Just diagnosed and can't find a doctor

[neensmom]

My 19 year old son was recently diagnosed with Chiari and Syringomyelia. He has been seen by one surgeon who suggested getting a second opinion. We have been searching doctors online and don't know how to know if they are a Chiara specialist? I keep reading on here the importance of that and just don't know how to tell. Are there specific questions we should be asking? Any help would be greatly appreciated. And also can this condition be caused from, or worsened from, getting hit in the head? He was hit in the head which lead to tests that found the problem. He has never had symptoms before this happened and has lots of symptoms since the injury.

[selmaS]

  Hi...we all find out in many different ways...some after an injury to the head or neck area.....this may worsen symptoms already present but may not be seen as symptoms but a normal way to feel....since most of us have had this since birth we can have symptoms all thru our lives and do not consider them symptoms since we have always felt like that ....that does not mean it is normal for most, just that we do adjust to our own "normal".

Once we know what are symptoms and realize the symptoms can come and go ( they cycle) we can begin to connect the dots and see just how long it really has affected us.

Also not all of us had the opportunity to have a MRI when we had a symptom flare...as they were not always a means for DXing these issues.

Since the use of MRI's to DX is was new, they were not always sure what they were looking at or if it was something to be concerned with or was an incidental finding....more Drs then not see Chiari as incidental.

Had your son not had that hit to his head he may have been able to go longer without a Drs intervention for his Chiari....then again...it could get worse with a car ride down a bumpy rode....an amusement park ride...etc...even having a hard cough.!

True Chiari is the malformation of the skull...so some symptoms were always present....acquired Chiari or low lying tonsils is due to blunt force trauma to the head or neck area....the Drs can see if it is congenital or acquired due to the space in the skull.

For me, I went to Drs for major headaches while still in high school....I know I had issues in grade school as well but they did get worse for me in HS.....the Drs told me it was anxiety blah blah....gave me all sorts of meds....nothing helped....Note MRI's were not being used at this time.....I went most of my adult life dealing with many issues/symptoms....I had a drop attack in '07 that resulted in 2 surgeries for injuries sustained  and one of my surgeons sent me to another Dr to find out the cause...thinking it was lupus....a MRI was done and Chiari found...I was 48...49 when I had surgery.....so, he may be ucky to have found it when he did....and may find it has affected him longer then he really thought.

[neensmom]

Well, we finally have 2 appts. set up at the Mayo clinic in Minnesota, so hopefully we will have some answers soon. The waiting is the hard part. I was kinda wondering how most people find out they have Chiari? My son has never had any symptoms until this year when he was hit on the top of his head at work. A week later he had a seizure and we took him to the ER where they ran tests that led to more tests and eventually a Chiari and Syringomyelia diagnosis.

[neensmom]

Thank you for the suggestions. This forum has been very helpful. I have been reading posts for a while now and have gotten a lot of questions answered.
And I am definately writing all my questions down cuz I would forget them for sure. We are hoping to hear from Mayo next week and you can bet I will have my list with me..LOL

[Lottida]

It is definitely possible for the cerebellar tonsillar herniation to worsen with any head trauma & that is why Chiarians should avoid anything that will jolt the head/neck with significant force (like rollercoasters ect....).  Since Chiari is something we have had since birth, most of us aren't aware that we have it either.  I do agree that most of us THINK we are symptom free until one day everything goes haywire!!!!!  Then we think back & realize oh I have had some pressure or headaches but thought it was the computer or something else causing it.   I have read that some people live all of their lives without symptoms, but unfortunately for me my symptoms surfaced at the ripe old age of 41....lol!!!   Good luck & hopefully you can get answers soon!!  Just make sure to write down all of your questions to bring with you for the appointment........if you are like me I forget what I want to ask the minute I walk through the door.

[neensmom]

Thank you for your responses. We live in Michigan and have already been seen by one NS. He suggested that we get another opinion. We have an appt next month with another at a Brain and Spine Institute. Our family physician is trying to get an appt for us at the Mayo Clinic in Minnesota. Your suggestions on what questions to ask will definately help in our search. Also, is this something that can happen, or worsen from an injury. He was hit on the top of his head and the symptoms have developed since then. I realize this is something you are born with, but we were unaware that he had this and he has never had symptoms before the injury. Thanks!

[Lottida]

Hi I just wanted to say that I understand your frustration with not knowing who is a specialist.  I will say that in my search for a specialist that not many NS in my area of Louisiana had ever even treated Chiari.  One of the best questions that you can ask is "How many Chiari I Malformations & Syrinx cases does the doctor treat yearly on average".  This will give you a guide to go by............if he only treats 3 or 4 a year then you may want to move on until you find someone that Chiari is the bulk of the practice & of course until you find the NS that is right for you & your son.  Please keep in mind that if any doctor tells you treatment is determined by the length of the Cerebellar herniation then please move on!!!!  Everyone is different & so are the severity of the symptoms.   Good luck with the doctor search & hoping your son has a great outcome!!!!!

[selmaS]

  Hi and welcome to the Chiari forum.

It is best to educate  yourself on Chiari and ALL related conditions...once you are more familiar with this it will be easier to tell when you have found the right Dr....

We do have a list of Drs...not all may be true specialists but they have treated it...so we have compiled the names of Drs members have been to, treated by and liked....so you will have to see a few and compare them..

Where do you live so I can post some Drs from your area....also are you willing to travel? Many of us do not have a Dr close to home and do travel to get to one...