My Chiari Quest: Making Changes

[Marconis1]

As many of you may have read, I have not had an MRI since 2006. For Chiari specs/backstory, see thread: http://www.medhelp.org/posts/Chiari-Malformation/How-often-to-MRI/show/1667786

*I apologize for the long posting ahead, I just need to vent and all of your support keeps me happy*

For years, Chiari was always in the back of my mind (well, every time I have a headache I think of it). My pediatric NS, and my OS both told me that MRI's at this point weren't quite necessary, as my Chiari was only 3-4mm, and there was no sign of a syrinx. My symptoms are mild, and always have been, so they figured I'd be in good shape. My parents loved this advice, since they knew I was a hypochondriac and didn't want me worrying anymore. Being only 15 years old, I loved this advice, too, so I could get back to living care free. As I grew older, though, I started to realize that there was something quite wrong with this advice. Every so often, I would hit the web and research this condition and see how others were doing, on message boards such as these. Sure enough, I'd soon forget about it and get back to life.

It wasn't until last week, on January 17th, that I started to have upper back pain. I have scoliosis, and even with it, back pain for me is quite rare. Upon feeling this stiffness in my back that persisted for a day, a wave of fear overcame my body...I immediately thought, "I have a syrinx." Regrets, self-hate, hate for my doctors, and distaste for my parents humble view on my Chiari overcame me, and I sat down with my parents (after posting here last week) to tell them that I am actually very concerned that I have not had an MRI in such a long time. Of course, they pulled the, "The doctors said you didn't need anymore!" This got me pretty upset, because I have been telling them about once a year that I wouldn't mind a round of MRIs to check up on things; even so, I always stopped caring and went back to "living life".

I can't resort to that attitude anymore. Unfortunately, last week and this week has been extremely busy for me, due to school starting up and working as many hours as I can before I start school again. This being said, I haven't had much of a chance to look for doctors on Long Island or in NYC that I can potentially make an appointment with. The entire web seems to be enveloped in links that direct to TCI; TCI is fantastic, but if I recall, it takes a long time to get an appointment, and bills can stack up quickly. Since my mother works in a medical group, I requested that she ask around, but many only seem to know pediatric NS that specialize in Chiari, which I do not want to visit anymore. The next step, I suppose, is to call my pediatric NS and see whom he recommends/can make a referral to. Why that wasn't the first thing I did, don't ask. I wish I could just walk in to BAB Radiology and say, "I need a series of MRIs". Can I do this? I was/always have been under the impression that doctors must order MRIs before a patient can be imaged. It pains me to think that, at my last appointments with my NS and OS, they both DENIED my request to have an MRI (see reasons above). Why can't they just order me them if I want them?

Anyway, my upper back pain had actually faded by mid-week last week, but all of a sudden yesterday it sprung back up again. I am lying in bed with my laptop, exhausted but sleepless, inundated with the fear that I have a syrinx hugging my spine, as my upper back continues to ache. Chiari I can live with, but having syringomyelia will open up a whole new can of worms that I am not ready to deal with, both mentally and physically. I need an MRI as soon as possible, and this waiting around, at the fault of my own, is killing me. I have work today, and I sent an email to my mother (I work/go to school in NYC with my brother, parents on Long Island) requesting that she please try on her day off (today) to give my pediatric NS a call, or assist me with researching doctors that fit our insurance and what not; I am still financially dependent on my parents for medical needs, so I like them to be in charge at this point in my life.

I'm very scared, guys...this back pain is very sudden and the fact that it is persisting deeply concerns me. I made this thread so that I can keep you guys updated as to what is going on with my Chiari. I am very glad I found this community...it makes me feel much less alone in a world of people who know absolutely nothing of this condition. I thank you for reading, and I especially thank you for your support. Thanks for letting me rant.

-Nicholas

[selmaS]

  Please use the list we have to help get u started...it is not a referral by ne means, just a place to start : )

  If u need help, just ask.

[Marconis1]

I do not have a Chiari specialist, I am working on it but have been very busy with school so haven't had much time to sit down and do research.

[selmaS]

  Well the Cine MRI as well as a Lumbar MRI will help....u need to rule out the  related conditions.....

  Do u  have a chiari specialist yet?...if not, that is what u may want to work on, as well as a well informed NL.

[Marconis1]

I still need to have my thoracic done, but I have peace of mind knowing that I have had brain and cervical/upper-thoracic done, and that area is free of a syrinx. That's where my pain is coming from anyway. I have not had a CINE MRI, no.

