PDA

View Full Version : New here & just trying to figure out what the best options are for my daughter. Help



Sierras Mom
10-14-2011, 10:28 PM
Hi thank you for reading this. My daughter had her first two spine surgeries in 2008 done by Dr. John Johnson in Louisville, ky. I did not like him from day one but my daughter's Pediatrician said he was the best. At first she was fine but then began to have pain at the top of her scar and over her right shoulder. After repeated visits with him only saying that she needed therapy, I got frustrated and asked to see Dr. Puno. Right away Dr.Puno found that her bars were coming through her back, one was - coming through the skin in the middle top of her back and the other had cut through the muscle on her right shoulder. So Dr. Puno did surgery on her taking out the original harrington bars and replacing it with a rod that only goes from her neck to midways on her back.

After repeated visits with Dr. Puno, he does not see a problem with her back, he won't even schedule an MRI until December. Her back has begun to hump over the right shoulder badly, the back of the spine appears to be pushing inward causing her stomach(what little stomach she has that is) to pooch out, and her body is beginning to twist around towards her front right side and she cannot walk straight. She's in pain everyday and it's horrible. She has also lost a inch of height now.

She had a horrible "s" curve to begin with, somewhere around 70% curve on the top and 60% on the bottom. When they opened her up they found that her spine was twisted backwards and they had to turn it around. I might also add at this point that she has also gone through 3 open heart surgeries because of Pulmonary Atresia with VSD and overriding aorta. She is being treated for seizures, has a slight learning disability and has recently developed acid reflux which could be a commom side affect to problems with the spine I have read.

I am scared to death, I look at her and wonder how much longer can she take this before something else happens, her back is so bad that it just looks like its about to explode. I fear if we don't do something soon there will be irreparable damage done to her.

I know this was lengthy but we need help. I am considering finding another doctor...would prefer him to be one of the best and I'm willing to travel out of state if I have to in order to get her the help she needs. I don't even know how we would manage or afford going out of state since my daughter recieves health insuance through the state but I don't know what to do. Dr. Puno is a wonderful doctor but somehow I think he is just taking the spine in consideration alone, she looks as if she needs her whole back reconstructed at this rate. Please I would like your feedback on doctors that you feel are the best and those to stay away from, or even just any advice. Thank you again for taking the time to look at this and if you prefer to reach me through personally, you can email me at:

krnoon1@gmail.com
.
These pictures were taken today of her back. If you would like to see what her back looked like before and after her first surgery you can see them on youtube at: http://youtu.be/UsqBZf44NVE

1086 1087 1088 1089

Have a wonderfully blessed day!

Kellie Noon

Doreen1
10-15-2011, 11:52 AM
Hi Kellie,

Thank you for sharing your journey. I'll pray for you to have strength to find a solution for your daughter's situation and also pray for your daughter to keep strong. How old is your daughter?

Dr. Lawrence Lenke is one of the top spinal surgeons for both pediatric and adult scoliosis. http://www.stlouischildrens.org/content/findaphysician.htm?page_id=3188&inCtx12action=4&inCtx12dir_id=3&inCtx12view=13&inCtx12pg=0&inCtx12searchParam=3_L_L_&site_id=1&minor=2&major=1&inCtx12char=L&inCtx12mem_id=1778

He does a lot of revision surgeries and specializes in the most severe cases.

Dr. Lenke is also head of the spinal dept. at St. Louis Shriner's Hospital who provide surgery to youth under the age of 18 at no cost. I suggest you call Dr. Lenke's office at 314-514-3500 and talk with Naomi to see what your options are.

I am traveling out of state for a surgery with Dr. Lenke for myself.

There are other families on this forum whose children have received help through Shriners. I'm sure you'll hear from them soon.

Warmly,
Doreen

LindaRacine
10-15-2011, 03:28 PM
Hi Kellie...

I'm sorry to hear that your daughter has had such a difficult time.

Dr. Puno's partner, Steve Glassman, has a good reputation. I don't know if they allow patients to move from doctor to doctor in that practice, but it might be worth an inquiry. Also, I agree with Doreen, that Dr. Lenke would be an excellent choice. Unfortunately, there's usually a bit of a wait to get in to see him.

Regards,
Linda

leahdragonfly
10-17-2011, 09:19 AM
Hi there,

I am so sorry to hear about all your daughter's troubles. From the photos and your description of her back, in really sounds like she needs to see another revision expert. As Linda mentioned, Lenke would be a great choice. He also has a partner, Dr Scott Luhmann, who is outstanding and specializes in pediatrics. Dr Luhmann did my daughter's surgery at Shriner's St Louis, and we loved him. Dr Lenke I believe also does some work at Shriners St Louis.

I would strongly recommend you contact Shriners Hospital St Louis directly. Dr Luhmann's nurse, Janet Schick, should be able to assist you. Her number is 314 432 3600 x 1611. In the meanwhile you can download an application (which is a simple formality) and send it in. The only requirement is the child would benefit from Shriner's specialized care, which goes without saying in your daughter's situation. All care is free of charge to the family, although they will bill any insurance that is available to defray the costs to Shriners.

My daughter had a simple surgery (vertebral body stapling), but we had wonderful care in St Louis. Family services there can assist with travel arrangements/lodging/expenses etc. Everyone was very helpful and supportive.

Good luck, don't be afraid to persist until you get your daughter seen. Please let us know how things are going.

