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kerina313
07-19-2006, 07:23 PM
I just found this forum. My daughter was diagnosed with cystic kidneys and a heart issue in utero. We didn't know about the scoliosis until after she was born. My daughter had heart surgery when she was 8 days old to fix tetrology of fallot/pulmunary artresia/close the VSD. She's now like 8 weeks past the surgery and is doing well. We just had a scan of her kidneys for functionality last week, her right one has no functionality and I'm not sure of the percentage of the left.

Today was the appointment with the orthopedic dr. We had been told by other drs that there were only 2-3 vertebrae that were misformed. But they were reading an X-ray that was taken for the heart. We took X-rays today and the following are issues: Thorasic 7-13 and Lumbar 1-2. I'm being sent to another Dr to discuss issues as this dr had never seen such a complex spine. I know she has 13 ribs and she also has something going on with her left hand (thumb and wrist).

I'm kind of in shock, because I'm now having to think my poor angel is going to have another surgery and so soon. I'm hoping they'll get me in sometime here soon so I'll know exactly what she'll need and when.

If you got this far.. thanks for listening :)

Cakedec
07-19-2006, 09:12 PM
Kerina,

So glad to hear that your daughter is recovering well from her surgery for tetralogy of fallot. My son was born 26 years ago with tetralogy of fallot and at that time they did not fix it all in one step--they put in a temporary shunt which held him until age 6 when they did the open heart repair. It was a brand new procedure and even the medications they used on him were experimental and we had to sign permission forms for them to be used!!

So they have come a long way in treating these little ones born with the congenital problems. You have already gone through a big hurdle with her in getting her heart fixed. Now the doctors will work on the other challenges and you will face each one one day at a time.

Each of my three children has had medical challenges. Some, like the heart problem, we knew about at birth. Some did not present themselves until later on in their childhood or early adulthood. I am glad that we cannot see in advance all of the roads that we will walk. But each child is a special gift to you from God and you are given the privilege of loving them and walking with them through whatever medical treatments are available and necessary for them.

My advice is not to look too far ahead in what may or may not be in her future. Just love and enjoy her each day. Take her to the best specialists and use them to help make the best decisions in her treatments. God will give you the strength you need during that day, for that moment and that is all that you and she will need.

THere are many mothers on this site who have walked the path with infants with congenital difficulties and I will pray that they will come along side you for encouragement and strength.

Deb

Carmell
07-20-2006, 01:22 PM
Welcome kerina313,

I agree with Deb. Take a few deep breaths, and try to relax a little each day. Your little one is going to be fine. She sounds suspiciously like she has VACTERL Association - have they given her a label or diagnosis for her assortment of birth defects? My Braydon (now 11yrs old) is also a VACTERL patient. We found out about many of his birth defects before he was born. The first year or two is the hardest on us parents. You will do fine. Over time, you will get a better emotional handle on things, I promise.

Braydon has multiple minor issues. His biggest hurdle has been his spine issues. My suggestion is to have a good PEDIATRIC orthopedic surgeon who has extensive experience treating kids with multiple medical issues. I can't stress how important this is. If your little one's spine malformations are on opposite sides of the spine, there is a good chance her spine will stay stable for a long time and she may never need surgical intervention. Seeing a ped. ortho every 3-4 months in the first 2 years of life is very important. You need to make sure to keep an eye on things.

Also, after about age 6 months, she'll need a full spine MRI to make sure there are no problems with the spinal cord.

After all the issues are under control separately, maybe consider seeing the specialists at a spina bifida clinic. They are all the same docs you would be seeing separately (neurosurgery for spinal cord issues, orthopedics, urology, etc.) and you can get the appointments done in one visit! We've had very good experiences with SB clinic, but after all the initial repair was done. Feel free to email me and I'll be happy to share our experiences. Braydon has had 19 surgeries to date (4 clubfoot repairs, 2 bladder/renal surgeries, tonsil/adnoidectomy/ear tubes, a tethered cord release surgery, spinal fusion surgery and 10 VEPTR surgeries/expansions (I'll explain more if you'd like)).

