Lipomeningocele

[docshoney]

Hi my 6.5 month old daughter was just re-diagnosed with a lipomeningocele after an initial diagnosis of a myelocystocele. I have a few questions in regards to hospitals and physicians you all are working with. I am looking for 3rd, 4th opinions in regards to my daughters care after getting conflicting information from her current care team. Does anyone have any suggestions of great doctors and hospitals?
Thank you

[LisaJoy]

I've seen others recommend Children's Memorial in Chicago

http://www.childrensmemorial.org/depts/neurocenter/neurosurgery/overview.aspx

Shriners hospitals are usually very good too -- http://www.shrinershq.org/Hospitals/Main/

The Scottish Rite hospitals in Dallas & Atlanta are excellent as well (I went to the one in Dallas as a child).

What part of the country are you in? Might help others to make recommendations.

[docshoney]

Thanks LisaJoy. We live in Washington state about 1.5 hours from Seattle.

[rachiebaby]

I've seen others recommend Children's Memorial in Chicago

http://www.childrensmemorial.org/depts/neurocenter/neurosurgery/overview.aspx

Shriners hospitals are usually very good too -- http://www.shrinershq.org/Hospitals/Main/

The Scottish Rite hospitals in Dallas & Atlanta are excellent as well (I went to the one in Dallas as a child).

What part of the country are you in? Might help others to make recommendations.
Wow I went to the Scottish Rite in Dallas too I loved it there!

[docshoney]

Thank you! :)

[docshoney]

Hi All,

I finally got my first second opinion. This one is from John's Hopkins and does not agree with the original doctors plan. The JH doc feel that she should have surgery before she is 12 months to try to prevent symptoms instead of waiting for them to developer. He told me the whole situation is very controversial and there are two beliefs, do nothing until you have to or do something in hopes that it will prevent things from changing. I think I am in the prevention category at the moment. We meet with another doctor on the 24th, hopefully we can come to some sort of consensus.

I truly hate the waiting game :(. I wish there was one course of action, but I guess this what we are dealing with so we will do the best we can. Right now Jenna is doing great, rolling like a mad woman and trying to crawl so I am pretty happy with her progress.

Thanks.

[Dodger67]

For what its worth, I'm on the side of the JH opinion. When it comes to neurology symptoms = damage and as we all (should) know neurological damage is largely irreversible.

[carrieandcam]

Hi,
Lipomeningocele is EXACTLY what Cameron was dignosed with ( by mistake) at 5 years old. He had no symptoms other than I couldnt get him "potty-trained". At the time he was diagnosed he was taking Karate and playing hard like any 5 yr. old.
I was told that he was born with SB occulta, and that somewhere very early in his life he started growing a "lipoma" ( a fatty tumor). Well, as that lipoma grew year after year, his spinal cord became tethered to it. As Cameron grew taller and taller , his cord and all the nerves around it bacame severely intertwined throughout the lipoma.
At the same time the lipoma was still growing all around his cord.
I was told by his Neurosurgeon that was ( still is ) the reason Camerons case was/is so difficult.
I was also told that if Cameron had been diagnosed at a young age, BEFORE the lipoma got so big, he would not have lost ( and still hasnt regained) his bladder function.
It would have also been a whole lot easier for the surgeon to detether his cord.

So, my advice to you is to NOT "wait and see" if symptoms will appear. Because eventually, they WILL. And by then, the lipoma could have grown much larger, and any nerve damage that has been done may be permanent.
Of course, this is just my personal opinion based on my own sons case. I just see what happened to Cameron because we "waited" to have the surgery. ( cuz I didnt even know he had it till he was 5)

As far as second opinions.... I am also in the process of getting a second opinion. I live in Charlotte, NC and I was not satisfied with his current Neurosurgeons "wait and see what happens" approach. ( Camerons MRI last month revealed his cord retethering, a Chiari, and a syrinx which wasnt there last year, and his symptoms are worsening)
I am taking Cameron to DUKE medical center in Durham NC. this Tues.
We are meeting with a Dr. Herbert Fuchs. He is the chief of pediatric Neurosurgery. His credentials include specialty in Spina Bifida, Chiari, and brain tumors.
I will let you know what I think of him, and what he says after the appt. on Tues.
I am nervous, yet, I am also trying to stay positive and hope for "better news" than his current Dr. gave me.
Good Luck.
Carrie

[LisaJoy]

docshoney -- I think you are wise to take the prevention route because, as Dodger said, neurological damage is currently not reversible. Of course, with any neurological surgery there is risk of nerve damage resulting from the surgery itself -- I'm sure they've told you that. My detethering surgery in 2002 was successful at stabilizing my bladder and bowel function, but at the price of a significant amount of function below the right knee. Of course, I was 38 at the time of that surgery. I was well aware of the risk, and to me the trade-off was worth it. Everything I've read suggests that the younger a child is treated, the better the results. The other advantage of surgery at a very young age is that they bounce back so much quicker because they have phenomenal powers of healing at that age.

Keep us posted -- and enjoy your daughter!

Lisa

[kidsrustx]

I agree with prevention. We are dealing with permanent nerve damage with my son. He went undiagnosed until he was 12 (he's 13 now). Also the surgery to remove the lipoma was much more difficult and risky because of the growth of the nerves throughout it.

www.caringbridge.org/visit/sethedmunds

[docshoney]

Finally, a plan! We met with the new doc today and he recommended surgery within the next two months. He seemed very surprised that his colleague wanted to wait. He explained to us that in ten years he has only had two cases that wanted to wait to have surgery and the outcomes were not good. I am so happy to have met a doctor who seems to take this situation seriously. Our next step is some more pre-op testing, which includes a head CT and a full spine x-ray series. I am much relieved to have a plan, but at the same time nervous about the impending surgery. I guess I can't have it all :). On a happier note we got the go ahead to start swimming lessons with the kids next month. I hope they enjoy it. Now, do they still make the "swimming costumes" with the full length skirt and pants? I think I need to find one to wear in the pool :).

[Dodger67]

I don't know if you feel the same but to me just having a plan of action already cuts problems down to half their original size.

[dahliafaolan]

I agree with Dodger. Having a plan makes things much easier. I find there's much less to worry about if you have a plan.

[LisaJoy]

I'm so glad you have a plan now -- it must be a tremendous relief just to be able to move forward instead of hanging around in limbo.

I'm with you on what they used to call "bathing costumes." I resolve that issue by doing my swimming at 6:15 am when few other people are there! But your kids might object to that solution. :)

[docshoney]

Thank you all so much for your positive comments. I do feel much better having a plan of action. I can't wait to call the surgery scheduler tomorrow and have a firm date. That will be one less thing to worry about.

Lisa Joy - Thanks for the "bathing costume" clarification :). I am pretty sure that my 9 month old twins would be less than pleased to be woken up and thrown in the water :). I think that they will really enjoy it at 10:30 am though, Jenna is all about splashing in the tub :).