One Sick Mother

Et tu, Tendons?

About five or six weeks ago, I performed an action, which I perform hundreds of times a day, and I got this excruciating pain across the front of my wrist, which radiated both directions, up my forearm and down my hand. I didn't yelp. I practically YOWLED. Unfortunately, both kids were present.

"Mom are you OK" 

"Yes, Love. It's just my hand"

"Did you pop a bone?" (don't you love the casual EDS shorthand we have in our house?)

"Actually... No." (I don't know what I had done. I just knew it wasn't a bone. And it hurt!)

My hand was hot, tender, very painful and virtually unusable for hours afterwards. Ever since then, certain movements can really, really  hurt. I knew it was soft tissue. The pain wasn't IN the joint, but around it and radiating from it. I thought maybe I had a bone out of place in my wrist, which was effecting ligaments or tendons.  I tried to fix it.  Unfortunately I was at the dinner table at the time. Grace said  (in exactly my tone of voice) "Do you HAVE to fix your bones at the dinner table? That's disgusting, Mom!"  (Ha!)

I kind-of hoped that maybe it would go away. Certain movements, like pincer grasp seemed to aggravate whatever-it-was, so I tried to avoid these and rest my dominant hand as much as possible (again: Ha!). 

Then one day I used a manual can opener and YOWCH!  I ended up on the kitchen floor, actually crying with pain.  From soft tissue!  Who knew?  So I decided enough was enough and called the Rheumy the next business day.  I finally got to see her this week.

I have tendonitis in my wrist. Thankfully, it is not De Quervain Syndrome (thank you, God!).

"Can I still knit?" 

"Does knitting make it worse?"

"No"

"Then you can still knit"

(oh good)

So I have a diagnosis and a treatment plan, which is good. However, I can't help thinking that here is more connective tissue that has let me down. First it was the ligaments, now tendons are complaining.

What's next?  Will my cartilage take out a work-to-rule (and WTF IS a work-to-rule anyway?)

But -Good news: I think I have finally found an application where Voltaren gel actually works! 

Happy days.  (or something) 

Doctortutes Part II

I got a lot of feedback on the last piece I wrote on this subject  before; -not here on the blog, but through Facebook and e-mail. A lot of my sick friends were intrigued and thinking about giving it a try.

That had not been my intention.

I had planned to slam the whole practice. However, as my one experience with it had been mostly positive, I couldn't.  I can't report dishonestly and slam something that kind-of worked for me.

But this is the conversation I have been having with my friends:  Say you do ask a question of a doctortute over the internet and you get some suggestions/ ideas:  What are the next steps?  I remember after #29 contacted me through this blog with a suggestion that I be tested for dysautonomia, #25 was VERY suspicious when I  told the story to him and raised (again) the dysautonomia question. "Where did this come from" he asked.

"From you. Remember very first time you saw a (small) seizure, you said that looks like some kind of autonomic dysfunction. Don't you remember?" (and it was exactly what he said).  Isn't dysautonomia the same thing?  He reluctantly  agreed.

And said he would write the referral to the dysautonmia research lab here in town.

And didn't

So although 29 was not a doctortute, the end result would probably be much the same if she had been: 

Nothing happened.

You see, most doctors have largish egos. And if you go to your doctor and say "this random MD on the Internet who didn't examine me suggested I might have X " (which you didn't think of), most doctors will be (in turn):

a. Insulted

b. Skeptical

c. Defensive

d. Stubborn

 

...and will probably refuse to follow the doctortute's advice -no matter how sound-  for one or more of the above reasons.

So really, doctortutes may ultimately add to the confusion and frustration many of us experience in trying to find a correct diagnosis, instead of helping it.

 

Something I forgot to mention in my initial post on doctortutes is the high-class version of the profession. Now obviously, these aren't known as "doctortutes" either (although maybe they should be). They prefer to call themselves "concierge doctors" or  "boutique doctors". They charge an annual retainer plus their time  and deliver sterling and individualized service for those who can afford the thousands of dollars a year they cost.  Reading the articles on these types of practices, see a NYTimes piece here  and another interesting article here, the winning formula seems to be a direct money connection between  the doctor and patient (client?  ...john?).  No insurance. No Medicaid. No medicare. This had many advantages for the doctor:  They can cut down on administration staff for starters.  Also, because they are getting a much higher return per patient, they need much fewer patients to break even. This in turn means even less overhead costs: fewer nursing staff and smaller office space.

Win for the doctor.

 

The patients seem to get what they pay for: No waiting! Fast, individualized service, doctor management of outside players, such as test facilities, specialists and  hospitals. And house calls!

I also suspect if a paying-through-the-nose patient presents with an unusual or difficult to diagnose condition, the doctortute won't say "I can't help" or "see a shrink".  Presumably the doctortute, aware of how his bread is buttered, will actually advocate for the patient with specialists and dig until he gets to the bottom of the problem. This may cost the client big bucks, but I'm guessing most have it to spend.

