Meeting with the surgeon...

This morning I met with the surgeon who did all the work on my neck/throat to excise the oropharyngeal carcinoma in late November of 2007... about 16 months ago. The last time I saw him was in August of 2008, 8 months ago. Since then, he and his wife have had their fourth child... but this blog is about me, not him. Nice guy, though.

On we go...

The examination went well... aside from the fact that he produced that damned fibre optic scope that he seems to take great pleasure in feeding through my right nostril and down into my throat to have a look around.

The good news is that everything looks 'really good'. There isn't any bad news, only one area of concern.

I went in with a list of complaints/observations; thank goodness for G. If not for her, I would never track some of these things, let alone write them down for reference. The list today looked something like this:

1. swallow is changing; becoming more of a challenge
2. reflux and heartburn; recurring way too much
3. tongue issues; burning sensation, loss of taste, odd sensations
4. intermittent coughing
5. hiccups, burping (gas)
6. hearing; much better. The guy you sent me to was wrong!
7. joint pain, muscle pain/fatigue, especially in lower extremities when inactive for a time
8. swollen saliva gland; is it ever going to go down?

So, the basic exam went well. He probed and prodded and stuck his fingers in my mouth to feel around. Structurally, everything looks good. There is no evidence of anything new.

The list;

1. The swallow will continue to change as I continue to heal. He recommended that I follow the advice from the speech people at iRSM (once Compru). If, in three or four months the swallow is still problematic, I should be going back to them to get a fresh view on the situation.

2. Dr. Williams prescribed prevacid to get the reflux under control. We'll give that a try for a couple of months. If that doesn't address the problem, then he may need to 'scope me (or refer me to a gastroenterologist) to find out what's going on there. He, initially, thinks that its probably just a by-product of the new swallow challenge.

3. It sounds like the tongue issues are all part and parcel of the lingual nerve repairing itself. He seems quite confident that over time it will all be back to normal. Yay!

4. Intermittent coughing. He believes that it may be part of the reflux issue. But as he was talking about all of that, he wrote up an order for a chest x-ray.

5. Hiccups, burping (gas) he put down as part of the reflux issue as well. We had another discussion about the serious hiccups I had while in hospital (vegas nerve silliness), and he introduced the name of another nerve, which I promptly forgot... and I also have forgotten part of the conversation around the hiccups. But there isn't a huge concern there...

6. I did not tell him that the guy he referred me to was 'inadequate'. I just pointed out that my hearing is back to about 90% and let it go at that.

7. We had a 'light bulb' moment around the joint/muscle pain; I could be suffering from something to do with a hypo thyroid. I have to look this one up. Apparently, when we factor in a few of the other items on the list, the joint pain can actually point to thyroid issues. This little syndrome could account for a number of the other wee challenges that I've been facing, not the least of which is fatigue and some motivational issues. He has ordered a series of blood tests...

8. The lump in my neck which is the transplanted saliva gland will not shrink much more that it has already. Damn. We could start looking into cosmetic surgery, but what's the point?
Vanity?

So, generally then, things are in good shape. We'll get the reflux contained, and investigate the thyroid.

Busy Day...

Well, so far this morning I've been to work for a couple of hours, then jumped on my motorcycle and ran up to Anderson Hearing Clinic to get my hearing tested. After I'd parked my bike, and walked around the building towards the front door, I passed by dog that was tethered to one of those stand up ashtrays. Nice dog... After I got well beyond him, a wasp stung him, and he took off, pulling the ashtray over, and then with him... it terrified him! He ran out into the traffic, but was not hit... some guy in one of those monster 4 x 4 pick ups ran over and stopped on the ashtray, which effectively brought the hysterical dog to a halt. I stepped into a local restaurant and called for the owner, who did emerge to rescue his dog. You'd think that if someone could lift one of those ashtrays, they'd figure that their dog could move it too... sometimes I just shake my head.

