A syrinx that just disappeared?

[Braintoobig]

It was always a mystery to me why this chiari malformation never came up in a past MRI of my c-spine I had done 6 years ago so I decided to request the radiology report. I had the MRI done for neck pain and arm/hand numbness. My doctor told me it was normal and told me to go to physical therapy (which I never did). So I get this radiology report in the mail today and I had syrinx!!! They didn't even tell me about it! But it says nothing about a chiari malformation.
So I'm so lost. Apparently a syrinx can disappear?? Cause mine did! Either that or it was missed on my last Cspine MRI I had a month ago?
And did I not have a chiari malformation back then? Like my cerebellum just decided to come falling out for some reason in the last 5 years?

I can't believe I was never told about this especially since I was symptomatic!! I can't help but feel upset about it even though it apparently disappeared on its own. I'm glad it didn't get worse but what if it did? I would have just ignored it thinking I was fine since my MRI was fine! UGH!

So seriously, these things just disappear? And I didn't have a chiari malformation back then but do now? Does this indicate anything about how my herniation is progressing?

[Roy902]

I am just so lucky after reading these stories about people not being told the truth for years.  That from the start of my situation that once I started having things happen that it only took a couple of months for the diagnosis to happen.  

Then I went to the internet and found out as much as I could; found this site and  several others along the way and meet others with the challenges that we all face here.  Sent all my stuff to Dr. Oro for a second oponion just to be sure of things as far as treatment - just still to ensure that I was recieveing great treatment.  

The big GUY is just watching over me all the time...

[Braintoobig]

Surprise suprise to me! You'll never guess what randomly came in the mail today! My old neck MRI FILMS! I thought I had to pay for them and wait for the billing process to go through but they randomly showed up today! LOL

So I whipped them out and there it was plain as day, the chiari. They totally missed it. I did, however, see the syrinx and I really don't think it's artifactual. It's very small but you can see it clear as day. They sent me old school films and the marking the radiologist made to indicate the syrinx is written right on the film.

But the good news (in my opinion) is that the chiari didn't spontaneously happen in the last 5 years. The herniation looks exactly the same size and shape as my newest images. I'm going to take them with me to the docs to be sure but so far that's what I'm seeing.

I just can't help but be really annoyed that this was missed. I really would have liked to have known I had this so I could have taken better care of myself and stopped acting like such a dare devil.

UGh, selma you said it best. I'm growing to not be surprised by incompetence anymore. I feel like if I don't obtain my records and resuts myself, I'll never get proper treatment.

[selmaS]

  Well it is possible it was what they call an artifact....not really a syrinx...a shadow like image...so...unless it is mentioned on an old report....or until u find it on one ...try to relax...it will not change the facts....

I found old records that no one ever mentioned tethered cord to me, but there it was right on the record....

the best thing with health issues...never be surprised by incompetence....there r too many drs that did not get proper training on chiari...so there is no way we can all go to a dr and get proper care.So u have to keep pushing until u find the right dr for u !!


Hang in there : )

  "selma"

[Braintoobig]

HI Selma!

I have not had surgery for my chiari. I'm not sure my symptoms are bad enough yet...

I'm really wondering if the d*mn thing is still there, or was it never there in the first place?

I guess I wont know until I get someone to compare the two MRI's. I'm also shocked that there was no mention of a chiari on my neck MRI 5 years ago. That's scary to me.

[selmaS]

  Hi...may I ask, u didn't have chiari surgery yet have u?....sorry I can not remember...but, a syrinx can go away if the CSF blockage is removed and flow restored....that said....if u did not have surgery, I am not sure how ur flow would have changed to allow the syrinx to shrink.

And the other issue is was it missed?Could it still be there?

  "selma"

[Roy902]

My initial finding was at .05 CM back in 2005 last spring it was 3 CM we have chatted before friend of mine...  The last week I am getting a lot of pressure on the left side of my head; not like a head ache per day.  It is a sharp cutting pain; going on in the side of my head and down my neck.  I am also getting pain going down the back of my leg when I was going up the stairs last night.  IT almost feels like I pulled my calf muscle some how???  I was carrying nothing.   Sleeping is a sport; I have turned to my painting again for temporary
relief.  Not that it is a bad thing;  I really enjoy it and things are just really not fun - the weather has been 30 below wind chills all last week.