Win for the patient.

(and so further increases the divide between the "Haves" and the "Haves-nots")

 

Of course one cannot write an article on doctortutes without mentioning the ultimate doctortute of our time: Dr. Conrad Murray.  As everyone in the universe, and probably a few without knows:  Dr Murray was Michael Jackson's personal physician and was being paid 1.8 million per year by the entertainment company AEG Live to take care of their investment: i.e. Michael Jackson.

I was thinking about this today in the shower (I get all my best thinking done in there) and it struck me that the pressure on Dr Murray must have been staggering;  -although it was considerably less than the pressure on Mr. Jackson.  Let's think about the some of the numbers:  50 concerts, 750,000 tickets sold for a (guesstimated) £56 billion, and then all the sales from the inevitable post-concert CDs and DVDs. Huge amounts of money  and livelihoods centered around the ability of a single person to get up there and perform his heart out again and again and again. For fifty concerts. Not to mention the planning, rehearsals,  travel and promotion time.

And it was Dr Murray's job to ensure MJ could do it.  AEG Live, the doctor's employer, paid him well: 150,000 per month plus expenses to keep MJ performing.  I can only imagine they had  him under a fair amount of pressure to perform this mission to their standards.  And they aren't medically trained.

Then, as we all know,  Michael Jackson died. Suddenly a lot of people were out of work or were out huge sums of money. Dr Conrad, for his part,  was immediately under a ginormous cloud of suspicion, which has never lifted and has had his name dragged through the mud in the media.

Over the next few months, AEG Live went into overdrive: They produced the memorial service. They announced the rehearsal concert footage and sold the movie rights for a large sum. They announced refunds for the tickets sold, but also said that fans could choose NOT to request a refund, but instead to request the original ticket sent to them. For the full price.

Genius.  Sell the tickets for full price without putting on a show.  Cash in on fan zeal and grief for the price of a piece of paper (plus P&P).  And NOBODY seems to have questioned or criticized this. There is no released data that I could find on how many fans took the refund and how many chose the world's most overpriced memento.  I would really love to know. Mind you, if only 10% of them chose to receive the tickets, that would have put AEG Live well into the black for their initial investment in MJ (estimated to be about $25 million US dollars -note most  other figures are in Sterling). Add in the insurance (£17 million), the  movie deal (£35 million) and the MJ exhibit at the O2 Area in London (£17.50 sterling for a standard adult ticket, £56.50 for the "VIP package"), and  they are turning quite a nice profit on the whole sorry business, with very little further outlay.

While in the meantime,  Dr Murray has lost his shirt, is unemployable, universally hated and facing criminal charges.  Hmmm.  In retrospect, maybe Dr Murray should have charged more for his services.  Because although he clearly wasn't calling the shots, he was the one left holding the (doctor's) bag.

Let his story serve as a warning to all budding doctortutes out there.

Doctortutes

Doctortutes. I made that word up, in case  you haven't guessed. It is not an amalgamation of  the words "doctor" and  "substitutes".  It is a combination of "Doctor" and  "prostitutes".  Doctortutes:   Doctors who pimp themselves out for money. 

Now it may be argued that pretty much all doctors; -except maybe the ones without borders, charge money for their services, so therefore all doctors could be termed doctortutes. Not so. Charging a fair or market price for a recognized service, and operating out of a regulated environmentt, such as a hospital or private practice,  as most doctors do, is accepted, legitimate business practice, not doctortution. But trawling the streets, classifieds or the Internet soliciting clients IS Doctortution, in my opinion.   And quite a few doctors are engaging in the practice (pun intended):  Some are lone operators with flash, smooth-talking  websites; -the Internet equivalent of acrylic platforms.

But most don't bother with these costly "cheap" tactics.  Most use pimps.

Yes. I said it: Internet doctor pimps.  Who needs science fiction when the real world is right here? 

Here is the story:

Just the other day, I was noodling around the Internet, researching something (probably a scam), minding my own business (sorta), when a pop-up window appeared on my screen (note to self: upgrade pop-up blocker).  The window advised me that there were twenty doctors standing by waiting to answer my medical question, and invited me to type it into the box.  So for laughs, thinking this will stump all 20 of them I typed in  "why do I have a seizure after I eat a meal?"

And then another box popped up, asking me how much I was willing to pay for this answer?  And the term "doctortute" hit me. I started to save screen shots and write this piece...

..and then my feckin computer crashed!  I lost all the screenshots and everything else.  Bummer.

