Any advice appreciated by battle weary family

[mrsz1ppy]

Update on Hugo

Hugo & I did go to Scottish Rite for a second opinion. Dr Birch was very nice. He said he considered Hugo a healthy boy aside from the scoliosis, which was a relief. He also said, which I found interesting, that the veterbral body stapling has impacted his flexiblity somewhat already, and that doing Hugo's fusion will not be like operating on someone who has never had surgery becasue of the scar tissue. He would have to consult closely with Dr Betz and bring in a surgeon from Children's Medical, although they were happy to help Hugo. Hugo also made a comment to Dr Betz that he was really glad he was 5'7" before having his fusion, and Dr Betz said, "Forgive me if I don't share your enthusiasm." Anyway, as soon as we were walking out of the building, Hugo told me he wanted to have the surgery in Philly because he felt more confidence in that team. I think he made the right decision, and I am really glad he made the choice to go forward and have the surgery in his own mind.

Anyway, surgery is scheduled for April 2 at Shriners with Dr Samdani and the team. We will be there 3/29 to 4/18. We are going to stay in the Ronald McDonald House for a week after our discharge and have the first wound check at Shriner's.

We are much calmer now, and I really appreciate all the support I have gotten here.

Camille

[mariaf]

Hi Camille,

If you haven't yet met Dr. Samdani you will love him. You mention in an earlier post that there was some neurological issue relating to Hugo being weaker on one side. Did you know that Dr. Samdani is not only a spinal surgeon but a neurosurgeon as well? It may not come into play, but he DOES in fact have a background in both fields. I met him and he is extremely knowledgeable and is also very humble and down-to-earth.

It is interesting what the other doctor said about scar tissue. Did you ask Dr. Betz about this? The reason I ask is that both Dr. Betz and Dr. D'Andrea specifically stated that the stapling does not have an impact in any way on a later fusion should it be necessary. I even remember seeing Dr. Betz quoted on that somewere. Come to think of it, I do know of one other stapling patient who ended up needing fusion (there have been only a few) - but I spoke several times with her mom and she never mentioned the stapling being an issue with regard to the fusion (i.e., scar tissue, etc.). Nevertheless, I will ask Dr. D'Andrea again when we see her in April (too bad it isn't the same week you will be there!)

[amandap]

Hi Camille,

I know you know this but Hugo is in the best hands possible. Dr. Samdani is a good guy and if you haven't already met him you'll like him he is very personable.

My daughter was stapled last June at age 5 and so far she is doing well, no curve progression.

Like Maria stated in an earlier post going into this we all know that fusion is a very real possibility down the line but they are brace free and able to enjoy their youth.

So in my opinion the staples did exactly what they were supposed to do.

Good Luck and Keep us posted.

Now, please tell me are you still in Dallas? Just curious because we are in Austin.

Amanda

[mrsz1ppy]

Scar tissue

Maria,
I was surprised about Dr Birch's comment, too. How can he know for sure, having never operated on a kid with staples? I hadn't considered the stapling being an issue in a fusion, and I'm not going to worry about it. It's done, we got 5 good years out of it, and a kid who's much more confident and outgoing than he was during his 8 years of bracing and casting. Also, glad to know about Dr Samdani's neuro experience. Hopefully, the curve is pressing on a nerve.

Camille

PS Yes, Amanda, we are Dallas. Howdy

[mariaf]

How can he know for sure, having never operated on a kid with staples?

Camille,

I didn't even think of that!! But you're right.

And I know exactly what you mean about the quality of life and the self-confidence that comes with being brace-free. If it should turn out that, when David has his big growth spurt during puberty, he ends up needing fusion, I will have no regrets at all.

Our appt. at Shriners is currently scheduled for 4/23 so it looks like we will only be missing each other by a few days!!

If ever you wish to e-mail me, my address is mariaf305@yahoo.com.

[mrsz1ppy]

Questions, Advice Needed on Pedicle Screw Removal

Hugo had a fusion 4/2/2007 from T12 to L4 at Shriners with Dr Samdani. He had a difficult recovery, trouble walking for several weeks, and a pain in his right thigh that got worse when he stood still. We went back to see Dr Samdani in July, and Hugo started taking Neurontin, which he said helped. In 2009 Hugo got a MRI at Scottish Rite (we are in Dallas), which showed that the bottom 2 screws were impinging into the spinal canal, and that only surgery could fix the problem. Hugo adamantly refused to consider surgery.

This May, Hugo finally broke down, and said that the pain was ruining his life. He couldn't enjoy his prom, he got tired much earlier than his friends, and he was worried about keeping up in college.

I got him an appointment with Dr Viere in Dallas, who last week told us that Hugo needs removal of right L3 and L4 pedicle screws, laminotomy right L2-3' L3-4, and that it may be too late to fix the nerve damage even with the surgery.

I have sent the MRI to Dr Samdani for another opinion. I am concerned about the recovery time, with Hugo starting college this fall, and surgery scheduled for 8/17 due to Dr Viere's vacation.

Is there a qualified doctor in New Orleans? That is where Hugo is, in Summer school, and it might be easier for Pre- and post- surgical appointments to have the surgery there. Is this a difficult surgery?

Any experience, suggestions or advice welcome!

The surgery is scheduled for August 17

[LindaRacine]

Hugo had a fusion 4/2/2007 from T12 to L4 at Shriners with Dr Samdani. He had a difficult recovery, trouble walking for several weeks, and a pain in his right thigh that got worse when he stood still. We went back to see Dr Samdani in July, and Hugo started taking Neurontin, which he said helped. In 2009 Hugo got a MRI at Scottish Rite (we are in Dallas), which showed that the bottom 2 screws were impinging into the spinal canal, and that only surgery could fix the problem. Hugo adamantly refused to consider surgery.

This May, Hugo finally broke down, and said that the pain was ruining his life. He couldn't enjoy his prom, he got tired much earlier than his friends, and he was worried about keeping up in college.

I got him an appointment with Dr Viere in Dallas, who last week told us that Hugo needs removal of right L3 and L4 pedicle screws, laminotomy right L2-3' L3-4, and that it may be too late to fix the nerve damage even with the surgery.

I have sent the MRI to Dr Samdani for another opinion. I am concerned about the recovery time, with Hugo starting college this fall, and surgery scheduled for 8/17 due to Dr Viere's vacation.

Is there a qualified doctor in New Orleans? That is where Hugo is, in Summer school, and it might be easier for Pre- and post- surgical appointments to have the surgery there. Is this a difficult surgery?

Any experience, suggestions or advice welcome!

The surgery is scheduled for August 17

Hi...

Compared to the first surgery, the removal of two screws and a laminotomy should be a relative piece of cake. Some hospitals even do this type of surgery on an out-patient basis.

I hope the damage isn't permanent. If it is, Hugo might not get any pain relief. Screws in the spinal canal are a pretty big problem. The good news is that long-term use of neurontin doesn't come with a lot of side-effects.

Best of luck.

Regards,
Linda

[mrsz1ppy]

Thanks

Linda, thank you for your prompt post. I respect your opinion and thank you for weighing in on my post. Also, glad your latest surgery is behind you.

[loboandbobo]

Camille, I am new to this whole situation with a child diagnosed with Scheuermann's Kyphosis last spring and tethered cord relase this June and now my 11 year old newly diagnosed with scoliosis, so I don't have advice for you and Hugo. But I send loving thoughts to you, and hope you know that you are not alone.
Loboandbobo