How often to MRI?

[Marconis1]

Hi everyone. I am a 20 year old male and was diagnosed with scoliosis, kyphosis and Chiari Type 1 at age 14. My last MRI's were in 2006, which included brain, cervical and thoracic spine. Diagnoses/ Impressions as follows:

BRAIN (May 24, 2006)
Beaked cerebral tonsils that just reach the superior border of the C1 arch
Tiny pineal gland cyst measuring approximately 2mm
Chiari 1 Malformation--Herniation was not in report, but NS said approximately 3-4mm

CERVICAL SPINE (March 2, 2006)
Reversal of normal cervical lordosis
Cerebellar tonsils displaced through the foramen magnum to level of C1 arch consistent with Chiari 1 malformation
Mild torticollis of the spine

THORACIC SPINE (April 4, 2006)
Normal thoracic kyphosis maintained
Very mild dextroscoliosis of the upper thoracic region

As you can see, my last MRI is approaching the 6 year mark, quite a long time. My last NS visit was in late 2008, and my last OS visit was in August 2009 after a car accident (mild whiplash, recovered, no Chiari upset assumed). Chiari has not debilitated my life really in any way, except for headaches maybe 5 out of 7 days, which I can live with. I get a lot of other symptoms, but they are so mild that I just attribute them to Chiari and get on with my day. If anything, my scoliosis/kyphosis/reversal of cervical lordosis has caused me more grief since it makes my posture horrendous and I constantly have to correct it.

The reason I am posting is because I am rather concerned that I have not gotten an MRI since 2006. My NS was a pediatric surgeon, and Chiari was actually one of his specialties...He works at Stony Brook and is relatively well known. At my last appointment, I brought up to him that I was concerned about my lack of MRIs, as I had read on the web that many do it on a yearly basis. He assured me that since I had stopped growing, have noticed no change in symptoms, that syrinx development is unlikely as well as an increase in herniation unless otherwise aggravated by a car accident. I was still uneasy about this, and my OS pretty much said the same thing (scoliosis hadn't changed over a year and a half, so he stopped seeing me). Do you think it's about time that I get another MRI? I fear that this "assurance" is not entirely safe.

Thank you for your time,
Nicholas

[Marconis1]

Thank you for the wishes. I spoke to my mother and she is going to help me find a doctor, so that we can go in and get a consult that will most hopefully lead to a full spine MRI/brain.

[linnielou232]

I would suggest you get a full spine MRI also.  Going that long and knowing you have Chairi anyway, it will just set you at ease.  I had surgery 16 months ago and I requested a full MRI just for a comfort for my recovery.  Please look into this.  It will help you to know everything is the same, or maybe something is going on.  Wish you the best in your test.

[Marconis1]

Thank you for the guidance, much appreciated.

[Marconis1]

I should also mention that I have Tourette's-like symptoms in my head, neck and abdomen since about 2006. I had informed my doctors about it, and they said Chiari aggravation was unlikely, but I am starting to wonder.

[selmaS]

  Do look at the list of Chiari drs we have in the Health Pages and research them...the list is not meant as a referral...but a means to help u get started researching Drs.

  Scroll to the bottom of this page to locate the Health Pages.

      "selma"

[Marconis1]

Oh, sorry, forgot to respond fully. No, I have never had a CINE MRI. Those listed above were all I ever had. I never had one of lumbar so I need to do that as well.

[Marconis1]

Thanks for the response, selma. That actually makes me feel, well, crappy. You're spot on, though...I'm an idiot for waiting this long. I am going to talk to my mother tonight so she can arrange all of this; she works at a medical group so can get the inside scoop of who's good to go to.

[selmaS]

  Hi and welcome to the Chiari forum.

U should be monitored by a Chiari specialist and should have had a few MRI's over the last few yrs, especially after a MVA!

From what my NS said, every 6 months changes can be seen so, I had to have all new MRI's of areas that were older then 6 months....and if u were ok, I could see going a yr...but 6?....

Have u ever had a CINE MRI to check ur CSF flow?....if u developed a change since the MVA u could also have developed a syrinx...get a MRI...of the brain, cervical spin thoracic and lumbar.

  "selma"

[Marconis1]

Oh, I should also state that I have self diagnosed myself with POTS since I get a rapid rise in heart rate even rolling over in bed. I have to see my wellness doctor about this.