Photo of Emily's Incision

Here is a pic, as promised, of Emily's back. The incision gives a perfect outline of exactly how crooked her spine is.

On another note, you may recall how much we were quoted as to the cost of surgery being about $35,000. Well, a statement came yesterday...$62,810. Yikes! We're bracing ourselves as to how much the insurance company is going to say they won't pay and hence the balance falling back on us. Ouch!

Two Week Follow Up to Surgery

I'm way over due for this update. My apologies...

Last Thursday, Emily had her first post Op check up with the surgeon in Ft. Worth. Synopsis: Everything looks good. It's incredible to look at her back at that scar and see how crooked it is. I probably should post a pic of it for you all so you can have a better understanding of what we're talking about.

The amazing thing is that she's back to her normal self. She's practically running as best as she can run, that is, with a spine that has a nearly 30 degree angle on it.

We were in IKEA yesterday and a woman approached us explaining that she has a little girl, now 12, that has gone through almost exactly what Emily is facing. She said what is interesting in these cases is that the children have a heightened awareness to detail and truly excel in particular areas academically. I suppose we'll see.

One thing I had promised was the surgeon's notes on the surgery. So I will transpose those for you now. Trust me, they're Greek to us as well. But there will be some items that make some sense. Happy reading. Hint: Read this at bedtime tonight. Sure fire way to put you to sleep. :)

The next post op is in one month.

Operative Report

Diagnosis:
1. Diastatemyelia
2. Syringomyelia
3. Tethered spinal cord
4. Scoliosis

Procedure:
1. Thoracic laminectomy with excision of intradural and extradural bony spicule.
2. Lumbar laminectomy with detethering of spinal cord.
3. Thoracic autograft osteoplastic laminoplasty.
4. The use of operating microscope for microsurgical dissection.

Estimated blood loss: 100 ml

The patient was taken from the OR to the postanesthesia care unit in stable condition. Needle and sponge were correct times 2.

Brief summary: Emily is a 2 year old female who has recently been adopted from China. The family has noticed that initially she would not walk; however, over time she has progressively gotten better. However, it is noted she has progressive scoliosis and they had a workup with an MRI scan evaluation due to concerns of tethered cord. This showed cervical spinal cord. Also, was suspicious for a tethering of her spinal cord and her lumbar spine. Due to all above, it was recommended to the family excision of the diastem and repair of her tethered cord. The risks, benefits, and alternatives of seizures, CSF leak, damage to the spinal cord resulting in weakness, numbness, paralysis, chronic pain syndrome, difficulties of walking, difficulties in bowel or bladder, sexual dysfunction, chronic pain syndrome, probable need for future requiring repeat multiple operations, heart attack, stroke, blindness, and death. The family understood all these risks and asked me to proceed with operative intervention.

Description of Procedure:
The patient was brought to the operating room and placed supine on the operating table. The patient was then intubated and had general endotracheal anesthesia begun. She was gently rooled supine to prone position on 2 chest rools. Previously appropriate IV access, arterial line and a Foley catheter been placed. She also had a preoperative EMG and SSEP monitoring started. It was noted throughout the case she occasionally had some minor abnormalities noted in the bilateral abductor longus in the bilateral lower extremities. These were only noted be brief and went away on their own. I then performed a lateral x-ray with towel clip over her small cutaneous abnormalities which correlated with her underlying deformities. After this was done, she was then prepped with DuraPrep solution and draped in routine sterile fashion. A 0.5% lidocaine with epinephrine was injected into the incision site. Preoperative IV antibiotics had been given.