My computer mysteriously came back from the dead a day and a half later after I decided not to finish my cliffhanger story about the beginning of 2010. Apologies to my regular readers, but I took that crash as a sign, even though I know some people may suggest that maybe it was the internet doctor pimps and the doctortutes who might have actually have been sending the "sign", as that is what I was working on at the time of the crash. I don't believe it.  Conspiracy theories  don't impress me any. (while superstition apparently does...  I'm Irish. What can I say?)

So last night I went back on the hunt for the doctortutes. I found some at justanswer.com, which seems to be one of the biggest pimp sites; supporting not only doctortutes, but also plumbertutes, mechanictutes, lawyertutes (OK that's nothing new) and various other "tutes" who will answer questions in exchange for your cold, hard credit card number. 

 
It's actually not a bad gig for a "tute", who I imagine is playing Solitaire or Farm Town in-between answering questions.

I didn't manage to find the popup that had found me the last time (I have no idea what I had been doing to deserve that!),  but on the main site there was a space to input my question, with 24 doctors online, apparently waiting eagerly to answer it. 

 

I couldn't resist. I knew it meant committing funds that I don't have (can you claim blogging expenses on your tax returns? Honestly, legitimate journalists have it so much easier than Sick Mothers), but I really had to see where this would lead. I figured that even if I didn't get a viable medical  answer  out of this (and I didn't expect one), I might at least get a good story for this blog, albeit at rather a high price. And I kind of liked the idea of exploiting a dotortute in order to write about him here -which is probably something I should address in therapy (I'll put it on the list).

 

So I went for it.

I typed in my question:  "Why do I have a seizure after I eat a meal?"  There was a followup question of what I had done about it, and I wrote "tried multiple AEDs, most of which made the problem worse".  And I hit "Enter"

Then we get to the nitty gritty: 

 

I was told "Dr. P "wants to answer my question" and I was asked how much I wanted to pay for this answer? I was given a few price options and  prompted to the middle one, which is  $38.  Would I pay $40 to have that question answered? Hell yes! I would pay a lot more than that.  Of course, I figured their definition of a satisfactory answer might differ from mine. However, the curiousity was killing me, so I continued on.

The site had said that I wasn't going to pay unless I was satisfied with the answer.  It then  advised me that it was going to take a "deposit"  against this answer. OK fair enough. Except the 'deposit' was the entire amount, placed into "my account"  Hmmm.... 

 

Well; in for a penny, in for 38 dollars: I continued on.  I had been  promised that someone called "Dr P" had been standing by to answer my question. Then Dr P was suddenly  gone..

 

...and  Doctor Ozz was looking at it.  I guess he passed it up too. Finally someone called "Mysticdoc" decided to take my question. That was worrying.  I wanted a real doctor, not a mystic!  Then I looked at his profile, and realized that "Mystic" was probably meant in terms of Mystic, Connecticut, as opposed to "Mystic Meg"

 

Thank Christ for that! Because if it was anyone connected to her, that would be downright scary...

 

Mysticdoc actually came back with some intelligent questions.

 

 Do you have any other medical condition?

What medication you are taking currently?

How do you know these are seizures?

Association with any particular food?

Any family history of seizures?

What tests have been done so far?

 

These questions I answered equally intelligently, with the honest facts as best I could remember and summarize  them (what tests have been done? OMG  that's a tall order to remember on the fly!)

There was some back-and-forth. The way the system works is this: the "tute"  doesn't get paid until the client accepts the answer and the client can ask follow-up questions related to the answer (but any questions on a "new" matter would be another chunk of change) . Therefore, the doctortute is incented to give a satisfactory answer. It would be highly unlikely that I would receive the two most popular answers I get from regular doctors, which are

a. "I can't help you"

b. "have you seen a psychiatrist?" (ie. it's all on your head)

Now, although I have argued against this in the past (here and here if you are curious),  these are both considered perfectly legitimate responses in traditional medical practice, where doctors are not actually required to help you and they still get paid for the visit and their time. However in doctortution, the compensation is directly tied to a satisfactory answer. The  "patient" (I have to use this term loosely here. Hey, Let's keep in theme and use the term "john" ) can  refuse to pay if an unsatisfactory answer is given.  Yes, the pimp still has your money, but the john can either go to another doctortute, or can start the process to have the money returned (and I am not sure how easy this process is, but it is there).  It is an interesting change to the dynamic, don't you think?  Much more customer oriented.

"Mysticdoc" gave me two good pieces of information I think I can use:

1. Sodium and calcium (both minerals with which I have had issues  in the past) play a huge role in seizure pathogenesis.

2. A  functional MRI (fMRI) would probably be a good test for me to see what is going on in my brain. I asked him if the MRSpect, the scan that #30 is planning to do as part of his study is the same thing, and he said no. The fMRI would be better. Hmmmm. 

Funny thing is this: #25 had mentioned performing a fMRI a few years ago, them he changed his mind because "nobody would read the paper". Fuck papers! This is about getting my life back, not about papers.

