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matt
12-28-2004, 08:38 PM
Hey everyone. It's me Ross. I went to my surgeon on December 10 because I was starting to have pain in my neck area, and he told me that one of my wires around my neck area was broken. He told me that one of the ways it could have happened, is that the spinal muscles are so much stronger than the wires that the muscles could have broken them. He said that he was going to leave it. So last week I call them and told them that the pain was starting to get worst. The surgeon told me that he would have to remove the wire if it kept irritating me, but he wanted to see how well I heal up first. Keep in mind that Spinal Fusion takes up to 6 months to a year for healing to be complete. Has anyone ever had this happen? What do you think I should do? The pain is getting worst and my next follow-up appointment is not until the end of April. Any suggestions will help. Thank you, Ross

ANIMAL LOVER12
12-28-2004, 10:01 PM
Sorry to hear that. If the pain is getting really bad you should probably call them and ask for a sooner appointment. I have never heard of it though because I haven't had surgery yet. I am having mine next year. I hope everything gets better!

Alison
12-29-2004, 06:22 AM
Hey Ross

Before I forget HAPPY BIRTHDAY FOR TODAY (wed 29th Nov) hope you had a wonderful day

I wish I could give you a hug right now, sounds like you need it, but here's a virtual Sandgroper (Western Australian) hug <-> :-). I hope Chrissie was really good and you got lots of neat stuff and hopefully it snowed. Glad you liked my Christmas card :-)

Ouch!!, that'd (the broken wire) have to bite (bite your back :-)and bite your mind, after going through all the stuff with having spinal surgery and then to find out this......I know I would find it hard to stay postive and happy.

Its not quite so common for stuff to break these days in spinal fusions, but it does happen. If you do a search in the Adult section Surgery (Revison) you might find some info/experiences on it.

You have a number of things to think about over the next few months. One of it is your quality of life and your sanity. They could leave the wire where it is, it is one of the options that can be "placed" onto the table for thought. But if you have pain from it consistently as you do at the moment, I would be saying take it out. As instead of concentrating on being a 15 year old boy and enjoying life and everything that comes with it, you'd be concentrating on pain and discomfort, which would not be fun.

If you continue to have discomfort and pain in your neck region I would strongly consider going back to see your surgeon earlier. Mainly to "touch base" and to have discussions about what to do next. One thing you'd have to keep in mind if you do go that they probably can't do anything (ie take out the wire) until at least April (which is about 7 months post op for you, and might be why he doesn't want to see you until then) as thats when the rest of the fusion would start to be stable. As far as i'm aware, surgeons don't really like to go back in to fix things in fusions if they have occured until after the six months mark (as it may make more problems), unless its an absolute emergency situation (ie a rod not taking/broken) or having a rod unhook (one of my mates that happened to)

What I'm going to say now might be difficult, but I hope you do your best. I know its an absolute pain in the backside to have something like this happen, but try and live life as best as possible and focus on all the good stuff in life. I know that when pain is there (an ankle reconstruction and two more surgeries later after 5 years of being told its "in my head") it is very hard to ignore, but try not to let it "control you". We have control over our lives, always remember that.

I know its hard stuff to have to consider. But remember when it comes down to it, its your decision to make about the wire. Make sure you're as well as informed as you possibly can and listen to all advice given to give you as much assistance as possible in making the decision.

Alison

PS i would have emailed you, but I'm using the public library computer at the moment, as our computer is being fixed. And on the library computers they block hotmail/yahoo etc and you can't get into them.

