Hi,

My name is Vytas, I am 31 years old male with CP from birth. I am walking, driving, working and I am dad of two. I have most of my tension in neck, upper body and back + involuntary movements.

So far, I was lucky and never had any surgeries or serious procedures done to help with my CP. However, around 7 months ago I started to have neck pain on the left upper side of my neck. I have more spams in my neck now, and have difficulty moving around. I’ve been trying chiropractic, physical therapy, massage. Massage helps me relax, but only temporarily.

My neck had always had a tendency to pull me to the left, and I have an overgrown right neck muscle that is in spasm most of the time. I went to neurologist, and he helped me to get scan of my neck. Once scan was analyzed, I was told I have instability in my neck. He sent me to neurosurgeon, claiming that there might be a need to fuse two bones in my neck. Neurosurgeon told me that it is pretty much the only option I have. I was also told that relaxing my neck won’t help, that muscles are in spasm more than usual trying to compensate for instability in neck. I was told that I am in risk of eventually getting paralyzed.

I obviously have some research to do, because I do not feel like I figured out enough yet. But here’s the list of questions I have at the moment:

• Have anyone went through similar issue? Neurosurgeon claims that this is not infrequent in children with CP.
• My major concern is recovery from surgery and being secured in halo for three months. How did it go for you? How did they help to stop body from fighting halo?
• How do you get an MRI with CP? Is there a safe way to make person steady, put him to sleep or something?
• I am considering Botox for my neck muscles. Neurosurgeon told me it won’t help and I will still have to fuse my bones… Any experiences with that? I am considering relaxing my neck AND resuming physical therapy.
• Are there any ways to fix instabilities in neck other than surgery?
• Do you have a reference for Neurosurgeon working on CP? Someone you can recommend? I reside in Wash8ington, but I can fly to any state if needed…

Any advice, whatever you can throw, would help. I appreciate your help.

Vytas

Medical treatment. Conservative management consists of several weeks of cage rest to allow scar tissue to form, stabilizing the atlantoaxial joint. Steroids are also given for a short time to decrease inflammation of the spinal cord. A neck brace is often used to minimize movement of the neck

Hi,
If you're still looking for answers to your questions, I would recommend you emailing natan@healthrehab.ca. Director of Health in Motion he's an osteopathy practitioner and kinesiologist. Should have some answers to help!

Thanks everyone who responded. I found amazing specialists in Seattle, and currently recovering from full neck fusion. Funny enough, that might be the best thing happened to me in my life, because with affixed head, I no longer need to put effort into stabilizing it!!! I am doing fine. Once I escape halo, I'll summarize my experience here and provide you with pointers, something around July.

Slightly offtopic - anyone knows great Physical Therapist with experience in CP in Seattle? Or, at least can give me a hint how to find one? Maybe there's some association to look for or whatever? I do not want to be treated by book or "let's try and see" approach. Turns out strenghtening muscles with CP might be dangerous....

Vytas

So, here I am. I’d like to describe my experience during neck fusion, hopefully one finds it helpful.

I’ve started having pain in my neck during mid-2010. It felt very much like over tightened muscle, so I approached it by getting medical massage and Physical Therapy. However, things went worse and worse, and I started to seek for different treatments. I visited neurologist, and he made me to go through a CT scan. The next day he called me telling me that I have neck instability and I should come back. I was told that I have to see neurosurgeon. The first neurosurgeon I’ve seen… did not impress me, nor convinced me I need surgery. Because of my Cerebral Palsy, she sent me to the surgeon who handles difficult cases, and I got lucky.

I am blessed with a nice insurance, so I was prepared to travel across the country in search for specialist who would be specifically knowledgeable in neck fusion with Cerebral Palsy. And such a person was a Chief of neurosurgery here in Seattle, UW Medical Center, Professor Jens R. Chapman.

