Addressing my Dupuytren's

Dupuytren's Contracture
c/o Janet's hands
101 Viking Lane,
Diabetes, CA  12121


Dear Mr. Dupuytren's:


It has come to our attention that you have been spending an inordinate period of time occupying Janet's hands.  We understand that you have aggressively progressed especially on her right palm, but that you have extensive expansion plans to move to the left and perhaps involve multiple finger distortions.


We respectfully request that you cease and desist immediately, or we will have to take more drastic measures to control your occupancy.  Obviously the use of vitamin E, DMSO, or even Lugol's solution (iodine) has not loosened your hold on Janet's hands.  You heedlessly move around converting collagen type I into collagen type III. This is a very bad idea, as type III is less supple and will accumulate and contract over time.


We have plans for a counter attack in one week.  Unless you opt to move on your own, we will be forced to wield a large needle and start nicking at your most beloved cords of contracture.  We have tried reason with you in the past with no response. Now it is time to bring in the big guns and force your hand (so to speak).


Regretfully yours,
Janet's Brain, Body, and Soul


---
Anyone who would like more info about Dupuytren's can Google or check out Wikipedia. But basically, I've had these nodules on my hands for several years, and now they've begun to turn into stiff cords. It's pretty aggressive I guess and on both hands, but so far I have one contracture that is getting fairly bad.  Cause is pretty much unknown, but there is a genetic component, and it is more common in people with Scandinavian heritage and Viking in their blood (ha! I would have made a fairly decent Viking I think).  It's also associated with other risk factors like being a man (not the first time I've had something that only men are supposed to get), diabetes, and liver fibrosis.  So probably my genes and my diabetes are messing with me.


No big surprise.


Here are a couple of photos of my right hand to illustrate the problem:

Really, there hasn't been too much functional loss except for yoga poses that require palms flat to the ground. But it's gotten worse in the past couple of years and now I do get irritated by not being able to straighten my hand and I know it will only get worse if I don't do something about it.


So, I met with a new hand specialist - I did a lot of research and had talked to another "hand guy" in Oakland. But the orthopedic surgeon types want to do surgery to remove the affected tissue. And I do not want to have the most radical treatment first when there are less invasive approaches to try first. 


I have an appointment to get a "Percutaneous Needle Fasciotomy", also called a "Needle Aponeurotomy". It sounds scary I guess, but really it is a series of nicks along the cord done with a needle that allow manipulation of the hand to straighten it out.  There isn't any big incision, and the recovery time is very short (a few days vs. a few weeks with surgery). The rate of recurrence isn't any worse than the track record of surgery either, but there is a likelihood that it will recur - and I'll probably have to have my left hand worked on pretty soon (earlier would be better than I've waited for the right hand).  Also, if after a few months it seems not 100% where I'd like it, this doc will go in with an even newer treatment of collagenase injections (Xiaflex).  His approach is a little different than the other doctor I talked to in this regard too - the other doctor didn't want to consider it and was somewhat disparaging.  My new hand specialist is a plastic surgeon, and said that he uses based on learnings from using Botox - i.e. he spreads the injections around to "poke holes" in the cords rather than squirting it all in one place.


I'm pretty happy with this plan and I'm excited to see how well the NA will work on my right hand. Keep you fingers crossed for me (because I really can't anymore, at least on the right hand)!


Just a quick update on my internal issues - stomach feels pretty good, still taking the trial medication without any side effects, working on blood glucose control using the CGM (continuous glucose monitoring), and I'm getting all caught up on my maintenance schedule in general (eye exam, mammogram, standard blood tests, etc.).  Also still seeing Dr. Who for acupuncture - I don't know whether it's making a big difference or not, but I still want to stack as many cards in my deck as possible for good health.

Things we all can agree on...

#1 - being healthy is great

#2 - doing your taxes is kind of a drag

#3 - a sunny afternoon after a morning of fog and clouds feels like a gift

(feel free to add to this list - just a couple of things that popped in my head today)

Update: I'm 6 days into my guinea pig gig - so far no side effects from the drug that I can identify. Yesterday I felt a bit yucky, but I still have days like that at this point. I tell you what though - I have to hurry and gulp down the 7 (yes SEVEN) tablets because they taste terrible! I think they are pretty acidic.  I looked up the side effects for this drug before I started (Kuvan).  So funny (not really, but kinda) - some significant percentage of people in the PKU clinical trial had nausea as a side effect. 

oh, and vomiting too. nice.  