My point is that you need to take care of each separate issue she has. Take it all one step at a time. Don't overload yourself. Remember to enjoy her every day. Remember to take care of yourself. I have a badly outdated webpage with some photos of Braydon so you can see how great he's doing. He'll be in the 6th grade this fall and lives life to the fullest. He just had his last day of golf lessons today - he did great! There are so many things that are good in life. I promise. Send me a note if you'd like - boulderfam@hotmail.com

kerina313
07-20-2006, 04:22 PM
Thanks for the replies. I just needed to get everything out last night after the appointment. I'm sure we'll be fine, just every so often I get a momentary OMG moment. The term you used sounds familiar. We meet with a Genetics person on August 28. Luckily we have been dealing with dr's associated with Children's Hospital in Washington DC.

She is a very special girl with lots of personality - even at 2 months! I'm blessed to have her.

Take a look at her: www.kerinakreation.com/emilyblake.htm

Erin

Carmell
07-20-2006, 04:36 PM
Hi Erin,

Thanks for sharing your photos of baby Emily. She's adorable!

I noticed that she leans to the left. She also has a tummy "pooch" to the right, just below her chest. Braydon looked very much like this as an infant, only a mirror image. He concave side is the right side.

In 10+ years of talking to other families who have similar situations, I haven't heard anyone seeing an excellent pediatric orthopedist for congenital scoliosis at Children's Hospital in DC. Once she gets recovered from cardiac surgery and everything else has been taken care of, I would suggest finding a ped. ortho. who has dealt with kids like Emily. She needs to see someone with experience with kids who have multiple issues going on. I would strongly recommend Drs. Betz or D'Andrea at Shriners hospital in Philly. Boston also has a good ortho (Dr. Emans).

She is beautiful and will continue to be the light of your life, as it should be. Take care and I look forward to hearing updates on how she's doing.

Oh, there is a good email list for families dealing with congenital scoliosis. You can read about it and sign up here...http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

My best to you.

kerina313
08-07-2006, 04:25 AM
Carmell - just a quick question - at what time did your son have his first surgery on his back..

I have another appt this week with the other ortho dr, I'm hoping to find out more about her spine - whether its only on one side or on both.. I'd definitely like to know more about the surgery and what to expect. If you have any suggestions as to what I should ask the dr - I'd appreciate it.

As far as going to Philly - right now, my insurance wouldn't cover going there. However, depending on what they say - I might look into it.

mariaf
08-07-2006, 08:24 AM
Hi Kerina,

Welcome. I see that you have received some very good advice so far. Carmell and the others have so much good information to offer.

Carmell recommended Drs. Betz and D'Andrea at Shriners Philadelphia and I couldn't agree more. I just want to point out that all care at Shriners is FREE. They will even assist with transportation if one cannot get there on their own. They don't care if you have insurance or what it covers because they do not bill for their services.

By the way, a note to all: They just added another spine specialist at SHC Philadelphia - Dr. Amer Samdani. He is featured in the current issue of the hospital newsletter if anyone is interested in finding out more about him. His credentials seem quite good - and I believe he may be the doctor Kathleen (Hannah's mom) told me about. She and Hannah met him during their stay there for Hannah's stapling and they both really like him.

Carmell
08-07-2006, 12:59 PM
Maria,

Is Dr. Samdani a neurosurgeon? If so, that's great that they have him on the "team" in Philly.

Kerina - PLEASE call Shriners in Philly. You need to get another opinion so you can make an informed decision. These surgeries (whatever you choose) are huge surgeries. Braydon had his fusion surgery done when he was an infant. I DO NOT recommend fusion surgery, if there are other recommendations. Fusion is SUCH a final procedure - you can't UNDO a fusion. Fusion has made Braydon's body much shorter than it should be. His lung function is compromised because of the fusion. His spine was so malformed that doing nothing would have been worse for Braydon. There are so many variables - you have to know as much as you can to make sure the surgeon has the right recommendation for your child.

