I'm more confused than ever

[yomomma2]

I don't know what to do .....

My husband wanted our daughter to see Dr. Richard McCarthy (Little Rock, Arkansas) . He has talked to several people with children who have had scoliosis surgery performed by Dr. McCarthy.

So yesterday we saw Dr. McCarthy. He does not think our daughter needs posterior surgery. He recommends anterior only on a few vertabraes. This sounds great in a way , almost sounds less complicated. I just don't know.

X-rays showed our daughter has one less set of ribs than most. I didn't even think about asking if this was one of the reasons Dr. McCarthy recommended anterior rather than posterior. (but I plan to) He did say by performing anterior surgery , Emily would have greater movement , less stiffness.

Emily really liked Dr. McCarthy, he was wonderful with her. He let her ask all the questions she wanted. And he answered them straight forward. He also gave her "The surgery book" . It's a notebook filled with questions and answers. She took it to school with her today ;)

I had read a thread on here devoted to Dr. McCarthy ( I believe this is the same one) after reading that, I was extremely surprised at the doctor I met. He was very compassionate and took a great deal of time answering all of our questions.

I left there yesterday feeling mostly confident. Today I just don't know.

If we decide to use Dr. McCarthy we can set a date for surgery as early as March.

I'm scared...

[nikyergen]

Yomamma2
Remember that sometimes people have personality clashes and won't like a particular doctor. If you got that warm fuzzy feeling from the doctor, then maybe he is the doctor for you. If you liked how he is preparing your daughter for surgery by answering her questions and providing her the notebook with questions and answers, that is wonderful. When I had cancer surgery, I hated my doctor's bedside manner before surgery. Part of the problem was because I had a six week old baby and scared to death. I wanted to be around to see my grandkids grow up. I was impatient about it all. However, when it came time for surgery his whole manner changed and I was so glad he was the one that did surgery on me. Remember each persons experience is different. Call his office and see if there are other parents of kids he has cared for that you can talk to. It will give you personal experiences to rely on. I know Crystal's doctor called after her surgery and asked if they could give our number out to parents/kids that might need someone else to talk to. We said no problem.

Nikki

[Carmell]

I agree with Nikki. Remember that EVERY scoliosis patient is different and requires unique care. You - the parent - need to have 100% confidence in the surgeon who is recommending surgery, and the surgery they are recommending. It isn't easy! If you are still uncertain, get yet another opinion. You need to know there is someone who has her health in their best interest.

Anterior surgery is often more invasive. Depending on where the fusion takes place, they may have to shift/move internal organs to get to the spine. If Dr. McCarthy is VERY experienced and confident in doing this surgery, it may be the right thing for her. Especially if they are planning to fuse less vertebrae. It would be great if he was able to fuse a minimal number of vertebrae and keep her body well-balanced and active. Good luck!

[yomomma2]

Thanks for the replies. I do understand what both of you are saying.
And I'm feeling a little better about all of this.

The biggest thing right now is when I think we've made a positive move, someone in my family or my husband's starts talking like we're making a big
mistake.

They can't understand why we would put our otherwise extremely lively healthy child through this. I'm so sick of having to explain why she needs this surgery. (I guess basically we have to close our ears and just not listen to them...)

This morning very early Emily went in for a MRI. About 20 minutes into it she started shaking. She was very upset when she came out.

We go back to try again on Jan. 31 . I'm calling her doctor today so he can give her something to help.

[Carmell]

Sorry to hear Emily had a hard time with the MRI scan. Hopefully the doc will be able to give her something to calm her down. Even if they let you (one parent) stay in the room with her, she is in the machine alone and its scary. Good luck on Tuesday!

And yes, your seemingly healthy, lively young lady won't stay that way forever if you don't help her before it gets too bad. People (even well-meaning family) sometimes say things that are hurtful and inappropriate. You need to go with your gut feeling, the recommendations of the docs (sometimes more than one) who you trust your child's life with completely, and make the choices that you feel are best for your child. No one else can make that decision - only you and your child. Good luck and keep up the good work!

