Our Experience with Torticollis-Part 3

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.

Comments

  1. Our 21 month old son still seems to have lingering effects from torticollis. He slumps a lot, tilts a little and is wobbly on his feet, with poor balance. I can physically feel a band of tight muscle when i massage him and so i am sure it hasn’t been properly resolved. I would love to ask some more details of your situation, as we have moved to a small city and have tried to find follow up care, but no luck. I feel like I am treated like the crazy mother that thinks there is something wrong with my son, but no one else can see it.

  2. Jennifer:The ALF is an excellent aiapplnce but it has to be used in conjunction with an orthopedic repositioning process- typically a splint on the lower jaw. The acrylic splint allows the jaw to be repositioned to find the proper physiologic bite height, proper anterior/posterior position (on relaxed trajectory), and TMJ decompression through molar pivoting mechanics. Dystonia will respond primarily to bite height which can not be changed with an ALF. The problem with your original orthodontic treatment (if it was a typical process) is that orthodontics does not do do the necessary dental orthopedic repositioning When doing the dental orthopedics, it is critical to understand the controlling biomechanical principles of occlusion (see my article on Biomechanical Principles of occlusion). Dr. J

  3. Lisa:Most cases of Parkinsons can be helped. In most cases the prboelm is that the back teeth are not tall enough. The appliance makes the back teeth taller thus allowing the nervous system to calm down and mend. The mouth pieces are usually worn 24 hrs per day. Dr. J

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