Hi all,

I thought I would pass on a treatment I just started to improve the mobility, and decrease tightness in my neck. It is a combined treatment with 2 different types of lasers, and the general gist is that the laser makes tiny holes in the scar tissue to allow new healthy collagen to form (like aerating your lawn).

As it was explained to me, a scar forms because it is the body's immediate reaction to trauma, and the first instinct is to close the wound immediately. As such, the collagen forms thick bundles. This has the result of pulling skin tighter, which accounts for the tightness in the incision and surrounding areas.

In my case (not sure everyone else has this), I feel like I am wearing a choke collar all the time, which in turn limits my mobility. In addition, it pulls my other skin, so that the left side of my mouth and chin are pulled down. It's noticible when I smile, and it looks a bit like I have had a stroke. I also note that in my stretching excercises, I can feel the pull on the "new" tongue, as all is connected to the floor of the mouth.

The laser is called Ultra Pulse (SCAARS - Synergistic Coagulation and Ablation for Advanced Resurfacing - yep, it's a mouthful). It takes numerous treatments, and can be done in 3-6 month intervals.

The side benefit, is that it is also supposed to reduce the appearance of the scarring. Nice, but not my main focus.

This does not replace PT, it's an adjunct.

I have only had my first treatment, but I will let you all know the results as it goes along.

That sounds awesome, TIna! I continue to be amazed at all that one learns just by coming to this site. Thanks for sharing.

Yes let me know I would be very interested. Works on a similar principle to acupuncture as that is how my naturopath used to work, he'd stab me in the scar tissue, to help bring in blood flow. Good luck let us know if it works.

Ok, so here is the update on the laser...

The treatements are 3-6 months apart, but are combined with 2 lasers (one can be more often, but generally they are done together), and generally take a total of 2 years.

After the first laser treatment on the neck scars, I was concerned because everything seemed to get tighter, but meeting with my surgeon, he advised that this was likely to to nerve stimulation.

There has been a reduction in the raised portions of the scars (they were very pronounced especially on one side of my neck), and the redness has faded. The "cosmetic" side is a perk, but not what I am really interested in.

The mobility has not yet improved, but I've only been once so that is to be expected.

My next session is in April, and I'm hoping to have more to report then.

Interesting so it's meant to break up scar tissue!?

More updates on the laser. I am seeing some increased mobility in my neck. The "choking" sensattion is reducing and feels more like tightness now. It's hard to say whether this is simply due to the passage of time, or the laser itself.

The scarring is definitely less noticable and less raised.

Yes, Cheryl, the idea is to punch microscopic holes in the scar tissue to break it down and let new, healthy, "non-trauma" collagen form.

I am having the double laser in mid June, so I will post a follow up then.

Yes it is the same principle as acupuncture..
It seemed to help me good luck hope it keeps helping.

I had such a horrible experience with the laser. After the first treatment is was as if I had a reverse whiplash with the pain in the front of the neck. I couldn't get up off the floor because I couldn't raise my head. It lasted for several days. They think a nerve was compromised by the laser. I already had significant fibrosis and atrophy of my SCM muscle in the left side which is probably what happened.

Uptown, this is pretty new. Was it perhaps a different type of laser? (see my first post which identifies the type).

I had no pain from this, except a mild discomfort when the laser was operating.

It was the ultrpulse plus cold laser with electristim. It was about 6 months ago. I had lost a OT of muscle by then and had a lot of neuropathy issues.

Ed

Ok, so laser update time...

I will be doing my next round of laser in a few weeks. In the meantime, I have seen a reduction in the lymphedema in my neck. It seems to have been stuck for a couple of months on the left side, but has recently softened up.

The scarring looks pretty good - it's not raised, and most people don't even notice it, which is good.

The tightness is still present, but feels less like someone is actively choking me, and more like I'm wearing a turtleneck that is too tight. It has also migrated to the sides rather than the middle of the front of my neck.

While I still can't feel the skin itself, I have sensation under the skin, which is increasing as well.