Good luck and keep us posted.

mariaf
08-07-2006, 01:30 PM
Carmell,

Dr. Samdani's title at Shriners is listed as spine surgeon/orthopedic surgeon but his background IS in neurosurgery. He was the chief resident in the Dept. of Neurosurgery at Johns Hopkins. He also did a fellowship in Pediatric Neurosurgery at CHOP (Children's Hospital fo Philadelphia), etc. Some nice credentials indeed.

How did you know? Had you heard of him before?

I, too, am very happy that they added him to the team in Philadelphia to work along side Drs. Betz and D'Andrea. The children can only benefit from this addition. From what I have read and heard from Kathleen (I checked her e-mail and it was Dr. Samdani she had referred to), he also has a very gentle, compassionate bedside manner. I had e-mailed him to welcome him aboard and he actually wrote back to thank me the next day! I think we have a winner here :)

Kerina,

Please take Carmell's advice and seek an opinion from Shriners in Philly. As I mentioned earlier, you need not be concerned about insurance issues. I promise you will never see a bill from Shriners. If I can be of any further assistance, please let me know. Their phone number is on their website - or I'd be happy to provide it to you.

Good luck,

kerina313
08-07-2006, 03:28 PM
Thanks to both for the information. I looked up Shriners online. The only reason at the moment I'm staying with Children's is basically because it's closer and I want to hear what this dr says. I am going to ask her about whether or not she could transfer me up to Philly. Luckily I have a friend in Philly I could stay with if I needed to, but, it's only a 3 hr drive too.

Between you all here and the research I've done, I definetly want to wait on any fusion for her. Although, her back may be bad enough they may have to do it. I'm hoping for an alternative solution.

I've had really good luck with Childrens with her kidney and heart issue, so I'm hoping this dr I've been referred to, is just as good. If not, it's good to know I have a back up :)

I'll let you know how the appointment goes on Wednesday.

mariaf
08-07-2006, 03:36 PM
Hi Kerina,

I know it's tough to switch from a doctor or doctors that you are comfortable with and trust - and I'm sure the doctors at Childrens are great for issues associated with the kidneys, the heart, etc. as you stated.

I think the point Carmell was trying to make is exactly what one of the doctors told me to reassure me prior to my son's surgery at Shriners in Philly. He said that in the two or three decades he had practiced medicine, he had not found anywhere superior to Shriners Philadelphia when it came to PEDIATRIC ORTHOPEDIC SURGERIES - including the complex cases.

Of course, the decision is ultimately yours to make. Please just know that our hearts (mine and Carmell's) are in the right places in trying to recommend the very best doctors for such a specialized field.

As I mentioned, Shriners will help with transportation if necessary. And if surgery is performed there, they will accommodate one parent to stay overnight with the child for as many nights as needed. They really try to treat the entire family and make things as stress-free as it can be at a time like that.

Good luck on Wednesday and keep us posted.

Hugs,

Carmell
08-07-2006, 03:56 PM
Ditto what Maria said. Well done, Maria!

I, too, understand completely how you feel about having great care (so far) at Childrens. I have obviously trusted Braydon's LIFE to the hands of our orthopedic surgeon. I trust him with my child's life. That doesn't mean he isn't human and may not have the right answers 100% of the time. I have gotten other opinions about the "game plan" for Braydon from other guru's in congenital scoliosis research (I wrote to them back when Braydon was an infant-Drs. Winter and Bradford - both reassured me that at the time, we had the right plan set for Braydon). I trust Braydon's doctor but that doesn't mean I have to agree with everything he says. For example, I'm taking Braydon to Baltimore (from Utah - quite a cross-country trip) in April 2007 for another opinion about his leg/foot issues. Balitmore has a fabulous reputation for treating children with complicated limb issues. I want to make sure that our local ortho has the right "plan" for the limb issues too.

