In a lot of pain with Arnold Chiari Malformation

[LG0526]

Hello.  I was diagnosed with Chiari Malformation with tonsils 5mm below the foramen magnum.  I was wondering what type of treatment should be considered.  I have been suffering with painful numbness and tingling, really bad headaches and bad neck pain/pain in back of head for a long time.  I was told that the herniation can be worse upon standing and I had my MRI laying down.  Would this make any difference?  This is really debilatating and nothing seems to help.  I don't know what to do.  
Should I consider surgery as an option?  thanks.

[selmaS]

  Hi and welcome to the Chiari forum.

More testing is needed at this point...u may not know y, but I will try to explain....first, by severe he is only referring to the length meaning it is long, with more testing they can check to see if it is obstructing CSF flow...this is very important to do, as well as see if there r other issues/conditions going on as well. With a CSF obstruction a syrinx can form, so they need to rule out Syringomyelia (syrinx) this is a sac like cyst that fills with CSF, and if left untreated it can continue to grow...some grow slowly while others increase in size very rapidly.

Chiari can be congenital or acquired...knowing which one u have is also helpful. Many of us have symptoms our whole life, but since we have always felt that way it appears "normal" and we do not recognize many symptoms as symptoms until we learn more about Chiari and how it can and does affect us.

The pain u have is a result of the MVA and it triggered a flare....that is if ur condition is congenital....and with 18mm's I would think that is more the case...the MVA may have caused ur tonsils to herniate more then they already were, and also is causing the flare up of pain.

The EMG is a typical test as well are the xrays, do u know if they r flexion and extension xrays?

Were u dx'd with whip lash from the MVA, if so, that could be the main part of ur pain, I know as I also had whip lash and know how bad it can feel....u may need PT to help with that.

The 2 1/2 month wait was fast by many standards, and from Dx to surgery for me was more then a yr....u need to take ur time and know all that is going on or risk getting worse.

Ur Dr is doing what is needed, and we all need to learn patience as I know it is hard to wait, but if u rush into nething with this, u risk more issues and a lot more pain.

Look to ur daily activities if ur still doing them....and try to avoid those that cause the pain and symptoms to flare.We have a list of activities to avoid in the Health Pages.

Try and relax <3

[alscial]

Hey everyone,

I was recently diagnosed with Chiari in November after a MVA. Finally, I went to a neurosurgeon last week (after waiting 2 1/2 months for the appointment) and although he states my Chiari is severe, he won't discuss treatment options until I get more tests done. I have already had an MRI, but he is making me get 2 X-rays of my neck, a CT scan, and an EMG. Did you guys run into the same problems? My herniantion is 18 mm according to the MRI report. I didn't like how vague he was about treatment, especially after telling me mine was severe and I had already waited 2+ months for this appointment. I am afraid by the time I get all of these other tests done, it is going to be unbearable. I already have to take muscle relaxers and pain pills everyday that basically do nothing. The pain is unbearable already, I can't wait that much longer. It is so frustrating.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask who dx'd u? Was it a Chiari specialist? The reason I ask, is Chiari II is something that is noticed at birth and not something that would not be detected until u were older.

Take ur time to find a true chiari specialist and see a few to compare to find the right one for u, as log as u do not have life threatening symptoms there is no need to rush.

Have u had a CINE MRI, a MRI of the thoracic and lumbar spine, checked for ICP, POTS, ehlers-danlos,syrinx.....????

  Try to relax as ur symptoms will increase with the more stress u have.

May I ask what other symptoms u have had to date?

[Jaime1583]

Is surgery the only way to treat chiari 2. i was just diagnosed.   The pain behind my eye is so bad all I can do is sleep.  I am extremely nervous and waiting to go to a chiari doctor. Also one pupil is larger than the other.

[Speedy2056]

I am actually horrified and disappointed with myself after reading the causes of further herniation such as head and neck trauma. Some years ago I did a lot of clubbing with friends (I love my metal music) and head banged to the tunes!

How silly was that? I am amazed that I am okay at this point. *shakes head in disbelief*

[selmaS]

The list of drs we have, is a list compiled by the members, drs that they have gone to and liked, and not all may be  true chiari specialists and y I say research the dr u choose to go to, that the list is not meant as a referral......and u may need to see a few drs b4 u find one that is right for u.

I may like one dr, but u may not...even tho he is good...personality plays a role as u have to be comfortable with the dr.

Well the way u were treated unfortunately happens far too often.....I pray this next dr is the right one for u as well.

Please keep us posted on ur progress.

  "selma"