[selmaS]

  Hi...I doubt it is the disk causing ur issues as it states it is not compromising the canal...if it said it was, then u  could look in that direction.

many with Chiari tend to have disk issues, and u will need to keep an eye on it, but from what u wrote, it does not seem to be the culprit.

Have u have a CINE MRI? to see if u have a CSF obstruction? That would be where u need to look...as well as into related issues such as a syrinx, they can be located in the  cervical spine, thoracic and lumbar spine, so if u did not have MRI's of those areas there is no way to know.

[Marconis1]

After doing some research, perhaps this protrusion is the cause of my new symptoms. As for the cause, I am unsure.

[Marconis1]

Hi everyone. I went to my appointment only to be told that my NS had to perform emergency surgery, so I couldn't see him. I was kind of frustrated, so I just went down to the radiology office and got my reports. The report compared my new MRI's to my 2006 MRI's, and nothing has changed, according to the doctor who made the report. He measured my Chiari at 8-9mm, stating that there is no significant difference when compared to my last one (though my NS measured me at 3-4mm in 2006, but was not stated on that report). I had my cervical/upper thoracic spine done (at once) and there is no associated syrinx, thank god!

The only difference has been that there is a "New shallow central disc protrusion at C5-C6, which mildly effaces the ventral thecal sac without spinal canal compromise". Everything else is stated as stable/unchanged. Anyone know anything about the protrusion? None of this explains why my headaches have worsened/ I've gotten new symptoms. This being the case, I am attempting to find a new NS (as I am turning 21 in July) to a closer office (I live in Queens, last NS is in Stony Brook).

[Marconis1]

My NS appointment is March 12th, will post back after that.

[selmaS]

  Hi....yes, and I was in a MRI tube much longer closer to 3 hrs...it can be the position, the noise...everything.......

  "selma"

[Marconis1]

Just a question:
Have any of you experienced soreness all over your body after having MRI's? This has never happened to me before (as far as I can remember), but all day my body feels as if I have worked out the day prior. My only guess is for having to lay still for 40 minutes, but that might be a stretch...

[Marconis1]

Hi guys,

I had my Brain/Cervical done today. They gave me CD's this time, which I find pretty awesome, as I didn't get those in 2006. The results/images will be sent to my NS by Wednesday, and we'll go from there. Let's hope nothing has changed.

Nicholas

[selmaS]

  Thanks for the update on ur MRI's and Dr visits.....good luck and I look forward to hearing how it all goes.

BTW- request copies of ur MRI's so u have copies as well as ur NS...and get copies of the old MRI's so they can be compared.

   "selma"

[Marconis1]

Hi Selma, thanks a bunch for the post. So I made an appointment with my GP for this upcoming Friday for an annual check-up, and he agreed to order MRI's for me. With that, I will be visiting my pediatric NS again, as his office said that they will see me no problem until I am 21. I'm happy to finally be getting imaged again. I predict I'll have an appointment with my NS around April, because it always takes a while to go through the series of MRI.

Thanks again, will keep you updated.

[selmaS]

  Hi...I am not sure y u feel the wait time to get in at TCI is not worth it....it  has been a number of yrs already that u have not been seen...that  added with ur medical records and depending on how u r doing depends on how fast u get into TCI,,,,,they bring u in according to need first, so those in dire need get in faster....

U would need a new MRI and the old ones; fill out forms  and wait....but going to a true specialist is worth it, and u r right there, I had to travel almost 3  1/2 hours to get to TCI ....and it was not that long a wait.

Yes, it is costly...u have to pay out of pocket to see the NS, as they do not work with insurance, and u talk to their billing dept to work out payments for surgery.

  There are also a few in NYC that worked at TCI, so they have the experience of working with Chiari....see our list of Chiari specialists and do some research...u will find there r more then pediatric specialists in ur area.

  http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Keep in mind this list is not a referral....just a means to help u get started with ur research.

Many with chiari have other issues, like scoliosis, I have very mild scoliosis due to tethered cord....I also have ehlers-danlos syndrome, cervical spinal stinosis and bulging disks....

Ur back issue could be from ne of them, and ur Dr may have been right, and ur chiari may still not be obstructing CSF and causing the issue, but unless u get a MRI u will never know.

Just to put ur mind at rest, this is a good idea....

Keeping in mind, that it is not the size of the herniation that matters, 3 to 4 mm is usually not considered chiari or symptomatic chiari by most Drs bcuz of the info they got while in med school, which is old outdated info....

A 3 to 4 mm herniation can cause more issues then one that is 13 mm....

  it is all a matter of width not length and all they give u is the length.

   Hang in there

   "selma"