My point (and Maria's) is that you MUST make sure the procedure being recommended is the right one, done at the right time, by the right surgeon. Please consider (seriously) having her seen by the ortho team at Shriners in Philly. The worst that would happen is that they agree with your local doc and then you'll have peace of mind knowing you tried as many avenues as you knew possible. That's not a bad "worst" outcome, IMHO. I would hate for any parent to find out there was a better option at any given time for their child. Each patient is very different, and requires unique care. The team at Shriners in Philly sees many kids like this, not like the typical ortho who may never see a complicated case like your little one.

Like Maria said - our hearts are with you and we wish only the best for you and your family. No offense intended in any way.

mariaf
08-07-2006, 04:15 PM
Hi Kerina and Carmell,

Not to beat a dead horse, but I just wanted to add one more thing. My son was being seen by a highly recommended doctor from the Hospital for Special Surgery in NY for over three years before we found Shriners. While she may have been very well regarded, I could see that most of her patients were the more typical scoli patients (teenagers - mostly girls) and that she rarely saw infantile scoliosis cases. She was against the stapling surgery that David ultimately had becaues she considered it "still experimental".

She was ultra conservative in her approach which in my opinion was not the best approach for David. The doctors at Shriners are pioneers. Or, as Dr. Samdani referred to Dr. Betz, as a "true visionary". They come up with options that other "good" doctors wouldn't even think of. I know this from personal experience.

Now I promise that's all I'll say on the subject :)

More hugs,


It was VERY tough to go against her advice but I followed both my heart and my head because sometimes you just know what you must for your child.

blackwidow
08-07-2006, 04:30 PM
Hi, Kerina
I was reading through the posts about your daughter and I agree with the other moms. Although my son does not have congenital scoliosis he does have severe CP and a multitude of other medical problems since a baby. I seeked a 2nd opinion before making up my mind about spinal fusion for my son. I knew he would need the surgery no matter which doc I went to. But I sought out the 2nd opinion because I knew there were a couple of different approaches to the surgery as well as hardware used. Both docs agreed on their approach but the hardware differed. Also, it helps to decide which doctor you feel most comfortable with and trust with your child's care. In the end I still went with his original orthopaedic dr. since all of his specialists were at Children's and it was closer to home. But it gave me peace of mind that both docs were on the same page with the second opinion. In your daughter's case I would definitely seek another opinion because there may be other options besides surgery or to at least hold off til she is older. As a parent of a child with special needs you need all of the info. possible to make the best decisions for your child's care. Sometimes that means seeking other doctor's opinions and not just taking one doctor's word for it.

When you go see the dr. for a second opinion just make sure you take her x-rays and medical records with you to the appt. I wish you all the best! :)

mariaf
08-07-2006, 04:40 PM
Hi again,

Another member, who goes by the name "PaulsMom" also had a similar situation. Her son was 15 months I believe - and she went to three different specialists who had three different ideas about how best to proceed. She weighed all the options and went with the one that seemed like the best approach in her and her husband's opinion. So you are not alone :)

(You can look at her posts and if you like I can even put you in touch with her because we sent several e-mails back and forth and have kept in contact. Paul, by the way, is doing quite well last I heard.)

nikyergen
08-08-2006, 02:34 PM
Shriners will usually help with a motel if needed. But, if you ask the hospital about it, they will refer you to a Shrine Club, as that is where the funds come from. We have a specific person at our Shrine Club that we call when we are about 10 days before we travel.

kerina313
08-08-2006, 07:52 PM
Thanks for all the information.. I'm definitely going in to this meeting with the dr feeling a lot better about what I'm expecting..

