Help..what do I do next?

[Nancyg77]

Just found out I have a type 1 mal.  8mm. Only symptoms are headache in back of neck which is manageable. My primary physician found it with a catscan because I was having headaches.  He told me to see a nerosurgeon for followup. Where do I go from here? Is it better to go to a big Chiari specialist, like in Great Neck NY or  or just a nerosurgeon and get MRI for my first visit?

[selmaS]

I think u can find people in all stages of symptoms here....in fact when I first got here I thought I do not have near the issues these poor people have...but, my symptoms changed and I realized I had many symptoms that I did not see as symptoms...things I thought were "normal"...and I compensated for thru out my life...so if u have something for sooooo long it is hard to see it as a symptom....plus, there was a time, I too had HA's that responded to meds....but, I was not dx'd....today more r finding out about their chiari much sooner than I did and it is all technology....back when I said I had HA's I was sent to a shrink, and given anxiety meds....and I would stop going to drs for yrs until I could not take it and then try a new one hoping to get somewhere.....so depending on ur age, and how long u have been dealing with this...I would not think it at all uncommon.

In fact all the better for u : )

Chiari can get worse depending on if u have a CSF blockage and overcrowding...find out what all is going on...and move forward from there....avoid things that will jar u and could trigger ur chiari.... amusement rides like a roller coaster (which were my fav) and things like that ...lifting heavy weights, straining etc....even natural child birth is not recommended.

I also do not have an immediate family member with this dx , but I do have a cousin with spina bifida....and it is possible for others to have it and not be dx'd.....

The ones with positive outcomes no longer need support and tend to move on...but yes, there r some with very good outcomes...and if u can use OTC meds...u r on the right track.

Not everyone with chiari is a surgical candidate...and not all will progress....what we want to avoid by having surgery is the formation of a syrinx...which forms when we have a CSF blockage...surgery is to open the flow....it is not meant as a cure or a fix....too many think they will be 100%...and that may not happen in fact some may respond poorly to the surgery...we can never know for sure.....and that goes for ne type of major surgery ne one has...there r risks involved.

So far, u r a good story and I hope u stick around and share ur experience with others here : )

"selma"

[Nancyg77]

Thanks for your response. I notice this site is full of people who are having terrible Chiari problems. Are there people who are like me and stay like me: 4 or 5  headaches  a week which respond to over the counter meds. Or can I expect this to most likely get worse? I guess I want to be optomistic and hope that I stay as I am and not ever need surgery. Has anyone posted here with a more positive outcome? No one in my family has been diagnosed with Chiari but me. So I don't actually know how I could have inherited it. Some family members have migranes, but have not been diagnosed as Chiari.

I would love to hear about some "good" , if that is possible, Chiari stories. Thanks again for your response.

[selmaS]

Hi and welcome to the Chiari forum.

IMHO it is best to see a true chiari specialist as they will do further testing to see what all is going on...check for related conditions and see if u have a CSF blockage, and overcrowding......

Many chiarians do have other issues and it is best to know b4 u even consider surgery and it is best if that is the best route for u, to go with drs that deal with chiari on a daily basis.....u want the experience and knowledge that comes with that....


Most of us have gotten what we call the "royal chiari run around" by reg NS....many do not feel chiari can cause symptoms....and it can be frustrating...Drs like at TCI in NY will only offer surgery if they feel the benefits out weight the risks...and there r risks...and surgery is not a cure.

It is good to have a good NL in ur local area as u will need follow ups done and hte NS only checks the surgical site afterward as a NS does not dx....so unless u have a new dx, they have no reason to continue to see u.

See a true chiari dr.....

We r happy to have u join us, but not happy for the reasons that bring u.

"selma"