An incision was then made over the lower lumbar spine with a 15 blade scalpel. Using electrocautery Bovie, dissection was carried down to the spine. There was noted to be an area where there was a large gap in the lamina. At this area, I easily removed the soft tissue and could easily see the dura. This was then sharply opened in this region and this felt like to be region of L5-S1. After this was opened, it is noted that this appeared to be a spinal cord with some abnormal tissue. There was noted to be nerve roots seemed to be coursing from this region. Therefore, I went a level below this and I noticed that there once again was a large defect in the bone. Once again, the soft tissue was removed over this area and it was noted that once again that there was suspicion that this may be active spinal cord. However, at this level was noted to be more fat and also noted be more scarred. Therefore, this incision was then extended further in the skin and then down over the sacrum. I then exposed the area where once again there was noted to be no lamina in this region. After the soft tissues were dissected free, the dura was then opened sharply with an 11 blade scalpel. I continued this dissection from the previous durotomy which was made above this. The operating microscope was then used. I then continued the microsurgical dissection after the operating microscope had been draped. With this I was able to free up the spinal cord, which at this time became just a mass of scarred fatty tissue. Once this tissue was freed up with, I used the nerve stimulator on the spinal cord and there was no action potentials. I then stimulated the higher part of the sacral region and we did get some anal sphincter contraction. I then inspected this area and I saw no known nerve roots coursing in the lower part of the sacrum. At this area, it was then gently bipolared and this area was then cut. Once this was done, the spinal cord shifted upwards nearly an inch indicating it was severely tethered. The end of this was then gently coagulated and cleaned up to prevent scarring. I placed 1 single 6-0 Prolene stitch in this region to reapproximated arachnoid so it performed a smoother stump. After this was done, the dura was then reapproximated primarily with 6-0 Prolene sutures in this region. Once again I only removed minimal bone in this region and therefore there was no bone to defect in her lower thoracic upper lumbar spoine. I then made incision with a 15 blade scalpel superiorly above this and extended all the way down to the previous incision. Then using electocautery Bovie dissection was carried down to the large boy overgrowth in this region with multiple levels of fused vertebra. Once again, there was noted to be multiple areas where there is also missing lamina. Just above this area where the diastem was, there was noted to be a large laminar defect. Started from this area then removed the lamina over the diastem and this area was completely excised until I easily saw a bony spicule causing the spinal cord to be split with 2 dura. At this time, using a high speed air drill, I extended the laminectomy several levels above this with a high speed air drill. These lamina were easily rotated superiorly and secured out of place. At this time the dura was then sharply opened with an 11 blade scalpel above and below this diastem. This dura was opened on both sides of the diastem that follow both spinal cords. Once this was done using 4-0 Nurolon sutures, the dura was then tacked up and placed out of the way. The operating microscope was then once again brought into the field and was used for the next part of the case. With using gentle dissection, I then stripped the dura away from this bony spicule. Once this was done, I then gently removed this bony spicule both with a rongeurs and also a high speed air drill with a micro diamond drill bit. This was done very carefully while protecting the spinal cord at all times. This was very difficult because initially the spinal cord could not really be mobilized on either side. However, once the bony spicule was removed the cords could be mobilized. I was then able to continue this down into where the spicula was now flush with the vertebral bodies. At this time, the spinal cord was noted be mobile was freed up in this region. I then reapproximated anterior part of the dura primarily with 6-0 Prolene suture. The posterior dura was then reapproximated primarily with 6-0 Prolene suture in running water tight fashion. However, it was noted there was a small area where the spicule was that I could not reapproximate this primarily. Therefore, a small dural patch was sewn in place with Dura repair. Once this was done, the eara was then copiously irrigated with bacitracin solution. I then replaced the 2 levels of the thoracic lamina that were normal to perform a thoracic laminoplasty with DLS titanium plates. Other lamina were noted to be abnormal and also part of this was removed to get exposure to the diastem. Once this was done, the area was then copiously irrigated with bacitracin solution again and then the incision was then closed in layers with 3-- and 4-0 Vicryl suture, then a 4-0 Vicryl Rapde to skin. The patient was taken form the OR to the postanesthesia care in stable condition.

Home at last!

I was able to go retrieve the rest of my family today around noon. So, needless to say, we're all home and resting. Emily is a bit restrained from mobility as can be expected. She was propped up against the fireplace with a pillow a good part of the afternoon.

I saw, for the first time, the incision on her back. Ugh! Maria Marcela told me that it was 10 inches long and sure enough, it's basically the full length of her back. She's definately sore, but doing very well.

She was put to bed a little while ago and was crying asking that her feet be covered.

There is yet to go through the complete details of the doctor's summary for the surgery. I hope to post that soon. There is a follow up appointment with the surgeon in two weeks.

Thus far, everything appears to be good. There is one aspect that makes it very difficult for us with her tendency to "cry wolf" so often. So we're unsure as to, when she cries out, whether it's something we should be concerned about. Needless to say, it keeps us hopping. Overall though, everything appears to be settling well. She is not experiencing chronic pain, just soreness that is realized whenever she is moved, OR whenever she realizes she's not getting what she wants. :)

Thanks again to everyone for expressing your concerns, and prayers.

Day 3 - Recovering after Surgery

Everything is looking a lot better. Emily is wanting to sit up and is able to take steps, go to the potty, but retaining some in her bladder.

She displays some discomfort when Maria Marcela tries to move her around.

The doctor came in this morning to see her and said she'll be staying tonight as well. They just want to be sure and take all precautions.

Some questions we have for the doctor is her rehab and also what the state of her split spine is or will be; whether it can be expected to come back together as normal.

At this point, Maria Marcela will stay with her again tonight. Andrew is in school today while I'm in the office.

Status - Day 2 after Surgery

We just had the doctor in and was told we can expect her to be here a couple more days. We're still holding out for her to be able to walk around by herself and also go to the potty. They want to see evidence that her bladder is working properly.

Maria Marcela will be staying at least another night while Andrew and I go home so he can go to school and I can go to work tomorrow.

Emily has stood up on her own. She's also tempermental when staff come in. Otherwise she is doing fine. Since she's prone to seek a great deal of sympathy, we're not too sure when it really hurts and doesn't. The doctor tells us that kids typically think they're hurting more than they really are, that it's more psychological. I just wonder if they got that information from a kid. ;)

The red blotch on her chin from being in that position for nearly 6 hours has cleared up.

Day after Surgery

Good morning. Maria stayed with Emily last night in ICU while Andrew and I went back to the hotel. She is just now being moved to a standard recovery room and we have yet to know if she'll be going home today.

She was put in ICU yesterday because of the difficulties they were having with the surgery yesterday. Due to the length of the surgery, she had lost stubstantial enough blood to require a transfusion. That may sound more serious than it is, I'm just not sure. It may be that they just had to give her some blood. Apparently she had suffered a drop in blood pressure, but she is fine. They had her in ICU just for precaution.

One thing they're concerned about now is the affects the surgery might have had on her nerves, particularly which may affect her bladder control. I suppose that is yet to be determined.

We still haven't received the full report from the doctors, but hope to get that and post it soon.

Moving to ICU for Recovery

Thought I'd go ahead and post this pic. It's strange that she's got that distinctive red spot on her chin. Of course it's there because of laying on it for 6 hours.

All is well. Maria is in with her and since they wouldn't allow Andrew in recovery, we're in the ICU waiting area. Probably will head back to the hotel once we get word on what's next.