Suddenly symptomatic?

[meatsafe]

I discovered my CM in 2006: I got a precautionary CT scan when I had my first migraine, which was followed up with an MRI and a diagnosis by a neurologist. I had no symptoms at the time, but for the past few weeks have had constant headaches, some neck stiffness, and sundry other Chiari-like symptoms including unexplained vomiting (merited referral from urgent care to ER), dizziness, and confusion. I have just gotten another MRI and am hoping to land a referral to a neurologist soon; the wait seems interminable (my primary care provider isn't available) and, as if to taunt me, they provided me with a CD of my scans which I have been trying vainly to interpret in the meantime. The malformation is still obvious but there are no striking new anatomical features (enlarged ventricles, syrinx) to get excited about.

My first question is whether such a sudden onset of symptoms is common when Chiari does become symptomatic. Second, I have a feeling my doctor will not refer me to a neurologist if the neuroanatomy has not changed: is this accurate in your experience? Would that be sound medical practice or should I push for the referral?

I'm in the process of reading through the old posts here and am sure I'll find relevant experiences, but I'd appreciate your responses all the same.

[zygy2]

Wonderful!!!!  It is a frustrating process but the harder you push to get people to listen and help the faster it will go.  What is great about this board is that people can learn how long it took some of us to find help!  It can make someone feel less frustrated and more motivated!  When you do find someone to help it will make all the searching and time worth it!

[meatsafe]

Sorry to hear it came to that just to get an MRI in the first place! I took everyone's advice and e-mailed two neurosurgeons specializing in Chiari malformations. Although neither is Dr. Popps, I'm happy to report that I've scheduled a consult already. Thanks for everyone's suggestions!

[Samanthab259]

Thanx & ur not alone ") i just dont understand it to be honest my ns just brushed it off so i wasnt really worried until my symps came back. I go back this weds for my mris & see what she has to say. I also am looking into a chiari spec out of Jonesboro ark. Has anyone ever heard of Terri Lichtor?

[zygy2]

Hello!  Interesting to find someone else with a pseudomeningocele, I don't see many posting with this issue on here.  I was feeling a bit alone :)  You can see a pic of mine in my profile, I was about three months out of surgery when all of a sudden I was having some of the old issues.  The surgeon said that they would have to fix this and rule it out as a cause before they would be able to try anything else because it would be the most likely cause of the problems.  I have headaches ( a new kind that I get from upright position, just sitting to standing causes pressure and also from head movement or looking up or down)  There are also chiari cough headache pains again and for the first three months after surgery I had NO headaches of any type and felt wonderful.  I also have numbness in my arms again and sore neck and shoulder, and nausea.  I also had not had these issues after surgery.  My current neurosurgeon ( old one moved across country) prefers to use your own tissue for the patch so if he finds more than a small leak when he opens me up then he will replace the synthetic patch (he does not like this type he says because of more leaks such as mine).  I guess I will know after surgery if he replaced it or not, he said the surgery should be easier because they will not be removing bone this time.  My NS said it will not resolve itself since I am so far out from my surgery, I am 1 years post-op this week.  I think he assumes it is a problem because I felt great for months after surgery and now have these issues popping up... I felt amazing at three months and was so happy.  Really bummed I have to do this again but I really do feel like it is a problem.  He told me that since the Fluid is able to flow between the pseudomeningocele and the brain that it will NOT resolve itself.  Who knows though, everyone seems to have very different opinions on Chiari and things related to it.  I am five weeks from surgery and seriously can't wait even though I am terrified to do this again, I just want to be able to get out of bed and not feel my head squeeze!  Life without the headaches was great, I am hoping to get back to that again.  You can always get a second opinion if you don't agree with what you are being told... it takes time to get people to listen sometimes!  -Zygy

[Samanthab259]

I was told i had  pseudomeningocele as well. My NS told me not to worry its nothing serious. I was about 2-3 months out of surgery. So can this be causing all the new problems i am having or does it resolve itself?