Sierras Mom
10-17-2011, 05:35 PM
I cannot tell you all how I appreciate the great information. I did call Dr. Lenke's office today and he does not go to Shriners any longer, they suggested Dr. Bridwell who actually taught Dr. Lenke. I called Shriners and they mentioned a couple other doctors as well one of which was Dr. Luhmann I believe. They are going to check and see if there would be a doctor who is just as knowledgable as these doctors at the Lexington Shriners so I would not have to travel as far. Honestly I don't care to go out of state if he means she is going to get the best care.

Linda, I know Dr. Glassman, he did surgery on my sister and messed up terribly, Dr. Puno had to repair his work and he would not even come in an apologize to my sister so I'm not a fan but I appreciate you mentioning him.

Doreen, thank you for the prayers we definitely can use them!!

Gayle, (my sister's name is Gayle and spelled the same!!) Thank you for the information I will give her a call. I have the application for shriner's pulled up now and am getting ready to fill it out.

I have to tell you all that your responses have given my daughter and I more hope than I have had in a long time, I'm just so thankful!!

I will keep you all posted!

Kellie

LindaRacine
10-17-2011, 09:29 PM
Wow, sorry to hear that.

rohrer01
10-23-2011, 01:53 AM
How old was your daughter when she had her first surgery, which looked successful? If she wasn't skeletally mature, which it looks like she may not have been, I'm wondering if she isn't suffering from the crankshaft phenomenon, where the spine continues to grow, but the rods won't allow it to grow longer, therefore it twists instead. That's my best guess. I hope Shriner's can help. From what I've been reading on the board they seem to get kids in rather quickly as compared to some private practices. Whatever the case, I wish you both all the best.

LindaRacine
10-23-2011, 01:33 PM
How old was your daughter when she had her first surgery, which looked successful? If she wasn't skeletally mature, which it looks like she may not have been, I'm wondering if she isn't suffering from the crankshaft phenomenon, where the spine continues to grow, but the rods won't allow it to grow longer, therefore it twists instead. That's my best guess. I hope Shriner's can help. From what I've been reading on the board they seem to get kids in rather quickly as compared to some private practices. Whatever the case, I wish you both all the best.

I think Sierra is too old for crankshafting to be a problem.

titaniumed
10-23-2011, 02:41 PM
Hi Kellie

I hope you can get hooked up with the right surgeon. There are times you have to make that move, this is probably one of those times.

If she is still on meds, they can cause heartburn. One of the things I do is sip on water all day long. Water dilutes acids.

Try not to worry, there is always light at the end of the tunnel.
Ed

Pooka1
10-23-2011, 04:17 PM
Hi Kellie,

Sierra is such a beautiful child. You will find someone to help her.

It appears from the radiographs on the video that they used mostly hooks and not screws, is that correct? How old was Sierra for the first fusion?

Good luck.

Sharon

rohrer01
10-23-2011, 04:38 PM
I think Sierra is too old for crankshafting to be a problem.

Yeah, I know you are definitely more qualified to answer on this one. I just can't see how such a good looking surgery wouldn't hold. Some girls are late bloomers and mature later on. I would say most are done by 16 though. I was still growing at 16 or rather shrinking. I lost 3/4 of an inch between 15 and 16 years old. But, I had a MAJOR growth spurt between 13 and 15. I went from about 5'2" to 5'8". This girl looked about 12? I'm just guessing, that's why I asked. I sure hope someone can help her whatever the reason for her problem. My heart goes out to her and her family.

LindaRacine
10-23-2011, 08:31 PM
Yeah, I know you are definitely more qualified to answer on this one. I just can't see how such a good looking surgery wouldn't hold. Some girls are late bloomers and mature later on. I would say most are done by 16 though. I was still growing at 16 or rather shrinking. I lost 3/4 of an inch between 15 and 16 years old. But, I had a MAJOR growth spurt between 13 and 15. I went from about 5'2" to 5'8". This girl looked about 12? I'm just guessing, that's why I asked. I sure hope someone can help her whatever the reason for her problem. My heart goes out to her and her family.

The X-ray in the video doesn't look all that great to me. The implants look like they had already started to re-rotate. The fact that one shoulder ended up way higher than the other after surgery should have been a huge red flag.

Regarding crankshafting, I haven't done much reading, but I think crankshafting was really only an issue with very young kids. I'm not sure how old Sierra is, but she looked older than 12 to me (although I'm a very bad judge of age). :)

Elisa
10-23-2011, 08:43 PM
I've done a bit of research on crankshafting b/c I was concerned about my son being only 14 at the time of his fusion and boys really grow a lot at that age. Anything I've read said crankshafting occurs mainly with much younger children, those under the age of 10 for girls and 12 for boys. If the original poster comes back perhaps she will let us know how old her daughter actually is b/c it is so hard to tell from pics.

Susie*Bee
10-23-2011, 08:43 PM
I remember Aussiemum's daughter, Ellysia(?) had a crankshafting problem, and she was 16. I'm not sure what happened, but I know she would be glad to respond with her information if you sent her a PM. She was always pretty helpful.

Pooka1
10-23-2011, 09:07 PM
I remember Aussiemum's daughter, Ellysia(?) had a crankshafting problem, and she was 16. I'm not sure what happened, but I know she would be glad to respond with her information if you sent her a PM. She was always pretty helpful.

No Elysia was about 11 when she had the first surgery. She had all hooks, no screws. That situation might be ripe for crankshafting.

Pooka1
10-23-2011, 09:11 PM
No Elysia was about 11 when she had the first surgery. She had all hooks, no screws. That situation might be ripe for crankshafting.

I was wrong. She had just turned 14...


