How do they define a small syrinx compared to a large syrinx

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Drs

Postby razzle51 » Fri Jun 08, 2007 2:07 pm

Sounds like you need a new Doctor Sparks42
How do you know that you have one if Dr. wont take an MRI ???

Maybe the dr. that did your Scolisios surgery could help you. Canada is lacking on Chiari NS
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!.

User avatar
razzle51
 
Posts: 3281
Joined: Wed May 16, 2007 2:25 pm

Postby mac » Fri Jun 08, 2007 6:30 pm

Sparks, welcome to the board. Dang, I'm sorry about your doctor situation. You definitely need to find a full time expert in SM! How frustrating and hurtful it is to hear that your pain is not caused by your condition! We are here to listen and to help. Let us know what we can do...if you'd like to post where you live, perhaps we can find a good specialist nearby?

yer friend mac
mac
 

Postby precious » Fri Jun 08, 2007 8:36 pm

Not sure if this will help much but my last MRI came in on Monday and My syrinx is from my t6-t12 is 8.22 cm across by 15cm long and they consider mine as a large central and my NL explained it to me that it depends on the measerment across your cord that determines if it is large or small? But I dont know, My NL also said he doesnt believe it could be causing all the pain i say that i am in either. I tend to believe that he is not to educated in this particular field. I believe no matter what size it can cause you pain and i hope you get feeling better ad can find a Dr to help you do that. Sparks I also believe you should try to find a dr that will run an MRI and keep track of your syrinx and make sure that it is not growing over time or yo may have bigger problems.
Precious
precious
 
Posts: 68
Joined: Wed May 16, 2007 10:53 pm
Location: Utah

Postby mac » Fri Jun 08, 2007 9:23 pm

Precious and others...I don't have SM, but I just want to say that I've been reading posts here for almost two years now and I can say without a single doubt that no matter the size of the syrinx, it can cause pain and very debilitating symptoms. I wish these doctors would read this board! They would learn so much. There have been many, many people posting here being told their SM does not cause their pain. That maddens me, because I know how much you all are hurting! If only these doctors could sit here and read the last two years worth of posts, they would surely come away with a whole different outlook. ggggrrr!

anyway, just wanted to add that in. Anyone who says a syrinx is not causing you pain and other symptoms is just....plain...wrong!

"what don't you tell us how you really feel" mac
mac
 

Postby prism » Sat Jun 09, 2007 8:32 am

small or large, can syrinx develop from degenerative disks or trauma from surgery? prism
prism
 

Postby sparks42 » Sat Jun 09, 2007 12:05 pm

I had scoliosis and before my surgery i had an mri and thats when they saw the syrinx. and they were like...oh look at that....a syrinx....anyways....on with the scolosis surgery....

i healed great and "require no more attention for it"

people think i exaggerate my headaches...like i'm a hypochondriac or something....and that all chiari/SM stuff is just "far out" and unlikely.

thats why i love all you guys....you understand its not in my head...its in my spinal chord.

thank you all for support
sparks42
 
Posts: 189
Joined: Fri Jun 08, 2007 1:17 pm
Location: London ON

Postby sparks42 » Sat Jun 09, 2007 12:12 pm

is it dangerous to have a syrinx and just...leave it? am i supposed to be getting it watched? am i supposed to take meds?

why would they just...find it.....realize it is quite large...size of a pencil.....and then say "anyways" and thats the last ive heard of that. all i know is from reading online...and we all know how the internet is...haha

am i supposed to be taking care of this somehow?
sparks42
 
Posts: 189
Joined: Fri Jun 08, 2007 1:17 pm
Location: London ON

Yes, it is dangerous

Postby Mary Alice » Sat Jun 09, 2007 2:45 pm

I don't want to sound like an alarmist, but yes it is dangerous. I am not only a patient with all of these diagnoses, but I am also an occupational therapist. (OK, does that sound to anyone else like, "I'm not only the president, I'm a member too." Sorry, I digress...)

Leaving a syrinx untreated can lead to bad things. I have personally treated at least five patients who presented like true spinal cord injury patients because of a syrinx. They had full blown symptoms below the level of their syrinx. For example, if their syrinx was at C-4, they presented like a C-4 quadraplegic spinal cord patient. Other patients presented more like incomplete spinal cord injuries. In other words they did not have complete lack of muscle use or complete sensory loss below the level of injury but did have significant loss.

Typically I saw these patients in a home health setting, so the history I got was from the patient and not a full medical chart. That means it was a little harder to know for sure how long the symptoms had been going on, how long a doctor had known about the syrinx and things like that. BUT, the bottom line is that YES, leaving a syrinx untreated can be a very bad thing.