For those of you whom went to Shriners.. did you have to get a local Shriner's to back you and when you applied, did you also have to make sure you had the scans, etc from the original dr so they could review it that way.. or did they actually take a look at your situation and made their own determination?

Erin

nikyergen
08-09-2006, 01:36 AM
Erin,
You can apply to the Shrine Hospital of your choice directly, over the phone, if you wish. It doesn't matter. My husband is a Shriner also and has signed applications for those that need them. When we applied we had another Shriner sign our application. But, you do not need to have a Shriner's signature to be accepted.

We did have our daughters doctor make his recommendations to the Shrine Hospital. He didn't do any x-rays because he knew the hospital would do them again. He also recommended that all siblings be examined too. Low and behold, all three of our daugthers have scoliosis or kyphosis. Guess who they got it from? Me. We just found out last summer that I have scoliosis. Just to let you know how easily it is missed, my mother was in the medical profession, a registered nurse, in a pediatrician's office while I was growing up. Hopefully, mine won't cause any problems as I grow older. I am 45 and do pretty much anything I want without pain. However, I do work at keeping my back supple and back muscles strong.

We didn't have any x-rays, mri's, or anything like that for our first appointment. They did all of that for us at Shriners. You do not need these things in order to get into Shriners.

Keep us posted about your appointment. If it comes down to surgery, something very important is a hospital that specializes in children. I really feel the kids get way better care at a child oriented hospital. The nice thing about the Shrine Hospital is they only deal with children and if your child is sick (cold or flu) they don't even want them there for an appointment. We've had to cancel appointments because of colds/flu. They are most appreciative when you cancel to keep your germs at home. They don't want their fragile healthed patients infected and for the most part all the children they deal with are relatively healthy considering their various orthopedic issues. If you end up at a Shrine Hospital for surgery, you will notice the children are not sick, they are only there because they had surgery.

Has anyone told you that your child will be treated at the Shrine Hospital until their 21st birthday, at no charge, for whatever they were diagnosed for. This is true for other orthopedic problems that may come up along the way and is diagnosed before they are 18 years old.

Things to be prepared for at Shriners - sometimes the wait can be long. You have to be patient and realize maybe there is another child that needs treatment more urgently than you own. It is a hard concept to hold on to, but it really helped us in understanding. If you are scheduled for a surgery, it can be rescheduled at a moments notice because of maybe a child that has cancer has a short window to have some sort of orthopedic surgery. Our daughter's surgery was originally scheduled for 3/15/05. It was cancelled on 02/25/05, only to be rescheduled for the orginal date on 02/28/05. So, as you can see things can change dramatically. The best part was we were told it would be at least 12 months before her surgery. She had her surgery almost 6 months to the date of her diagnosis. Check ups can get rescheduled too. We just got a notice that an appointment on 9/28 has been rescheduled for 9/21. I guess we have learned to just go with the flow and that it is a small price to pay for such wonderful care.

Sorry this is so long winded.
Nikki

kerina313
08-09-2006, 08:45 PM
Thanks for all the support. Today's appointment was LOOONG.. waiting that is...I personally wouldn't have cared, but it was 2 hours before I got in the back and it was another 1 1/2 before I got out. All for about 15 minutes between the PA and the dr.

First off, I asked her if she thought Em should go to Philly to see Dr. Betz. Dr. Blakemore told me if she were to actually refer her to anyone, it would be the dr in San Antoinio who came up with the VEPTR procedure.

Basically fusion is out. There are too many anomolies in her back. They would like to do the VEPTR (not sure I'm spelling it correctly) on her, but I pointed out about her still having to have more heart surgeries.. so I guess they'll ask the heart dr's on whether that procedure will interfer with the heart surgeries.

If it does, it will be the rods. So right now, we're just waiting, as Em is only 3 months old atm. They'll do xrays every 3 months to keep an eye on her curvature as she grows.

