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Symptoms: My pressure headache has been worse over the last couple months.  In addition, I'm having worsening pain throughout the length of my spine.  My POTS symptoms are about the same--definitely up and down.  Every symptom seems to wax and wane, but never actually go away.  The pressure in my head is sometimes terrible and sometimes bearable, but always, always present.


In addition, I've noticed that I have increased mobility in my neck, which could be a sign that my current cranio-cervical fusion is not doing it's job.  I have almost a full range of motion from side to side, which shouldn't be possible with a properly fused neck.


Doctors: I contacted Dr. B in NY, who has ordered the following tests:

-MRI's of brain, cervical spine, thoracic spine, and lumbar spine

-X-rays of skull and spine

-neurological exam by a local neurologist.


For insurance reasons, I won't be getting these tests done until after January 1st.


The Chiari Institute has recently begun performing a new surgery on many of their patients with continuing symptoms, called a detethering of the spinal cord.  It is to treat a difficult to diagnose form of tethered cord called Occult Tight Filum Terminale.  The outcomes from this surgery are very mixed.


I've recently been finding out more and more positive information about Dr. Dan Heffez, located in Milwaukee.  I plan on arranging an appointment with him after my tests are complete.


I've recently come in contact with a 25 year old girl from Chicago with a list of conditions matching mine.  With the help of Dr. Heffez, and an upper spinal fusion, she was able to eliminate ALL of her symptoms, including head and back pain, IBS symptoms, and POTS symptoms.  I'm currently finding out more information about this surgery, in case it could be helpful for me.


Wheelchair: After trying for almost a year, I finally purchased my new titanium wheelchair, that I can get in and out of the car myself, allowing more independence!


Disability: I've been on disability since early in the spring.  It's a pain and very limiting, but the money will help to pay for my upcoming medical tests.


Life: Graduated from college.  Teaching piano lessons.  Resting a lot.  Family challenges due to divorce.  Steady with a wonderful boyfriend, Gus.  Still living due to the support of those who love me.


Whenever I seem to feel like I've run out of options, I consult my list of possible treatments in order to reassure myself not to give up.


Possible surgeries include:

-Odontoidectomy--The Chiari Institute


-Revision of current fusion--TCI

-Further spinal fusion--maybe Milwaukee


Possible alternative treatments:

-Massage therapy (increased frequency)  $$

-Lidocaine patches (increased usage)

-Acupuncture $$$

-See a rheumatologist for arthritis

-See an orthopedist for spine

-See Dr. Heffez

-Cranio-sacral therapy

-Myofascial release

-Physical therapy

-Increased use of pain meds (reluctant due to fear of building a tolerance)

-Narcotic patch for pain (don't want to be addicted to narcotics)