Elysia 16 in Feb 2010
Sydney - Australia
Feb 2008 Fused T5-L1 and 5 ribs removed.
Dec 2009 - Crankshafting
Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

I hope she is doing well.

ETA: Though she had just turned 14, she probably had a very low Risser. I don't recall.

rohrer01
10-23-2011, 11:37 PM
The X-ray in the video doesn't look all that great to me. The implants look like they had already started to re-rotate. The fact that one shoulder ended up way higher than the other after surgery should have been a huge red flag.

Regarding crankshafting, I haven't done much reading, but I think crankshafting was really only an issue with very young kids. I'm not sure how old Sierra is, but she looked older than 12 to me (although I'm a very bad judge of age). :)

I was mainly looking at her before and afters and not the x-rays. I guess I wouldn't expect perfect symmetry with the shoulders or any other part considering how she was before. I thought she looked much better and then later on, her rib hump became prominent again. I don't know anything about hardware or what a "good" hardware placement looks like. I'm just a layman. Anyway maybe her mom can come up with some questions even based on what the average person like me observes.

walid
10-24-2011, 06:36 AM
Just keep on keeping on and know that the answers are there when you need them. Sierra is lucky to have you as her mom. Shriner's is fantastic; hope you can see them soon. Seems you have lots of experts here too ... everyone is so full of wisdom. Love it!! Cheers.

Sierras Mom
11-14-2011, 01:04 PM
How old was your daughter when she had her first surgery, which looked successful? If she wasn't skeletally mature, which it looks like she may not have been, I'm wondering if she isn't suffering from the crankshaft phenomenon, where the spine continues to grow, but the rods won't allow it to grow longer, therefore it twists instead. That's my best guess. I hope Shriner's can help. From what I've been reading on the board they seem to get kids in rather quickly as compared to some private practices. Whatever the case, I wish you both all the best.

Hello, She was 14 when she had her 2 first surgeries and then she had her 3rd one the very next year. She has had 3 open heart surgeries as well which I have
heard can cause the spine to turn as well. I have not heard of crankshaft phenomenon. When she had the first surgery she gain an inch and a half but she has
now lost that.

Thank you for the info!

Kellie

Sierras Mom
11-14-2011, 03:01 PM
I am so sorry it took me so long to reply my life just turned upside down...of course when it rains, it pours and then life goes on again. As far as all of your
comments let me say thank you for being so kind as to offer your advice and support it truly means alot to me.

Elisa, your child's back looks amazing!!
Pooka1, Thank yo for the compliment, I think she's beautiful too but I am partial...lol I have to be honest here and tell you that I am not sure what they put in her back. It was our understanding that He was putting screws in her back. I didn't even know they put hooks in the back, Dr. Johnson was not the most talkative
man and when he did speak, it was while looking at us and dictating into his recorder really fast. I probably missed it. Since you have mentioned it though and I
have compared her back to others, it doesn't look like she has screws to me at all. It also appears to me that compared to other's there wasn't even enough
"screws" or "hooks" put in her back to begin with to keep the curve straight.

As far as how old she was, looking back, I realize that she was 13 not 14 like I told Rorher(sp?). She had one surgery April 28th, 2008 to remove a rib and disc.
Then she had a second one on May 5th to fuse her back. She turned 14 in August. Then she had this last surgery in Oct. 2010 to remove the rods and Dr. Puno put a half rod in because she was curving above the other one. Now, my daughter and I are having an argument about how long the rod was, she says it went from T3 to t4 which doesn't sound right to me...lol As a side note, she couldn't stand the pain of being in school all day anymore so now a teacher comes to our home to teach her. Anyway she is sitting at one end of the table and me at the other and we are driving each other crazy...lol She's a good sport through all
of this, I don't know what I would do without her. So getting back to this last surgery I am not for sure how long the bar is.

Oh and to update everyone, karen Brendell from Shriner's called around the first of November and told me that Sierra was denied surgery. According to her,
Sierra's surgery would be too "medically involved to receive care there" because they do not have an ICU unit. I was truly floored as well as disheartened. Honestly though, how does a hospital not have an ICU unit? And I've seen some of the pictures of their work and some of those backs looked way worse than Sierra's so I have to look elsewhere. Fortunately for Sierra, being out of school and being able to rest between doing her work has helped ease her pain so we have alittle more time but still I am so disappointed for her.

I have a question for you all......Which is better, and Orthopedic spine surgeon or a neurosurgeon who has specialize in Spine surgery?

Susie Bee - thank you for the suggestion I may pm Aussiemom and pick her brain.

I'm sorry this is so long. I do hope you each have a wonderful evening.

Kellie

leahdragonfly
11-14-2011, 04:21 PM
Hi there,

I am sorry to hear you were denied at Shriner's --I have heard of a few kids with complex medical problems being turned away. Curious though, which Shriner's was that?

I would still suggest you get in contact with Janet Cerrone, the PA for spine surgery in Philadelphia. They see all sorts of very complex spine cases, so perhaps they can help your daughter. Janet is also an extremely nice person. Her e-mail is janetcerrone@comcast.net

Good luck,

rohrer01
11-14-2011, 05:52 PM
Maybe you need to contact the Shriners in Portland or Seattle. Those two boys are definitely complex surgeries (Elias and Walid). It might just be that particular hospital. Sorry to hear your bad news and that your daughter is in pain.

