An off topic question

[jshet]

My son has cf, autism, and other special needs. The following post is completely off topic, but since this is such a large community, i am hoping someone has experienced this or knows someone who has and can answer my questions.
my son has a malformed tailbone, that protrudes out very far causing pain and pressure ulcers. He needed to be inpatient fir the last one. Rhe orthopedic surgeon and the general surgeon feel our only option is to remove the tailbone to avoid any further pain and skin breakdown. This is a VERY RARE surgery with only 7 ever being performed at Children's Hospital Pittsburgh, and our surgeorn has performed 3 of them. He says the surgery is pretty straight forward taking about 1- 1 1/2 hours. He will be admitted for atleast 24 hrs and can go home when his pain is managed. The recovery though is very long, possibly 3 months. As you can imagine, this is freaking me out.
Can anyone shed some light on this? There is not much info. out there because this is a rare procedure and used as a last resort.
the only way to stop the pressure ulcers is to remove it, but the painful recovery time scares me to death.

Any advise will be greatly appreciated.
thank you, jshet

 

[windex125]

Though I do not have much knowledge on this subject, I too have a extended tailbone, but very small. It hurts to sit long, and I sit often sit on pillows. But I am also thin. I say do the research a little more. I would consider it. If it will improve his quality of life now that is what matters. As for the 3 mts recovery it will be probably hard on him and you as well as the care giver. But imagine that it gets so bad it breaks through the skin. I think you should consider it. Esp. that you have found a surgeon that has performed the surgery. Good Luck. I will pray for you. Pat/CF

 

[jshet]

Thank you for replying Pat, i greatly appreciate it. I have e mailed a specialist at John Hopkins who has performed many of these surgeries. Thinking i may take him for a second opinion since we are in PA, and he is in Maryland. Only about a 5 hour trip, so not too bad.

Thanks sgain, janelle