After waiting almost exactly three months, my suitcase is packed for our trip to the city for my lip biopsy and first appointment with my new Rheumy. I'm somewhere between excited out of my mind - and scared out of my mind. We've decided to make a weekend of it so we'll be staying at a casino, and I will hopefully be able to spend the next two days sitting mindlessly in front of penny slot machines as the time flies by.
Yikes! Hang on a second! I normally love the ringing bells and flashing lights, but I just realized that I love those things when I am not suffering from vertigo, balance issues, and intermittent eye pain :-\ I guess I'll find out tomorrow whether the casino (sounds, lights, and visual stimulation) will prevent me from enjoying that environment. I sure hope not! Geez. Just wasn't thinking :( Oh well, the intention was to distract me from the waiting - so if the casino is a no-go-zone we'll be in a city so I'm sure we can find something else to do.
I've prepared a 5 page chronology of health issues going back as far as I can remember. On average, that's a page per decade ;) The first page is dedicated to the past twelve months. The other four pages are optional reading in the event they want to look for patterns and/or continuous health issues over time. I've arranged it into what I would now consider to be 'flares'. Easy to identify because they were periods of significant misery. Maybe they won't ever read it, but I'll have it for MY reference purposes since my memory is shot.
The new Rheumy is the Head of the Rheumy Division and University Teaching Program - so I've been told I will be seeing him and at least one other doctor as part of the assessment. I pray to God they will take me seriously, do a thorough exam, find the cause(s), and identify a course of treatment...
Wish me luck!
Loads a luck coming your way Head2toe !
May this visit bring you knowledge and help,
Hope the Casino is good to you, and that the atmosphere will not affect you too much.
Good that you have prepared the chronology for him,, and pray that the new Rheumy is as good as his status!
Best wishes Dolly x
Good luck Head2Toe. I hope everything works out well for you.x
I hope it lives up to your wildest expectations!
Is your casino in a warm, sunny clime with a heated pool? 8)
Good luck! Sounds like you will be seeing a true expert! Lucky you and hope you are lucky at the slots!
Kathy
Thanks for the well wishes everyone - I'm home!
Nymph - The weather IN the casino was perfectly climate controlled - outside was a little more .... damp ;) There was likely a pool somewhere in the resort, but I avoid pools because of the effect water has on my eyes.
The casino environment didn't bother me at all! Whew! But admittedly there were one or two people I could have done without - like the woman sitting a few seats down who at one point who was asked to vacate her seat by a casino employee - and she essentially told him to pound sand :-\ I was shocked at how rude she was and wondered if they were going to call the police... She eventually left, but not without some really rude behaviour.
The lip biopsy was a breeze! The freezing was out in an hour and I've had very little pain. Smiling hurts, and I discovered that eating strawberries a few hours afterward is a really bad idea - I obviously wasn't thinking about how acidic they are - and it really stung. No stitches.
The ENT also did a scope through my nose down into my throat. That was both unexpected and weird :o He said my nasal passages were very dry, and based on some of my symptoms (choking episodes, especially at night, chronic non-productive cough) and what he saw (red, irritated), he has tentatively diagnosed laryngeal reflux. He provided instructions that many of your will recognize: food restrictions (most of which I naturally avoid), and raising the head of my bed. He also prescribed a medication that takes at least 3 weeks to work (the name escapes me). He wants to see me again in six weeks to see if there's improvement, and if so the diagnosis will be confirmed. Oh! He confirmed there was in increased risk of a false negative lip biopsy result because I smoke...
I left the ENT's office and went to the Rheumy appointment. I spoke to a Resident for about 30 minutes, then she did a physical exam. The only unique thing about the exam was specific places she applied pressure to around my body (e.g. both elbow, then both collar bones). Most of the places she applied pressure were very painful. One made me yelp in pain :-[ She left the exam room immediately to consult with the team. Dr. S and two Residents returned with her (after several minutes) for a chat. Dr. S is hands down one of the NICEST doctors I've ever had the pleasure of interacting with. He did an amazing job of 'teaching' his Residents while carrying on a meaningful discussion with me. Here's the gist of what I got from that final discussion:
* They want to wait for the lip biopsy before making any attempt at a diagnosis. That will take 2 - 4 weeks. He taught them about sero-negative results while I was there in the room. I started that discussion by using the term - and he explained it to the Residents.