As far as the dr, she seems like she knows what she's doing. She spent time with both the dr in San Antoinio and also worked with Dr. Betz. Since right now there's not much they can do, I'm going to hold off for the time being. I'm just trying to get back to work after being off on maternity leave and between that an all the appointments prior and after, I'm so in the hole with leave.

I'll keep you posted on any new updates on her :)

Erin

blackwidow
08-09-2006, 09:11 PM
Hi, Kerina
I can certainly relate to long doctor visits. I don't know what it is they must overbook patients. The children's hospital my son goes to has just gotten too big. I've gotten to the point where I'll just leave with my son if I have to wait too long as long as nothing important is going on with him. I know it can be frustrating. They act like you got all day! I hope your transition back to work goes smoothly. I also know what it is like to have all your vacation time eaten away. It is tough. I'm hoping I was able to at least salvage a few hours of my PTO before it ran out. At least I was able to return to work earlier since my son did well with his surgery and it helps that I do my work from home. If I didn't work from home I would be in big trouble no doubt. I wish you the best and take everything one step at a time. Which it sounds like you are doing.

mariaf
08-10-2006, 10:20 AM
Kerina,

I can certainly understand your taking a deep breath for the moment. I'm a bit surprised that the dr. and PA combined only spent 15 minutes with your daughter (if I understood you correctly).

I guess I have been lucky. I have never had an unusually long wait at the Shriners hospital, at least the one in Philly. We don't go right in - but we don't wait for hours either (as I've heard is the case at some other hospitals -not just Shriners but hospitals in general). And if you did decide to go there, you do not need anyone (a shriner) to sponsor you. We didn't have one and were never even asked about this.

I believe Carmell knows an awful lot about the VEPTR procedure so you are very fortunate as I am sure she will be happy to share it all with you. If you trust Dr. Blakemore and wish to travel to San Antonio to see the doctor he recommends, I can certainly understand that. I also would trust Dr. Betz with ANYTHING to do with the spine since he is considered one of the world's top spinal surgeons. I don't think anyone would argue with that assessment of him.

Of course, it's most important to do what you are comfortable with. Whatever you choose, please keep us posted - and I wish you all the very best :)

hugs,

Carmell
08-10-2006, 01:36 PM
Hi Erin,

Thanks for the update. I wish you didn't have to wait so long to see the doc and PA. Sometimes we get so frustrated waiting that it overshadows the purpose of the appointment. Try not to let that happen.

Braydon is very much a VEPTR success story! I'd be happy to share our experiences with you. Dr. Campbell and his team in San Antonio are very good (Braydon had his implant surgery there). Dr. Betz is also very good. Both are equally experienced in treating kids who qualify for VEPTR surgery.

My gut feeling about Em seeing a VEPTR surgeon (either Campbell or Betz) is that timing may be important for her. The San Antonio site is so overloaded with patients. You may be waiting many months for an evaluation appointment. Then, many more months for an implant date (if she's accepted as a patient). Dr. Betz (and his team, including Dr. D'Andrea who is wonderful) may have better timing to see her.

If I were in your shoes, I would go to Philly. They have LOTS of experience with kids who have multiple spine/chest anomalies. I don't think you could go wrong. You could make an appointment with both places, if you need to, but I think that's unnecessary. You will be in great hands wherever you choose to go.

Let us know if you have any more questions.

kerina313
08-11-2006, 09:01 PM
Well I'm not sure she'll qualify for the VEPTR procedure. She had pulmunary artresia and tetrology of fallot, which means she'll be having at least 2 more heart surgeries that we know of.. so because of that I'm not sure the rib portion of the VEPTR would work..

But who knows..the Dr. was supposed to go and speak with the cardiac surgeon as well as the cardiologist at Children's to get some feedback from them on whether or not it would be possible to do..

yes, I was a little frustrated on the waiting time.. more for Em.. I really needed to change her diaper and they won't let you do it in the waiting room and I was afraid of Murphy's law of had I left to go to the bathroom to change it, they would have called my name..

