Our Experience with Torticollis-Part 3

At 2 years old and 7 months post surgery

We took a couple of weeks to make the decision about surgery. We were so confused.  His tilt was much better since he started walking, but he was still slouching and tilting when he was laying down.  There was some obvious facial asymmetry that most likely wouldn’t be corrected without surgery. Even with all that I had a hard time justifying it since it wasn’t absolutely necessary. We had started just seeing the PT and OT every other week since there wasn’t much else we could do therapy wise. We finally decided to go ahead with surgery. The fact that he was still slouching and tilting while laying down was telling me there was still a problem. I was also concerned with him being picked on as he got older if  his face continued to get worse. We called to schedule the surgery. We would need another consult since it had been about 3 months since the initial visit. That was kind of a pain since it was a two hour drive, but we just dealt with it. We scheduled the surgery for August 2012 when he would be 18 months old.

The next couple of months were nerve wracking, just waiting for the date to come around. I kept going back and forth about whether or not to do it. I just felt bad about doing something that wasn’t an absolute. I wouldn’t have doubted myself if the tilt was still really bad, but it wasn’t anymore. I just couldn’t shake the feeling there was still something wrong though. We were also afraid we might regret not doing it. We knew if we went ahead, and there was still a problem in the future, that we had done everything we possibly could.

The morning of surgery came around. We left very early to make his 10am surgery time. The check-in process was really fast fortunately. He was taken back and had his blood pressure checked and all that good stuff. They took us to a small room with a hospital bed, chairs, toys, and a basketball hoop. They let him pick out a toy from a toy chest that actually had some really nice stuff. The anesthesiologist came and spoke with us. She let us know that I could take him back. He would be under for about 30 minutes and bring him back to us immediately after so we could be with him as he woke up. The surgeon came in and just went over the procedure. The only real risk is that there is a nerve that runs into the shoulder. If that was damaged he might not be able to lift his shoulder up, but he said they rarely even see that nerve during the surgery. We waited another 15 minutes or so, then they came to get us. I carried him back to the operating room and laid him on the table.  I held his hand as they put him under and told him I loved him and I would be waiting when he woke up. One of the men in there told me at some point that he couldn’t hear me anymore. I really wanted to punch him and tell him a few not nice things, but I just said, “I don’t care.” I wanted my voice to be the last one he heard.  Maybe that was an over reaction, but I felt the comment was really insensitive. Obviously a mother of a small child is going to be freaking out over her baby having surgery.

A very nice nurse took me back to the room and tried to have a little conversation with me, I’m sure to try to keep my mind off what was happening. She said he was a very observant boy and seemed to know what was going on. I agreed and told her he’d been like that since he was really small. She commented on how he didn’t seem scared, and he really didn’t. Once I got back to the room I let the tears go and my husband tried to reassure me and tell me that it wouldn’t be long. They came and got us after 15 minutes and took us to the recovery room. We waited another 15 minutes and he finally was brought back to us. It had only been about 30 minutes, as promised. Buddy had started to wake up but was pretty out of it. They got me some pillows to put in the chair with me so I could hold him. We turned on a tv so he could watch Nick Jr., but he had no idea what was going on. He was very groggy and really fussy, but didn’t really have the energy to cry. We waited in there for about an hour and a half. The nurse went over some care instructions and we were able to go home. He was wearing a soft neck brace that he would have to wear for 2 weeks all day, then 2 more weeks at bedtime. We were to follow up in 2 months.

The two hour drive was uneventful and he slept most of the way. He was fairly awake when we got home. My parents were there to help out since we had been up since 5 am. It was a good thing since he was pretty much back to himself by 5pm. He was still a little loopy, but was more than happy to play and see his Nene and Papa. I was so relieved that he didn’t seem to care and didn’t seem to mind the neck brace. I did give him the prescribed Tylenol for a few days. By the next day you couldn’t tell anything had happened. He was completely back to himself.

At 2 years old and 7 months post surgery

At 2 years old and 7 months post surgery

Over the next few weeks we noticed some small changes. He was using his upper body A LOT more. Before surgery he loved to dance, but would mostly just bounce and move his legs. After surgery he was swinging his arms and using his whole body. He was no longer tilting when he laid down. He did slouch for a while, but as his upper body strength improved that went away also. We went back to PT and OT once a week for a couple of months. He was dismissed from PT at this point since he had greatly improved. We had a 2 year check up for OT and he met all the goals set and exceeded some of them.  The little bit of tilt that was left was gone after a couple of months. Even though his tilt was only minor by the time we did surgery I’m so, so glad we did it. I feel the small changes that happened because of surgery made a big difference overall. I think had we not done it we would have had some bigger issues down the road and been back in PT and OT in a few years. He is still not very strong in his torso, but it isn’t too bad. He does have some weakness in his arms and hands, but the OT said that will probably remedy itself with some exercises at home.  His facial asymmetry already seems to be improving, but I think it will take another few years to fully resolve, if it ever does. He had a small one inch scar from surgery which is now almost completely gone.  He does occasionally tilt when he is tired or sick, but it goes away very quickly.