So that is why I'm so relieved to feel pretty okay so far.  After 4 weeks I switch to a higher dose though - 14 tablets at a time  (that's right - FOUR plus TEN = how many pills I have to gulp down). Keep yer fingers crossed that I don't start barfing at that point.  If it seems odd to anyone that I'm testing a drug that should help my stomach function better but that might make me sick. Well, join the party! 

Speaking of things that make me barf. I realized yesterday that one reason it's hard to identify a specific trigger for the extended episodes of vomiting because so many things will make me nauseous and often result in me throwing up. Usually just a one-off thing - or at least short-lived.  Jet-lag (check), migraine (check), too much stress (check), riding in the back of a cab with a terrible driver (check and double check).  I'm serious - I have had to ask a driver to pull over and let me barf in at least 3 different countries!

Update #2: RE: my healthcare"team" composition...

I decided not to divorce my endocrinologist and dump him for someone new. I've been seeing him for over 20 years now and I went in to see him recently thinking at least I should talk to him in person before going to another doc. Then I changed my mind. I don't want to train another doctor right now. I'm already seeing too many new doctors who don't know me. 

I made an appointment with a hand surgeon for my Dupuytren's yesterday (or maybe monday)...he's located a bit farther away than some of the other options so now I drive all the way down to Stanford for my GI doc (45 minutes in no traffic), out to Orinda to see my endocrinologist, and up to Marin to see this hand surgeon. So much for centralizing and simplifying my medical/health team!

If you're wondering about Dupuytren's, don't worry - I'll write a post about just that next time, what I'm hoping the doctor can do for it, and include a picture of my hand. But for now it's time to sign off. I've been sleeping more, and I think that is a good thing. 

#4 - sleep is good.

Chapter 5: In which Janet is just one step removed from a lab rat

Boy, it's been awhile since I've posted. I am happy to report that I'm feeling better. Not 100%, but back in rebuilding mode.  I have a lot of ideas I could write about, but today I'll tell you about a clinical trial I signed up for.

The GI doctor at Stanford is good. She slapped me into the hospital on the spot when I went for my first office visit. I got stabilized, and pumped full of electrolytes and fluids. I was there for 5 days, getting out just in the nick of time*. Anyway, they also did some tests, like 4 different blood draws, an endoscopy, and a stomach emptying study that involves eating radioactive scrambled eggs and then getting scanned every hour for 4 hours.

No surprises really. I had some shallow ulcers in my stomach, likely from being sick so often and over a long period of time.  So I'm on Prilosec to manage the acid. I'm still off coffee and alcohol and spicy foods too, so I plan to let my tummy heal up thoroughly before I jump into my vices again.

Also no surprise that my stomach didn't empty very fast. I've had intermittent gastroparesis (what they call it when your stomach doesn't empty) for over 10 years. But usually mild and I really haven't had to make any permanent lifestyle or eating habit changes over the years. Well, the plumbing has been pretty much backed up to a standstill over these 3 months or so.

According to the GI, there are a lot of overlaps between gastroparesis and cyclic vomiting syndrome (CVS).  I'm taking a drug to prevent migraines which will hopefully remove at least one trigger for a CVS episode.  Otherwise, the treatments are more of less the same in terms of anti-nausea and anti-emetic drugs.

Currently, we are mostly addressing the gastroparesis - although there aren't really good treatment options out there. I react badly to the most common treatment, Reglan. I took some antibiotic that promotes motility in the stomach, but it only works for 2-3 weeks.  I'm using Iberogast - a tonic that has a bunch of different herb extracts in it - it does seem to help. And digestive enzymes from Trader Joes.  And Dr. Who is also addressing gastroparesis and general digestion with acupuncture and Chinese herbal formulas (which taste nasty if you ask me).

Are you bored yet? Wondering where the hell the lab rat is?

WARNING: This content contains science geek information that may or may not confuse or interest you. 

I signed on for a pilot clinical trial at Stanford for a different/new drug to treat gastroparesis. I don't say "new" because the drug already is approved for treating phenylketonurics (PKU). It is a co-factor for an enzyme that can lower Phenylalanine levels in PKU patients.

