Good news and bad news..need another surgery :(

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Good news and bad news..need another surgery :(

Postby angie7 » Sat Jun 16, 2007 9:07 pm

I heard from Dr Oro today. He said that my ACM surgery still looks great, plenty of room. My syrinx has shrunk to C5-C7 (instead of T1) but the bad news :cry: My kyphosis is worse and is flattening my spinal cord and that I need a cervical fusion. It is my C4 verebra, which is also my deg disc. He said they would go in and through my neck (front) and remove C4 and then straighten my neck and place a plate w/ 4 screws. He said he wants me to come see him for more xrays (neck in movement type xrays) and an evaluation. He says he strongly believes this is what is the main cause of my leg pain and more likely the cause of my headaches, hand/arm/leg weakness, neck and back pain.

I am so worried about my kids! I live in Indiana and I would have to fly out there and be gone for at least 3 days for the first apt, not to mention if I chose to have surgery....They are still so little that they wont understand why mommy is gone and then when I get back why I cant pick them up :cry: :cry: :cry:

I know many on here have had the cervical fusion. What was the recovery time?? Also has anyone had it b/c of symptoms pertaining to Kyphosis??

Thanks guys!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Postby AFleming05 » Sat Jun 16, 2007 9:46 pm

I don't have anything helpful to add to your post. I just wanted to wish you luck and wanted you to know I'd be thinking of you as you journey the decision process and potentially the surgery. Keep us posted.

Many blessings to you and your family,
Mandy
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Postby mac » Sat Jun 16, 2007 10:54 pm

Angie, I ditto what Mandy wrote. It must be heartbreaking to think of leaving the girls...is Grandma around to watch them for you? If so, this might actually be a chance for them to really bond with her, and she with them.

I don't know what to say...if you are in a lot of pain, it's hard to ignore that. I know you will pray and God will lead you.

lv,
mac
mac
 

Postby kiminfla » Sun Jun 17, 2007 12:47 pm

Angie, Just wanted to give my support as you face these difficult decisions. I hope you can find peace with whatever you decide and all will be well! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby angie7 » Sun Jun 17, 2007 7:56 pm

Thanks guys! Yes my mom and dad would be watching the kids in my home *if* I decide to do the surgery. I know my mom isnt too happy about it b/c she wants to be with me in CO for the surgery but I dont have any other options with the kids. She's happy to be with them dont get me wrong but as a mother, she would rather be with her daughter, kwim? They love my mom and dad and I know they would be well taken care of and I wouldnt worry about them (as much)

I am in quite a bit of pain. We took the girls swimming today and all I did was hold Kaytlin and walk around the pool and my legs are in FIRE! The last time I was in a pool was 2 years ago and it didnt hurt this bad so to me, I took that as a sign that I am getting much worse....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Location: Florida

Postby mac » Sun Jun 17, 2007 11:44 pm

Angie, my mother had a fusion surgery in the lower Cspine (not sure what vertebra) and it was an anterior approach...and she did awesome. She was in her 70's, too. And she is 83 now and I can't keep up with her, that's for sure! I know you don't want the surgery, but if you elect to do it, well, I just wanted to let you know that maybe you will do like my ol' mom did!

I'm sorry about the legs after the bit of swimming. I can relate. That "on fire" feeling in the legs is the worst. I attribute mine to my tethered cord.

keep us posted, ya hear! Let us know when you decide.

love, mac
mac
 

Postby hayla2 » Mon Jun 18, 2007 5:24 am

Just wanted to say hi Indy neighbor! I am glad you have parents to help you. I wish that were the case for me. We are still trying to figure out who will help hubby with the kids during and after surgery. I hate putting so much on him. He wants to be with me but at the same time the kids will need him too. My kids have severe food allergies and people are either too ignorant to take my kids and my kids actually be safe or they are too scared to take them. Urgh! Be blessed. Melissa
Oh my brain! It is too big to be contained, yet too little to hold a memory. Hehehehehe
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Postby specialmomx2 » Mon Jun 18, 2007 9:26 am

Angie,

I'm sorry you need more surgery, but I honestly think you should go for it. You may risk permanent nerve damage by putting it off.

I know you are concerned about the girls, and of course they will miss you. However, they won't *worry* and fret about you because they are too young to understand what is going on. They will just know that Mommy isn't here.


With an older child, it is a different story. Were I to have major surgery, my 9yo son would probably need to be medicated. I am not exaggerating. He would stress and worry himself into a complete frenzy.

Not being able to pick the girls up post-op will be an issue. Will you be able to sit and let them scramble oto your lap? That worked as a good substitute for me, when my kids were little. They figured it out pretty quick, and my daugter would take my hand and lead me to the recliner when she needed a hug.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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Postby Mary Alice » Mon Jun 18, 2007 9:55 am

Angie,
I haven't had anything like this myself, but my dad had to have a C-2 to C-5 fusion about four years ago. He is a cardiologist, and the thought is that standing in the same position at the operating table doing procedures on his patients for so many years messed up his spinal cord. He was very worried that he wouldn't be able to work again if he had the fusion done, etc. We all told him, "Duh, you can't keep working if you don't have it done!" (Dads can be a little dense sometimes!)

Anyway, he had it done and was a little stiff and sore for a month or so but hasn't looked back since. He's done great and is still working even though he was supposed to retire two years ago.

I don't know if it helps to hear that other people survived similar deals or not, but I hope so! Good luck with whatever you decide. You'll have my prayers!
Mary Alice
Mary Alice
 

Postby Sandy » Mon Jun 18, 2007 7:11 pm

Angie,

My prayers are with you, girl. Always.

Please give the girls some sugars for me and keep us posted on what you do.

love,
sandy :D
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Postby angie7 » Mon Jun 18, 2007 9:39 pm

Thanks so much guys....You all mean so much to me!!!! Well I have thought alot about the surgery, researched like crazy (which is what I do best :lol: ) and I think I am going to have it done as soon as possible. My dh ins is probably going to be changing next year and I want to get it done on this plan which covers 100%! I called the ins today and of course since he is out of network, he has to *prove* that he is the only surgeon that can perform this type of operation and that it is a special procedure. And then it has to be approved to go to the next step.

I called and spoke to his asst (I assume) and explained what my ins had told me. She kind of acted like it wasnt that special but I then went on to tell her that this is the same disc that is my deg disc and it sits directly on top of my syrinx and IMO, this is a special surgery. She then agreed and said that she will have Dr Oro write a letter and we will go from there. So hopefully they to will see that I NEED him to work on it b/c of the syrinx. It is literally on top of it, he is wanting to remove my C4 and my syrinx starts at C5....

So wish me well!!!
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby mac » Mon Jun 18, 2007 10:24 pm

You go, girl!! I'm proud of ya!!

love, mac
mac
 


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