Pre-op questions

[gillespie]

We are now beginning the process of pre op. Has anyone had EPO injections prior to surgery any info would be great. We are looking at Dec 08 surgery still waiting for specific date. My daughter is 14 and 120lbs so she is planning to donate her own blood.
Catherine

[tillgurl]

I have no what EPO injections are...but if you have any other questions about surgery or what it's like afterwards, feel free to ask me! :)

[gillespie]

The injections are to boost you red blood cells before surgery. They also give them for dialysis. Ok here are the questions. Where did you have surgery.
Did you donate your own blood
How long were you in surgery
How long were you in hospital.
How long before pain was managable
So far do you think it was worth it
Do you do any sports
I am sure I will think of more Iam just extremely worried for my daughter and scared which is the norm I guess, she is also very scared. We just want it done with, its like a black cloud

[scoliboymom]

Hi Catharine,
Just wanted to send some thoughts of encouragement your way. I don't come here that often anymore mainly because Patrick is just so himself again and other then a very faded scar one would hardly know he had the surgery he did. He really can do pretty much anything he wants physically (roller coasters and contact sports still not allowed). The toughest time is beforehand as you well know.
Patrick didn't have EPO injections. He just took iron orally for a few months leading into the surgery and also for a couple months after. He donated two units of blood and they used one. Who did you decide on to do the surgery?
take care, the black cloud will lift and there are sunny days ahead.
Ramona

[tillgurl]

Yeah, I donated blood. I was soo scared to, but it was fine. I was sure to eat a big lunch that day and drink alot of water so that I wouldn't like pass out. I took iron supplements for a few months before donating blood...the doctors wanted me to.

I figure skate. I plan to ask my doctors when I go back in October if I can skate around a bit. I'm not allowed to do sports until 6 months post op, so in Decemeber, but I just wanna skate around the rink and not do any 'tricks'.

They booked the OR for about 8 hours...I took about 6.5 I think.

Not gonna lie, when I first woke up, it was HORRIBLE. I had a breathing thing over my mouth, my mouth was SOOO dry, I was complaining of pain, I kept asking if it was over, doctors kept touching my feet to make sure I could feel them and could move them.

I stopped taking my pain killers only a week post op. This was probably too early, but I can't lie here, they definitly made my constipated so yeah that wasn't fun lol.

The pain last like at least a few weeks. Then, it's not so much 'pain' as it 'discomfort'. I still felt 'stiff' in August. Now, I barely feel stiff, only when I'm sitting in specific classes here in really uncomfortable seats. So it's weird to lean back in them. Instead, I just look like I have perfect posture.

Omg it was DEFINITLY worth it!!!!!!
I regretted doing it at first....
But noooooo I'm SOOOOOOO happy I did it.
My hips/shoulders are even. I lost my good posture. I love how I look in a 'tight' tshirt or long sleeve shirt. and I LOVE all the compliments I got about how great I look!

The first couple weeks post-op are hhhard, but it's so worth it! Just make sure to keep your daughter stocked up on DVDs lol. I recemmend buying one of her favourite TV shows on dvd : )

[gillespie]

Thank you for the responses. Although I have researched all this stuff for months and months now that we are getting down to the wire I feel alittle lost. I know in my heart we are doing the right thing I can't help but worry. I just want this done and know that my baby is alright. I know the cloud will be lifted soon. By the way we decided to go with the first Dr. My daughter felt most comfortable with him and I have talked to alot of local health care professionals and they have all had good things to say.

[WNCmom]

Catherine--

My son (13) is scheduled for fusion at Shriners in Philadelphia on November 13, so I am walking in your shoes right now. Although surgery seems to be our only option, the idea of someone so young having such a major surgery and having his/her body changed forever is still difficult to swallow. It is easy to feel lost.

I'm just trying to focus on being grateful for the medical advances that have been made over the last few decades. My cousin was fused from T1 to sacrum (no instrumentation) at age 15 back in the late 1960s, and she spent a year in a body cast and had to learn to walk all over again. We've come a long way since then, thank goodness. We are very fortunate.

Just want you to know you're not alone. Hang in there.

[gillespie]

Thanks for the support I will be thinking of you.

[laurieg6]

I just wanted to mention that your daughter should drink huge amounts of liquids prior to donating blood. My son didn't drink enough (no one ever mentioned this to me) and he almost fainted after donating. He needed IV fluids at the donation center and it took around 2+ hours for him to feel better.

Now he's doing really great and although he's still in PT working on postural issues, is healthy, strong and we are so glad he had the surgery and that it turned out so well.

It was sort of surreally dark before the surgery but there is a light at the end of the tunnel and you will soon be there. I wrote in detail about Alexander's surgery and initial recovery and you can search for my name to read all about it if you're interested.

Good luck,

[txmarinemom]

Yes ... forced hydration is critical. 64-128 oz of water a day during the usual month of the 10-30 day window of donation isn't unreasonable. Being well hydrated before surgery can *also* help purge the ick of anesthesia.

I wrote a "boosting hemoglobin before autologous donation" guide a while back. If you're interested, it's located at http://www.scoliosis.org/forum/showthread.php?t=7290&page=2.

I donated a pint prior to my surgery and had no problems. In addition, I'm a regular blood donor. Again, I'll stress that laurieg's comment on hydration is one of the single most important tips. The donation will go MUCH more quickly, and the after effects will be minimal.

Best regards,
Pam

[Kitty]

HI Catherine,

My daughter is having a spinal fusion in mid-November and we are also just starting the pre-op journey. It can be very frightening, but remember you are doing the right thing and the best by your daughter. The one thing that has helped me is talking with people who have either had the same experience or their kids have, so you are certainly in the right place. Your daughter may also benefit by talking with others her age, so maybe spinekids is an option for her, or even emailing someone who's gone through it. Perhaps there's someone in your area. Through this Forum, i found others in Australia and Perth where i live who also had the same doctor, so it was a tremendous help to me and my daughter to get in contact with people. I would recommend you do the same. You will both be fine.

I wish you both the very best.
Take care,
Lisa