They are also treating the wrist. Last time I had no pain, this time - whew, it was not pleasant as I am getting more feeling in the wrist, especially around the outside margins of the scar. To be fair, I am allergic to local freezing agents, which they usually use, so I just have to put up with it, whereas everyone else can get frozen (yep, I get fillings at the dentist with no freezing too, lucky me).

It's hard to say whether the improvements are due to the passage of time, or the laser treatment, but I think the laser is helping as I see improvements after the treatments.

Will keep you all posted after the next round.

So, not much new to report on the laser side of things. It really has worked wonders on the scarring, but has not made any new improvements on the tightness or range of motion.

He has said it's a 2 year process. Bah, more patience.

So, I met with my surgeon for the standard follow up and we discussed the laser treatment.

He was very pleased with the results, and stated that the scar tissue was much softer than he sees without the laser.

I am starting to have even more mobility. The sensation is hard to pin down as I think my nerves are starting to repair, so there's a fair amount of tingling internally and some general slight achiness (like after a workout) again internally, although the skin itself is still numb.

As a result, the tightness issue is hard to quantify, although I think it is reduced in general, and definitely reduced in terms in terms of how far it extended.

So, positive results. This is a 2 year process, and I'm not quite a year in with good results so far.

Yeah!!!!! Always wonder if Botox wouldn't help too? It's a muscle relaxer?

Cheryl, I asked my ENT about Botox several years ago. He said NO! Botox paralyzes the muscle, basically freezes it so it doesnt work. Its not something he would ever advise an OC patient to do. Of course everyone is different and has different circumstances so what wasnt ok for me may be alright for someone else. Just use extra caution.

HHHHHmmmmm - I was told it was meant to relax the muscle. I could see how it would work if done at selected areas around the esophagus, (not completely relaxed - just enough to make it easier to swallow for some people. I am just putting it out there. I know it works well for patients who have a lot of muscular pain... Maybe in places like the jaw even? Just ruminating. hugs

Number 1 side effect of Botox is difficulty swallowing that could last 90 days or be permanent. Robert from days past had regular shots for the pain in his neck. It is a toxin, a poison that paralyzed muscles. You had a smart doctor Christine! Pain management folks want to use it for everything.

Ed

Bear in mind that Botox was originally a treatment for migraine headaches - the use on wrinkles was discovered as a side effect on patients. I was offered this is a treatment for my migraines, and personally I think people are nuts for injecting botulism into their face. That's why I declined way back when.

I would, however, encourage people who have concerns with their scarring and tightness to look into the laser option.

Also, I'm starting to have some feeling in the flap...totally weird.

I agree... not a person who would consider botox period. I was just ruminating about the possibility. I have no idea how it would work just wondered if anyone had tried it. I do know as I said - of it's use for pain..

Tina,
Yes, keep posting updates on this. Very interesting. I'll have to ask UCSF on this and if could help me. I've been radiated though so we'll see what they say. I have a very stiff neck from my recent surgery and I have to take pain meds in order to move more freely.

Christine- I've received Botox a month ago from the head/neck plastic surgeon and it's been a God send. But I needed it for my chin because it kept involuntarily twitching and it was getting worse. We don't know if it's from surgery or radiation but doesn't matter. So the Botox is used differently than what Tina/Cheryl May need it for but it does work on oral cancer survivors. It was my head/neck plastic surgeon that administered it and suggested it and my ENT concurred.

Lola, Im glad your procedure worked for you. Best wishes with everything!

Hi there Tina,

I am glad to see that there is some treatments available for neck tightness/lymphedema. Is there hope that laser can break away scar tissue or lymphedema fibrosis kind of hardened tissue? Could laser also help with regaining sensation or is that a matter of time and allowing nerves and blood vessels to rebuild? Do you know if this treatment is still a possibility after radiation? Are these types of treatments covered by the Canadian medicare? My husband is concerned with the quality of his daily life but he is quite proactive and has been doing Yoga since we were dismissed from the hospital on Nov. 3. Radiation starts on the 2 of January. We are staying as busy and as positive as possible and everyone here is certainly a great inspiration!

