LUMBAR Syndrome

[missy]

Please do come and keep us abreast of your son's progress. With such a rare syndrome, we can all learn from your experiences and what you post will be here for other parents in the coming years. It's so important to give that gift to future parents, I promise!

I wish wish wish wish that we had more to give to you. I really do. Please know that we do not want you out there feeling alone and you can come and talk to us anytime you need to.

Our ears are all yours!

Hope next week goes well. We'll keep in touch!!

Missy

[mortman]

Update:

Bladder tests show no flow to the extra tube coming off the bladder. The bladder does show signs of not relaxing completely to empty...they will keep an eye on this.

The hemangiomas on his scrotum are continuing to grow. Our dr would like to wait on this surgery until they are no longer growing and have done some shrinking.

We are getting a second opinion on the tethered cord in November. We are also noticing the Segmental Hemangioma on his leg is continuing to spread...with new raised spot appearing weekly. We are in a wait and see hold for now.

[missy]

Well, I just asked you for an update somewhere else, but never mind that now. That'll teach me to read everything in order!

I know (from my sister's bladder problems after delivery .. she had to have physical therapy to repair her bladder) that there are certain positions which will help the bladder empty better (sitting up ramrod straight on the potty has saved me almost an hour a day from not having to run back to the bathroom and that was just one tip from my sister). So perhaps has he grows older there may be a non-invasive way to deal with that.

Does your doctor have a timeline on surgery yet? Any idea when they might do that?

How are you doing on a daily basis? This must be BEYOND stressful for you and your family! Eat right, get lots of rest, take good care of yourself. Do you have someone local you can talk to?

In the meantime: (((hug)))

Missy

[mortman]

Thanks for the tip

Our dr is hopeful that the bladder issue will be resolved with time or with the untethering of his spinal cord and the removal of the fatty tissue that is attached to the spinal cord.

We are doing well. To be honest, you would never know there is anything wrong with our little man from looking at him. He is a mover and a kicker. He still does not like being in the sitting position. Our dr says that is likely due to the spinal cord issue. I have 3 other children and Lincoln has by far exceeded their Tylenol consumption. We always wonder what the right thing to do is, but he seems to sit better and do far less crying when we give him some as needed. He is using about 6 doses a week...usually needs it more after having to ride in his car seat for long periods of time.

We are hoping to have a better idea of a timeline after Nov 3rd on surgeries, ect.
You can follow our story at http://www.caringbridge.org/visit/lincolnortman

I will try to keep you posted on here as well. I will try to get some pics posted of his leg hemangioma too.

Take care,
Missy

[mortman]

We have an update

We are using Timolol .5% gel for the raised hemangiomas in his diaper area. After just a week of once a day topical treatment, we have noticed a change in color! They seem to be less red and aren't bleeding.

We are headed for surgery for his tethered cord in January. We visited a genetics doctor who assured us this syndrome is very unlikely genetic and doesn't seem to run in families. This is great to know since we are again expecting and due in July.

[missy]

Heeeey!! Thank you for the update and glad to know the Timolol is helping.

When in January is his surgery?

Send big belly pics!!! Congrats on your new addition. Hope everything goes smoothly.

Have a Merry Christmas!!!

Missy

[mortman]

Lincoln's surgery is 1-11-11. Definitely a date we can't forget

He will have the as much fatty tissue as possible removed, his cord untethered, and possibly a shunt put in to drain the fluid off his spinal cord.

Our Dr in Iowa City, IA (7.5 hrs from home, we live in SD) has noticed a big change in Lincoln's bladder size...it has nearly doubled in the past 2 months. Also his urodynamics showed high pressure levels. After that last series of MRI's he also noticed the fatty tissue completely fills that sacral cavity and is putting a lot of pressure on the spinal cord. Also the fluid in his spine covers his back from around the hip bones up to about the shoulder blade area and is pushing the spinal cord to the right.

One other change that has been noted is that while the segmental hemangioma seems to have slowed down in growth, Lincoln has some atrophy on the left side (same side as Hem). It is most noticeable on his bottom region. Lincoln had a set of immunizations just last week. We have never had problems before, but this time he ended up with a very swollen and infected leg. We are unsure if it was caused by bacteria on his leg or if the blood flow to that leg is limited enough that there are some other issues. Either way our family physician has advised us to not use that leg for immunizations.

We will let you know how everything turns out

[missy]

We will have your family in our prayers! Don't forget to update us!

Missy

[mortman]

Lincoln finally had his spinal surgery this past month. They confirmed that along with the diagnosis of LUMBAR Syndrome he also has a mild form of Spina Bifida. While doing the surgery they found a good sized hole in the dura (covering of the spinal cord) and the segmental Hemangioma that follows his left leg and hip also in on the dura of his spinal cord. We are in a wait and see hold. The segmental hemangioma on his leg and hip has slowed in growth but they do not know what implications, if any, the untethering of his spinal cord and placing of the shunt to relieve the fluid build up will have.

[mortman]

Update:

We just had our post surgery MRI. Lots of good news. Lincoln started walking at about 14months. He is doing well with both motor skills and mental skills. He is a little guy weighing in at just 20.75# and 30.5 inch long (@15m).

His back has healed well and the shunt is working to relieve the fluid build up. He still has a low lying spinal cord but it is no longer tethered.

The segmental hemangioma appears to have really slowed it's growth. In some places it has actually faded. The raise hemangiomas in his diaper area are still very red and do ulcerate once in a while. They have not grown but have not shrunk either. Until these hemantiomas shrink we will have to wait on the surgery to "repair" his bifid scrotum.

It was noted that Lincoln still has some atrophy on the left leg and bottom. It is nothing that is extremely noticeable so doctors aren't too worried about it.

We are still working to get him off of Miralax. Since just before surgery he has had problems with his bowels. Our doctor said this was due to the tension on the spinal cord from the tethering and fluid build up. We were told the bowel issue could be temporary or perm and only time will tell. We are happy to report that we have decreased his dose to 1/4 of the original dosage Progress!!

We will continue to see urology and dermatology every 3-6 months and will visit the neurosurgeon yearly.