* When I spoke about my rib pain it was almost eerie when they said in unison to one another 'Her neck!' (I didn't quite understand why my ribs made them think about my neck....) They want to review my neck x-rays (not just read the x-ray report). He said further tests may be done but he wanted to review the neck x-rays 'during rounds' as a starting point.
*Dr. S noted that Zopiclone and T1's both cause dry mouth - so said that is something to keep in mind. They suggested I take Advil to address the pain, but I told them Advil and Naproxen do not touch my pain. I told him my mouth dryness was the least of my problems - but it is bothersome so I'd like to get it addressed. And I told them I was worried about reverting to being an insomniac. There was no hint they were going to make me stop - but I suspect it will be part of the treatment plan.
* He said they would likely make arrangements for me to attend a 'Rheumatology Rehabilitation Centre' once they figure out what's going on. And yes - such a centre exists in our town - he had checked :)
And finally - Dr S said our next conversation would be via conference call so I don't have to make another trip to the city just so we can have a discussion. Very thoughtful and considerate!
All in all I feel very hopeful. No one has ruled out SJS (in fact they were very pleased about the lip biopsy), but they are clearly considering other potential issues (differential diagnosis?) - so I'm really happy with this investigative approach. In the end I don't care what the problem is - I just want to feel better...
That sounds like a great trip all round!! Nothing like being listened to and taken seriously to make one's day :)
I'm really happy for you and hope there are solutions in the next call.
I wonder if Dr S can be cloned and shipped as needed......
Hugs
Caroline xxx
Dear Head2Toe,
You have provided a perfect example of why I recommend a University Teaching Program as the 'next step' for people who aren't finding solutions with their current medical team.
We moved to our current home precisely because there are two University Teaching Programs within 20 miles from our house.
Of course, not every experience is as supportive as yours. And there are Prima Donnas as well as good team leaders at a Medical Center.
But "stand alone" medical practices just don't have the depth of experience, the resources, and most of all the TIME to truly address a complex medical case.
Best wishes for your health. Smoking is, of course, part of your health problem. But you know that. I only say this because I was a former smoker, and at one point my husband said "watching you smoke is like watching you stick a needle in your eye"...why wouldn't I speak out?
Hugs, Elaine
Head2Toe: Neat that you will have a conference call next - all the very best on the follow up and future care!
LOL Elaine - I would expect nothing less than you shooting straight from the hip! I'm curious - what motivated you to quit smoking?
The medical team and I had a lengthy discussion about my smoking! It was fascinating, and not at all what I expected.
To make a long story short, it turns out that the medical team had attended a training session the day before about motivating patients to quit smoking - and I was the first patient they tested the technique on. It became a 'teaching moment' in which the medical team became the students and I became the teacher. I won't bore you with the details of the entire discussion, but when Dr. S asked what would motivate me to quit smoking I told him 'If you told me you would reject me as a patient unless I quit - I would quit'. He then asked if I would start again after treatment was complete, and I said 'Yes.' When the discussion was over, no one had even suggested that I quit smoking. Well - not yet, anyway ;)
So, do I know that smoking is not good for me? Well, I don't usually mention it, but my count of 10 cigarettes a day is actually high because I usually only smoke half a cigarette because smoking dries out my mouth :P So yes, I know.
BTW - I wish everyone could experience what I experienced yesterday. Having two excellent medical appointments (back-to-back) was beyond my wildest dreams. And yes - I wish everyone could experience the teaching environment as a care option. It was incredibly interesting and satisfying. They may not find 'the problem', but I firmly believe they will make every effort to figure it out - and that's all I've been asking for.
I'm so glad your appointment experience went so well! Interesting tid bit about smoking and lip biopsy. I wonder how many doctors know about that one? I smoke as well and was negative. The pressure points the resident applied I believe sounded like tender point checks for fibromyalgia. If you look up fibro tender points you will find a map of the 18 points and see if those correlate with the ones applied on you. Fibro tends to invite itselfs to a lot of parties unfortunately.
That must have been a small incision for you not to need stitches! Yay for experts! It was no fun trying to eat around stitches and trying not to get them hung up between your teeth.
Silent laryngal reflux is no fun. I take both nexium and zantax twice a day because I have GERD issues as well. No more reflux problems thankfully. ENT saw hypervascularity in my voicebox and said something about burning them or something. I stopped listening after the word burning, so have no clue what she was talking about. Oh well.