The hearing test was very similar to the one used to take the baseline way back in November of 2007. The biggest difference was the use of words at varying volumes, and not just tones. What we did discover is that, in a controlled environment, I can hear and discern language nearly perfectly. Once we moved to the frequency test, we discovered that the high end frequencies are a bit of a problem... though not as bad as I first feared. The actual hearing loss is 'moderate' at worst. The challenge is that when the loss of acuity of the highs are combined with the tinnitus and background noise, I begin to lose the ability to distinguish certain chunks of language. The nice man suggested that it can be adjusted for with hearing aids... at about $1,400.00 per ear. Well, I guess that isn't too, too bad, given that it could be as much as $3,000.00 per ear! He is willing to let me have a pair of aids for six months to be sure that they are actually working... I did say that I want to have words with my Doctor before making any sort of decision... Vanity aside, I am not adverse to the aids. Its a little disconcerting to be sitting in a meeting and not being able to pick out specific conversations. I'm not entirely sure that aids will fix that, but I'm willing to give it a try if the good Doctor suggests aids as a viable option.

This afternoon I will be spending an hour with the ladies at COMPRU, now iRSM to see if we can't figure out what to do about my swallowing problems, and maybe even my speech issues. And, coincidentally, Irene sent along (via email) photos and mpegs of the last couple of times that I was in....

This first mpeg is the baseline done before the November surgery. Its a bit dark (exposure), but if you watch it a couple of times you'll be able to figure out what it is all about.

This next mpeg is one month AFTER the surgery. Its a much better framing of the shot, and an exposure level that works much better...

And next we have the six month view. This is the one that shows what the issue is... if you watch it carefully, you can see the material that I am swallowing get hung up on the flap that covers the windpipe. I end up coughing a little bit, for a little while, if I can't clear it quickly. Constantly drinking water while eating helps, but, well, constantly drinking water dilutes the taste of the food! And, of course, when I ask for water at a restaurant, it comes ICED, which further diminishes the taste experience.

But its all kinda cool to watch, isn't it?

Its kinda odd to note that the first mpg shows the need for a secondary swallow, the second mpg is nearly perfect in how the barium mass goes down slickly, and then the third one is taking way too much work to swallow. I'm not entirely sure why the second and third are so different. Yes, the tissue swelling has gone done. Healing is good. I thought that maybe they had mislabelled the mpegs and pre-op vs. one month post-op had been reversed, but I am able to see the indicator wire that was placed in my jaw to warn off the radiation team from the relocated saliva glands in mpegs two and three and not in mpeg one, so I know that we're looking at them in the correct sequence. Maybe we've got scar tissue that is inhibiting the process? I really don't know at this point...

Irene sent some photos, as well. I'll upload them in a separate posting...

Take a deep breath... the hearing in my left ear has corrected itself, no thanks to any of the doctors! We still have the incessant white noise background, although the periodic high pitched, metallic whine of tinnitus is occurring with less and less regularity, with no hint of seeing the audiologist any time soon.

In fact, I'm a bit disappointed in the 'after care'. My call to Dr. Williams' office got the response that I should talk to my radiation doctor, after my radiation doctor (Dr. Jha) specifically told me to use Dr. Williams for all my concerns going forward. I am not impressed with the lack of communication and/or the hot potato approach to after care.

Even the folks at COMPRU seem a bit edgy about what to do going forward. I met with Irene and the team yesterday for a speech and swallow assessment, and will do so again in November of 2008.

They did the usual photos: exterior head shots from five different angles, and photos of what's happening in my mouth/throat. Their assessment, from a we-see-hundreds-of-these-mouths-in-a-month point of view is that my teeth are in good shape. We did the speech stuff; speaking with tubes up both nostrils and one in my cheek to assess the efficiency of my soft palate (normal!), the plate and microphone under my nose to further check how my mouth/throat is handling sounds around/through the soft palate (more normal!), and then recording spoken words, topped off with a three question 'interview' about QOL issues. Oh, ya, and then two double sided pages of questions on the same quality of life issues. (Does it take you longer to eat? Are you being socially ostracized because of the way you eat? How's your sex life?)

I brought up the fact that I am suddenly (within the last couple of weeks) having trouble swallowing... well, its more about clearing crap from the back of my throat. So off we went to do the barium swallows again. Irene was very non-committal, but I could see that 'stuff' gets hung up on the shelf behind the flap that covers the windpipe when I swallow. After a bit of prodding, Irene did suggest that it is probably a by-product of the 'dry mouth'... fluids sailed right on by, but the barium pudding and barium smeared cookie hung up, until fluids were added. I'm trying to get them to release the mpeg that they make of the fluoroscope so that I can post it here and on my website.

I should note that I've gone back to using the Akabutu's Mouthwash just in case the swallowing issues are related to oral health, like fungus or some other horrible condition.