greggo72
02-17-2005, 08:28 PM
Hi my daughter also had a broken wire but she had the surgery when she wss only 13 months old (7-19-04) and the wire was placed T12/T13-L2.. They placed it to help fusion and it didn't..They told us to expect her to be in alot of pain but suprise Suprise she is in no pain at all however her kyphosis is progressing again and she is going back for another surgery on March 28th... her wire only lasted 10 months before it broke... How long have you had your wire before it broke? Cindy and gregg

lrmb
02-17-2005, 09:39 PM
Matt, Sorry to hear about your pain. Can they (or your MD) at least get you some painkillers until they decide what is best / attempt to fix it? Then at least you wouldn't have to be in so much pain while you are waiting. Take care ~Laura

matt
02-17-2005, 10:30 PM
Hi Cindy, Gregg, and Laura. I went to the doctor last week for my wire, and guess what they told me AGAIN?!!! Go home and come and see us in 4 months. What kinda of hospital are they running? I have this wire that it poking me, and they don't do anything? It just aggrivates me so much! I think that my mom is going to call Shreveport bc when I was in the PT's office in the hospital last week to learn some new exercises, something in my back popped, and the physical therapist knows about it bc she felt it bc she had her hand on my back. And she too did nothing about it. So now I have the pain from the wire, and the pain from the area that popped (God forbid it was some of the hardware!). I promise to keep all of you posted. Thank you for replying. Oh and by the way, my wire broke 3 months postop! Thanx, Ross

greggo72
02-17-2005, 10:51 PM
matt, the doctors of NYU are taking ariana's broken wire very seriously and for now, she is in no pain-she is having anterior posterior hemivertebrae excision surgery on march 28 where the broken hardware will be removed and the deformity will also be removed. are the doctors at shriners not taking you seriously? gregg and cindy

matt
02-17-2005, 11:01 PM
Hi Gregg and Cindy. That is how I'm starting to feel. I have a friend who went to the doctor the other day and found out that she had kidney stones, so her doc ordered for a CT scan. Come to find out, she has 2 kidney stones in her left kidney. But also on the CT, you could see that one of her screws was poking into some cartilage. So she went to Shriners, and this is what she told me. "They gave me the boot." I only know of 2 patients that go to Dr. McCall, (me and Jenny), and both of of have problems with our hardware. So I am starting to wonder. Well, I hope that it will get better! God Bless, Ross

greggo72
02-18-2005, 10:49 PM
matt- we were considering going to shriners philadelphia for another opinion-dr betz called us and wanted to see us march 25-3 days before arianas scheduled anterior posterior surgery-do you think it's worth going anyway? gregg and cindy

matt
02-19-2005, 09:32 AM
Hi Gregg and Cindy. Oh yes! You should definately consider Shriners Hospitals. It is so worth it. It is just my doctor who is acting stupid. I think that you should go! Don't let what I am saying make you rethink another Shriners. They are awsome facilities. I loved going there, just because it is not like a hospital. Well, I hope that I didn't say anything to make you rethink! I recommend it! Ross

Nicky's Mom
02-19-2005, 11:27 AM
Gregg and Cindy,
I know you didn't ask for my opinion, but I just feel bad for you guys. I know how hard it is to make difficult (even life-altering) medical decisions for your child. My son is 3 years old, and was diagnosed with scoliosis when he was 8 months. It has been a difficult journey, always wondering if you are doing the right thing. I am on alot of different scoliosis boards, and I have read tons of posts about Shriners, and Dr. Betz. I have never read a single bad thing about either. I think that it is pretty common knowledge (in the scoliosis community) that Dr. Betz is one of the best doctors around, for infants and kids with scoli. I hope you seriously consider taking Ariana to see him, before she has surgery.
I wish you all the best, in finding the right treatment for your daughter!
Cathy:)

greggo72
02-20-2005, 07:57 PM
We are going to call his office Tuesday and see if he can give us an earlier appt. We don't want to be second guessing ourselves 3
days before her surgery(Dr. Betz wants to see us 3/25 our daughters surgery is scheduled for 3/28) Plus as I have mentioned in other threads we have already seen 4 other doctors and not one agreed with the other so i am a little worried about going to see some one who will give me ANOTHER option that the other 4 didn't mention... I'ts tough on us because I feel like we finally made a decision do we really want to change that..
Cindy

lrmb
02-20-2005, 09:34 PM
Cindy, I know it's hard, I only went to three opinions and was a nervous wreck. But I'm sure it will be worth hearing what this guy has to say. Even if you stick with your thoughts as they stand now, you will at least know you tried every option. Will be thinking about you and hoping they can get you in a bit early. Take care of yourselves and Ariana will be in our prayers. ~Laura