So I figured Mysticdoc had earned his $40 and I paid him (love that they leave space for a tip!) and allowed him to move on.  I declined to leave a deposit against any future questions I might want answered. No free money from me!

 

Then I thought some more: You know,  with the discounts many HMOs and other insurance companies negotiate, a regular visit doctor visit probably pays about the same as one of these internet consultations, but with much higher overhead (offices, staff, insurance). So for the doctors, doctortution is quite a good gig. They can hang out at home in their jammies, with one eye on the telly, picking and choosing which questions to take, getting paid directly for their time.  It's not a bad deal for them. And it answered the question I had when I first saw the site: Expecting people fresh out of med school, I had been surprised to see some of the doctors lurking sported lots of qualifications and years of experience.  I guess if you are a doctor, this  is a handy way to use your qualifications part-time to top up the old income: You know, pay the country club fees, alimony  and your daughter's speeding tickets.

Is doctortution a good thing?

I don't know. I think it is an interesting development in the healthcare system, and it satisfies our need for instant gratification. Of course, an Internet doctortute is no substitute for an actual physical examination or for someone's regular doctor and -needless to say- doctortutes can only advise, not diagnose or prescribe. But I think, as a fresh and unbiased set of eyes  on a case, doctortutes might have their (limited) use. I know my experience has spurred me to go find a new neurologist, a seizure expert this time.

I'm losing count, but I think this will be #31. Maybe that will be the charm?

It Never Rains...

...but lots of other shit starts happening. Or something like that.  I was never very good at expressions.

I know I left you guys with a clifferhanger last time (and a lot of shit I got for it, too!) but unfortunately, my computer has died, so I have very limited Internet access right now and so I cannot do the story justice. In fact, I am starting to wonder if I should tell that story at all, because evey time I try, something seems to happen. I am not superstitious, but it is getting a bit strange.

I know I still owe some people research on products. Whatever about a quick blog post: it is impossible to perform proper research on another computer, because all my bookmarks and searches and Secret Stuff is on my dead one.  So sorry guys, You will ned to wait some more.  In the meantime, don't take anything that isn't approved by your doctor and/or the FDA.

H1N1 Vaccines: Now The Truth Starts to Emerge.

I found this interview with Dr Wolfgang Wodarg, a medical doctor and epidemiologist quite fascinating and I just wanted to share it quickly before I go on to finish my "Hello 2010" story.

Fascinating stuff, huh?

I am offering no comment for now, mainly because my brain is too fried with -ironically enough- what I suspect might be flu!

Special thanks to my friend David who put me onto this article.

Still Spinning...

...my head, that is.

I haven't been around much for the past few weeks because a lot has been going on in my real life. I was preparing for Christmas. My sister and niece were coming over from Ireland to spend Christmas and the New Year with us. This was to be the first year we have had guests from abroad for these holidays in a long time.

"Was to be". Yep; that is what I said. I have no idea what the name of that tense is, but as you should guess by my use of it; things didn't go exactly to plan.  And plans were pretty loose to begin with.

It all went well at first. Despite the fact that we had a blizzard on the weekend before Christmas, the roads were clear enough by the time the rellie's flight came in. My niece had never seen so much snow on the ground at once, and she and Grace spent many happy hours playing in it. Joe even joined them on several occasions.

Christmas was relatively uneventful, in  good way: No seizures, no fights, food came out well and only one meltdown.

Then on Dec 30th some news came in that turned everything upside down.

I was going to tell that story today, but I have the flu or something and I am too darn tired.  It will have to wait. Also, I am trying to catch up at home after being away for 10 days.  I know I owe several people who e-mailed me information about potential scams, and I haven't forgotten. I just haven't been able to get to it yet. Please bear with me.

My Ganglion Cyst Story

It started with a cat.

I bet you weren't expecting that, were you?  But as far as we can figure, looking back and piecing together events to injuries: a big, mean cat named Whiskers may have started the whole series of events in motion, simply by being a cat.  And living in the wrong home.

Whiskers wasn't a bad cat. And he probably wasn't mean at all, because cats don't know concepts like "mean", " bad" or "fair". Cats know things like "food", "sex" and "territory".  And other cats.  And Whiskers was a big cat, white with black and gray patches; an un-neutered male cooped up in a little apartment halfway up a high-rise building in a very, very bad part of town. In that apartment also lived my aunt and her four small kids. Sometimes her husband showed up too, but is was mostly her and the four kids. And very often: me. Me in my teenaged & alienated-hating-everyone years used to visit her quite often, and she was good enough to house my sullen and disagreeable self in her already cramped place.