As I write this I am eating a coconut bar (with mango juice flavouring added). Its very tasty...very nice. But the tiny bits of coconut are going to be with me all bloody day; my tongue is still not cleaning properly, and water isn't washing it down effectively. But it tastes lovely and its good for 260 calories (490 kcal).

On a more pedestrian note, I am just about ready to start using my motorcycle to commute. All that's really holding me up is the need for a way to safely carry my laptop. Well, fear has a lot to do with the delay as well... heh, heh, heh.

Visiting with Irene at COMPRU

This afternoon I spent a couple of hours with Irene of the COMPRU team, essentially going through the same process/procedures that we did last November. (And I got up the nerve to ask her if those brilliant blue eyes were really hers. She does wear blue lenses over her own grey-blue eyes. Its a fabulous effect!)

We started off with the head shots: full frontal, three quarter frontal, both sides and half frontal, both sides. Then we went into another examination room where they took closeup shots of my mouth. It takes three of 'em to do it; one to hold the lip spreaders, one to photograph and one to manipulate the mirror that they use to get the top and floor of the mouth. They understood my concern about the irritation in my lower lip and used a smaller set of spreaders. Very cool, ladies!

Irene and I then went into the test area where we did the speech vs. soft palate tests and then recorded my voice for comparison. My soft palate is working brilliantly, in fact, one of the tests had the identical results to the pre-surgical assessment. As I read the lines she needed recorded, I noticed that my sibilances are still pretty weird and that I am having trouble with "p's". I'm pretty comfortable with just about everything else.

And off to do the video fluoroscope! I'm not sure how indicative the results really are. Instead of the pudding laced with barium paste, we just did the paste. The paste is exceeding easy to swallow. She and the radiologist seemed okay with it though. They also gave me a gluten-free muffin; dry, and it stuck to my teeth. She reminded me to keep working on the tongue and to try chewing on both sides of my mouth. As it is, I only chew on the left because I'm afraid of biting my tongue on the numb right side. I do need to exercise it.

I also managed to identify the plate that they put in my jaw to tie it back together after they split it for the 'mandibular swing' part of the surgery. It doesn't look like I imagined it would. We also identified a very fine wire with a tiny loop at each end that runs from the original location of the transplanted saliva glands to the new location in the front of the jaw. Apparently this wire is used by the radiologist when lining up the guns for the radiation therapy so they know what areas to avoid.

I wonder if they'll give me a copy of the video florescope to show here or on my mythical website?

Speech Pathology

Yesterday I had an appointment with the C.O.M.P.R.U. Team at the Misericordia (have ya noticed how I'm not getting anything posted on the day?). My particular therapist is Irene... a very nice young woman, fabulously blue eyes. I was expecting that I would be taught several exercises to strengthen my tongue and throat, but all they really did was get another of those mysterious 'baselines'. Now, to be fair, I know that they will use the baseline if I require therapy after the fact...

We did a number of things:

A barium swallow. This was kinda cool. They had me drink the barium, eat it in a pudding, and then chew it on a rice cracker, all the while recording the fluoroscope images. They converted the images to a mpg and played it back for me to watch. Its very interesting how your mouth/tongue does things that you are not aware of.

Photographs. It started off feeling a wee bit too much like mug shots; face on, profile quarter left, profile quarter right, profile left, profile right. It eventually moved on to shots of the oral cavity, where they pulled my lips back out of the way and took photos of my mouth and throat. At one point they even inserted a contoured mirror to make the shot. The ladies involved where relatively young, and were quite curious about the location of the tumour, spending some time trying to locate it, identify it, and understand it.

Air Pressure. Tube up each nostril and a small tube inside my cheek to determine how well my soft palate is functioning.

Speech Pathology, my term and not necessarily theirs. I was asked to read a number of passages. The first passage was done wearing a funny contraption that had a microphone positioned directly under my nose, a piece of plastic for isolation pressed tight to the upper lip, and then a microphone directly above my mouth. This was used to analyse the 'nasal' quality of my voice; do I speak through my nose. And no, I do not.
This was followed up by more reading, this time into a tape recorder. These recordings will be used to compare my current state with my future state and determine whether, or what, therapy is needed.

I will see these folks four times. This was the first time. The second time will be at one to three months, then six months, then one year from the date of surgery.