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Chiari Malformation Community
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2120085 tn?1344765910

Not feeling any better after seeing neuro doc...

So today was the first time I got to talk to the neuro who ordered my MRI since diagnosis..

My herniation is 20mm ( which is freaking me out at how big that actually is....) can the size of the brain falling out kill you?

He said I have no syrinx but I am debating on asking for a full spinal MRI
He asked about my headaches and other symptoms if worsened and can I cope?
Basically offered the same 2 options as all chiarians... wait and see or surgery. I am going to wait and see.

I cant help but freak out over how much of my brain is leaking out,  even with reassurance from him that it wont kill me.. I cant stop the anxiety.

My symptoms are mainly
-Double vision ( constant ) / floaters / visual snow
-Migraines ( every few months I get a migraine with aura also ) feels like I am having a stroke when this happens.. one side goes numb
-Headpain when coughing/sneezing/straining
-I am going to say insomnia because I always have a hard time falling asleep unless I am sooooo tired
-Some times I wake up gasping for air like sleep aponea
-I cant think of any others atm... so probs brain fog also haha

Over the last 5-6 years I had 3 head scans, 1 CT 2 MRI, the most recent MRI was finally diagnosed, and he requested the other two from years ago and they do show the herniation ( still same size ) and was confused as to how none of the other doctors noticed..

I feel so saddened by the fact that this will be there for the rest of my life, and I will always worry about turning head too fast and my  heart wtill stop beating cause the huge herniation has crushed my brainstem..

*sigh* Really thought after speaking to him personally I would feel better but 2 cm of brain is in the way !!!
31 Responses
1903798 tn?1333905288
You do need a full MRI to see if you have a syrinx and you also need a cine scan done to see of you have a csf blockage.  These 2 things would make surgery necessary to prevent further damage.  With your herniage and symptoms I would highly urge get you see a true chiari specialist.  Hugs and prayers
1903798 tn?1333905288
And syrinx could be lower where he did not scan.  90 % of chiari patients have sleep diorders and since you knw you have symptoms you hold have a sleep study too.  May I ask if your NS is a chiari specialist?  Typically they are much more thorough even if he outcome is you are not having surgery.
1903798 tn?1333905288
know and should darn iPad
2120085 tn?1344765910
He isnt a specialist, but been a neuro 30+ years and says he has been researching chiari for a number of years now. There is one at that hospital I am thinking of contacting... he is a surgeon.

This Dr said I wouldnt have needed a CINE unless they were contemplating surgery?
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I concur with all that Mel posted above...u do need the CINE MRI...it is not the  length of the herniation but the width and if it is causing a CSF obstruction...and the beat way I can explain that is like this...

Imagine the area of ur skill like a funnel...the cerebral tonsils like shoe string licorice...if u hang  a piece of the licorice down thru the funnel it will not obstruct flow of a liquid...no matter how long it is, how ever, if it is wider, or even shorter like an upside down gumdrop in that opening, it will cork it up...

So do try and relax, it is not how long the herniation is, but what else u have going on....so, a CINE MRI is next along with MRI's of the rest of ur spine to rule out a syrinx as they can form in the thoracic and lumbar spine too....and u can also have tethered cord in the lumbar spine...and disk issues that can cause issues so it is best to look at the entire spine.

Waking and gasping for air is something u need to address asap...this may be sleep apnea and u need to have a sleep study done.

  Also, get checked for PTC, and ehlers-danlos....as these related issues can affect how u feel and heal if u do have surgery.
2120085 tn?1344765910
Yea I asked him...
What I am going to do is ask my GP after explaining to him situation and why these scans need to be done, and ask for referral again
620923 tn?1452915648
COMMUNITY LEADER


Since u r in the UK....u will need to use the Ann Conroy Trust list of Drs...and I really do not know much about the Drs on that list....so do research them....

If u need help locating this list , let me know : )
1903798 tn?1333905288
Cine study is a huge piece in knowing if you NEED surgery...I strongly disagree with him saying tatoo don't need it unless you are having surgery....it tells you if your symptoms are caused by a blockage which in that case would get worse.  As it progresses it can cause syrinx and other irreversible damage.  That is like saying well we don't need to see if your appendix is bad unless you want it out.  I would see the specialst:)
2120085 tn?1344765910
The thing is I really do not want surgery... especially brain, its so major, I had enough surgeries as a kid for several things and I hate it, I hate not being in control of my own conciousness... the risks involved scare me
Such a hard choice :(
620923 tn?1452915648
COMMUNITY LEADER

  Sometimes we really do not have a choice, as not having surgery is just as risky if not more so then having surgery,....this condition depending on how progressed it is , can do far more damage if left untreated.