[yomomma2]

Yesterday Emily tried the MRI again. This time with xanax. It didn't help.
She was given the maximum dose for her size. At first we thought it would help then she began to shake inside the machine again.

Now we're going to children's hospital to do an iv sedation (as soon as her appointment comes through.)

[Cheryl M]

Hi,

I know what you mean about family and friends making you second guess yourself. Some people made me feel like we were "knife" happy. The last thing I wanted was for my daughter to have surgery, but I certainly wasn't going to stick my head in the ground and ignore the facts. I educated myself and I knew that the statistics pointed to surgery from every angle. Unfortunately, my family and friends didn't have the stats that I had and they didn't know that she had every strike against her for curve progression. I suggest that you print up the stats (I wish I had done this) and tell them until they understand what you're up against to please just "listen".

My mother had a friend whose daughter had scoliosis and the brace was working wonderfully for her. Briann's brace did nothing for her curve and it continually kept getting worse. Of course, I was made to feel that I wasn't making her wear it like I should. The initial x-ray in the brace gave zero correction, another strike. Unfortunately my mother thought all scoli patients were the same.

My husband and I finally agreed to listen to our gut feeling. We prayed and prayed and we met in our prayer garden at church and both left feeling tremendous peace with our (just the two of us) decision.

My prayers go out to you and I hope the MRI is successful next time. I've never had one but I have a feeling I'd do the same thing.

My daughter is recovering beautifully from her surgery.

Cheryl M

[mariaf]

To Yomomma2,

My son, David, has been IV sedated a few times for MRIs with no problems. He woke up nicely (no sickness, crying, etc.) I think the worst part was the fact that he wasn't allowed to eat for several hours beforehand. Good luck - I'm sure Emily will do just fine.

[yomomma2]

Thank you so much for your post Cheryl. I'm glad your daughter is doing wonderfully. My husband and I both feel we are doing the right thing and yes those other family members can't seem to get over the fact that our very healthy daughter is having such major surgery.
My sister's husband had a similar surgery 2 years ago , at the age of 45. All she can do is tell me how dangerous the surgery is. Or how her husband can't bend this way or that anymore. How she would rethink the surgery option if it was her child. I've explained all I can to her....We've always been very close but now I can't talk to her about this.

I can see Emily's back is getting worse, I don't understand why my sister can't see that.

At first my husband was like that too. Then he met a lady at work who also has scoliosis. She's had it since age 12. Her parents chose not to have the surgery. Her curves are something like 50 and 70 perhaps even larger. She's 27 years old and has two little boys. She's in constant pain . She's afraid to get the surgery now because of her age. This lady was the clincher for my husband...

I just keep telling myself ...we're going to get through this and Emily will be fine.

Again I am so thrilled your daughter is doing so well. I know in a few months we'll be where you are now ...the only thing is I wish I could just sleep until then :D

[yomomma2]

To Yomomma2,

My son, David, has been IV sedated a few times for MRIs with no problems. He woke up nicely (no sickness, crying, etc.) I think the worst part was the fact that he wasn't allowed to eat for several hours beforehand. Good luck - I'm sure Emily will do just fine.


Thank you. Emily was really embarrassed because she couldn't go through the MRI. But everyone at the imaging center were very supportive and understanding. They told her stories of adults who couldn't get through one. I know that made her feel so much better.

She's actually looking forward to the IV sedation,(silly kid) she says it will help her to know what to expect on the day of the surgery since she's never had an IV before.

[Carmell]

Emily is an intelligent young lady! I hope her IV sedation goes well and the MRI is a complete success!

My hubby is one of those adults who CAN NOT go through an MRI machine without major panic setting in. He has MS so he has had multiple MRIs in the past couple of years. They have used general sedation (with the complete checking in at pre-surgery, going through all the pre-surgery routine, etc.) just for an MRI. Even with general sedation, he still moves and doesn't have a competely clear image. It happens.

