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28th June 2006, 01:50 PM
My daughter who is 5 years old has scoliosis and kyphosis. She had a fushion and rod for the scoliosis about 3 years ago. All was well, she bounced back great and has been moving around with no trouble. We went back for our check up with our surgeon and her kyphosis is much worse and she will need another surgery. The surgeon talked about this new surgery much differently then he did about the first one. The severity of this one is huge, lots of blood loss, 2 weeks in the hospital, 3 months with a halo. It isn't fair for a beautiful 5 year old little girl to have to go through something like this. I trust our surgeon 100%, he is the best from Boston Childrens. I just have no idea what to except through all of this. If anyone has gone through anything similar, please tell me how it was. I would greatly apprieciated getting a head start on gearing up for this. :-?
28th June 2006, 02:38 PM
First of all welcome to SSO i am glad you have found us. I'm really sorry to read about what you and your family have to go through. You mentioned your surgeon is talking differently from the last surgery. Is it the same surgeon you had for the previous fusion. Do you know what the degree of curvature your daughter has and do you have a date scheduled in for the surgery.
I don't know if there is anyone on the site who has surgery so young but we do have a wealth of knowledge in relation adult kyphosis and scoliosis surgery. I'm sure once one of them reads this post they will post there experiences for you.
28th June 2006, 02:39 PM
If you look in the pinned posts at the top of thepage there is a lot of information on various aspects of surgery and what to expect
28th June 2006, 03:06 PM
Welcome to SSO! :welcome:
I don't have any knowledge of kyphosis surgery as I just had the scoliosis surgery! There are a few members on here that have had the surgery though - phil and John (zerodegrees) are two of them! :-)
28th June 2006, 03:17 PM
Hi :welcome2: although I'm really sorry about the circumstances that have you brought you here.
I've had scoliosis surgery and my consultant is now talking about kyphosis surgery and he has also stressed to me that it would be much more complex than scoliosis surgey. I'm extremely scared and I'm 24 so I can't imagine how you must be feeling about your poor little daughter. I'm afraid I'll have to leave it to those who have had kyphosis surgery to give you advice on that front, but does your daughter let you know when she's in pain? All I can suggest is to make sure that her pain meds are topped up to keep her as comfortable as possible.
I also find that although physiotherapy doesn't actually fix anything, it helps reduce the pain. Maybe you could give that a go.
I really hope we can help you out.
Take care of yourself.
28th June 2006, 03:20 PM
Thank you all for the warm welcome. We have been with the original surgeon from the beginning. We got a few different opinions, but loved Dr. Emans! We were very pleased with the outcome of the first surgery. Her kyphosis curve is 70. The Dr schedule is looking like November will be when it happens, but he is concerned with her respitory, and thinking about scheduling sooner. We find out this Monday what he thinks. Thanks for the info!!! :niceone:
28th June 2006, 06:37 PM
I can't tell you a thing about surgeries since I have never had a scoliosis related surgery and I have never been braced either.However I would like to point out that I started out with one smaller curve and progressed to last year being measured at 150+degrees, 88 degrees and 50 degrees in my 3 curves. I am now on full time oxygen and wear a bipap at night. I am 55 years old. And now its too late for the major undertaking my surgeries might involve. So I encourage you to do whatever it takes to help out your daughter. There are other parents at this site and they can talk you through their trials and tribulations. I just want to impress on you that YOU are in charge of your daughter's medical records and care. Insist on the best. Keep a notebook to write down questions and take it to the doctor with you. It wouldn't hurt to write down the doctor's answers and to get copies or take photos of xrays etc. Also get copies of what the physician writes down after your appointments. I know it sounds crazy but stuff gets lost rather easily. Don't be discouraged ever and and get some time for you to relax and take care of yourself. Your daughter needs her parents. Good Luck and Welcome to SSO - Jean
28th June 2006, 09:51 PM
Welcome to SSO! I'm glad that you've found us. :welcome2:
I'm so sorry to hear that your daughter has such serious kyphosis and scoliosis. If it's any comfort, there are a few of us here who were born with scoliosis and had treatment from babyhood and throughout our childhoods (sadly, there are also people here who were diagnosed with scoliosis/kyphosis when very young who weren't lucky enough to have adequate treatment).
Although I didn't have surgery as young as your daughter, I did grow up with quite severe scoliosis, and I can say that children tend to bounce through treatment and surgery and take it all in their stride. I'm sure that Kimberly, Shortgirl and Vicki would all agree with me. Vicki and myself had Halo traction and it really isn't anywhere as unpleasant as it looks. Please try not to worry, and be comforted by the fact that your daughter is in the very best hands :-)
29th June 2006, 04:24 AM
After reading all of these postings, I see more of body casts vs. halos. Does anyone know the difference and why one is choosen over the other. My fear with the halo is she is so young and has a 4 year old brother who she bounces around with. I know that she will obviously not be bouncing around, but how painful is it if she bumps against something. 3 months in a halo seems like quite a long time.