None of us wanted this surgery, but knew we had to have it....and it is getting to that point, once u r there u will make the right decision for u, right now u r just scared and overwhelmed...which is also typical, we all have BTDT too.

  Know that u r not alone in how u feel, pain wise and having surgery....once u feel confident in ur Dr that will change too....sometimes u just do not have the right dr to guide u thru this.
2120085 tn?1344765910
What is BTDT? =D that is a new one to me
620923 tn?1452915648
COMMUNITY LEADER

  Sorry BTDT = been there done that....lol...
2120085 tn?1344765910
Ahhh lol!

It is possible to go on and cope with out surgery though isnt it? IF no syrinx?
620923 tn?1452915648
COMMUNITY LEADER

  Well in my case I did not have a syrinx, but I was having drop attacks...and one left me with injuries that required 2 surgeries ....and I could not deal with that....so, it is a individual thing...u need to look at all that is going on and how ur chiari is affecting ur overall health.
2120085 tn?1344765910
To be honest Selma, its death I am afraid of, not the pains / health etc
Always have feared it, and now I have something that can potentially cause life ending things.
Its scary to go about thinking those.... it use to just be cars then I became a hypocondriac now storied keep popping up about chiari related passings... and now every random pain or feeling I feel i think " thats it, I am done for"
How to make that stop? :(
I know the whole, everyone dies or I could be hit by a bus tales
but I am only in my early 20's! I dont want to go til I am old and decrepit ..
Really finding it hard to picture my future anymore..
620923 tn?1452915648
COMMUNITY LEADER

  Many times these deaths r related to chiari and were not dx'd b4 hand....some had additional issues not found until after surgery, and y I am, always saying get this and that ruled out....as it can affect how u feel and heal....

But, u must know, doing nothing with this condition can also lead to death, a few were a result of just taking far too long to get dx'd then treated....if they had been dx and treated sooner then may still be with us....so ur fears may be holding u back...but I do understand how u feel...I was very scared too....

  
2120085 tn?1344765910
So is that the same for everyone? if not treated..
or severe cases? cause I dont see my symptoms as severe, yet the 20mm herniation makes it seem alot more worse to me if you catch my drift?
620923 tn?1452915648
COMMUNITY LEADER

  Unless ur tonsils r creating overcrowding or a CSF obstruction it does not matter how long they r...they can be long and thin and u can be fine with just a watch and wait....some with smaller herniation's have much more severe symptoms bcuz the tonsils r wider.,..and block flow...so do not let the mm's get u....there is so much more u need to be looking at...

  We r all different and u have to see what ur Dr says....they will tell u if they feel u need surgery now or if and how long u can wait....but, sometimes waiting is not the intent, it happens as a result of uninformed Drs....

  
2120085 tn?1344765910
Just pre wrote an essay to plead with GP for a cine / full spine mri... hoping they can do both at once... and for sleep problems..
Get all checked and put out of way and pray that I will only have head aches and vision problem for the rest of my life!

620923 tn?1452915648
COMMUNITY LEADER

Keep in mind, certain activities u should avoid to help prevent ur symptoms from worsening....we do have a list of activities to avoid....but some things can trigger symptoms to get worse, a fall, a hard sneeze, or a MVA....

  So, be advised to keep HA"s to a minimum u will want to avoid some things, and they r things that cause u to strain....

Use the Health Pages located at the bottom of this screen to get the info.
2120085 tn?1344765910
You and your acronyms !!! lol whats MVA

and yea the laughing thing really depresses me... I havent had a real good laugh in around 8 years now :(... just pain when I do laugh
620923 tn?1452915648
COMMUNITY LEADER

  Sorry, but when u r typing all day acronyms and abbreviations come second nature...

MVA= motor vehicle accident

We do have a list of all abbreviations in the Health pages if that helps : )
620923 tn?1452915648
COMMUNITY LEADER
2120085 tn?1344765910
Yea sure... your just lazy lol !

I can see that list coming in handy, thanks alot
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