questions CM1 & syringomelia

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questions CM1 & syringomelia

Postby prism » Sun Jun 03, 2007 9:29 am

Hi, it's my first time here. Have been dx. with the chiari 1 and syringomelia, although the syr. is a "working dx" so far.
I heard somewhere about avoiding abdominal and chest overuse when you have syrinx. Was wondering if any of you with syring. vomit if you use those muscles too much.
comments appreciated.
Also, has anyone ever heard of the use of hyperbaric chamber therapy for chiari and syr.??
Thirdly, I have trouble walking sometimes, mostly when I'm tired. How does adrenaline affect people with Chiari? Does it enable them to function while the surge is high?

So many questions.... prism :shock:

Postby mac » Sun Jun 03, 2007 2:56 pm

Hi prism and welcome aboard! Sorry about your diagnoses and your's rough, isn't it. I do not have cM or SM, but I do have grave neurological damage and I find it interesting that you brought up the effect of adrenaline on someone with CM or SM.

I have found that I have to not allow an increase or surge in adrenaline. I can't walk fast, or get excited or stressed or mad or really "up"....anything like that, where I'm getting my "life force" up, if you know what I mean, really causes me to have a big flare up, almost immediately, of symptoms, especially neuropathy.

I wonder if others also experience this.
Well, wanted to say hi and welcome, glad you found your way here.

Last edited by mac on Sun Jun 03, 2007 11:11 pm, edited 1 time in total.

Postby specialmomx2 » Sun Jun 03, 2007 7:24 pm

Hey Prism!

Glad you could make it over to this board. There are a lot of people here who know CM and SM and should be able to give you some answers.

There is also a list (somewhere) of SM and CM "dos"and "don'ts" which you may find useful. It includes stuff like no-one with CM should allow a chiropractor to work on their neck, and people with SM should not carry anything heavier than a gallon of milk.

I have not hard much about hypobaric chambers and CM or SM.

I am trying to learn about adrenal and metabolic function in people with EDS, because as I think in my case, there are definite connections. I don't have a chiari malformation and I am trying frantically to work out the cause of my syringomyelia before it gits me good.

"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

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Postby prism » Sun Jun 03, 2007 9:01 pm

hi, thanks for the welcome! Good to see a familiar "face" here too-
prism 8)

Postby Sandy » Sun Jun 03, 2007 9:36 pm

Hi Prism,

Welcome to ASAP. I have sm. And I, too, have difficulty walking at times too, mostly when I'm tired also.

As far as adrenaline goes, I've eliminated everything negative possible from my life to keep my stress low, it's just not worth it, believe me! Can't exercise or do activities that would cause more adrenaline flow, so that doesn't factor in for me.

And like Paula said, there are a lot of sm'ers and cm'ers here that can answer questions from personal experience, it's a great help!

The hyperbaric chamber sounds interesting...I wonder where you find those?

love and again, welcome,
sandy :D
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Postby prism » Mon Jun 04, 2007 8:30 am

Hi again, maybe I should clarify my question about adrenaline. :wink: If for example I get really angry or scared I find that I can function better for the duration of the surge of adrenaline. Yes, after exertion things are worse, but I'm talking about the kind of fight or flight surge.
Are chiropractic adjustments to the back (not neck) a no no too- if you have the possibility of syrinx?
Thanks. prism


Postby razzle51 » Mon Jun 04, 2007 9:53 am

Should a Chiari patient have neck manipulations done by a Chiropractor? Is it dangerous?

Despite the fact that some Chiari patients benefited from a trip to the Chiropractor, and many were not helped, a large number of patients were hurt by neck manipulations. When I say "large", I mean this: during the year 2002, we saw more than 700 Chiari patients in the office, and bad stories concerning Chiropractors were only second to bad stories after car accidents. In our experience, Chiropractors have been responsible (in many instances) for: causing the onset of symptoms in formerly asymptomatic Chiari subjects; worsening the pre-existent symptoms; causing postoperative complications.

Gentle manipulations of the neck can be performed by Physical Therapists, or by your partner (or by the milkman, if the partner is at work). The training of Chiropractors seems to lead them to perform manipulations which are too harsh and dangerous for Chiari patients, the cranio-cervical junction of whom is as fragile as Michael Jackson's nose. Be nice to your Turkeys.

Paolo Bolognese, M.D.
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby prism » Mon Jun 04, 2007 12:33 pm

Hello Dr.

Thank you for your advice, very well put by the way :!: (the milkman indeed :wink: )
However, my question was perhaps not clear - I understand that neck manipulations are bad when you have chiari. Are lower or mid-back ones as well? And do such manipulations affect syrinx or does it just depend on the particulars?

I've heard so many good things about you. Nice to "meet" you.
8) prism

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