I guess I am just fearing the worst. Thank you though for the supportive words!!!
29th June 2006, 08:17 AM
It's not really a case of "bodycasts vs halos".....bodycasts are mainly used these days to try to straighten a child's spine so that he/she can avoid surgery completely, whereas halo traction is usually used as part of the surgical procedure.
One lady who is very knowledgeable about halos today is Heather Hyatt, who runs the website www.infantilescoliosis.org (http://www.infantilescoliosis.org), and if you contact her she'll be able to put you in touch with other mothers whose children have been through this. Tell her that we sent you! ;-) You might like to read her webpage about Halo traction (http://www.infantilescoliosis.org/halo_traction.htm) first.
Finally, please do stay around here and let us know how your daughter gets on :-) Hopefully we will be able to help and support you in the months to come.
29th June 2006, 04:44 PM
Thank you Toni for the website and Heather's info. The website was very helpful and I did email Heather. Thank you also for clearing up the body cast vs. halo thing. I am obviously still learning and am trying to figure out every method there is out there. We will hear from the dr on Monday about what exactly he is going to do and get some answers. Since you seem like a pro at this, are there any questions that you can think of that I could ask him? I have definately found a new support group at SSO and look forward to years to come here.
Thank you so much!
29th June 2006, 08:28 PM
Check this link out it may have some useful info for you
this one too
I hope they are of some use to you
PS My 2 year old daughters called Erin, its such a beautiful name
29th June 2006, 11:48 PM
I think the first paper has an excellent summary with a convincing argument for treatment now as a closing sentence
Congenital anomalies of the vertebrae producing a scoliosis, kyphoscoliosis or kyphosis, are potentially serious conditions, which can on occasion, result in an extremely severe rigid spinal deformity with malalignment of the body and possible spinal cord compression. Ideally, these anomalies should be diagnosed at an early stage when the curve is small. Congenital vertebral anomalies are frequently diagnosed in infants on radiographs taken for other reasons, before there is an obvious clinical deformity. These radio-graphic findings should not be ignored because they may provide an opportunity for early prophylactic treatment, before a clinical deformity develops. At this time, it is possible to anticipate prognosis based on the type and site of the vertebral anomalies, the degree of growth imbalance they produce and the amount of spinal growth remaining. Deterioration of the deformity must always be prevented. A deformity which is at risk of progression or spinal cord compression requires immediate prophylactic surgical treatment, no matter how young the patient. It is much better to carry out a relatively simple operation to balance the growth of the spine at an early stage than to wait and perform potentially hazardous anterior and posterior spinal surgery, as a salvage procedure, when the deformity is severe or there is spinal cord compression.
1st July 2006, 11:12 AM
Hi Erin and welcome to SSo!
I don't have many different things to say from the rest of the band except that it is really a shame that such a young creature has to endure all this!
But this might make a huge difference and for the better.
You seem to fully trust the doctor, which to me is a good thing too, but if I was you, I'd try to learn as much as possible regarding scoliosis and kyphosis.
Buy yourself a file, you will put in it all the documentation regarding our daughter. You'll be also able to track improvements or eventual trouble.
Other than that, give your daughter loadsa bear hugs!!!
4th July 2006, 09:34 AM
Welcome to sso Erin, glad you've found us. Everyone here is incredibly supportive & we'll do whatever it takes to get you & your daughter thru this.
I had kyphosis/soliosis surgery 9 months ago & am now back on my feet & back at work.
23rd July 2006, 01:50 PM
Hi Erin how did the consultation with the Dr go ?
23rd July 2006, 02:35 PM
So our Dr. finally got back to us after consulting with his collegues. He will be doing a wedge resection between T1 and T5. They are going to take out the old instumentaion and put 2 new ones in on either side. The nuerologically risks of this is huge. We are so scarred. We went to the number 2 hospital in our area to get another opinion and they recommended the same exact thing. If we don't do this, both Dr.'s think she will get nuerological damage from her 'head falling of her spine'. It seems now that we have heard all of this, a halo vest for 3 months and no school is no big thing. We are going to meet the nuerosurgeon that our Dr. works with on Sept. 11, as well as go over specifics of the surgery with our surgeon. We are scheduling the surgery tomorrow, I think we won't get in until Nov. I feel like I am running in circles into the ground. I have to be strong for my daughter, but I feel so helpless. I can't even give any blood for her surgery. I love her so much. Thank you everyone for listening to me cry about this! Will keep you updated!
23rd July 2006, 09:00 PM
Sorry to read that the surgery is so high risk. It sounds like you have made up your mind to go ahead with the surgery. I hope it all works out ok and their is no nuerological damage
Thinking of you and your daughter
Take care the both of you
24th July 2006, 10:14 AM
I'm glad that you got a second opinion. Even though it doesn't make what you and Molly have to go through any easier, at least it means that you can feel more certain that it is the right approach and is necessary.
I hope you are able to get the surgery scheduled nice and soon, and that it goes brilliantly well :squeeze:
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