I posted about this elsewhere then realized it probably belongs here. I'm going to a physical therapist who practies something called cranio-sacral massage which includes massaging the tissue in my cheeks that is so stiff and inflamed stll (and still a little puffy) as well as inside my mouth massaging along the jaw and in the temporal-mandibular joint. She has never done this on an oral cancer-radiated patient before--its a more general kind of massage that also goes over the scalp and down the neck,but I have to say it feels like she is very gently stretching spots that really could use some stretching. Has anyone else tried this? It seems like gentle stretching of tissue that was injured by raidation and well as stimulating through massage might help.

At any rate, I plan on continuing with her as long as I can afford to (she's got a pretty high rate per hour and I think my insurance may not even pay half of it) so I'll post an update at some point about whether I think it really has made a difference.

Nelie

By the way, if you do a web search in cranio-sacral massage you'll probably read a lot of new age-y sounding claims about it, including that it cures emotional disorders and learning disabilites. OK. Let's just say I'm a skeptic. But the fact is that part of what people trained in this massage do is put their fingers in your mouth and very *gently* stretch and massage the tissue that gets damaged by radiation looking for the tissue to "release" a little--and it does--I could feel that even on my first visit. So I'm willing to see what it can do over time.....

It will do no harm...If it feels good and you can afford it..DO IT...Life is too short not to try new things..
Darrell

I still feel guilty that I'm STILL going to massage therapy at the physical therapy place locally, but when it's done I feel so much better. I understand your concern with the "new-agey" claims. My current massage therapist was telling me about her continuing education classes that she needs to have for national certification. One class that is accredited teaches "chakra" type stuff and she was almost embarrassed to tell me about it. I had to assure her that I have a completely open mind but still I'm somewhat of a skeptic when it comes to people bs-ing me. However, since I've been exposed to much of the metaphysical new age stuff prior to getting sick, I still have an open mind about it.

The massage you experience sounds different from what I get, which is usually in the mid back to back of the skull and the neck and my nerve dead shoulder area.

I'm with Darrell on the "if it feels good, do it" I was so dissappointed in my previous PT regime that I almost gave up on it entirely. However, since I found a local place with good vibes, I find myself looking forward to not only the massages but the weight training they have prescribed for me to get my muscles back in shape. At this point, if the insurance won't cover any more, I've already decided that I'm going to continue getting massages and join a club for my own weight training. In fact, I'm planning on it.

Whether it's psychological or not, I feel better and have noticed that I have a much more normal posture and physical abilities than before I started going in for it. Yesterday, I managed a whole 10 minutes total on the exercise bike with an uphill climb programmed in for the first time! I did okay until I experienced a "hot flash" at the end of the workout. Guess my body still has a few more surprises for me. Damn hormones.

Jen

heh. I'm actually amazed I'm not having more hot flashes considering I'm also taking Tamoxifen as followup therapy for the breast cancer and it, in combination with the chemotherapy I had, is supposed to throw me into menopause (but so far my ovaries aren't listening and are regular as clockwork though they did stop for a few months after chemo). I'm sure it's just down the road though.....

As an update on the physical therapy, I've been going for almost a month now, once or twice a week (depending on what I can schedule in). It is VERY painful at times, especialy the work she does around the scar from my neck dissection and my shoulders and the work she does on my mouth and cheeks. The main obvious sign of healing is that since radiation, the area of skin around my mouth and the cheek near the mouth had some nerve problems where if I touched my skin (for example held my chin in my hand), I would get a "pins and needles" feeling as if something numb was waking up. It was very annoying, espceially since chin in hand is a common position for me when I'm reading something online (something I do a lot of since I teach online).

That is totally gone. Whatever was causing that, I now seem to have total sensation back in that entire area. And in fact the whole way I am holding my mouth seems much more normal and relaxed--I think I had been kind of tightening my lips and clenching my teeth more--maybe a habit acquired during radiation. My smile, for the first time, seems to be the smile I had before radiation too--it's like I've gotten some fine muscle control back around there.

My neck and shoulders are also slowly feeling looser (I actually didn't realize how tight it was when I went to her). She also has been working on the back of my head as she says that is really tight--haven't noticed too much difference there though. But I can believe it was tight after being held down in that mask!

Also my cheeks are a little looser inside my mouth--I can even "puff them out" just a little which I couldn't do at all before! This is going to help the dentist do his work I hope (I have a dental appt. today) And one day she did this inner mouth massage where she just pressed on this place near the jaw joint and I had a big gush of saliva about 1/2 an hour later on the right side (which is where I should still have a partially functioning parotid gland).

As far as loosening up my jaw from the trismus, the work she does always has it looser by the end than it was at the beginning but it seems to tighten right back up again--this also seems to happen with the therabite, which I still use daily too. I'm not sure how much looser I can get this jaw permanently. But it's only been a month of the physical therapy and I'm still trying.....

Altogether I'd say so far the results have been productive.

Hi, I have been going to a P/T that practices the cranio-sacral therapy on me, too. In fact, I just got back from a session. I would agree that so far the results have been productive. She has helped out more than my other P/T's could as far as loosening up the scar tissue around my neck and she works inside my mouth, too. It is interesting to me that while the other P/T was so much more active (for lack of a better word) and this is such a light, gentle touch, yet it does seem to help. Carol

I think I posted on this string when it was someplace else. My PT, who did his doctoral presentation on trimus problems, did all these treatments you are describing on me after I had the first neck dissection and radiation. The intra/extra oral massages did indeed help produce saliva. He uses this and others for tirmus problems including the cranial massage. I just felt a zillion times better every time I left and credit him with getting my body going in a positive direction. Enjoy it.

Take care,
Eileen

Just a followup on this over a month later. I am still seeing the PT once or twice a week despite the dent it is now putting in my savings account because of the low amount insurance is kicking in (but I'm appealing this--long story to do with billing codes).

I'm not sure she has done anything that will permanently help the range of motion in my jaw, but whatever she does definitely loosens it temprarily so mauybe over time it will stay looser. The main thing I have noticed in the last couple of weeks is a really noticable improvement in how moist my mouth is. This may just be natural healing of course--I did have IMRT,as well as taking amifostine during treatment and taking salagen now, and supposedly I should get some salivary function back from all that even without the PT. But when she massages inside my mouth and even around the parotid gland area on the outside, my mouth gets *really moist* and even in general, even on days when I don't have PT, my mouth is much more moist. I rarely get the inside-of-lips/cheeks-sticking-to-teeth thing happening anymore and also rarely find myself needing to spray my mouth or use the biotene gel to keep it moist enough. People also say my speech sounds better which I suspect has to do with my mouth being naturally less dry as well.

I am still having major problems swallowing but I am going to see someone who hopefully can give me more of an expert opinion on that next week and, if necessary refer me to specialists elsehwere. But the saliva thing, at least, is real progress!

Nelie

That is wonderful news Nelie. Your steadfast attitude and inspiration are something for all of us to look up to. You are proof that it does indeed get better. Keep up the good fight.

Bill