[yomomma2]

Finally after what seems like forever we got an appointment for Emily's next MRI.
It's on March 6th. So I guess we sort of have a reprieve. In one way that's good we needed time to slow down and think .
On the other hand , Emily is really getting nervous about the surgery.
I sent her to spinekids a few weeks ago, I was hoping that would help.
I don't know if maybe she read something that has upset her. Last night she started crying and said she didn't think she wanted the surgery.
I know one of the things she's worried about is not being able to be so
physical. She has tons of energy and she doesn't like the thought of having to slow down.

[LeaEvelyn]

Hi Yomomma2,
My son has had scoliosis surgery, and is active on the spinkids forum. Let Emily know that after six months post op, he was allowed to play basketball again for his school. He had no restrictions. He was told he could do anything he liked, even football. Now I don't agree with the football thing, there are things us parents have to have some control over. But otherwise he does everything he has always done. It didn't change his life at all. Well, scratch that, yes it did change his life, but for the better. See, his scoliosis was progressing very rapidly. If he didn't have the surgery, eventually it would have effected his heart and lung function. So encourage her all you can. My son didn't want the surgery either, but being realistic, who would? It is totally normal for her to be scared.
All that I can tell you is this. My son said, after the surgery was over, that he thought surgery was going to be more painful than it accually was. They give you really good pain meds. The first few days post op, she will have a button she can push to give herself a dose of pain medicine. So there should be absolutly no reason to be in severe pain. I hope this can help her to not be so scared, but remember, it is very normal for her to feel this way. I'm sure it is probley more due to not knowing what to expect that is scarey.
Take Care for now, and hang in there.
LeaEvelyn

[yomomma2]

Thank you LeaEvelyn,
Emily really is having a difficult time right now. We went in for the sedated MRI on the 9th.
Again it didn't happen....they were running behind on schedules (we were having it done this time at the Children's Hospital)
and Emily had waited all day with an IV in her hand, without anything to drink or eat , she began to get sick, plus she had the sniffles sooooo...

we're back to waiting again.

On one hand I think it's really good practise for the 'real deal' . I'm even getting used to being at the hospital and dealing with nurses and doctors.
so maybe in the long run what seems like wasted time will make things much easier for all of us.

Another thing, Emily's top curve has disappeared and the bottom one hasn't gotten any worse.

[LeaEvelyn]

Hi Yomomma2,
I hope they can get Emily's MRI done soon. I bet it is very disheartning to have it canceled for another day. That is great news though, about the bottom curve disappearing. So I assume she now has only one curve to deal with, right? Well, good luck with everything. And remember the old saying, everything happens for a reason. Maybe you are meant to get used to the feel of the hospital, and get to know the people taking care of your daughter. Who really knows why certain thing happen to good people. Take Care, LeaEvelyn

[yomomma2]

Finally Emily's MRI is complete!
We're now waiting on a call from the doctor so we can decide on a surgery date.
It's been 2 weeks since her MRI ...hmmmm ....maybe I should call him??

[green m&m]

Finally Emily's MRI is complete!
We're now waiting on a call from the doctor so we can decide on a surgery date.
It's been 2 weeks since her MRI ...hmmmm ....maybe I should call him??

Yeah, her doctor should have gotten the result by now. Typicaly, no news means nothint unusual came up on the MRI. At least, that has been my personal experience -- no news was always a good one.

[yomomma2]

Emily's doctor finally called us...

We have a meeting with him on July 12.

She has her surgery date August 4

I'm not sure how I feel about this. Scared , I guess

Emily seems to be taking it great. :)

[LeaEvelyn]

Hi Yomomma,
I'm so happy everything seems to be finally moving along for you. It's the waiting that's hard. I'm assumming Emily's MRI turned out normal? Good luck with your doctor's appointment next month. If surgery is in August, that will be here before you know it. Does she have to donate her own blood? Shane was asked to donate two units. He did this every two weeks. With the last one collected two weeks before surgery.
My son goes back for his 15 month post op at the end of this month. Believe it or not, he is looking forward to seeing his doctor again. His last appointment was six months ago. He hasn't ever went that long without a check-up since first being diagnosed with scoliosis. It's really nice being on this side of surgery. The worries are pretty much gone. Just think, it won't be long and you'll be on this side of surgery too!!!!
Good Luck with everything.
Sincerely,
LeaEvelyn

[ScoliGal]

hi i know Emily at Spinekids and she will do just fine...
i just had posterior fusion 9 days ago and i am doing great
i can sit on the toilet by myself and dress myself.
i can walk long and sit for hours and i barely sleep lol

[summer]

HI
What degrees are Emily's curves anyway? Even as an adult I had people question my decision. They just don't understand because they're not educated about it.

