Thursday, January 10, 2008

New Inspiration to Get Back to Blog
Scoliosis Surgery for Cerebral Palsy Patients

Yesterday at the discussion forum myLot, I was inspired to return to maintain this blog. As you can see, I pretty much -- well I did abandon this blog for other pursuits last summer. However, yesterday a person was sent to me for scoliosis information and I realized how much I have yet to learn and share. My new friend's son is thirteen and has cerebral palsy. An orthopedist has recommended scoliosis surgery with rod insertion for the boy.

I have not had any contact with anyone in these specific circumstances, and this person has been quoted widely differing spinal curve measurements for their son. I am going to research further on the particular problems and challenges in scoliosis surgery for cerebral palsy patients and post here about this very important topic. I am sure where there are mobility problems to begin with, the rods and fusion recovery could be more difficult.

I hope that if you have experiences or knowledge in this specific area, you will leave feedback in here. I can send it to my friend as well as post it here. Thank you all so much for viewing my blog once again!


Anonymous said...

hi suzy,
im a 59 yr old female who had spinal surgry for scoliosis at age 12. i was in a full body cast for 10 months and was sent to a convalescent home for 3 of those months. in finding your blog, and reading about all the advances in the past 47 yrs, im hoping you have finally found a pain free life. the surgery was so difficult when i was 12 that i can only imagine, from my experience, what you and your son have been thru. im glad your pain has become more bearable, if not diminished. i have always been pain free, except for lately. i have been diagnosed with osteoporosis, and in the past 2 yrs went from 106 pounds to 128 pounds and feel the discomfort in my lower back. i've started seriously excersing and stretching, and im starting to feel better. im wondering if anyone would be able to help me with a problem i have had since i was in the full body cast. at the time i was in the cast, my body was developing, and my breasts and upper body have stayed the same as when i was 12 yrs old. this has caused me much anguish, very poor body image and self esteem. i have difficulty buying clothing, wearing bathing suits and ever undressing in front of anyone, except my ex-husband. im thinking of breast augmentation and im hoping, since this is a deformity from my cast, that the surgery would be covered under health insurance. i know insurance company's pay for augmentation if a woman has had a mastectomy,so im wondering if anyone has had this problem of crushed breasts from the cast and did have breast augmentation, and if insurance did pay the cost. this would set a precedence for those of us who are suffering from this humiliation, and would like to have surgery. i'm also a nurse, and have weighed the pros and cons of such surgery. i have a dtr who, thank goodness, has not developed scoliosis. my heart goes out to you for having to see your son go through what we went through. thanx for your time and hope to hear from you.

Anonymous said...
This comment has been removed by a blog administrator.
Suzy C said...

Thank you anonymous. As you can see, best intentions went astray lol. .I've been mostly busy at a social network called Yuwie. Too addictive!

I appreciate your feedback. I started researching on the cerebral palsy patients and I found so much conflicting information! I'm wondering if I shouldn't re-enter this blog in the search engines with a cerebral palsy tag or something and try for more feedback.

I'm worried about osteopenia and osteoporosis as well, especially with all this hardware.

Listen -- I worked for a group health insurance company for a couple of years, in the call center. I feel for you with the crushing problem you're having. I can tell you that MOST issues that are not purely cosmetic, but arise from health issues, WILL end up covered.

My suggestion would be this: Have your doctor send the insurance company a copy of your records and a letter of medical necessity. Call the insurance company's preauthorization department and get it going. If your doctor sends the request and records and you do not hear back in a reasonable time, contact the insurance commissioner.

Anonymous said...

hi suzy,
thanx so much for your help. would love to have seen the deleted comment...lolol...wish i had some info about the cerebral palsy question. sorry.
i'm going to take your advice about the insurance portion of the procedure i'd like done.
what is yuwie?
i hope your pain-free and living the good life.

Anonymous said...

Hi Suzy,

I am a 44 year old female who is 12 weeks post op from my third spinal fusion this time to the S1. I stumbled upon your blog as I am considering starting my own blog. I noticed that you mentioned online paying forums and writing sites. Can you provide some of these sites/information. I am seriously considering doing something like this as I may or may not be returning to my HR job...time for a change and this might just be what I've been looking for. Thanks for your info, LJ.

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