Then I was frustrated at the Dr... it seemed the PA knew more about Emily than the Dr did..plus when I started asking questions concerning the curvature and the exact parts of the spine that didn't grow, etc.. they couldn't answer me.. they said it would be in my letter when they sent it out.

My county I live in has a special program that is federal funded to help us get PT/OTs etc to keep Emily on the correct developmental path.. anyone have any good suggestions as to what kind of PT or OT stuff I should be working with her on while she's still waiting on surgery? Do you think it will help in the long run?

Thanks for listening :)

blackwidow
08-11-2006, 11:22 PM
Hi, Kerina
Is she in the birth-3 program for PT/OT? I'm assuming that is what you mean. If she has started seeing PT/OT I would stay and watch the therapists work with her and you can see what kind of things they are working on with her and ask questions. Also the therapists should give you a home therapy plan of things to work on with her.

kerina313
09-30-2006, 07:42 PM
Update - We finally got a letter from the dr explaining a few things.. would like to hear your opinion on osome things...

They said from the chest xray they measured a right 60-degree thoracolumbar curve.

Now for the part that concerns me:

The last option, which we feel would most likely be the best option for Emily, would be to use a VEPTR. This is similar to the growing rods in that it allows us to stabilize the curve while allowing growth potential; however, the VEPTR construct attaches from the spine to the chest walls, and therefore, it would allow us to distract the ribs on the collapsed side, which could lead to increased improvement. Ideally, this surgery would be performed no sooner than Emily's first birthday.

The goals of Emily's scoliosis management would be to maximize the growth of her spine while minimizing the progression of her curve and delaying the fusion to allow increased trunk growth leading to improved lung function. Ideally, we would perform the dfinitive spine fusion around Emily's eighth birthday if possible. If Emily's parents were to agree to the VEPTR or growing rod treatment, they would need to be lengthened, to allow for trunk growth , in the operating room every six months

Now my question is for those whom have had this procedure, is it an outpatient procedure to lengthen the rods? And who else thinks that fusion at 8 years old is a problem?

We got the results of the MRI back - the three things they were looking for - she doesn't have. They said her spinal column was normal.

Any information would be helpful!

blackwidow
09-30-2006, 09:17 PM
Hi, Kerina
I know that by 8 years old the lungs are fully mature. So spinal fusion could be considered at that time.

Carmell
10-01-2006, 12:01 AM
Hi Erin,

Interesting - a very detailed dictation from the doc. Thanks for sharing with us. This doc is correct saying that the VEPTR procedure addresses lung function issues when the growing rod does not. IMHO, there is no question that you can rule out growing rods for Emily.

<<...is it an outpatient procedure to lengthen the rods?>>

The VEPTR procedure is being perfected more and more everyday. Some of the kids are able to have their expansions as outpatient (go home the same day). The surgery is still major surgery using general anesthesia. Braydon typically stays in the hospital 2 nights after expansions (one time out of 9 he was able to go home the next day).

<<And who else thinks that fusion at 8 years old is a problem?>>

ME!!! Fusion that young - before the spine has reached skeletal maturity - has so many potential complication factors. If the VEPTR is done correctly, and the patient doesn't have any complications (like Braydon) the VEPTR device should continue to be expanded until the child is skeletally mature (around age 14-ish for girls). Braydon was "older" when he had his VEPTR implants (he was 6yrs old) but in 5+ years, he is still doing very well. His skin is still extremely healthy. The incisions heal very well and he has had no problems with having back surgery every 6 months. (I know I sound like a walking commercial for the VEPTR, but the benefits Braydon has received are more than we had ever hoped for.)

So good to hear the MRI was normal! A huge relief, I'm sure. Take care and please email me if you want to talk more details. I'd love to know the surgeon suggesting VEPTR and other details. my email is boulderfam@hotmail.com