Keep us updated!
For Tharrell:
"Burning THEM" is referring to removing small polyps or cysts from vocal cords. The reason these are removed is the high likelihood of becoming malignant. Your voice is likely huskier than it originally was..and since you MAY have these growths to which I refer, it may have caused you a hoarseness or yet another degree of huskiness or perhaps a breathiness to your voice. Once you have "them" on your cords and smoking continues, the doctors will become aggressive. Since you stated he said "something" about burning them instead of planning that procedure would indicate whatever growth you have is very small and of not great concern to him. More of a wait and watch. Those alterations of your vocal cords affect the quality of your voice.
If you want to know the downside of this surgery when the growths are more pronounced or of varying degrees of the types of growths, think of Julie Andrews. We will never know if her surgery was botched or her growths required snipping a bit of her vocal cords themselves to assure removal of precancerous growths. I don't know. Referring to the WONDERFUL results think of Adele, John Mayer, and Keith Urban who have had polyps removed successfully. Not only were they removed, the singers maintained vocal rest for a year after to insure recovery of the vocal folds post surgery.
As to the quitting smoking, I will say this about that: I quit smoking after 25 years of (holding it to) pack a day habit. I believe the only way to quit smoking is to have the knowledge you WANT to quit. I cannot tell you how to do it...or give you guidelines unless you WANT to. If you WANT to then the process will be easy for you. I am serious. (Even though it was the hardest vice I ever gave up!!) If you can smoke 1/2 cigarette @ 10 per day, I can't see that as much a problem compared to the way I smoked. btw: I KNEW I would quit as two of my father's four sisters died (around 40) of throat cancer. It was easy with that incidence. They were the only ones of 7 siblings who smoked. See? No brainer..for ME.
As to smoking drying out your mouth, I am down to about one beer a week or two weeks. It dries my mouth terribly...but I pop a xylimelt and keep going. Now..that's bad!! We all choose our own poison!
c3
Well yikes! Now I wish my brain had not shut down. Unfotrunately my other brain, otherwise known as my daughter, had not been able to make that appointment. I seriously have to rethink the smoking habit. Never mind that I have copd. Ahum.
I am so glad you had such a positive experience. It is always nice to see doctors thinking and not just judging. I love the idea of a team. I often wish I could get all of my doctors in the same room and ask "what heck is going on!"
I just wanted to note that you may want to check with your insurance to see if the phone consultation/ appointment is covered. Some won't cover it. I mention this as it happened to friend seeing a specialist 4 hours away and got a fat bill instead of a minor co-pay. Even if they don't cover it you may be able to get a pre-authorized exception of you ask. Just a thought. Good luck.
c3 and Tharrell - Like most smokers, I have quit in the past. Once for four years, other times for 6 months to a year. It was virtually painless every time, because I was motivated. But when the desire to smoke again came back - it was strong. The discussion I had with the doctors was that I am NOT motivated right now, and I have zero desire to BE motivated. I think part of the reason they did not push the issue is because I do smoke less than most smokers. Who knows.
Tharrell - I too am glad I didn't have stitches - I was dreading that. It's now been just over 48 hours since the biopsy and although he told me he was taking a half centimeter square out of my lip that would take about 5 days to heal, I don't think it will take that long. I can easily run my tongue over the spot without pain, and it does not feel raw. I have been wondering if my super healing powers are at play? Super fast healing has happened before (and shocked my doctors), so we will see.
The ENT was from the US. His degrees were from the University of Louisiana and Stanford University. I asked why in the world he moved to Canada, and he said "My wife." And then he spoke longingly of California ;) I also asked how much experience he had doing this procedure. He said 'Hundreds'. He said he only does about one a month since moving to Canada, but he did the procedure much more frequently when he was in California.
c3 - Yes - we all have our vices, and we all make choices. I don't feel like a smoking 'victim'. It's a conscious choice.
BKreader - Thanks for sharing that important information. I don't think billing will be an issue here in Canada as we have universal health care, but forum members from the US and other countries may want to keep that in mind. Having said that, it cost us several hundred dollars (ferry, hotel, food) and the day off work for us to make the trip, so even if I had to pay out of pocket, it would be worth it.