About this Blog
~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again
chiari question (undiagnosed)
i noticed when i sit my hip bones put pressure into my spine putting pressure into my head causing horrible pain and then a migraine. this also happens when i walk and my heels put pressure into my head! is this chiari symptom?
im waiting on insurance to see a doctor.
Posts
6 comments:
YOU HAVE EXPLAINED A SYMPTOM I HAVE GOTTEN SINCE MY DECOMPRESSION SURGERY, THE PAIN YOU FEEL WHEN YOU STEP
ON YOUR HEEL AND IT SENDS PAIN TO THE BACK OF MY NECK/HEAD, I HAVE BEEM TELLING THE DR'S ABOUT THIS PAIN AND THEY DO NOT UNDERSTAND IT, I AM SO GLAD YOU HAVE EXPLAINED EXACTLY WHAT I FEEL, WOW, DO YOU KNOW IF YOU HAVE CHIARI?
ANNETTE
You could have TC (tethered cord) which is related to Chiari. You spinal cord at the lumbar level is tight (OTFT: occult tight filium terminal). It actually pulls downward. This pulls on your brain-stem and helps to herniate your tonsils further. Bladder problems, such as constant urination, incontinence, constipation, or diarrhea, sleeping with legs bent, etc are other common symptoms of TC. TC can activate headaches too. Unfortunately the only place that can properly diagnos TC in adults is TCI in NY.
Guy
Hi,
It could be but you will need a MRI to get a definitive diagnosis. See below for added important information.
Make sure you faithfully practice the ACM symptom alleviation methods
referenced below just in case.
Most of the information we have on Arnold Chiari Malformations (ACM's) is
posted on our information pages linked to our home page at
http://www.pressenter.com/~wacma or www.wacma.com (Chip Vierow - Master Web
master and ACM expert) to include a list of doctors with ACM experience, a list
of questions to ask your doctor and a list of possible symptoms at
http://www.nfra.net/Symchart.htm . Each Chiarian is different and will only
have a select few of the symptoms listed.
A list of USA, ACM knowledgeable
doctors can be found at http://www.pressenter.com/~wacma/usdocs.htm . A list of
non-USA doctors is posted at http://www.pressenter.com/~wacma/alldocs.htm. The
doctors on these lists were recommended by one or more members of our group.
To get to the complete lists of information sites, click on the on-screen tabs,
i.e. Onsite and Offsite Information, that are to the left of our home page.
An ACM can be inherited. Typically a review of your family's neurological
history should reveal if that is a possibility. The typical triggers for
acquired ACM formation are:
whiplash especially from car accidents, head trauma from a fall or
blow to the head, improperly administered epidurals/spinals especially during
child birth, or difficult birth delivery as in forceps delivery where the
child's head is traumatized and an ACM forms.
Many of our members get some relief using our ACM symptom
alleviation methods posted at http://www.pressenter.com/~wacma/bhm-list.htm.
The methods are not instantaneous so give them some time to reduce symptom
intensity. These methods are important with or without decompression (see
below). Try these before opting for surgery. If a syrinx (spinal cyst) is
present, surgery may be the only option. The decompression surgery typically
reduces the size of the syrinx or eliminates it completely.
I highly recommend the symptom alleviation methods and practice them
routinely.
The following doctors are considered the top ACM experts in the USA based on
member feedback and publications: Drs. Batzdorf (CA),
Menezes(IA), Oro (CO), Frim (IL), Heffez (WI), Weingart (MD- Johns
Hopkins), Milhorat & Bolognese (NY- Chiari Institute, North Shore Hospital)
www.thechiariinstitute.com , Carson (MD-Johns Hopkins), and Ellenbogen (WA).
Note: The last two doctors are pediatric neurosurgeons but they do treat adults
on some occasions.
Most of the doctors referenced above will review your MRI's sometimes at no
charge. Call the offices and ask. The TN's are listed on the doctors list
referenced above.
Decompression is the surgical procedure of making more room for the descended
cerebellar tonsils that are now in the brain stem area. It involves making an
incision in the back of the neck, enlarging the hole (foramen magnum) where
the brain stem passes into the skull and in some cases removing a small part of
the C1 and C2 vertebrae. The latter part of the procedure requires opening the
dura, the membrane surrounding the spine. It needs to be patched with a graft
from the patient or from other sources such as a synthetic fiber membrane.
Not every decompression is completely successful for many reasons. Scar
tissue formation is suspect in many cases.
The cerebellar tonsils are typically not put back in place in the decompression
operation. Therefore neck stress/strain reduction/elimination will always be
important.
Make sure future MRI's are done in dynamic (CINE) mode aka "spinal fluid flow
study". It is the normal MRI except they use special software to monitor the
spinal fluid flow. This is done via a small electronic clip/ band put one of
your
fingers or via EKG clips in conjunction with the MRI. Some ACM's interfere
with spinal fluid flow and that is the reason for this test. Make sure you get
a copy of the MRI for sending/bringing to other doctors. Ditto for your
previous MRI's and get copies of the reports that were made along with them.
These are rightfully yours. A full spinal MRI would also be helpful if a
syrinx is probable based on symptoms. There are pictures of MRI's on the
anatomy
link to out Onsite Info pages
http://www.pressenter.com/~wacma/anatomy.htm ).
As noted above, if a syrinx (spinal cyst) is found, then decompression surgery
may be the only option. Syrinxs typically will disappear or be greatly reduced
in
size after decompression since the spinal fluid will return to normal.
Some ACM experts prescribe the diuretic, Diamox, for ACM symptom relief. Some
of our members get relief from it, some do not. Supposedly the Diamox reduces
the amount of spinal fluid that is formed thereby reducing the pressure on the
ACM. Make sure you review the side effects. Diamox Sequel is a time release
form that reportedly has fewer side effects.
In general, we do not recommend chiropractic treatment for ACM's. The
practitioners are not experienced and typically adjustments increase the
compression on the ACM.
Hi Courtney. . .
I'll be the first to say that Chiari can cause a TON of symptoms, some of them quite ODD, but your note about the hip bones and heels causing pressure in your head is the first time I have heard of that as being Chiari related.
I hope you get your insurance straightened out so that you can have the MRI to rule out Chiari. This is NOT a diagnosis that you want to have to deal with!
blessings,
when i walk my hip bones grind together causing pain in my back and this has only been happening sience my surgery from this past Jan.
It can be a symptom. It is also a symptom of Functional Cranial Settlement (see Journal of Neurosurgery Spine Dec. 07)
It is written by the TCI dr's........
Blessings,
Ann
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