Whiskers wasn't built to be an apartment cat. He  was big, restless and very smart. He would have been ideal in a farm or somewhere where he could roam free and kill small things (and bigger things!). Although I imagine the farmer would have been be quite confused at his ability to use the toilet  (but maybe Whiskers would have forgotten that skill on a farm).  Whiskers would have thrived in the countryside. Instead, he was stuck in the wrong place;  a great hunter with no grounds and no prey; surrounded by squealing children with grabby hands. He seemed to spend his waking house oscillating between boredom and torment. 

Things continued in this vein for some time until I befriended the girl in the apartment next door to my aunt's.  Not that Whiskers had any problem with Jenny at all. He had a problem with Jenny's un-neutered (and considerably smaller) male Tom cat named Tiger. Whiskers and Tiger had lived in relative ignorance of each other's existance until I started spending a lot of time in Jenny's place. I guess Whiskers got a whiff of Tiger from me, and decided it was War.

He started trying to sneak into Jenny's apartment at any opportunity he could get.  Unfortunately, teenage girls are not great at following directions like "close the door"; and as we were in and out of each others' flats very frequently, opportunities presented themselves relatively often. Whiskers outweighed little Tiger by about 40%, so no-one -including Tiger- had any doubt how a match-up between them would end. Whenever Whiskers managed to get into Jenny's apartment I had to get him out as quickly as possible, because Jenny and her mother both turned into blubbering masses of panic whenever they found him stalking down the hallway of their apartment.

So Whiskers didn't like me very much. Especially when I tried to deter hm from his Tigerhunting missions. Once he wrapped whimself around my entire head, sinking in twenty claws and several teeth. Amazingly, he missed my face, but I was picking blood out of my hair for ages afterwards. And the One Time... The time that we finally learned to close the door: Whiskers opened his big mouth as wide as it would go and clamped down hard on my left hand.  And wouldn't let go. I had at least 5 puncture wounds on my hand, front and back, including one right below my thumb, just before hand meets wrist.

Ouch.

My hand swelled up like one of those surgical gloves when you blow it up. I had to explain many times in the ER: "No. It wasn't a dog, it was a cat.  ...Yes I know that looks too big to be a cat bite, but it was definitely a cat. I was right there and I know the difference.  ...I know the cat! His name is Whiskers..."  That usually convinced them because no-one in their right mind would name a dog "Whiskers".  Not that it suited the cat, either, but nevermindaboutthatnow. There were young children involved in his naming, and he had been much cuter as a foofy little kitten....

I was given several shots and the wound was cared for on an outpatient basis and my hand seemed to heal quite well. I still had several small scars (and still do) but there seemed to have been no real damage done (luckily) and I more or less forgot about the incident, which happened sometime in the early 80s; -in case you are curious about the timeline here.

Sometime in the late 80's I started noticing that my left hand hurt when I moved it a certain way, particularly if I extended it and put any load on it, like pushing open a door, or leaning on my hands on a table. I also noticed that if I flexed my wrist forward, this odd bump would appear, right in the place that hurt while doing those tasks I just mentioned.  I didn't think much of it. I just started using my right hand to push open doors.

It got worse.

By the early 90s it was bothering me most all the time, so I asked my then doctor (#1!) about it. Oh he said, that's a ganglion cyst. they are harmless. Smash it with a book and it will go away".

So I read up a bit about it, and sure enough the old-time remedy for a ganglion cyst was to hit it with the family bible or other heavy book. We chose the New Doubleday Cookbook as the heaviest book in the house at that time. I held my wrist extended over the kitchen counter, cyst bobbled out as much as it would go, while Himself thwacked my wrist with the book.

He didn't hit hard enough the first time. The second time, the cyst seemed to break, although, with the additional trauma from being thumped twice with the book, there was no relief to be had at all.  In fact, my wrist it hurt like a bastard for days afterwards.

After the bruising faded, It did seemed to get a bit better for awhile.

Except it came back a few years later. We were now in the mid-90s and I had changed doctors. My new doctor (#2, who is still my primary doctor) emphatically did not recommend a repeat episode of the book-smashing exercise. He suggested I see a surgeon. Then I got pregnant with Joe and everything was put on hold for awhile.

When Joe was about six months old I almost dropped him. I realized (too late) that my cysty wrist had weakened to the point where it couldn't support its share of a 20lb baby. Luckily I was standing near the couch at the time, so Joe fell down onto the seat cushion in a semi-controlled manner. It dawned on me  then that this wrist situation was getting no better and Joe was certainly not getting any lighter. So I decided to have a surgical evaluation.  It was late 1998.

I can't remember how the subject arose with my ob-gyn, but as he had recommended a good pediatrician, I guess I asked him to recommend a good surgeon.  He suggested a prominent hand surgeon, one who had operated on his own hand (not sure what for), and I went along to be evaluated.

They did a series of evaluation in the hand surgeon's office, which I have not seen before or since (and I have seen a different hand surgeon since) They tested my range of motion relative to my other hand, and my grip strength among other things. They recommended surgery.