Professor was very knowledgeable about Cerebral Palsy in general, I felt like he sees me through in front of him. He immediately told me, that I’ll need a full neck fusion, down to T2. That sounded really scary, but eventually it made sense. I have been wondering myself about what would happen to vertebrae next door if certain section will get fused. In order to minimize the need for secondary surgeries, full neck fusion was needed. Prior to my problems, medics told me that X-rays show excessive wear in neck, but of course, till it didn’t hurt I did not worried. Now it was hurting and full neck fusion seemed appropriate solution. The main reason I made my mind up was my family – during last months I could barely walk. Together with the fact that solution made sense, I went ahead.

I went through surgery and woke up in a halo. It hurt during first couple of days, but surprisingly, my body did not try to escape halo too much. It was a full success however; I did not lose any functioning and took first step in three days after surgery and in ten days I was sent home.

Below, there is couple of advices that I wish I had before surgery:

The only aspect of how medics handled my treatment that made me unhappy was how they dealt with muscle relaxation. They had no solution ready, it was all “try and see”. So, I was lucky that my body did not try to escape halo too much, otherwise things could’ve been very different. I would strongly recommend anyone who is in similar situation to find a solution that knocks your muscles off before surgery, not after it.

One more advice is: do not let anyone but your halo person touch halo! After five days in main Hospital I was moved to rehab place. There, occupational therapist tried to help me with keeping clean while in halo, by removing lining under the halo. All my requests to contact main hospital to confirm this is safe to do were not acted upon, I guess, ignored. So, she proceeded with lining removal. Once I realized that activity stresses my neck, I stopped her from doing what she was doing. Eventually, halo owners at main Hospital were infuriated when they learned about what rehab people attempted.

And last one: keep halo tight, do not let it to get lose. That would hurt, I had problem with it getting too lose.

Before surgery I was wondering mostly about being in a halo with CP. Well, it was not that bad. I quickly got used to sleeping only on my back, on pillow turned along my spine. I had to take painkillers sometimes because pins did hurt my head, but mostly I was fine. As we know however, CP is very different in different individuals, so it is just my story. The funny thing was that while in halo, I functioned even better than without it: it kept my upper body very, very stable. So I was very stable on my feet. Learning to walk without halo was a big shock. Now however (six months after surgery, three months after halo removal), I am almost as stable without halo as I was in it.

Anyway, here I am, six months after the surgery. Surprisingly, this is a life improvement for me. Despite the fact that I lost motion in neck, I became much more stable on my feet, as head no longer moves. It is easier to balance, move, I think I am even getting stronger. Fusion also had surprising social effect: all my life, I had to engage new people by taking a first step, to prove them that I am not crazy. It was very frustrating. Not anymore. I constantly notice strangers engaging me first.

My brain adjusts to lack of motion in neck very well, I almost don’t notice it.

I am currently going through physical therapy and working on finding the right dosages and spots for Botox injections. Prior to surgery, I never had Botox, never took any medications. Now, however, with fused neck tight muscles hurt sometime. Botox seem to be very promising approach – no need to poison yourself with meds, works right on spot. I received a minimal dose two months ago, and it done great job calming down my right shoulder.

In general, I am doing surprisingly well. On my three month checkup, Professor Chapman told me that there are no weight restrictions, or activity restrictions, well, he asked me to not stand on my head. I was even allowed to do push-ups, and I did them first thing I returned home.

The only issue I am having is noise in neck: clicking, creaking etc. Medics say it is ok, though. One of the explanations is muscles sliding over the hardware.

I got very lucky. Surgery was very risky (I was told I might die or get blind three times), and by no means I promote it. It is your choice, your life. You got to decide yourself whether to go for it.

One last word on Professor Chapman. He’s not only a great professional. Throughout the whole trouble I always felt he is personally and deeply involved in my success, or failure. If you are in a difficult skeletal condition caused by Cerebral Palsy, consider coming to Seattle for help.

You can contact me at vleonavicius@hotmail.com if you have more questions. Good luck to everyone.