at C5, it for surely will cause problems, but so far it has not lived up to it's ominous predictions. Things can't always be predicted. Anyway, they wanted to fuse her neck and do VEPTR at the same time, and I thought that to be too much at once. When we saw a different dr. he was fine with puting off the cervical fusion, for now. BTW< I think you should get more than three questions, I guess I was confused about that part. I was thinking about you guys and hoping you were doing well.
Mary |
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Location: Dayton, OH | Thanks very much for your input, Mary! It is great to hear from you. We leave here in just four hours. I've not slept much in the last couple days everything going through my mind --- all the "what if" scenarios keep running through my mind. I think the three questions they are allowing me are ones they will discuss when I'm not in the room - I think I can ask questions during Ana's exam and review.
More to follow, Melanie |
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Extreme Veteran
Posts: 395
| Thoughts and prayers with you today Melanie as you review Ana's "spine" options. The Lord will be your guide.
Elizabeth |
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Location: Dayton, OH | Thank you for your thoughts and prayers. I'm ready to sleep all night tonight! The Lord is a great guide! I was able to think of three core questions that each had a couple sub questions. It was a very formal affair with about 25 spine docs in the room observing Dr Newton's evaluation of Ana. They did not allow me to ask questions during the exam, but when we left the entire team went over her MRIs, X-rays, CT scans etc. They were going to work my questions together and will send me their responses and any advice, I'll share my questions when I get the responses, I'm bushed tonight. Thanks for all the thoughts and prayers.
Melanie |
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Elite Veteran
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Location: Chittenden County Vermont | Melanie- just want to note- prior to Maggie's expansions she starts to fall again- her equilibrium is off and she is not able to twist her torso as much- it usually resolves after an expansion.
Susanne |
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Location: Sterling, NY | Melanie and Jobey, I noticed you will be there in August for your girls? Chloe's surgery is scheduled for July 12th (stabilize the spine, excise a thoracic hemi and bony defect around it: kyphosis) and inplant a growing rod: probably not a veptr according to Dr. Emans. I'm not sure why he didn't think VEPTR and Carmell: why is growning rod not advised for severe thoracic anomalies?
I hope to see you all at Boston. |
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Location: Utah | Hi Cari, <<Carmell: why is growning rod not advised for severe thoracic anomalies?>> My lay-opinion on this is based on hearing various orthopedic surgeons talk about how the growing rod prematurely stops vertical growth of the spine. If you have an already compromised spine due to vertebral anomalies, and then you place growing rods as support, you are further damaging a spine that doesn't need more damage. The growing rods are more invasive (ie, they require fusion at the attachment sites - an invasive procedure to that bone structure, the spine between the attachment sites tend to stop growing vertically after 3-5 years, etc.). That being said, there IS - most definitely - a time and place for growing rods. I truly believe that. My ONLY problem (and this is a technicality, really) is when an orthopedic surgeon ONLY recommends growing rods for all patients. My problem is with the surgeon who doesn't find the best recommendation for the unique child. Growing rods and modified devices of any sort may be right for one, but isn't best for all. Our kids are unique and rare. Most orthopedic surgeons do not have the experience to successfully treat our kids. The few who do have experience should make sure they are offering recommendations for that child - not using textbook or general recommendations just because they only know one method of treatment - does that make sense? I'm not trying to confuse people more, just offering my opinion because the LAST thing I want is for parents to feel guilty for not finding the best care for their child. That's all. There are new advances in treatment for kids like ours. None of them are a one-size-fits-all right answer. Each new development has its time and place, and has a unique group of people/children it fits best. VEPTR is certainly not a "best" treatment for some kids, even very young children. Fusion has its time and place. It's the accumulation of knowledge that will give kids like ours the best care possible. That's all I meant - clear as mud? UGH - typing a message is hard to get a point across accurately.
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Location: Sterling, NY | Hi Carmell. We were originally told that Chloe would need VEPTR and/or growing rod, according to Dr. Emans. Now, he says just growing rod. I am sure he has his reasons but this bothers me a bit. |
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Elite Veteran
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Location: Chittenden County Vermont | Cari- Dr. Emans is a constant thinker and planner, he tends to mull things over and decide the best course of action after consulting with his contemporaries- he has Chloe's best interests at heart I am sure.
Susanne |
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Location: Utah | Hi again, Cari, I didn't mean to cause more emotional trauma (you have enough as it is). I hope you will be able to sit Dr. Emans down and ask him these things outright - ask him why a growing rod would be more beneficial for Chloe? what is the risk for growing rods over VEPTR? what is the long term plan (assuming there are no complications along the way)? How successful does he really think this will be? etc. Those are just a few questions I'd ask him before making any decision about surgery. I also agree that some docs tend to think out loud before making their final decision, and that once they make that final decision, they may not give details to the family/parents because they don't remember what they've said in their out-loud thinking process. Keep asking questions. Ask again if you don't understand. I agree that he will have Chloe's specific condition in his mind and will make the best recommendations for her. Getting over the emotional decision-making process is the hardest for us parents. Sorry I made it even harder. |
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| Hi Cari!
We are in a very similar situation. Dr. Emans has said that both the VEPTR and the growing rods would be possible for Lauren but that he prefers to use the growing rods in our case. Dr. Emans has been great with us. He has answered MANY, MANY emails and has even called us at 10:45 on a Sunday evening after receiving questions from us. Many people here have a lot of confidence in Dr. Emans and I must say I know why! We are going with him and will use his recommendation because I truly feel that he has considered Lauren's unique situation and both devices and decided what is best for her.
I would talk to him and listen to his reasoning. I agree with Carmell that hardest part is getting through the decision process.
Hope this helps.
Lisa Mayes - Mom to Lauren and Brooke |
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Location: Sterling, NY | Thank you. I think the best part of getting that terrible, terrifying letter, was (the only good thing, really) is getting a new-found motivation for questioning, understanding, reasoning, and rationalizing the procedures that will benefit Chloe. We'll definitely be speaking with Dr. Emans in further detail about this. Ana's mama, I'm sorry for detracting from your thread; your little Ana's situation provoked me to compare to my Chloe. I hope to meet you in Boston. |
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Need three questions for spine surg team