Elisa
11-14-2011, 06:57 PM
Maybe you need to contact the Shriners in Portland or Seattle. Those two boys are definitely complex surgeries (Elias and Walid). It might just be that particular hospital. Sorry to hear your bad news and that your daughter is in pain.
Just to clarify, Walid is at Shriners in Spokane Washington, not Seattle.

The Shriners at Portland doesn't have an ICU either but they do use the ICU if needed at the neighbouring OHSH... they are connected by way of walkways. The other halo boy Ryan, who had anterior surgery (Dr. Krajbich) did spend a night in the ICU. I agree with Gayle (leahdragonfly) contact the person she gave you the email link to.

mabeckoff
11-14-2011, 07:31 PM
If you are interested in going to Southern CA, my awesome surgeon said that he would be glad to go over your daughter's case. Let me know

Sierras Mom
11-15-2011, 06:19 PM
Hi there,

I am sorry to hear you were denied at Shriner's --I have heard of a few kids with complex medical problems being turned away. Curious though, which Shriner's was that?

I would still suggest you get in contact with Janet Cerrone, the PA for spine surgery in Philadelphia. They see all sorts of very complex spine cases, so perhaps they can help your daughter. Janet is also an extremely nice person. Her e-mail is janetcerrone@comcast.net

Good luck,


Thanks Gayle, I did email her so we will see what happens! She was denied by St. Louis which happen to be the closest for us.

robinlbe
11-25-2011, 10:21 PM
to Sierra's mom...
I've just joined the forum and noticed your daughter's surgery was done in L'ville.....I've not heard of your daughter's doctor, but your experience scares me to death. We're brand new to the world of scoli.

my 14. y.o. son was just diagnosed, and we saw Dr. Campbell at the Leatherman Spine Clinic two days ago. He definitely was not knife-happy, for which I am grateful. My son's scoli is congenital, and can not be corrected with a brace, and surgery will be the absolute last resort - and only if the curve gets worse. We go back in three months for more xrays and evaluation. Since he still has quite a bit more growing to do, they are going to keep a close eye on him - but right now the plan will be to fuse him if the curve continues to progress. It's currently at 34 degrees and is in the T4-T5.

Oh, and we live in New Albany.....

Sierras Mom
11-30-2011, 03:45 PM
I'm so sorry to hear about your son, this is not a fun journey so my heart is with you. What is his name? I will keep him in my prayers. I personally have not met Dr. Campbell but he did do my sister's surgery and he did a very bad job. He fused her and then she went home an nearly died because he had punctured her
spinal fluid area which caused it to link out in an extremely high rate, she was told had she not come back to the hospital when she did, she would have died.
While the other doctors did come in and apologize profusely, Dr. Campbell refused saying he did nothing wrong. This was some 20 yrs. ago though and maybe it was a different Dr. Campbell, I dunno but when my sister heard I was going with the Leatherman Spine Institute she begged me with tears in her eyes not to
see them. Since Sierra's peditrician said he would take his own child to Dr. Johnson because he was the best I gave in because I thought, "well, this other guy
was probably young and mistakes happen." Probably not my best thought looking back now. Dr. Puno is an excellent doctor, I would recommend him to anyone
but the reason I chose to look elsewhere is because it's not like we can just keep taking her in for repairs when they don't really see the problem, this had to be
fixed by someone with much expertise. I will say that Dr. Puno was trained at Shriner's Twin Cities which gives him an advantage over the other doctors and he
has invented a few pieces that are used in the back. I will also tell you that what he and the other doctors have invented are sold by a company who gives them kickbacks for using their products exclusively. I read this recently on the internet so I would suggest you do lots of research.

What I want to tell you though is that if you could go to a Shriner's hospital with world renowned doctors where all of your child's medical expense was covered wouldn't it be worth it? Not only do they cover the expenses, they will fly you there if it is at a great distance like it is for us. They also have a place for family to stay on campus and discount on food you purchase. I imagine you could go grocery shopping and get some things so the expense there would be limited as well. What I would suggest to you is while your son is not at surgery stage that you start doing research and maybe you could even get a second opinion, maybe even from Shriner's. I know it's hard to think about picking your life up a taking a trip several hundred miles away but in my daughter's case, I just can't see putting her through this over and over again. I do wish you the best of luck and again you have my prayers and friendship. My personal email is:
krnoon1@gmail.com and I am on face book as well under, Kellie Foster Noon.

Take care! Kellie

Oh I forgot to answer your question....I live in Boston, Ky. which is 45 mins. from Louisville. Most of our family live in Louisville though.



to Sierra's mom...
I've just joined the forum and noticed your daughter's surgery was done in L'ville.....I've not heard of your daughter's doctor, but your experience scares me to death. We're brand new to the world of scoli.

my 14. y.o. son was just diagnosed, and we saw Dr. Campbell at the Leatherman Spine Clinic two days ago. He definitely was not knife-happy, for which I am grateful. My son's scoli is congenital, and can not be corrected with a brace, and surgery will be the absolute last resort - and only if the curve gets worse. We go back in three months for more xrays and evaluation. Since he still has quite a bit more growing to do, they are going to keep a close eye on him - but right now the plan will be to fuse him if the curve continues to progress. It's currently at 34 degrees and is in the T4-T5.

