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November 20, 2008

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yanub

Do you have ring splints already, and this is happening? If you don't, please get them ASAP.

I know what you mean about doctors not really wanting to hear your theories about why X or Y are happening, yet not having any useful ones themselves. What they want to deal with is stuff they know about, and they will doggedly ignore complaints about pain or muscle weakness or spasms in preference to doling out pills for cholesterol and exercise advice that completely fails to take into account the whole meaning of mobility impaired. Then look at you like you just flew in from Mars when you remind them how that ain't gonna work.

But anyways, the finger splints....I couldn't function without 'em. I wish there were splints and braces that worked as well for other parts of the body.

elizabeth

To say that sucks would be um, an understatement. I know that like everything else I suppose I would adjust so I suppose you would too, but I don't want you to, don't want you to lose the use of your hands and I do want you to take a big mallet because I too am tired of the "I don't know." which when said after, "And why are you treating it." tends to be both defensive and threatening like, "How DARE you, I went to school a lot of years!" - to which I respond - "LOSING USE OF HANDS, MORON!"

Drake

Nods tentatively, purses lips and says "I don't know" ;D

To prove your point, unless you have already read it on a reply to Beth's post... This is a response I got from a joint specialist...

"this sounds like a very complicated situation. my recommendation is a good orthopaedist in an academic medical center; find out the closest university and seek out an orthopaedic doctor at that place. your situation is quite unique, and not within the expertise of private, community orthopaedic doctors.

dr. *******"

Now ask them for a referral for a specialist and they dodge it with some odd response, suggesting they don't want to write you a referral ... because they don't know what to ask the specialist to begin with ... Well, hows about starting with the questions you can't answer, moron.

I hear your frustration...and I suffer from it every single visit to my doctor... The usual response I get is also, "Most probably due to the Marfan's" ... great, I could have told you that, tell me what to do about it God Damn! Marfan's doesn't cause my knee to buckle out whenever I step off the curb or side-step someone on the pavement. Yes, Marfan's causes the underlying mechanism to fail, but what the heck should I do about it!

Ugh...it's like you said and like even a specialist said ... our problems is beyond private community doctors...

Being a programmer I find that silly... As a programmer you think intuitively and solve problems you have never been faced with by using your logic and not by grabbing for your medical reference guide and then just shrugging your shoulders when you don't find the problem in the index.

Ugh ... it makes me sick... How many mal-practice suits has occurred due to this form of theoretical dependency ...

Rob

As a fellow trouble shooter who gets frustrated when solutions can't be found for problems, (and as a friend who truly despises the fact you are suffering like this) I can definitely relate (in that small way). Have you tried any non-traditional methods for stopping the progress of this horrible affliction? Like acupuncture, Chinese medicine, and acupressure?

I am not sure how you feel about eastern medicine or if you have already tried it, or if this is a naieve post, but I would say if you are in danger of losing the use of your hands I would recommend pulling out all the stops, throwing caution to the wind, giving it "the finger" (Irish or American) while you still can, and trying it out.

One Sick Mother

Yanub,

Ring splints: no. My hands aren't actually that hypermobile and we are not sure it stems from there. The one theory offered: Possible cubital tunnel syndrome (this is like carpal tunnel but in the elbows, not wrists) but no surgeon wants to touch it because of the EDS. I have been told to sleep with me elbows straight...

I don't know if it is cubital tunnel or not. I don't seem to fit all the symptoms. Frankly, I have not pushed this issue as hard as I could (should) have because to me, it is not as urgent as the other systemic stuff. i.e. it doesn't stop me in my tracks.


Elizabeth,

I wrote a post once about adjusting and if it was such a good idea. http://onesickmother.typepad.com/my_weblog/2007/12/through-the-loo.html.

I should take me own advice.


Drake,

Exactly! Even if the doc can't say why, or if the why is something like Marfans or EDS there is still the second half of the equation: "What can you do about it?". Which is the most important part, actually. Sometimes "why?" doesn't matter, but helping really does.


Rob,

Have you been talking to Nancy? She has been threatening to drag me into Chinatown for months.

-OSM

Rob

I have not but I will help her drag you!!! I have read about (and spoken to) people with chronic pain (20+ years of it) and during all that time doctors did not help them, save to give pain pills. They go to an acupuncturist for a few weeks and bang! Pain GONE! Sometimes within the first few treatments.

Go.

Now.

yanub

Well, surgery....yeah, I don't think it is good to go there with EDS. It just leads to more surgery.

So they told you to sleep with your elbows straight? Did they offer you any mechanism to do this? How is your doctor at sleeping with his elbows straight? Why, why, why, do they suggest such stupid things?

Sorry. I don't really expect you to know the answer to that last one especially.

My hands are pretty hypermobile, but not as much as some other people's. But you know, if you break your spine at C-6 and someone else at C-4, both of you still need wheelchairs. These hand-shaped bags of bones at the ends of my arms have to be reminded what directions they are supposed to move in, because they keep trying to make a break for sideways. Anyway, the splints are relatively inexpensive devices, without any lasting consequences should they fail to help. Can't say that about surgery. And if they really think the problem is the elbows, well, there are splints and braces for elbows, too. They aren't exactly wonderful, but they will restrict your movement, and that can be handy.

One Sick Mother

Yanub,

Funny, I had surgery on my left wrist before I had ever heard of EDS -had a ganglion cyst removed and a torn ligament repaired. (we think it was damaged by a cat bite -not kidding) Anyhoo, that wrist is in better shape now than the right one. I am right-handed, so who knows?

Either way, I would definitely shy from surgery.

If I ever get back into PT (I was fired for having too many seizures) I will look into elbow and ring splints.

OSM

Lisa Moon

Sorry for the late comment (aak, computer problems!).
I very much feel for your frustration with doctors! I experienced that myself when looking for answers as to why my supposedly minor Achilles tendon injury never seemed to get better and those weird shooting pains were getting _worse_. I'd say things like "It feels like my foot is broken here and I feel like I'm being electrocuted along here!" and they'd often look at me like I was, um, nuts (clinical term).

They would move my foot around, say the range of motion was pretty good and, since it looked pretty 'normal' then it must be OK. Um, feeling like you're being electrocuted is neither normal or OK!

But yes, they DO seem to want to find their own answers or, more often, not do much of anything and send you along, since they can't solve your mystery in 3.4 minutes or less.

One of the best pieces of advice I was given was by my new GP about holding off on seeing an orthopedist or podiatrist, with the concern that they might be more likely to recommend surgery and that often people with foot surgery do NOT find improvement. In my case, it surely would have worsened what I now have diagnosed as a nerve disorder. Very glad I didn't look at surgery back then!

I'm glad you're not one to accept those docs and their lame 'Well, that's weird!' as being the final answer; yeah, it may be unusual but if their hands were being 'weird' I'm sure they'd be knocking on the door of every specialist in the state - and neighbouring ones, too.

I think doctors take classes in being suspicious and writing prescriptions only, because they sure seem to spend no time on anything else!

Pari

...This is only the second post of yours that I've read, so sorry if you mentioned it already...

Are your ligaments tight over your knuckle or do they hang loose?

physical therapy and massage works wonders if they're tight and pulling - "off track" - so to speak.

As for turning cold or blue, I can usually move my shoulders or hips around for awhile and it will help to re-establish the bloodflow to the interrupted area. Could that help you too?

Count me as another strong supporter of the time-tested Eastern medicine world.

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