Dealing with torticollis and the decisions that came with it was not something I want to go through again, but I’m still very grateful that it was the only health problem we’ve had with him. I have scoliosis and wonder if that might have contributed to him having it, but I guess we will see what happens when we have another. Even if we go through it again I at least have some exercises to begin immediately and know that it is very manageable.

Our Experience with Torticollis-Part 2

Buddy at 9 months old and after 5 months of pt.

Soon after the second scan we began seeing an occupational therapist. She was trained in craniosacral therapy, which involves lightly manipulating the bones and tissue in the skull, spine, and pelvis. From what I can tell this is usually done by a chiropractor. There isn’t really any evidence that I could find supporting this treatment, but other parents seemed to think it helped. I didn’t think it would hurt. She also worked with him on improving torso strength. He was extremely weak throughout his trunk. She determined he was slightly behind in some motor skills, but nothing major. He really started disliking PT and OT around this time and would frequently cry through the whole session. He was about 9 months old. I think it was a combination of being touched so much, being close to nap time, and teething. They started taking him back without us because he calmed down after a few minutes if we weren’t there to distract him. The OT gave us a compression vest to borrow after a couple of months.It’s normally used for children with autism and sensory processing disorders. Nick does not have any sensory issues, but she felt it would help him stay aligned and get a feeling of what it was like to sit up straight. The torticollis coupled with a weak torso cause him to slouch to the left when he was sitting. We tried it for a few weeks. He looked much better while wearing it, but went right back to the tilt and slouch when it was off.  He didn’t mind wearing it though, and actually seemed to enjoy it.

Buddy at  9 months and after 5 months of PT

Buddy at 9 months and after 5 months of PT

We switched to a new PT soon after starting OT. The first PT was going to be at the hospital exclusively. I also thought it might be good to get a fresh perspective after more than six months of PT with little progress. The new PT was a great change. While I liked the first, the new one seemed a bit more aggressive and hands on. We discussed a torticollis collar for Buddy but we all felt it wouldn’t work for him. The PT hadn’t personally seen much of a benefit from it and we didn’t think the collar would suit his personality After a couple of months with the new PT he suggested a neck x-ray just to make sure there wasn’t anything wrong with the bone structure. We still weren’t seeing much progress at this point and just wanted to make sure. He also wanted us to start considering surgery if the x-ray came back clear. He was a year old at this point. I had already been thinking about it knowing that he wasn’t making much progress. It was still scary to think about though and know that it was a real possibility now.

Our pediatrician ordered the neck x-ray for us and it took a couple days to get the results. The x-ray came back and showed that there was subluxation of the C2 and C3. I was dumb and googled. This was a very bad idea and turned up some very scary results. This information really scared me and resulted in a panic attack that night. After I accepted that there could be a real problem I was able to go into “fix it mode”.  We were referred to a pediatric neurosurgeon. It took a month to see him. Unfortunately, there is only one pediatric neurosurgeon in our area which resulted in an hour and a half wait in the lobby. He was very pleasant and told us that he doubted it was anything serious and was just a result of Buddy’s head being tilted for so long. He said we could do a CT scan to double check and left it up to us. We asked him about surgery. He had very negative feelings about it and thought it was just a bunch of plastic surgeons out to get money. We would probably need a CT scan though if it was something we wanted to do. We left figuring surgery was off the table. We set up a CT scan for peace of mind. If he truly had a problem with these vertebrae it could be very serious.

In the couple of months that it took to see the doctor and have a CT, Buddy began walking. He was 14 months. This significantly improved the tilt. It was still obvious when he was sitting but not too bad when standing and walking. The PT still wanted us to think about surgery since it was still pretty persistent. We debated back and forth. He was doing so much better, but not “normal” yet. What harm could a consult do? We figured we would go to have a consult. It was a two hour drive, but we wanted to do it for peace of mind. The appointment was only a few minutes. The doctor felt his neck and thought he was a good candidate (of course, easy money). He would cut the tight muscles and release them. He explained that the muscles were like rope and can only be pulled so far. The procedure would only take about 30 minutes and he would wear a soft neck brace for two weeks. Easy. He would need to continue PT for a while, but should have a lot of improvement. Buddy had some pictures take as he had developed some facial asymmetry at this point. It was a relatively easy appointment.

The day of the scan was pretty eventful. He was not allowed to eat or drink all day. We tried the scan first without sedation but it was a no go. He then had to have an IV put in for the sedation which was quite unpleasant for everyone and upsetting for me. I can’t remember what they gave him but he was out immediately. We were allowed to be with him for the CT. It only took a few minutes and he woke up 10 minutes later. Once he drank something we were allowed to go. They told us he would probably be woozy and wouldn’t want to eat. We headed to the hospital food court where he proceeded to eat a lot. He also wanted to run around. Nothing slows that boy down. We left for the appointment at the neurosurgeon’s office where we got the good news that everything was ok. The subluxation was due to the prolonged tilting and would resolve once he could hold his head straight.Now we just had to decide if we wanted to go forward with surgery. We continued PT for a couple months and didn’t see much progress after the initial improvement once he began walking. The PT let us know he thought he had gone about as far as he could go with PT and OT alone, and we should decide whether or not to do surgery. We really needed to make a decision.