This drug is also a co-factor for nitric oxide synthases (NOS) - and without getting too scientifically confusing, let's just say that NOS abnormalities are found in gastroparesis - the NO is needed for the action of the smooth muscle in your stomach.

Gastroparesis is also more common in diabetic women, and there is a gender difference in the NOS malfunction. In lab rats. (oh, that figures, right?)

So, I signed up for a pilot study to test the drug in humans. Are you as excited as I am?!  Seriously, this will at least make things interesting for me.  It was really strange being on the other end of an informed consent after working from the diagnostics and pharma clinical trial side.  They are recruiting 20 diabetic women who've had diabetes for at least 5 years and have moderate to severe gastroparesis.  I think I am #7.  I have to get a couple more screening tests and then I'll start taking the drug on Feb 3rd.

I guess it's a little crazy to sign up for a trial like this when the side effects include headache, nausea, and vomiting.  But those things happen in the minority of subjects, so I'm keeping my fingers crossed that I won't have any side effects that would cause me to withdraw from the trial.

*We went up to the NW to visit colleges for Teen Wonder and family over MLK weekend. I had made most of the arrangements, but Mr. Wonderful was left holding the bag to find the hotels and possibly take both kids on this trip to Seattle and Portland (and Olympia where Evergreen College is and where Teen Wonder will likely go next fall). So I was released on Wednesday afternoon and Thursday morning we all got on a plane to Seattle. I took a lot of drugs over the weekend...

Hallucinations, no matter how well meaning, do not qualify as Self Help

Well, THAT title is sure misleading! Because I got bored with my hallucinations and have moved on several times over since then.

However, I will say that for a control freak, hallucinations are right up there with whatever drugs they try to sedate you with when putting you under - NOT RELAXING ME.  Especially worse when your loved ones tell you that you were going off about too many layers of meat on your bed and how your new boots were stolen, and if we could just get through that last layer of sleep there's something special - a prize? I just don't know. I never got there.

But hey, there is more Self Help on the way! Because my trip to Dr. Say Nothing, the gastroenterologist was beyond disapointing. I need to see a "super-specialist" I guess.  And let me guess what else - are there like only one of these magical people in the entire world Bay Area?  And let me guess what else? Would their first availability be sometime after monkeys fly out of my butt? February? earliest?

Yeah.  So, what does any self respecting over-educated Ph.D. do at a time like this? Search the internet!! (duh).  I have made an appointment with an acupuncturist here in Alameda who seems to have a cult-like following - and this put me off and I almost went with the nice lady (I assume shes nice) who is actually partially covered by my insurance. But then I realized the amount of money the insurance company was going to reimburse were fairly small so I went for the Acupuncturist with a capital A and a radio show and 72 Yelp reviews, all positive, and half a dozen recommendations on Berkeley Parents Network. He also has a lot of policies and his staff want to be sure you know it is expensive right up front. So I'm nervous. But I'm going.  If it is too cult-y for me I can always go to plan B - the nice lady with better rates and coverage.

I also researched my herbal and supplement options and ordered/bought some expensive stuff to try.  Actually one is like an old friend - I can't wait until I get my bottle. "Iberogast" - an herbal concoction I used for my  tummy years ago that really seemed to help. But they didn't sell it at the local health food store. Oh well.

Parting rant:
Gastroparesis - a problem I know pretty well. I know the symptoms, what makes it worse (sometimes) - it flares, it goes.  It does NOT cause bouts of uncontrolled vomiting 4-12 times per hour for a week following a pretty predictable cycle. Period.  Dr. Say Nothing just didn't seem to get this. When I asked this so called specialist was it GP when I had pregnancy induced hyperemesis, he said OOOH NO - that is something entirely different!  Still I couldn't get a lightbulb to go on for the concept of a hormonal or migraine like problem lately even though I do have some gastroparesis.

It happens all the time. If you have (insert chronic disease here, in my case diabetes), then the most logical choice for a doctor is to pin your new problem squarely onto that old problem.  I believe in parsimony, but I believe more strongly that a diagnostician should be thinking about all the cards on the table and turning them over one at a time. Not just looking at the same 2 or 3 and trying to make new hands out of them when it just doesn't make sense anymore.
sheesh.