2nd NS :(

[shortyw3kids]

Had my Cervical MRI done yesterday, and the statement from the NS was "your brain is not pressing on your spinal column and we don't see any syrinx, so you don't meet the criteria for surgery". Then he told me that my NL can help me to manage the symptoms I am having but there is nothing that can be done from a surgerical standpoint.

I got a copy of the disc but the report wasn't ready before we left.

I saw my NL in the afternoon, he adjusted my meds again, referred me an ENT, and basically said he doesn't know what is wrong with me, as to why I am still having symptoms over a year after hitting my head. "That maybe it is psycological". Wow is that dr speak for "It's all in your head", since he can't figure it out.

[Spaceystac]

I am sorry to hear you are going through this, I have had 0ne bad opinion already and would hate for my second opinion to go the way yours did.   You know yourself better then anyone, so keep fighting, if your NL wants to send you to a physic evaluation do it, it might actually help you in your defense.  My pcp was putting "hyperailmentation" or "over exaggerating symptoms" in my records, and suggested I see the in house physic so I did. He said I had anxiety but no somatic disorder. Shortly after this, that primary care doctor dumped me on a different doctor after I asked to be referred to a NL again.
  I think we should be given more rights to our own health care. If I would have seen a NL months ago like I asked, I might not have gotten worse.   I hope you can find a different doctor who will find a diagnosis for you.
  One suggestion, get you atlas alignment checked, when you take a hit to the head, it can really put things out of alignment in your neck an that isnt something NS's and NL look at, you would need a good chiropractor that could tell you if that is one of you causing factors of pain. Just be careful who you see, and dont let them do any high velocity manipulations to you.
   I hope this helps, I can relate to how you must feel, so at the least, you know you arnt alone.   Stacey
  

[pamk5]

Hello,  Did you see a Chiari specialist?  The reason I ask is because that sounds similiar to what most of us hear if you see a regular NS.  First of a syrinx is most commonly found in the C spine but can also be found in thoracic and lumbar spine as well.  So they cant say for sure you dont have a syrinx until you have a MRI of your entire spine.  Did they do a flow study? Cine MRI?  To make sure you dont have blockage of CSF fluid.  I would gather my scans and get another opinion to have these additional test done.  If you get to a true specialist who tells you that he can monitor you that would be amazing news.  I dont think I would be comfortable with that advice till I had all the answers.

There is a list here in the forum of docs other members have used and liked.  It is meant as a place to start.  I wish you all the best.  

Pam

[selmaS]

  Hi my question  is the same as Pam's...was this a specialist?...do u mine sharing who u saw?

Once u have the report u can take a closer look...but make copies of the disk u got and get them out to true chiari drs.

Hang in there....too many drs feel chiari is not symptomatic.

   "selma"

[teenybeanz]

I went through almost the same exact situation. I saw a NS who didn't want to do surgery because I had no CSF blockage and no syrinx and my brainstem wasn't squished. I was very frustrated and at one point did have a physicians assistant who told me they weren't sure chiari was causing my symptoms. It made me absolutely hysterical.

I was referred to a NL who I got luckier with because he was very interested in Chiari and had worked with many chiari patients in the headache center (he is head of the headache center at Johns Hopkins). He said because I am hyper-mobile that functional cranial settling could be a factor and I should get an upright MRI. He also ordered PT and a tilt table test to rule out heart problems.

One thing I did learn and I want to make very clear is that if you don't have a blockage, or a syrinx, or too much pressure on your brainstem it's better to try your best to avoid surgery! You should try absolutely everything else first before you try surgery because the surgery can result in NO resolution of symptoms and it can CAUSE MORE pain from scar tissue and improper muscle healing etc.

Keep in mind the doctors good intentions when they try to convince you not to have surgery. It's a sign of a good doctor when they want surgery to be a last resort. Doctors by nature want evidence that is more concrete than just us telling them we have symptoms before they do brain surgery. However, a doctor telling you it's psychological is NOT a good sign and you should see a true specialist because they obviously don't understand chiari very well.