[karenlast]

I live in Hingham and was just diagnosed and have researched the neurologists in this area.  Dr. Popps, at Brigham was able to see me the fastest and has a good reputation.  Make an appointment and then call your PCP and tell them you have an appointment with Dr. Popps. Give them his address, fax and phone number and they will send the referral paperwork.  My PCP referred me to three of their suggested nuerosurgeons and NONE of them even did this type of surgery.  So I took it upon myself to find out who did and made my own appointment.  It's best to have the referral faxed in before your appointment or you run the risk of having to pay out of pocket.  Let me know if you have any other questions. Good luck.
p.s.  My PCP would not order an MRI for the same day...wanted to send me to a neurologist first which would have taken weeks.  I went back to another MD in the office the next day and totally made up some new symptoms which I did not have...but which I knew were red flags so I could have the MRI that day.  Got the MRI and guess what...my diagnosis was right.  I have chiari!  16mm

[zygy2]

:)  LOL  "nutter"   I have been laughing the past five minutes!!!  Sadly a lot of us have been made to feel like "nutters"  Until you find someone that does not think that just keep going!  You do want a neurosurgeon and just keep pushing until you get one.  I had a neurologist keep trying headache meds for a cough headache... which do not work and quite honestly point quite directly to Chiari.  She was a pain but I was a bigger pain until I got what I wanted.  I even went out of state to get one of my opinions, I wanted to know everything that I could.  My surgery was fantastic and I felt great after, the issues I have now are because of a pseudomeningocele and once again I knew something was wrong but they did not want to do a new MRI.  They told me pain meds, I don't want to be on any pain meds, I knew something was not right!  Found myself a new neurosurgeon (my old one moved and as I stated earlier the neurologist was a pain).  The first thing the new Surgeon did was tell me "you need an MRI"  :)  That is how they found I had the pseudomeningocele (leak from surgery).  It is not fun to have to push this hard to get something done but if you know you have a problem just keep going.  Lots of us post over and over on these boards to find someone that really specializes in Chiari!!  Good luck and hope you get the report quickly!

[selmaS]

If ur medical ins does not require a referral....do the research and find a true chiari specialist....I did not have a referral....

When my Dr tried to refer me to a NS...the ones I was sent to had no idea what chiari was.....I did my research and found the NS on my own.....

Or should I say with the help of this site....and it was by far the best thing I could have done.

Let them think what they want...many drs feel those of us with chiari r a little off the beam already....as they do not recognize many of the symptoms or that the condition will cause the symptoms.

  Go with ur gut, what feels right to u.

    "selma"

[meatsafe]

Thanks folks...I certainly will attempt to get a copy of the report as well. The CD was ready for me on the way out of the imaging center, but the report was not. I tried to get the results from my healthcare center this morning:

Me: I'm calling for the results of yesterday's MRI.
Receptionist: We've received them, but [the doctor on call] might feel uncomfortable relaying your results.
Me: ...so, good news, then?

I'm very fortunate to be a biology grad student at "a small liberal arts school in Cambridge": ostensibly I have access to neurosurgeons at one of the best hospitals in the world through a good health plan.

But to clarify, if I'm not given a referral, should I just show up unannounced at the door of a (carefully-selected) neurosurgeon? I have never had to get a second or third opinion before: is that how it works, or will they think I'm a nutter?

[selmaS]

  Hi and welcome to the Chiari forum.

Once u have a chiari dx, u do not need a NL, u need a NS....and one that is a true chiari specialist.
Not knowing what ins u have and if u need a referral ( I assume u do by ur comments) , or even where u live...it is diff to offer much help....we do have a list of chiari drs  that was compiled by the members here....u have to research all the drs as not all may be a true chiari specialist....just treated it and was liked by their patient.

Chiari can often times appear out of the blue symptom wise...many more times than not , we have had symptoms but bcuz it cycles and the symptoms r similar to other conditions we r lead to believe it may have been something else...so we do not connect the dots until a larger flare of symptoms...then pow..what happened?....

Some it is a MVA that may have triggered the flare, while others a fall or bumpy car ride or stress......

What u may want to push for is a CINE MRI, and a MRI of ur cervical spin, thoracic and lumbar spine...rule out a syrinx, tethered cord and a CSF obstruction and over crowding.

  Always ask for the copies of the reports as well as the CDs....as it will help when u want to get a 2nd or 3rd opinion.

    "selma"

[zygy2]

The CD's are always fun!  You will find lots of people in here that have posted MRI pics!  Did you get a report with the CD. Whenever I pick up the CD it always comes with a report and that helps to try and figure things out.  Obviously if you know you have Chiari it could be causing your problems and you will just have to get to someone that listens and knows a lot about chiari.  It can take a lot to get someone to listen.  

I had about five years from when things started to change until they "went crazy".  The headaches (chiari cough headaches) were all the time, numbness in my arms, nausea... those types of things finally made me think there was something going on.  I think it was quite slow increasing for years but then it picked up speed for some reason.  Even if you get to a neurologist that can not be enough, Neurosurgeon is the way to go!  My neurologist drove me crazy not listening!  If you have Chiari you should have the right to get a referral to someone else easily enough.  Just keep bugging them and they will probably give it to you just to shut you up :) LOL