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Postby trinandkatsmom » Fri May 18, 2007 10:44 pm

Hi everyone! I was recently diagnosed with CM and SM. I've already incountered a number of not so bright doctors in my short 5 months of knowing. I just met with a dr who told me that he would place the shunt in only after I starting having my legs give out and fall. Does this sound normal? I've read that once you have a symptomatic syrinx surgery is recommended. I also read that shunts are like bandaids on gunshot wounds because you're not fixing the CM. Any input on these ideas would be greatly appreciated!

I've made an appointment with a new dr who i see in the next week at john hopkins, but I wanted so experienced patients input first. It seems like with the research I've done I know far more than my 2 NS i've already seen.
trinandkatsmom
 

Postby cash71 » Fri May 18, 2007 10:50 pm

Good for you and welcome to the board. You are doing a lot of things right! You are getting educated and standing up for yourself to get proper care and answers. Unfortunately we all have to do this with this dx b/c of its rarity.

I have had the same experience with ns and so have countless others. You are almost guaranteed the same tx until you seek out an expert in the care of cm./sm and going to John Hopkins will not ensure you an expert opinion. There is an list on the asap homepage under medical advisory panel or if you post which city you are near someone may point you in the direction of someone they have had a good experience with.

Good luck and again welcome to the board

:D Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby trinandkatsmom » Fri May 18, 2007 10:54 pm

i am in elkton, MD, i'll take any advice one a doctor! I did get the name of the doc I'm going to a john hopkins from a website about CM, it was a patient recommended dr, i just can't remember the name of the site i've been to so many lately.
trinandkatsmom
 

Postby donbr » Fri May 18, 2007 10:55 pm

Hi
You said you have both cm and sm. Normally from everything i read here is if you have cm and sm if surgery is recomended they do a decompression, mt understanding is that shunts are used for high intercranial pressure that is or cannot be controlled through conventinal means. I might be wrong on this but im sure someone will offer a bit more info.
decompression if recomended or done will or should rerstore the csf flow back to normal and theoretically the syrinx will colapse.
Take care
Don
donbr
 

Postby trinandkatsmom » Fri May 18, 2007 10:58 pm

thanks for the posts, didn't think it would be that quick!
he wants the shunt put in the sryinx, at least thats' what i understood, he said it would drain it, it didn't make sense to me at all and i don't want to wait for momentary paralasis, which is what my legs giving out on me sounds like.
trinandkatsmom
 

Postby trinandkatsmom » Fri May 18, 2007 11:07 pm

that website i was at was the world arnold chiari malformation association at http://www.pressenter.com/~wacma/info.htm has anyone else got a dr from that list?
trinandkatsmom
 

Postby donbr » Fri May 18, 2007 11:14 pm

The cause of the syrinx is more than likely the acm.
to treat a syrinx you find the cause of the syrinx which is probably the cm and you treat the cause which is decompression assuming the cause is in fact the acm If the cause of the syrinx is not addressed then it doesnt matter really what is done the syrinx wont colapse. Cash gave some good advise, find an expert with asm/sm experience, welcome to the board and i am sure you will find people here very informed and willing to help when they can.
Take care
Don
donbr
 

Postby donbr » Fri May 18, 2007 11:17 pm

The Drs there are Drs that at least one person has had a good experience with but does not mean they are experts or does it mean they have a lot of experience in acm/sm
Don
donbr
 

Postby mac » Sat May 19, 2007 12:03 am

Get several opinions before shunting a syrinx! We've seen a few come thru here who have had it done and it has not always been successful. In fact, shunting a syrinx seems to be must less common now. Don is right on in all of his advice: if you have cm and sm, then you take care of the CM to help the syrinx stop getting bigger. You need an expert. You are in MD...if you can, go to NY to the The Chiari Institute.

welcome to the board
mac
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