Oh, and we live in New Albany.....

jrnyc
11-30-2011, 04:18 PM
i would suggest you call Dr Lenke's office and ask
if they will see you...or if they will take a look at your X rays....
Dr Lenke is famous for doing the most difficult of patients....
i think it is important that you start a file on your daughter's medical issues if
you have not done so already....you need to know what kind of hardware she has, etc....
you are her only advocate....any surgeon willing to consider revision surgery will
want to know all the details of what has already been done...
if you have any written reports from her surgery, that would be helpful....
maybe you could start gathering information....if you do not have such info, you
might want to start requesting it...
....you may have to put your requests in
writing, but it is a place to start...and do keep copies of everything!

jess

Sierras Mom
11-30-2011, 05:26 PM
Hi Jess,

Thank you for the info, I got every record I could get my hands on and even took pictures of my daughter's back before I shipped the couple pound envelope
off. I had been keeping some stuff already, especially operative reports....etc....It's ashame when you realize just how much the doctors don't tell you that the operative reports do, I have been stunned many times!!

Have a great day!

Kellie


i would suggest you call Dr Lenke's office and ask
if they will see you...or if they will take a look at your X rays....
Dr Lenke is famous for doing the most difficult of patients....
i think it is important that you start a file on your daughter's medical issues if
you have not done so already....you need to know what kind of hardware she has, etc....
you are her only advocate....any surgeon willing to consider revision surgery will
want to know all the details of what has already been done...
if you have any written reports from her surgery, that would be helpful....
maybe you could start gathering information....if you do not have such info, you
might want to start requesting it...
....you may have to put your requests in
writing, but it is a place to start...and do keep copies of everything!

jess

Sierras Mom
11-30-2011, 05:39 PM
Good Day Everyone....It has been a great one for us!!

Just got the call awhile ago from Shriner's, Sierra has an appointment on Dec. 15th, with Dr. Samdani at the Philidelpia, PA. location. We are so excited and of course a bit scared too, nothing exciting about another surgery but the thought of them actually helping her is a huge blessing.

So I know you have been there Gayle and I pm'd you but thought I would ask a few questions if anyone might know. So how long does it take to be scheduled for surgery from the time of first appointment? Has anyone stayed in the campus facility they offer for family and if so what's it like, trying to imagine what we are in for I guess.

Of course the big question is, has anyone had or know of someone who had Dr. Samdani? I sure hope he is as good as the lady on the phone told me he was.

This could have not come at a time any sooner to be honest, Sierra has been in so much pain that this week she was in bed for 2 days straight and last week for 3. I cannot stand to see her go through all of this.

I hope everyone had a great Thanksgiving and are ready for Christmas after a horrible day on Black Friday if you went...I did and I've never seen such craziness.....lol

Have a good night.

Kellie

robinlbe
12-04-2011, 09:07 PM
I'm so happy to hear that the Phillly Shriners are going to look at Sierra....but I am so sorry she is in so much pain. I can't even begin to imagine...bless her heart. I will be praying for her. I am grateful that Samuel is not having any pain, but I can't figure out why in the world he wouldn't be.....when I saw the xray images of his curve, it pains ME just looking at it! (as for Dr. C at Leatherman, I about DIED when you said that he was the same doctor who did the terrible job on your sister!!! I hope it wasn't the same one.....oh my!)

Yes, I will friend you on Facebook.....and keep in touch with you personally that way.

Thanks....
blessings....and you guys will be in my thoughts and prayers as you prepare for your visit to Phillly.
robin

leahdragonfly
12-04-2011, 10:10 PM
That's great news that you will be going to Shriner's Philly with Sierra! I am glad you persevered in finding an excellent place to evaluate her.

I never got your PM, but if you resend it I will be happy to respond. You should plan to be at Shriner's for several hours at least. You will check in and fill out some paperwork, go upstairs to clinic, probably to x-ray, back to clinic, where you will probably meet Janet Cerrone, the spine program PA. She will talk with you at length, examine Sierra, look at x-rays, etc. Then you will meet with Dr Samdani and possibly other surgeons. I have heard lots of wonderful things about Dr Samdani from other parents although I have not met him personally. Surgery scheduling depends on lots of factors, which will be explained to you when you are there. I am sure if they feel they can help Sierra, they will get her onto the surgery schedule in a timely manner (maybe even in several months, it really depends). To me it would seem like her case would be prioritized due to her pain, age and situation.

One last thing--Shriner's in Philly is in a very poor, run down neighborhood. This is shocking to some families when they arrive. The hospital itself is fine inside though. We stayed downtown at the Crowne Plaza which was ok; it has a Shriner's rate. If you check out www.vertebralstapling.com (mariaf here co-moderates it) there is a lot of Philly travel and hotel info which could be helpful if you are not familiar with the area.

Please let us know how things progress with your travel plans and appointment. We are here for you.

kennedy
12-05-2011, 07:01 PM
Kellie i'm glad your daughter got in to the shriners system. the 20 orthopedic shriners hospitals are really top notch in the field of spinal disorders. i was a patient at the sacramento shriners hospital ever shince the day i was born.
I hear great things about shriners philly from Maria.

Sierras Mom
12-05-2011, 10:17 PM
Thank you!! I'm glad Samuel isn't in pain!! They say kids adjust to pain much easier than we do, I am glad for their sake. I will call my sister tomorrow and see if it was the same Dr. Campbell who is there, thought I can't imagine it wouldn't be. Just make sure before you let them do any surgery on him that you get a second opinion. If I had of known about Shriner's I would have went there in the first place because everything our kids are put through surgery the next one is even more riskier for them, they are more likely to get blood clots and pulmonary embolisms. I think about it now and I wonder had I gone to a Shriner's hospital to begin with would she even be in the shape she is in now? This will be her 10th surgery, granted not all were back surgeries but still! Well, I have got to check out the free flights they offer with the different companies, I have been so busy with other things I just haven't been able to tackle this. I look forward to *seeing* you on facebook.

