My treatment ended 3/05 and the neck dissection on 4/05. Originally I tried the physical therapy at the CCC only to be somewhat disillusioned at the outcome. The reason I discontinued was it was a horrid distance to drive for what I got out of it. A friend tipped me off to a local physical therapy place five minutes away and I asked my doctor for a new referral. This way if the therapy is painful, I can take pain medication and still be able to drive myself the short distance to and from.

I'm kinda running into the same problem as the last place. They don't know quite what to do with me to "improve" me. The therapist I met with today has been doing physical therapy for 25 years, but she told me honestly that she's only had three or four patients with neck surgery like mine.

Here is the question that I most need answers for. What I hope to achieve is more range of motion with my neck. My husband remarks that my posture is getting stooped and I tend to pull towards the left side where the incision is. Basically, I hope to get rid of this awful "stiffness" which really isn't pain, it's just stiff radiating from below my chin clear to the back of my shoulders. It's not that I'm "uneducated" but I am aware that several muscles were removed during the neck dissection. It was never mentioned that one of my arteries was removed until last Friday when they were checking over the CT scan.

Granted, I've had my fill of bad news this year and I felt a bit deflated when the therapist told me that she really didn't know if they could improve on this scar tissue issue. They are going to try massage and water therapy.

Perhaps I am expecting WAY too much, but I'm willing to work at being somewhat normal again. I've even been contemplating yoga and possibly weight training to get some flexibility and muscle mass back.

I know basically nill about physical therapy and what might be successful at getting back some of the range of motion in my neck. Hopefully, someone here who is more educated can give me some pointers on what might be successful.

Also, since so many of you have been through this, I wonder if anyone stepped up into exercise or gym work just to get muscles again. At first I figured I shouldn't be burning calories that I'm so desperate to keep on, but really, I'm sick of being "weak" and fragile.

Jen

Jen,
I had my neck dissection Sept 2 2005 and had my staples removed last friday. My ENT said that I could go back to work and everything would be fine. I told him about the muscles wanting to pull my head forward and causing pain in the back of my neck and shoulders. He explained to me about the muscles being stretched and this will get better in time. My neck dissection w

Well, Terry, I'm willing to adjust to a NEW sort of normal. From reading this forum, I realize that the fluid buildup from our missing nodes is normal and eventually will decrease with time.

My ENT surgeon was disappointed that I wouldn't continue to go to therapy at the CCC, but I was a bit put out that I drive one hour to get there through heavy city traffic and the therapist would sometimes be on the phone and send someone else in to do the work on me while she was on the phone (it sounded like a personal call)

Still, I'm hoping someone has some answers as to what might work for physical therapy. I'm just so determined to get myself as close to normal as I possibly can and I'm willing to work hard at it. Logic tells me that I am for sure not Lance Armstrong, but I'm beginning to think I'm not finding the right sort of physical therapy.

Jen

Jen,
I had very limited range of motion and much stiffness (fibrosis) in my neck after Feb 04 surgery and 36 rad teatments. Therapy delayed by two bouts of rad caused cellulitis thereafter.
But had a bang up physical therapist starting Dec 04 who started me off with 5-10 minutes of ultrasound on the neck followed by stretching exercises which I do each day. One is to do 3 reps of turning my neck to right and left and holding for a 15-20 count. I apply pressure with my hand. Then put hand on one side of top of head and pull neck sideways for 3 reps each way. Finally, and this one is for posture, place hand under chin and push upward, forcing you to look up. Do this five times for 15-20 count. Another good one is to put both hands under chin while sitting at a table, forming a fist. Push up, holding for a minute at first, then gradually lengthen the time. I also massage neck for 5-6 minutes with cocoa butter at least once a day.
All the above helped me. I do these each evening as I notice more tightening as the day wears on. Hope they might help you.
Jim Haucke
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Feb 04 - T4/N0/M0 SCC anterior and base of tongue (recurrent from Nov 03) tongue and pharynx; subtotal glossectomy, radial forearm free flap,
mandibulectomy, neck dissection; 36 rads Mar-May 04

Hi,

I started weight training 2 weeks after my disection. it really helps. They usually take the carotid artery when they do the disection, but that shuld have nothing to do with your stiffness. I had PT and it really helped. You need to stretch those muscles and skin. they took a lot of tissue. My neck is still hard in spots but I am massaging, using heat and stretching as much as possible. With some work, it will come back. maybe not as it was, but better than now. At least yor posture will improve. I would begin weight trining ASAP to regain strength. Yoga and pilates help also.