The surgery was done on an outpatient basis in the hospital and went very well. The surgeon explained that my cyst had been like an iceberg. Only a tiny portion was visible when I extended my wrist. The rest of it was many lobed and had insinuated itself throughout the bones of my wrist, slowly forcing them apart. He said that had I done nothing, I would have eventually lost use of that hand.

He said that I also had a torn ligament in that wrist, and he thought the ligament had been the source of the problem. I asked him how I could have torn a ligament in my wrist? He shrugged. I asked him to point to the place where the ligament was torn. He pointed. It was right where one of Whisker's teeth had penetrated all those years earlier. There was (is) still a little scar there.

(Oh.)

I asked if he thought a cat bite many years earlier could have been the problem? He shrugged again. "It could have been. These things can grow very slowly. Although hitting it with that book certainly didn't help matters. I think that made it spread more."

(Oh.) (again.)

It took awhile for my hand to recover after the surgery. I had quite a lot of pain and I lost a lot of range of motion. I was recommended a very excellent hand physical therapist, who helped to recover post-surgery. It has now been 11 years since the cyst was removed and I have never had a lick of trouble with it since.

Of course, now I just said that and something will happen...

I told this story because I get a lot of hits from people looking for non-surgical solutions for ganglion cysts. I get a lot of hits for known scam ganglion "treatments". I hope some of the people who are looking for these treatments will find this story and know two things:

1. Most of the "treatment" products out there are scams. See below for a list of the ganglion cyst scams that I have previously outed here on OSM.
2. Surgery works. I know it isn't an option for everyone, but I do urge anyone with a painful ganglion cyst not to listen to quacks that say there is no treatment or to hit it with a book (don't!). Instead, seek evaulation by a good surgeon. There are more treatment options than ever available these days. The only regret I have surrounding my surgery is that I didn't have it sooner. I walked around with a painful problem for almost ten years until it became virtually untenable.   

Here is the list of scam products I have found for "Ganglion", The product name is linked back to their site. If you click on the company name,  you will be linked back to my article on the particular company selling that product and why it is bad. Please be aware that most of these companies advertise directly on WebMD and other legitimate medical sites. This does not make their products  legitimate. Contrary to what WebMD would like you to believe, they do not verify all of their advertisers, due to a loophole in their advertising policy. 

Ganglitab by Oslo Health Solutions (OHS)  -more on OHS, detailing the kind of garbage they put in some of their preparations here  and a little more info on them and the psychology of scamming here.

Anglitin by Berlin Homeo Products

Anglatax by Botanical Sources

Glenteton by Gordon's Herbal Research Center

Glanofax by Healing Plants Ltd

Ganglical by Solutions By Nature

Please don't buy any of the above products. They are all scams. None of them are based in the country they claim to be based. All of the addresses are mail forwarding services. If you receive any pills, they will arrive from Pakistan. I have received tons of feedback from readers who tell me this is so.

The other type of scam site is more sneaky.  These are the so-called "philanthropic" sites, the ones which want to "help" you find the "correct" cure for your "problem". These sites will list between two or four herbal treatments (all of which you will find listed above) in varying order, and will make an "independent recommendation" of which one they think is best.  Of course, the catch is that the "independent" evaluator actually owns all of the bogus cures in the first place, so they don't care which one you choose, as long as you choose one. They get the money regardless.

(And they think we are the ones who are sick?)

Here is a list of the scam evaluators, along with the link to my background info on them. 

ganglion-options.com run by The Society for the Promotion of Alternative Health (SPAH)

ganglionhelp.org run by Towards Natural Health.  A little more on them here.

If you have a ganglion cyst and are looking for a real solution: I politely suggest that you get off the Internet, pick up the phone and call your doctor.  

Random Yelping

I've been randomly yelping a lot recently.  Of course, my yelps are not actually random. They only appear so to the casual observer. Or anyone, really.  Because I can't predict when I am going to subluxate something in my hands, and the simplest movement can cause it to happen. Caught unawares, I yelp. Or utter some other cry of pain and distress; an "eep",  "yip" or sharp intake of breath. I try not to do it, but it is out before my thought processes have caught up with what has happened. And then I often have to try and placate a stranger in Target, Sears or BJs (but never Wal-Mart), who may have whipped around alarmed; assuring them I am OK, when it is probably quite plain that I am biting my the inside of my  lip in an attempt to hold back tears.