Take care!!!

Kellie


I'm so happy to hear that the Phillly Shriners are going to look at Sierra....but I am so sorry she is in so much pain. I can't even begin to imagine...bless her heart. I will be praying for her. I am grateful that Samuel is not having any pain, but I can't figure out why in the world he wouldn't be.....when I saw the xray images of his curve, it pains ME just looking at it! (as for Dr. C at Leatherman, I about DIED when you said that he was the same doctor who did the terrible job on your sister!!! I hope it wasn't the same one.....oh my!)

Yes, I will friend you on Facebook.....and keep in touch with you personally that way.

Thanks....
blessings....and you guys will be in my thoughts and prayers as you prepare for your visit to Phillly.
robin

Sierras Mom
12-05-2011, 10:29 PM
Thank you for letting me know! What have you had to have done? How old are you now?


Kellie i'm glad your daughter got in to the shriners system. the 20 orthopedic shriners hospitals are really top notch in the field of spinal disorders. i was a patient at the sacramento shriners hospital ever shince the day i was born.
I hear great things about shriners philly from Maria.

Sierras Mom
12-05-2011, 10:48 PM
Hi Gayle, Yes, we are really excited! Do you live in PA? Thank you for letting me know about the neighborhood, I was on some site and they were talking about how wonderful and safe it was there so this is good info! What do you think about the subway to get around and there was another form of transportation too and something to get to NJ and NY, are those safe?

I will have to check my mail and send it, maybe I just thought I sent it and I didn't....lol anything is possible with me these days. When I had talked to admissions that first day, I had asked if this was just an evaluation and she said not because I had sent so much information (plus I had even taken pictures of her back the way the doctors do so they can really get a good look at what was going on) that she would be having surgery with Dr. Samdani. Now I understand now that this person is new so maybe she misuderstood I dunno but I hope this isn't just an evaluation and then they will turn her down after we get down there it would be such a huge disappointment.

It sounds like that first day is a really long day, so I wonder how I should plan flight arrangements and reservations at where we will be staying. I have seen that the Ronald McDonald has is close and truthfully, I cannot afford alot and they are cheap. have you been in them, I noticed there are 4, is there one that is better than the others or in a safer area? It's alittle scary. I still have had no luck getting with Janet though I have left numerous messages as have the staff
there. The admissions person said I needed to talk to her before we came down so now I don't know what to do. I did leave a message today telling her I would emaill her and if need be have her paged, I also told her she could call me at any time and gave her my email as well. I'm probably driving her crazy but the admissions person just did not act like this was a one time visit, so I am truly confused.

I will be definitely keeping you up to date, I will be taking my computer along as well as my phone. Thank you so much for all your helpful info I do so appreciati it. I also signed up for maria's site and plan to get on there tonight if I can manage to stay awake..... I am in the process of going through a divorce and there has been a tremendous amount of stress....here I am packing for an eventual move and now planning this and it's a long story, my husband has really left me with no choice but to divorce him and he has hurt Sierra and I completely. This was all decided the same week I heard from Shriner's so I guess you can imagine my stress level!! Again thank you for all your help!!

Kellie


That's great news that you will be going to Shriner's Philly with Sierra! I am glad you persevered in finding an excellent place to evaluate her.

I never got your PM, but if you resend it I will be happy to respond. You should plan to be at Shriner's for several hours at least. You will check in and fill out some paperwork, go upstairs to clinic, probably to x-ray, back to clinic, where you will probably meet Janet Cerrone, the spine program PA. She will talk with you at length, examine Sierra, look at x-rays, etc. Then you will meet with Dr Samdani and possibly other surgeons. I have heard lots of wonderful things about Dr Samdani from other parents although I have not met him personally. Surgery scheduling depends on lots of factors, which will be explained to you when you are there. I am sure if they feel they can help Sierra, they will get her onto the surgery schedule in a timely manner (maybe even in several months, it really depends). To me it would seem like her case would be prioritized due to her pain, age and situation.

One last thing--Shriner's in Philly is in a very poor, run down neighborhood. This is shocking to some families when they arrive. The hospital itself is fine inside though. We stayed downtown at the Crowne Plaza which was ok; it has a Shriner's rate. If you check out www.vertebralstapling.com (mariaf here co-moderates it) there is a lot of Philly travel and hotel info which could be helpful if you are not familiar with the area.

Please let us know how things progress with your travel plans and appointment. We are here for you.

kennedy
12-06-2011, 10:04 PM
Kellie i was dischared from shriners when i was 17 years old. but i had my posterior spinal fusion done by the head of spinal surgery from shriners hospital sacramento the surgery took place at uc davis medical center in sacramento as well. I'm now 19 years old.

mariaf
12-07-2011, 12:37 AM
Kellie,

I just sent you an email with some additional info about Philly/travel/etc.

But I didn't touch on some other things so I'll do that here.

First, your daughter will NOT be turned away or turned down for surgery if she needs it - period. I can guarantee that. The only criteria for care at Shriners is that the child has a condition that they treat, period. I just wanted to give you one less thing to worry about. I have been going there for 8 years and know how they operate, no pun intended - and Dr. Betz (chief of staff) would sooner cut off his right arm than turn a child away that he and his staff could help. The same is true for Dr. Samdani.

I suspect that Janet is unusually busy this week (I saw her in NYC last night at a fundraiser so I know it is a crazy week for her). I am seeing her again on Thursday in Philly for my son's regular checkup. I will try to remember to mention to her that she should call you. If I forget, please feel free to remind me.