I hope that doesn't sound too scary and doom and gloom, especially from a new person to this board, but I have seen it first hand!
Mary Alice, Texas, ACM1, and Cervical Syrinx (also primary immunodeficiency which is making my neurosurgeon a little nervous about surgery!)
Mary Alice
 

Postby Ryzing » Sat Jun 09, 2007 9:09 pm

Mary Alice,

When you say it's dangerous to leave a syrinx untreated, are you referring to someone not having surgery or someone not taking meds for symptoms? Many of us have been told by our NS or NL that we're not candidates for surgery for one reason or another, usually because the size of the syrinx isn't big enough to drain. That's interesting that you've treated so many patients with syringes, but sad at the same time to read how they progressed.

Diane

(p.s. I got your "Hair Club for Men joke! :lol: )
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
User avatar
Ryzing
 
Posts: 1316
Joined: Wed May 16, 2007 2:37 pm
Location: Berlin Heights, Ohio

Postby angie7 » Sat Jun 09, 2007 9:33 pm

It needs to be monitored, leaving it unmonitored is dangerous. Surgery isnt for everyone and neither are taking meds but you need a doctor that is willing to understand your syrinx, symptoms and manage it with MRI's, etc.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby Mary Alice » Sat Jun 09, 2007 10:33 pm

I am by no means the expert. I would definitely say that having the syrinx diagnosed and then monitored by a competent physician is key. From the therapist standpoint, it's hard to know how common it is for people to end up in the condition I see because I have no idea how many people are completely fine whether they have had surgery or not. Usually a therapist only sees the patients that have had a complication.

I do think that the patients I have seen had symptoms that either they tried to ignore and didn't tell a doctor about OR their doctor did not follow up the way they should have. Either way the syrinx was not followed the way it should have been, and therefore untreated for too long, so the symptoms were unchecked.

I think now that I am at the patient side of it, my thoughts can't help but wander to the people that I saw that were in such bad shape. Of course I know that they were the exception and not the rule, but I can't keep my brain from going there! I have also had a rapid change in symptoms and a rapid onset of new symptoms which makes it all that more scary for me.

My specialty for the last seven years has been high end wheelchairs, seating and mobility, and I have been in the medical field now for 21 years, so I have one of those sick, goofy senses of humor that lots of medical people develop (probably as a defense mechanism to deal with the heart breaking things you see all the time). It is just very strange to me to be in a situation that even remotely puts me where I might need to do my own evaluation for equipment. I'm still wrapping my mind around it all.
Mary Alice

P.S. Diane, I'm glad someone can follow my brain and get my goofy jokes!! :P
Mary Alice
 

Postby Ryzing » Sun Jun 10, 2007 2:19 pm

Yes, I agree, ladies. Considering how complex our condition is, I hope no one would find out they have it, then do nothing about it out of fear.


Diane

Mary Alice - got anymore sick, goofy jokes? :D
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
User avatar
Ryzing
 
Posts: 1316
Joined: Wed May 16, 2007 2:37 pm
Location: Berlin Heights, Ohio

syrinx

Postby razzle51 » Sun Jun 10, 2007 3:38 pm

Yes I agree it needs monitering and my NS has me come in every 3yrs for a MRI . I dont need a shunt so there is nothing to do for it .
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!.

User avatar
razzle51
 
Posts: 3281
Joined: Wed May 16, 2007 2:25 pm

wow

Postby ellijaygal » Sun Jun 10, 2007 6:31 pm

Razzle, you only have to have it checked every 3 years? Are you on any medication for the pain? What size is your syrinx? My symptoms started in January and progressed rapidly to excruciating pain last week. I had the numb fingers, they absolutely go white when cold, my arms are now weak to where I can't really hold them up anymore without quite a bit of effort, and the pain in my neck and upper back is horrible. By the end of my work day all I want to do is come home and lay down because my shoulders feel so exhausted from trying to hold my head up! I can't imagine what I am going to say to my NS tomorrow if she says we are just going to do MRI's every 3 years.
ellijaygal
 

Postby angie7 » Sun Jun 10, 2007 9:11 pm

Everyone is different. My doctors want me to have an MRI every year, I just had one a week ago, my first in over 2 years. I was pg with my twins and then raising them this past year has literally taken up ALL my time and energy.

You need to talk to your doctor about what you are comfortable with. If you want to a yearly MRI, then tell your doctor. Dont be afraid or intimadated (sp?) by your doctor. Remember, he works for you!
Last edited by angie7 on Sun Jun 10, 2007 9:13 pm, edited 1 time in total.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

PreviousNext

Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 10 guests

cron