Standardised diagnosis and Treatment

[Guest guest]

In response to " tomhackett " I could not agree more in how annoyingly

frustrating it is that there is not greater consensus about our conditions.

As a doctor myself I have repeatedly been pondering this question. I have

even found myself saying " but this does not make anatomical sense to me "

about unusual symptoms which I am experiencing!

The condition is ancient, the knowledge and understanding recent.MRI is

just about 30 years old and actually only used freely for the past 15

yrs.The link with EDS has had to wait for discovery till the genome

project. So they are still building up their knowledge in the medical

community. Some are ahead of others.Should say some are streets ahead.

Unfortunately in any difficult field there will also be a few mavericks and

plain goosechasers (I have just made up a new word?) and so us as patients

and the medical profession as their colleagues must all weigh up advice and

evidence.

I get validation from others like me on this site.

I am as informed as I can be. If many sources say the same thing AND if it

'feels right' intuitively I go for it.

And if " this could not cause your symptoms " I ask please then tell me what

does and what they are going to do for me.

I make sure to 'sack' any doctors who seem not to take any symptom on face

value as I do not like being disbelieved.

I keep my sense of humour as best I can.

I am on this amazing journey as a " wounded healer " in that I am learning

how to live with this thing which they taught me very little about in

medical school. Most intriguing

..

Trudi (EDS,hydrocephalus, syringomyelia,tethered cord surgery,

Chiari 0, spinal stenosis with early old age spine, autonomic dysfunction

and now Thoracic Outlet Syndrome).

[Guest guest]

Trudi,

I couldn't help but notice that you noted in your signature that you now had

thoracic outlet, I was originally misdiagnosed with thoracic outlet, carpel

tunne and cubital tunnel bilaterally.  It turns out my symptoms are from my CM

and SM.

 

I am one of those people with a small herniation and narrow but long syrinx but

I have debilitating symptoms. The symptoms I suffer from arm and hand pain,

numbness are the symptoms that aren't fixed by decompression surgery.

 

I think they have made great leaps and bounds in the diagnosis but there is no

standard treatment as each individual is different and the individual

expectations for outcomes of treatment are vastly different.  There isn't a

cure for CM and SM and I think that is a very hard statement for patients and

doctors alike to accept.  Treatments both surgical and non surgical will help

us function better and feel better but there is no going back to being the way

we were before symptoms started.

 

________________________________

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..

[Guest guest]

I have both thoracic outlet and chiari per dr b. fyi

Sharon Lang

> Trudi,

> I couldn't help but notice that you noted in your signature that you now had

thoracic outlet, I was originally misdiagnosed with thoracic outlet, carpel

tunne and cubital tunnel bilaterally. It turns out my symptoms are from my CM

and SM.

>

> I am one of those people with a small herniation and narrow but long syrinx

but I have debilitating symptoms. The symptoms I suffer from arm and hand pain,

numbness are the symptoms that aren't fixed by decompression surgery.

>

> I think they have made great leaps and bounds in the diagnosis but there is no

standard treatment as each individual is different and the individual

expectations for outcomes of treatment are vastly different. There isn't a cure

for CM and SM and I think that is a very hard statement for patients and doctors

alike to accept. Treatments both surgical and non surgical will help us

function better and feel better but there is no going back to being the way we

were before symptoms started.

>

>

>

> ________________________________

> C outl

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

> .

>

>