Steve

This being the "information age" I thought surely there's a standard summary of physical therapy that could be obtained as easily as a Google search. HA! Wrong. Wouldn't it be nice though if there was? I wasn't sure if the TENS unit would be very effective. I had that previously and it didn't do much for me. The current therapist didn't want to go with ultrasound as it can shake things up and mess around with cells.

Anyway, some of your suggestions here have at least calmed me a bit that some of the stiffness could be rectified. Today, I really gave it a chance. They applied heat and massage. The PT was amazed at how much my neck softened up and afterwards my shoulders were more balanced. In fact, they had to fetch me a mirror to show that after done was done, I was no longer pulling to the side. Afterwards, I put on my swimsuit and got into a 98 degree pool to do exercises with paddles and practice twisting my head against the scar tissue.

All in all, I'm beginning to become a satisfied customer of PT. This is a much different experience from a couple months ago when it seemed all they did was hurt me until tears gushed out of my eyeballs.

Maybe it simply involves finding the right sort of PT. In a couple of days they are going to do a deeper massage, but having this place closer by, I can at least drive a short distance on a pain pill and get through it. Besides, they already promised me that if they start hurting me too much they will back off instead of continuing. There's some small comfort in that.

Thanks again. I would indeed be lost without some helpful suggestions from those that have been there and done it.

Jen

Hi Jen! Listen, your going to have to work real hard & build those muscles back up. I think getting some meat back on my body was one of the best things I did last summer & fall. Push to see if the current PT will research enough to come up with some effective treatments. What they have to deal with here isn't that common for them. I lucked out & had some excellent people on my side & one of them did some very intricate specific things with micro muscle sets at the rear base of my skull or very top of spine. Also in my neck in the area of dissection. She had consulted a colleague somewhere & done some research on her own. It seemed weird at the time but after a week or so I felt better & stronger. I also remember doing side lifts with small weights while having a head strap on connected to a rope through a pulley & weight system puuling my head to the left to strengthen the right neck muscles! I felt ridiculous at the time, but I sure got results. I worked real hard. I had to push them to let me start weight training & after a few weeks they let me start doing light stuff. During all of this I had two different PT's that would focus on different areas with extreme massage, heat packs before & ice after. One of the guys actually bruised the hell out of my upper arm! He said it was neccessary to get deep enough into the right regions of muscle. Bottom line is after a couple of months I was doing weight lifting, bike riding & running. I felt really strong & able! You can do it! Erik

I am absolutely amazed after the heat packs, massage and exercise. So far they haven't mentioned anything about a head strap hooked up to weights yet, but they are giving me exercises to pull against the messed up neck muscles. Since my goal is to get my whole scrawny body back into shape (it's weird how after dropping so much weight that even my butt muscles are flat little pancakes) I asked about a recommendation to either a gym or something I could do to get the other muscles in shape. The PT place has machines and staff to help me do this as well too.

I'm really hoping that in a couple months I will feel as strong and able as you did, Erik. To be honest, being weak and scrawny makes me feel like one of those zebras on the animal documentaries that is about to be seperated from the herd and eaten by a cheetah.

You are so right though about a neck dissection not being a "common" sort of issue for PT to deal with. I think this might be why I was so sour on the previous PT.

After this one visit to a different PT place, I felt SO much more improved that I'm now looking forward to the next visit.

I might even be sorry when PT ends.

Thanks for the input everyone. Here's hoping that in a few months time, I can avoid looking like a cancer patient and be one of the stronger zebras. I also need to concentrate on putting on calories, so maybe I need to stretch my stomach out as well. I'd be happy to eat the "quantity" of food I see my teenagers put down at a feeding.

Jen

Jen-
I'm over 3 1/2 years out from my neck dissection. I have been having PT tuneups every 6 months just to keep things moving since. My range of motion to the sides is great and the neck tissue is soft. I can even look up and notice the cobwebs in the corners now! I do use a half roll of hard foam to stretch my back out on after a long day at the computer with exercises to keep the posture normal. Wouldn't be where I am today if I didn't have PT and use the message techniques to keep the fluids flowing down the neck and the area soft. You might find about 6 months down the road that the radiation has burnt out your thyroid. Hypothyrodism can give you a 20 pound weight gain! Another thing they don't tell you...but there are worst alternatives! - Kris

Jen, I am a little over 3 years out and continue with the PT. Am currently trying out cranio-sacrial therapy? might have the spelling wrong, if you are interested I can email you more about it. It has helped loosen up my neck. We are also working on getting my mouth to open wider. I recently purchased a Wedge type pillow to elevate my head at night and that seems to help a little with the swelling I still get on the left side of my face. Take Care, Carol
p.s. I lost about 35 lbs initally and have put it all back on and SOME!! SMILE!!