What is the most similar condition and what can we learn from it ?

It is, i believe, interstitial cystitis (a.k.a bladder painful syndrome). I think we can learn from interstitial cystitis's researchs and treatments. Maybe the cause is different, but the results are the same, at least in a good % of time.
(i.e whisplash, rsi, anevrysm, clavicular fracture, 4 differents cause that induce the entity 'ntos').

Interstitial cystitis is a condition where the bladder wall is swelling and fibrosed, and there is pelvic muscle tensions and perineural fibrosis as well.

Treatments are interesting because tos seem at least very close to this condition, and there is more researchs because it is a more common condition.

http://www.tcs.org.tw/issue/Folder/1_2/1-2-33-36.pdf
http://en.wikipedia.org/wiki/Interstitial_cystitis

In short, i think the majority of cases of interstitial cystitis maybe very close to TOS, and because there is more researches on this, it is cool. So i share my findings below :

Primary finding that may be interesting/applicable for TOS :


"Rescue Instillation"

A rescue instillation is basically a combination of medications instilled directly into your bladder composed of Heparin, Bicarbanate of soda, and lidocaine.

http://www.ic-network.com/forum/showthread.php?t=32049

Published studies report a 90% effectiveness in reducing symptoms lasting from 4 hours to 2 weeks.

Successful downregulation of bladder sensory nerves with combination of heparin[...]
http://www.goldjournal.net/article/S...053-2/abstract


"Amitriptyline"

Patient overall satisfaction with the therapeutic result of amitriptyline was excellent or good in 46%;
May reduce neurogenic inflammation because used in fibromyalgia and other things like that.
Maybe good for our pain.
http://en.wikipedia.org/wiki/Amitriptyline#Pharmacology


"DMSO"

Symptomatic relief occurs in about two-thirds of cases. The mechanism of action and effects of DMSO on bladder tissue function are poorly understood.

Muscle Relaxation : DMSO applied topically to the skin of patients produces electromyographic evidence of muscle relaxation.

Doctors think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency.

http://www.jurology.com/article/S002...492-1/abstract

But some reservations : muscle contractions can occur as a side effects, sometimes, at least. Dose dependant.


"Acupuncture"

We know this one.


"Cystistat"

In facilitating wound healing, it is thought that it acts as a protective transport vehicle, taking peptide growth factors and other structural proteins to a site of action. It is then enzymatically degraded and active proteins are released to promote tissue repair.Sodium hyaluronate is being used intra-articularly to treat osteoarthritis.
I do not know this drug for the moment.


"palmitoylethanolamide (Normast)"

I have Interstitial Cystitis / BladderPAINsyndrome since 2004, diagnosed in 2008 (after 4 years suffering and lots of hospital visits). This year I discovered the compound Palmitoylethanolamide and I have really good results (70% less pain) without any side effects.

http://www.pudendalhope.info/forum/v...hp?f=25&t=2243


"Oral Pentosan polysulfate (oral 'derived' heparin)"

have a too short life, so we can forget. But we can notice that Heparin is here again.
http://www.nlm.nih.gov/medlineplus/d...s/a602007.html


"Soft tissues therapy, triggers therapies, pt, botulinum toxin A (Botox)"

We know these ones.


That's all... for the moment I hope there are not too much spelling mistakes, and that it was no too boring to read.

In conclusion, i think we have to learn from interstitial cystitis/bladder painful syndrome because of the close pathophysiology with TOS. Fortunaly, there is many data on interstitial cystitis/bladder painful syndrome unlike Ntos.

A litterature review may be a good idea. In hope it is right of course

For what i have read, the literature suggests that IC is the result of a multifactorial process that occurs after an initial insult (trauma/toxin or whatever), that result in (near?) the same things as TOS :
Mast cells induced-fibrosis of muscles and nerves, neurogenic-inflammatory pain that spread through flares-up with the help of cytokines, and often muscles tensions/spasms



http://www.medscape.com/viewarticle/564326_2
http://www.doctorellis.com/TOS_neurogenic.html

"We postulated that histamine contributes to bladder pathophysiology and thus induces pain only indirectly via an inflammatory cascade associated with tissue damage. " that we can call fibrosis.
http://www.plosone.org/article/info:...l.pone.0002096

More evidences :

Inflammatory Signaling Mechanisms of the CGRP Receptor
The immediate goal of this project is to characterize signaling pathways initiated by calcitonin gene-related peptide (CGRP) receptor activation that lead to increased production of pro-inflammatory compounds. CGRP and other neuropeptides released from sensory fibers contribute to neurogenic inflammatory pain by potently mediating vascular changes that are a hallmark of inflammation. The subsequent increase in vascular permeability leads to extravasation, emigration and activation of leukocytes at the site of injury. Activated leukocytes go on to release additional chemical mediators (e.g., prostanoids), further promoting the edema and hypersensitivity of inflammatory pain. Increasing evidence suggests that neurogenic inflammatory pain is a major component of IC pathophysiology.
http://www.researchcrossroads.org/in...ant_id=2152748


ROLE OF TNF IN BLADDER INFLAMMATION
"Interstitial cystitis (IC) is a debilitating, neurogenic bladder disease affecting primarily women with symptoms of pelvic pain, urinary frequency, and urgency. The etiology of IC is unknown, but chronic inflammation is associated with a large subset of patients. Mast cells are thought to play a central role in the bladder inflammation associated with IC, and we have recently shown that mast cells directly induce inflammatory responses in human urothetial cells that are mediated by tumor necrosis factor alpha (TNF)"
http://www.labome.org/grant/r01/dk/r...n-7983876.html

Very interesting

Thanks. Now i take rest because my hands hurt a little^^

There is of course some obvious structural differences between these two conditions, but the pathophysiology seem to be very close.

80% of females, 20% of males affected.

i have a silly question, would neurogenic inflammation or ic show up in any blood tests somehow

i don't think, maybe thermography in some cases.

I add HBO in the treatments.

http://www.ncbi.nlm.nih.gov/pubmed/21609485

i actually went in one of those a few times and didnt notice a difference

maybe after 12 months, who knows

you really need to go each day for at least 20 days since it have cumulative effects, like heparin.

60 minutes/day × 5 days/week for 2 or 4 weeks

:

Seven of the 11 patients demonstrated persistent improvement in symptoms during the 12 months after HBO treatment.

other studies : http://www.ncbi.nlm.nih.gov/pubmed/15183555
http://www.ncbi.nlm.nih.gov/pubmed/16952654


I add " hyaluronic acid " eventually. Same familiy as heparin...

Clearly it's only for research^^ don't try it at home^^

http://www.ncbi.nlm.nih.gov/pubmed/21397161
http://en.wikipedia.org/wiki/Hyaluronan

seem interesting :

http://en.wikipedia.org/wiki/Hyaluro...repair_process