[yomomma2]

HI
What degrees are Emily's curves anyway? Even as an adult I had people question my decision. They just don't understand because they're not educated about it.

35 top at first but has reduced in size now , (I can't remember what the degree is )
52 bottom

the surgery will only be on the bottom, involving about 3 vertibrae

[yomomma2]

hi i know Emily at Spinekids and she will do just fine...
i just had posterior fusion 9 days ago and i am doing great
i can sit on the toilet by myself and dress myself.
i can walk long and sit for hours and i barely sleep lol

Hi :) thank you for your post. I know Emily spends alot of time at spinekids.
I'm hoping that helps her to not be afraid...
4-5 days after her surgery she'll have to start walking 1 mile a day.
she's not looking forward to that , lol

[yomomma2]

Hi Yomomma,
I'm so happy everything seems to be finally moving along for you. It's the waiting that's hard. I'm assumming Emily's MRI turned out normal? Good luck with your doctor's appointment next month. If surgery is in August, that will be here before you know it. Does she have to donate her own blood? Shane was asked to donate two units. He did this every two weeks. With the last one collected two weeks before surgery.
My son goes back for his 15 month post op at the end of this month. Believe it or not, he is looking forward to seeing his doctor again. His last appointment was six months ago. He hasn't ever went that long without a check-up since first being diagnosed with scoliosis. It's really nice being on this side of surgery. The worries are pretty much gone. Just think, it won't be long and you'll be on this side of surgery too!!!!
Good Luck with everything.
Sincerely,
LeaEvelyn

Thank you , It makes me feel a little less scared knowing your son is doing so wonderful. While Emily is going through the surgery I plan to read all the replies again to keep me busy and to keep me from going totally nuts. :)

Emily will donate 1 unit of blood , her older brother will donate the other.

[LeaEvelyn]

Hi again,
My son made out wonderfully at his 15 month post op appointment. The x-rays looked great, he is staying nice and straight!!!! How is Emily doing? Has she had to donate blood yet? Well, good luck with everything.
Sincerely,
LeaEvelyn

[yomomma2]

Hi again,
My son made out wonderfully at his 15 month post op appointment. The x-rays looked great, he is staying nice and straight!!!! How is Emily doing? Has she had to donate blood yet? Well, good luck with everything.
Sincerely,
LeaEvelyn


Thank you . I'm glad your son is doing so well! :) I want you to know hearing about him makes me feel so so much better.

Emily is doing great. She's much braver than her mom ;)

2 weeks from today she will be in surgery about this time.
(makes me a little sick just thinking about it)

She isn't donating blood. Her sister and her dad will do that next week.

Emily's sister Sara (17) is much more worried about this surgery than Emily.

She and I (sara) had a boo-whoo session last night , when she asked , "Mom, do you promise Emily will be ok?"

Emily also has two brothers (15, 22) and even though they hide it better, it's been rough on them too.

I know we're all just waiting for this to be over .....

Phyllis

[LeaEvelyn]

Hi Phyllis,
I'm sure Emily will be just fine. The medical field has come so far in the past years with scoliosis surgery. There are so many precautions used during surgery. They montor the children very very closely. Tell your family to hang in there. It won't be long and this will all be behind you's !!! Good luck with everything !!!! Let us know how she makes out, Ok.
If you feel you need to talk to someone, my personel e-mail address is llentz5525@yahoo.com. I would be more than happy to try to calm your fears. My son had to go through scoliosis surgery twice, and all within a four month period. He went through each surgery without any complications. Just e-mail me if you feel you need to talk.
Sincerely,
LeaEvelyn