Tuesday, March 27, 2012

To cut or not to cut, that is the question

Sometimes, when we need to make a decision about Emily's care, the right answer is very clear. Other times, the right choice is a little harder to pinpoint. This is one of those times...

One of the challenges that Emily deals with on a daily basis is spasticity. Spasticity causes the muscles to be too stiff. In Emily, this is especially evident in her legs. She has a tendency to point her toes the majority of the time. This can cause the tendons in her heels to shorten and eventually lock in that position (called a contracture). We are not sure if she has contractures in her legs at this point, but it is getting more and more difficult for Emily to flatten her feet in the proper position for standing. So this is definitely a concern for us and her doctors.

Emily goes to the CP Clinic at Children's every six months. In November, her physiatrist, Dr. V, said that she thought it was time to "call in the big guns" in dealing with her spasticity. [In the past, she referred us to an orthopedic surgeon to discuss tendon lengthening surgery (the tendons are cut, stretched out and sewn together again). When we met with the orthopedic surgeon in September he wasn't ready to move forward with surgery quite yet, but wants to keep an eye on Emily.] This time around, we were referred to a neurosurgeon to discuss two more surgical options: Selective Dorsal Rhizotomy and Intrathecal Baclofen.

You can click on the links above to get a detailed description of each, but here is the simple version:
  • Selective Dorsal Rhizotomy (SDR) is performed on the nerves that send messages from the muscles to the spinal cord. The nerves are separated and then stimulated electrically to see which ones are "abnormally firing" causing too much muscle tone. Those nerves are then cut, thus reducing spasticity in the muscles.
  • Intrathecal Baclofen (ITB) is the insertion of a Baclofen pump. Baclofen is a medicine that Emily already takes orally (or via g-tube) to help relax her muscles. A pump would be inserted into the abdomen with a catheter running to the spine. The pump is programmed to deliver higher, concentrated doses of Baclofen directly to the spinal fluid. The higher dose and the fact that it is delivered directly to the spinal fluid is supposed to be more effective at controlling spasticity than the oral version of the medicine.

Before my appointment, I did a bit of research about both options. To be honest, both options are pretty scary because they involve the spine. However, if I HAD to choose I would have picked SDR. This seemed like a more permanent solution to the problem of spasticity. The pump is a temporary solution, in the sense that it reduces spasticity only as long as the pump is working. They have to be replaced every 7 or 8 years because the battery dies. Also, we would have to go to the doctors office for refills of the pump (via a needle) every few months depending on the dosage. I also didn't like the idea of this somewhat large foreign body being put into Emily's abdomen.

We met with the neurosurgeon, Dr. S, in February. He was very nice. He thoroughly explained both options. He let me know that Emily would not qualify for SDR. The ideal candidates for this type of surgery are mobile and have a good amount of strength in their legs. Emily does not fit into that category. The surgery has been done on some patients that are not mobile, but have such strong muscle tone that it is affecting their daily lives (they cannot be bathed, dressed, moved easily, and may be in a considerable amount of pain). Thankfully, Emily does not fit into this category either. So, as far as neurosurgery is concerned, our only option is ITB. Dr. S is not in a huge rush to do surgery on Emily. He wants to make sure we exhaust all non-surgical options first, which I really appreciate.

I told him that we already met with the orthopedic surgeon to discuss Tendon Lengthening. He said that he would prefer to do ITB first, as it may solve the issues Emily is having with her legs and she may not need the lengthening. However, if she does already have contractures in her legs, then ITB will not help that and she will need the lengthening surgery anyway. We also met with Dr. M, the orthopedic surgeon, this month. I mentioned the possibility of neurosurgery and he said they could work together to do the surgeries at the same time if that worked out best for Emily. At this point, he still isn't in a rush to move forward with surgery and wants to see us back in six months.

When we meet with Dr. V in the CP Clinic, she makes it seem like Emily needs surgery NOW, but neither of the surgeons have that same urgency. In the meantime, we have increased Emily's oral Baclofen and we have done another round of Botox. This time around, she received about 12 shots total in her arms, pectoral muscles, hamstrings and calves. She did fantastic during the shots. She really does take it all in stride! The only reaction she had was a slight fever the next day that lasted less than 24 hours. The Botox seems to be helping so far. If nothing else, the oral Baclofen and the Botox will buy us some time in putting off surgery just a bit longer. I wish we could avoid surgery all together, but I don't think that is realistic long term.

So, we have some things to consider. It is confusing and frustrating that the physiatrist and the surgeons are not really on the same page, but the bottom line is we have to make the decision about if and when Emily will have surgery. We pray that God will give us the wisdom that we need to make the right decision. He knows what is best for Emily. He entrusted her to us and we just have to rely on Him to guide us in the right direction.


Kasie Ralston said...

Dawn, A friend of ours has a daughter that went through this surgery last year, she was about 5 then. It was a success! I think they were very pleased with everything, but it was a necessity for her.

Stephanie said...

That is tough when you get conflicting advice from the specialists! I'm sure a lot of that is their own personalities - some people prefer to be proactive where others prefer a wait and see approach. It makes a difficult decision even harder. Praying for you as you make this decision for Emily.

Anonymous said...

It's good to hear an update on Little Em's care. We have been wondering how things are going. We will pray for guidance and wisdom for you and Mike as you face this big decision.

Some new pics of our growing girl would be great!