Sorry I am ranting now...

Roy  

[pamk5]

The most recent neurologist that I saw seemed to think that I may have acquired rather than congenital CM.  I doubt it since I have an aunt who also has CM.  My symptoms started after a car accident last summer.  I dont have an old MRI for comparison purposes.  So if the trauma caused a CSF leak then it could be acquired CM (low pressure causing the herniation).  Headaches that are worse lying  and better when you sit up are sometimes an indication of low pressure.  Worth at least sharing this info with the Neuro.  

Make sure that you find an NS that is a specialist with CM.  Trust me there is a difference.  

Good luck to you!

Pam

[Braintoobig]

Thank you everyone. I'm wondering where the heck the syrinx went?? They said it was small on the first MRI years ago. A few millimeters wide and 5mm in length.

I have had head trauma. I've had 4 concussions in my  life and last year I was assaulted (long horrible story) and that's when all of my really bad symptoms started. Incidentally I also started birth control around that time and my neurologist wants to see if stopping the birth control will help it. I didn't tell him about the assult but it's looking like I need to :(

I guess my best bet is to get those images of the first MRI to make sure it was read properly, then talk to the neurologist and go from there. Eventually I'll head to a neurosurgeon once all of the other scary neurologist stuff settles down.


Thanks for the replies everyone.

[pamk5]

As far as Chiari goes I believe you can have acquired Chiari from a leak or tethered cord. Congenital chiari is usually there from birth or puberty.  Have you had a trauma?  I think you are doing the right thing by getting all your results and sending them to a specialist to review them.  I have not heard of a syrinx disappearing unless you had decompression surgery.  Which is a big reason to have surgery if you have a syrinx, it will keep it from progressing and make it shrink in alot of cases.  

I would be angry too!  I agree this is total BS that these doctors choose not to give us results of what they consider "no big deal".  It is truly scary that we have to be so on guard with our health.  Best of luck to you as you gather all this information.  

Pam

[Spaceystac]

OMG I would be so mad, your primary care! I am so sorry, that is BS.

You can not have it, then have it. Lets say you were in a motor vehicle accident after the first MRI, that can cause the herniation. Maybe you were borderline, then something made it worse. Actually, I think age has something to do with it as well sometimes your skull quits growing early (around age 25 in females) and the brain continues, causing it to take up more room than you have. The NS I saw described it as having size 10 brain and a size 8 skull. If you have size 10 feet an squeeze it into a size 8, what happens?

[Braintoobig]

Actually the radiologist reported it, it was my primary care doctor that chose not to tell me about it. She saw this report and made the decision to lie to me and say it was normal.

But I agree with you. This crap is getting old.

[Braintoobig]

Thanks for the reply. It has been hard to obtain the images because I'm in Maryland and the hospital I used to go to is in California. So I have to do everything by mail which takes time to process, bill, and copy.  I'll get them though because now I don't know what to believe anymore.

This is all just so weird! I complain of symptoms, they MRIs show stuff, and then they turn around and lie to you and say there's nothing wrong?

Also, can someone not show a chiari and then 5 years later suddenly show one? I was almost certain my 2005 MRI would have showed it. I guess I'm just worried because if this thing has herniated 5mm in 5 years, is it just going to keep going?

[Spaceystac]

This is the most frusterating thing I have experienced in all of this as well, I feel like the radiology field needs to totally be re-invented. The radiologists have their opinion in this and i dont feel they should have any right to opinions. They should state what is there and do their job, but unfortunitally they look to see it there is anything there that should be causing your symptoms and if they feel your syrinx was not the cause then they choose not to note it. it is total BS an I am here for you, and I am glad you are smart and found some support!

[Spaceystac]

Oh honey, I am sorry you too are going through this.  You need to get all your MRI's on disk in you hands and look at all of them. The radiologist people are just as undependable as the doctors can be so you need to look for your self. I doubt it disappeared, the reports are never right it seems anymore, and that is all the doctors look at.