Best of luck and please keep me posted. I am happy to hold your hand along this journey.

Sierras Mom
12-09-2011, 02:58 AM
Kellie,

I just sent you an email with some additional info about Philly/travel/etc.

But I didn't touch on some other things so I'll do that here.

First, your daughter will NOT be turned away or turned down for surgery if she needs it - period. I can guarantee that. The only criteria for care at Shriners is that the child has a condition that they treat, period. I just wanted to give you one less thing to worry about. I have been going there for 8 years and know how they operate, no pun intended - and Dr. Betz (chief of staff) would sooner cut off his right arm than turn a child away that he and his staff could help. The same is true for Dr. Samdani.

I suspect that Janet is unusually busy this week (I saw her in NYC last night at a fundraiser so I know it is a crazy week for her). I am seeing her again on Thursday in Philly for my son's regular checkup. I will try to remember to mention to her that she should call you. If I forget, please feel free to remind me.

Best of luck and please keep me posted. I am happy to hold your hand along this journey.

I'm sorry I have not replied before now, I have been so busy. Thank you for info I will check it out once I am done here. I did get a couple emails from Janet recently. I felt real assured until just now when I got the latest one from her. It seems that they don't have a Cardiac Anesthesiology on staff, so now I'm really worried. We've got our plane flight arranged through Miracleflights and they are non-returnable so I will be sad if this gets cancelled after all the work they have done to get us there. She said she will call in the morning to go over her meds.

Pooka1
12-09-2011, 08:44 AM
I'm sorry I have not replied before now, I have been so busy. Thank you for info I will check it out once I am done here. I did get a couple emails from Janet recently. I felt real assured until just now when I got the latest one from her. It seems that they don't have a Cardiac Anesthesiology on staff, so now I'm really worried. We've got our plane flight arranged through Miracleflights and they are non-returnable so I will be sad if this gets cancelled after all the work they have done to get us there. She said she will call in the morning to go over her meds.

Kellie,

They will tell you if not having a cardiac anesthesiologist on staff is a problem or not. Maybe it is and maybe it isn't.

If it is then the worst is that you will get a top shelf opinion from Samdani which is not so bad. You will likely need a few opinions anyway.

If they decline, I suggest you find a top revision specialist as opposed to another pediatric surgeon. Not saying Samdani wouldn't do an excellent job. I am saying that Linda mentioned something to me about pediatric surgeons versus others surgeons who have seen all ages of patients and how they might have a different perspective. I think it is safe to say non-pediatric guys do way more revisions than pediatric guys and mixed practice guys. That is due to the success the first time of most pediatric fusions in my opinion. But when one gets away, who has the most experience? From Linda's comment, and although our pediatric surgeon is a spine artist and has agreed to see my daughters if a problem ever arose, I would instead take them to the best revision guy I could find, even if they are still under 18 at the time.

Just something to consider.

Take care of yourself also. It sounds like there is a lot on your plate. You can do this. You have already accomplished so much for Sierra. :-)

Sharon

Sierras Mom
12-10-2011, 08:45 PM
Hey Sharon,

What is the difference between a revision doctor and a regular spine doctor, are they neurosurgeons or orthopedic surgeons? I guess I am new to all of this. I am very disappointed. Janet Cerrone emailed yesterday and said she had cancelled my daughter's appointment because they didn't know her heart condition was so extensive. She said that Dr. Samdani signed off on it before he read the records. If he signed off on it without even reveiwing her record obviously he thought he could help her. I asked her if she would at least let us go ahead and come just to get his opinion. She said that they did not have a cardiac anestheiologist on staff at Shriner's. I asked her if maybe if we could get a team together who would donate their time would that work but I have not heard back from her. I am heartbroken. I even have her set up for an MRI Monday so I could take it with me so they could see the latest images. Monday Morning I will be on the phone and see what I can do. Honestly, I just want the best doctor.....someone who is going to fix her right the first time because we just can't keep going back over this and opening her up, it's too risky and it's to hard on her.

I have started a fb page looking for help, I have uploaded her xrays and mri's well most of them anyway, thought you all might add yourself and pass it on if you don't mind. https://www.facebook.com/help4sierra

thank you for the advice Sharon, it sounds like you all can teach me so much here:) Have a great night!!

QUOTE=Pooka1;130642]Kellie,

They will tell you if not having a cardiac anesthesiologist on staff is a problem or not. Maybe it is and maybe it isn't.

If it is then the worst is that you will get a top shelf opinion from Samdani which is not so bad. You will likely need a few opinions anyway.

If they decline, I suggest you find a top revision specialist as opposed to another pediatric surgeon. Not saying Samdani wouldn't do an excellent job. I am saying that Linda mentioned something to me about pediatric surgeons versus others surgeons who have seen all ages of patients and how they might have a different perspective. I think it is safe to say non-pediatric guys do way more revisions than pediatric guys and mixed practice guys. That is due to the success the first time of most pediatric fusions in my opinion. But when one gets away, who has the most experience? From Linda's comment, and although our pediatric surgeon is a spine artist and has agreed to see my daughters if a problem ever arose, I would instead take them to the best revision guy I could find, even if they are still under 18 at the time.

Just something to consider.