It is a weird thing, this: Most EDSer seem to have problems with fingers that dislocate or bend backwards. Wayward fingers can be helped by ring splints. My fingers are mostly fine however, the problem is deeper down, at the junction between the carpals and metacarpals

 

(good picture, eh? Here is the source)

One of them (at a time) just slips back for a split second and then goes in gain. The pain is very sharp and I yelp.   I can't predict when it might happen, so prevention is tricky. I take as many precautions as I can: I push carts with my forearms, I carry things on my shoulders where possible, I avoid lifting and maneuvering heavy things, where possible. But it can happen just washing a cup, opening a door or driving. Or typing!  I did it just now!

I am not sure if any of my EDS readers have this problem, and if so, what did they do that helped? I was wondering if hand strengthening exercises would help or exacerbate the problem?

The FTC Has Changed The Rules For Bloggers

We all thought bloggers aren't regulated, right?  That we cold say what we want on-line and -provided we didn't directly slander (or is it libel? I am never sure) someone who gave a shit, we were exempt from liability for speaking our minds about all sorts of stuff. The First Amendment and all that.  Yes there are copyright agreements and all that good stuff, but bloggers were never required to back up any statement they claimed as fact. I could say I ran into Elvis in the Public Library last month and no-one would bat an eye.

Well, as of December 1st, 2009 that has changed. The Federal Trade Commission (FTC) has introduced new rules surrounding endorsements and testimonials; and it includes bloggers and message boards as well as print, radio and the telly.  There are clauses that cover celebrity and expert endorsements, too. So now Valerie Bertinelli will have to tell you she was paid by Jenny Craig to lose that weight and keep it off. (What?  you didn't know?). Links to more information from the FTC is here; full Federal Register text here, and the FTC-produced videos explaining the new regulations are here.

So I'll have to watch me P's and Qs from now on.  Just kidding! Thankfully, the FTC doesn't care about foul or salty language, or OSM would be fucked entirely.  Not that I will be impacted much by the new regulations, anyway. I very rarely endorse anything. I once wrote favorably about a book, and I do carry links to books I recommend on this site (and there is no direct language that I could see in the FTC guidelines about hosting links -which I will get to later, because I found this point very interesting indeed). Other than books, most of my mission in life seems to be to find the flaws in things and highlight them in bitchy detail. And I am good at it!  So I can never claim to be an endorser of very much at all...

I find it interesting that I found out about this through Wellsphere, where I am a featured blogger -not that you would ever know that, because I never bothered to put the little picture thingy up here on OSM. Am I now in violation of some regulation?  Eek!  Is the FTC going to come and make an example of little old me?... (I digress).  Yeah, Wellsphere e-mailed me about these new rules. (I knew they would come in useful someday). I did search subsequently and the New York Times did have an article about it a few years ago, and there was some discussion about it mostly on marketing  and reviewers blogs and message boards. I think common-or-garden bloggers such as myself didn't have a clue about it. 

And I wonder how many consumers know?

I am going to jump on a lot of points in this post -and I apologize in advance if this piece seems a bit disjointed, but I am trying to cover as much as I can here, and there is a lot to cover.

This particular set of regulations was last revised in 1980; long before Cher was flogging shampoo, Chuck Norris was pushing excercise equipment, and Billy Mays became famous just for selling anything that wasn't nailed down. It was also long before the Internet took off commercially in the 1990s. The FTC had no real regulations for the WWW and it showed and was exploited for most of the past two decades. So the new rules are long overdue and very much welcome -by me, anyway and I think by anyone who strives towards honesty in their transactions with others.  This change will level the advertising and endorsement playing field.  Now, having said that, Please don't expect everything on the Internet to be true from hereon in. Because I think most scammers will just completely ignore these guidelines, like they ignore the FDA, morals and ethics; maybe thinking that their position overseas or hidden behind a series of front companies/sites will protect them. But at least now you know that you can more freely question 'truths' you find on the internet and report questionable practices to our Uncle Sam. 

Hurray!

But how does it all work?

One point I found mentioned  ...somewhere, is that internet reviewers will now be held to a stricter standard than print reviewers. For example The New York Times (let's say)  book, food or movie critics are not required to disclose in writing if they received the book, meal or movie ticket  they are reviewing for free. A blogger, on the other hand, would have to disclose if the book or product was provided for free and if there were any conditions attached to that gift (i.e. it is only free if you say nice things about it. Or you don't get more free stuff from us UNLESS you say nice stuff about this one (although the latter condition is usually implied rather than spoken, so how do you disclose that?)).   And then I wonder about the NYT critics and other gifts: If our print movie critic gets free popcorn to go with his free movie ticket, does he have to disclose the popcorn, even if the ticket is exempt?  And are there ever any conditions;  written, spoken or nudge-nudge-wink-winked between print reviewers and the people behind the products they review?  It all gets very interesting when you start to dissect this stuff.

And Of COURSE there is my particular bugbear: The whole question of scammers and scam advertising on legitimate sites. I have made my thoughts and feelings on this issue very clear in my open letter to the head of WebMD recently. For a laugh, I wandered around some sites today that I KNOW advertise scammers and did a quick search.  Yes, it is after December 1st, 2009, but most of them are still carrying adverts for both direct and indirect scams.  Nice.  But are they breaking the law?