Thank you so much for your caring words and your dedication to sharing and helping each other, Sophie

Stretching and exercise is about the only thing that slows the progression of fibrosis. I have had as many as 15 sessions of PT and soft tissue manipulation with fascia cream until the neck was very soft. As soon as I get in the cold it tightens up within minutes. I can get it softer but can't sustain it.

Sorry I can't answer the laser questions. We don't seem to use the same type of laser south of the border.

Update time again. Did treatment in late august and early January. Also saw surgeon in late December.

Doc said he was amazed at the appearance and softness of the scar tissue and he's prepared to recommend this to other patients.

My experience has been positive. I had pretty significant hard lump scar tissue on the left side from under my ear almost to my chin, and halfway down my neck. That is almost entirely gone now.

My mobility is improving. I can do full neck circles, and am almost back to full range of motion looking over each shoulder (about 90%). Tilting from side to side is about 80% (from about 0 immediately post surgery).

Tightness is getting better, mostly in terms of scope. It was from my chin to mid-breastbone, and now is from the underside of my chin to above the collarbone.

I am one year into the expected 2 years of treatment, and now down to 1 of the 2 lasers (CO2 laser only now).

As I am allergic to local anesthetic I do this without any freezing, so it is painful in parts, especially as my nerve regeneration has progressed, but I believe it is worth it.

There's the update folks.

Sophie, I don't think provincial health care covers, so you would have to check with private plans. It is available after radiation. My guy is doing this pro bono for me, which is awesome, so I didn't have to pursue coverage.

It's hard to say if it has helped with the sensation or if it's just the passage of time, but it has definitely helped with mobility. I specifically addressed the breakdown of the hard scar tissue and swelling with my surgeon, as I wanted an unbiased opinion, and he was unequivocal that the treatment had helped. He was actually amazed at how helpful it was (he was skeptical going in, but said it couldn't hurt to try).

I have continued with my physio, of course, as I certainly want to give myself the best shot at full RoM.

I think it's certainly worth looking into.

Hi Tina, so happy this us working for you! Keep posting the progress!

Hello Tina, I can't thank you enough for diligently posting the details of your recovery and treatments. Only someone living through this can describe it with such complexity and understand the difference between skin/nerve sensations and deep tissue scaring, tightness, numbness and pain sensations.

Stephen my husband does his best to share the tightness and pain around his neck and jaw from the radiation and the numbness/tingling from the surgery. His canine which is pressing against his new titanium jaw is twisting like a screw against his front teeth which is very uncomfortable.

Today is three months post radiation treatment and he is struggling to stay positive. He has been a professional painter for over forty years but his limited range of movement and grave discomfort leaves him feel defeated when he paints or attempts to do anything that could leave him feel well.

I asked him if he would be willing to try the same laser treatment you are undergoing and he said he is willing to do anything that could give him some relief and hope again. He doesn't complain but I can tell on a daily note that he is down and finding life very difficult. I am grateful he has remained so open about everything with me, it pushes me to find new ways to help him. Today he will join me at the gym for the first time even though is very tired which is good.

Tina, could you ask your laser specialist if he knows where else in Canada this type of treatment is given? I wouldn't want to show up at a laser facility that mainly or only focuses on esthetics. How did you discover this cutting edge service and how well established is this type of specialized treatment? If you have a phone number that I could call in Calgary then maybe they could guide me to where to go in New Brunswick.

As you can see I am hopeful and will send my husband anywhere if need be to get the treatment he needs, thank you for giving us a way to move forward, Sophie

Hello Tina,
Any news on your progress?

My husband's neck/chin fibrosis is feeling tighter though the doctors say they are impressed with his overall results. He is getting his fist CT scan just over a year since his surgery. I only see him scheduled for a chest CT, is it normal that his neck is not being scanned?

I will update everyone once we get the results in late December.

All the best and thanks to everyone, Sophie

I almost forgot, my email address is on my profile so you can send me the information of the specialist doctors who could guide me here in New Brunswick. Or send me a private message (PM).


Thank you again for all the updates.