Take care of yourself also. It sounds like there is a lot on your plate. You can do this. You have already accomplished so much for Sierra. :-)

Sharon[/QUOTE]

Pooka1
12-10-2011, 11:10 PM
Hey Sharon,

What is the difference between a revision doctor and a regular spine doctor, are they neurosurgeons or orthopedic surgeons? I guess I am new to all of this. I am very disappointed. Janet Cerrone emailed yesterday and said she had cancelled my daughter's appointment because they didn't know her heart condition was so extensive. She said that Dr. Samdani signed off on it before he read the records. If he signed off on it without even reveiwing her record obviously he thought he could help her. I asked her if she would at least let us go ahead and come just to get his opinion. She said that they did not have a cardiac anestheiologist on staff at Shriner's. I asked her if maybe if we could get a team together who would donate their time would that work but I have not heard back from her. I am heartbroken. I even have her set up for an MRI Monday so I could take it with me so they could see the latest images. Monday Morning I will be on the phone and see what I can do. Honestly, I just want the best doctor.....someone who is going to fix her right the first time because we just can't keep going back over this and opening her up, it's too risky and it's to hard on her.

I have started a fb page looking for help, I have uploaded her xrays and mri's well most of them anyway, thought you all might add yourself and pass it on if you don't mind. https://www.facebook.com/help4sierra

thank you for the advice Sharon, it sounds like you all can teach me so much here:) Have a great night!!

Hey Kellie,

I am very sorry to hear Samdani can't do the surgery. I don't blame you for being heartbroken. But the silver lining here is you can now focus on finding someone who has done more revisions than Samdani.

I am using the term revision specialist to mean a very experienced orthopedic surgeon who has successfully done many revision surgeries. I don't think there is anyone out there just doing revisions. I am guessing there are unique aspects of revision surgery that don't present themselves perhaps in an original fusion. I could be wrong. When you look for one, ask how many revisions they have done successfully.

I'll look at the FB page.

We all have to carry each other.

Sharon

Sierras Mom
12-11-2011, 12:01 AM
thanks Sharon! I did start looking for revision specialists and there seem to be alot out there! Is there anyone you specifically recommend?

Pooka1
12-11-2011, 08:54 AM
thanks Sharon! I did start looking for revision specialists and there seem to be alot out there! Is there anyone you specifically recommend?

Kellie, I have no idea. I would have to do this search also if my daughters ever ran into problems. I'm guessing Linda's (moderator) group at UCSF has some top revision guys. She would know about them and others across the country.

One caution I would suggest... although there is a surgical revision section here, you can't assume that a bad outcome is due to the surgeon. These guys take their patients as they come. Maybe some have spines that can't be stabilized/balanced by anyone. Who knows. All you can do is go with someone who has done many many revisions.

Dr. Hey, here in Raleigh blogs about some of his cases. There are many revisions among them. Some of these people write back later with pictures of them doing things showing the revision was successful and he posts them to the blog. He seems very adept at quick surgeries with minimal loss of blood. He seems to also develop new instrumentation. You might try to get an opinion from him if you send the case materials.

Good luck.

Sierras Mom
12-18-2011, 04:12 PM
Sorry I haven't updated anyone, I didn't have internet access. As suspected Sierra has Khyphosis and Lordosis. The doctor said that with her heart condition it would be a risky surgery and would probably take 3 surgeries a week apart to fix it. They would have to basically break apart her fusion and then put screws and metal on each vertabrae all the way down her spine and then I guess fix her shoulders and hips. The blood loss would be massive and she could face the possibility of loosing function of her bodily functions the rest of her life and weak feet. There is also no garuantee that her pain would decrease. He felt that she should wait as long as possible and see another pain management doctor. They also suggested that she may have something else wrong with her and I should have it checked out but I can't remember the name right now.

I can't remember if it was the nurse or the doctor I asked but I had asked if this would eventually harm her internal organs and they said "no" but I've looked the infor up on the net and it says it does harm them eventually, now I'm really scared about this. Has anyone had experience with this?

He suggested as much therapy as possible as well but really that was all. We are all really sad and don't know exactly where to go to from here.

rohrer01
12-19-2011, 07:40 AM
I'm sorry to hear your bad news. Don't give up. That is one doc's opinion and suggestion. Maybe you can get her in to see someone else and see what they have to say. They can do things to prep her for blood loss BEFORE surgery. They have a nice hormonal drug called epogen that causes the body to build blood at a much faster rate. This will sometimes eliminate or greatly reduce the chance that they will give her blood transfusions. There are also other blood conserving techniques that they can utilisize. It seems that her heart condition is the big limiting factor here. You need the BEST in both heart and spine care for her. I hope you can figure things out. My well wishes are with you both. Take care.

mariaf
12-19-2011, 10:20 AM
I can't remember if it was the nurse or the doctor I asked but I had asked if this would eventually harm her internal organs and they said "no" but I've looked the infor up on the net and it says it does harm them eventually, now I'm really scared about this. Has anyone had experience with this?

Hi Kellie,

Thanks for the update.

While it is always good to double check and get second opinions, etc. - I learned a long time ago that 'as a general rule' if the doctor tells you something - go with that over information you find on the internet, again this is generally speaking.

There is all sorts of information on the 'net - some accurate, some not.

More importantly, the doctor treating your daughter is familiar with HER specific case and when you pose a question, he or she is responding knowing all the specifics of HER case - and/or perhaps weighing benefits vs. risk, etc. So if you want to ask Dr. Samdani, again, for clarification you should do that. Or even ask another orthopedic surgeon to get a second opinion on what he said.

But I learned a long time ago that you can scare yourself to death reading stuff on the internet, a lot of which may or may not apply in your child's specific case.

Hope this helps.

Hang in there - we are here for you.