Sites That Carry Scam Advertising

WebMD.com

About.com

Wrongdiagnosis.com

Amazon.com

Google.com

Yahoo.com

People.com

CNN.com (in fairness, I only found direct scammers here, in my very quick search. Is that better?)

ABC.com

CNBC.com (interesting! see below)

Time.com

Newsweek.com

NYtimes.com (almost all of the scams are there!)

Washingtonpost.com

huffingtonpost.com

Timesonline.com

Irishtimes.com

Foxnews.com

I should have just listed the sites that don't advertise scammers (that I recognized as such, anyway). It is much shorter:

Sites that DON'T Carry Scam Advertisements*

NBC.com

MSNBC.com

BBC.com

Fox.com (no public search available)

CBS.com 

WSJ.com

TheCW.com (no public search available)

I could probably go on and on, but I think I have made my point. Lots and lots of legitimate internet names carry links to scams on their sites. They are paid to do this.

Now I wonder if and how these sites are liable under the new FTC regulations?

The FTC guidelines didn't specifically state that carrying product links or advertisements on a website or blog constitutes endorsement of those products. However, that is the public perception.  Read the comments on my Gordon's piece. Many of the people who bought into those products did so because a search on a legitimate site took them to Gordon's Habitual Scamming Center (through that notorious loophole: "sponsored links"). In my opinion, the legitimate sites who carry these advertisements do and should bear some of the liability burden here.  However the regulations seem to skirt around this issue.  (and I wonder how much lobbying went into the wording thereof? Hmmm)

Another thing I wonder about, in light of the the fact that different rules apply to blogs and print media: The Huffington Post (HP) is technically a blog, whereas I figure NYTimes.com is technically part of the newspaper. Does this mean the NYT carries more exemptions, as mentioned above?  Will the HP bear more liability than NYTimes.com, say if both carried the exact same review worded the exact same way?  What about if both carry exactly the same links or endorsements? 

...And what about broadcast media such as CNN and ABC? Will their site content be regulated differently than their broadcast content? 

And do responsible advertisers such as NBC and MSNBC (but not CNBC.  ...why NBC, why???) get any kind fo kudos for acting properly without a government stick as inspiration?

It's all interesting stuff, right?

Another thought that occurred to me is this one: How the fuck do the FTC plan to enforce these new regulations?  Do they have scores of staff reviewing review sites, or are they relying on consumers to report dodgy reviews? (and if so, how will consumers know what is dodgy and who to tell?) You know, although I really really welcome these new regulations and think they are a very good thing: It all seems rather poorly thought out.

However, it's a lot better than nothing, which is what we had before.

*i.e. advertisements that were immediately recognized by me as scams. However, I don't claim to be the all-encompassing authority on this subject...

The Trouble With Elbows

(No this isn't another post about pointy little Grace sleeping in my bed)

When you have Ehlers Danlos Syndrome, you get very used to rearranging  your joints when they go out of whack. I know I am probably supposed to seek medical advice, or to at least note when I pop a joint, but it happens too damn often to bother. If I went to Urgent Care every time I needed an adjustment, they would charge me rent. And taxes.

...and anyway. I can do a far better job reseating my wonky joints than a second party, no matter how many years they spent in school. Because I can *feel* where all the bits are, and I know exactly how much force to use to get them seated correctly.

The only joints I have problems repositioning by myself are my elbows and lower back. Especially the elbows, which have only recently started causing me any problems (and I hope this does not mean knees are next!).

You see, to reseat a joint, I pull it out a ways, and then gently turn or jiggle it to get it aligned, then I let it go back in. It is hard for me to pull my elbow out for  a few reasons:

1. It is usually my right elbow and I am right-handed,
2. If I take my hand to pull the elbow apart, the wrist comes out instead.
3. If I hold my forearm to unseat the elbow, the shoulder usually comes out first.

 

So this means in order to fix my elbow the upper arm must be held while the forearm is pulled. I can't do this by myself (and don't think I haven't tried hooking my arm around the stair pillar, because I have).

This means I have to call for outside help; usually from Himself.

Outside help is fraught, especially when using a non-medical professional, because -no matter how much you tell them not to twist or shake, that seems to be a tall order. Or maybe I ask too much of my spouse. I think nothing of rearranging my bits at the skeletal level, because I have done it for as long as I can remember. I do it to the kids if they take out a finger or toe. (pull, fix "ow! ...oh"). Personally, I don't think it is a big deal to ask someone to put my elbow back in place. But Himself get nervous and makes such a meal out of the whole operation. you'd swear I'd asked him to do something difficult.

Like re-seat a knee.