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

Monday, March 22, 2010

Pleased to Announce

only a spoonie would say that as the title..lol

I officially have the EDS diagnosis. I got some bloodwork on collagen and Im going in for an Echocardiogram sometime soon. Its not totally important to do right away so thats good.

Im blessed with some pretty good doctors at Kaiser.

Monday, March 15, 2010

another great link

TITLE: Epistaxis
SOURCE: Dept. of Otolaryngology, UTMB; Grand Rounds
DATE: October 16, 1996
RESIDENT PHYSICIAN: Stephanie Cordes, M.D.
FACULTY PHYSICIAN: Francis B. Quinn, Jr., M.D.
SERIES EDITOR: Francis B. Quinn, Jr., M.D.

"Delayed massive epistaxis following endonasal transsphenoidal surgery "

"Summary Objective. To describe delayed massive epistaxis, a rare but serious complication after transsphenoidal surgery.
Patients. Two patients underwent microscopic transsphenoidal surgery through a right endonasal approach for nonfunctioning pituitary adenoma. Severe epistaxis suddenly developed on day 8 and on day 13, respectively, after uneventful surgery. In each patient, the epistaxis was due to arterial haemorrhage from the left posterior nasal cavity. Otolarygologists failed to detect the origin of bleeding which was refractory to conservative treatment. Emergency internal carotid or external carotid angiography, performed during tight packing of the posterior nasal cavity, did not show abnormal findings; nevertheless, each patient was treated successfully by endovascular embolisation of the external carotid artery without further complication.
Conclusion. When severe delayed epistaxis follows transsphenoidal surgery and damage to the internal carotid artery has been ruled out, endovascular embolisation of the external carotid artery should be considered in patients refractory to conservative treatment. "

Saturday, March 13, 2010

maxalt to the rescue!

Had a terrible migrane since yesterday afternoon. Went to the Urgent Care near me and got Maxalt. Works great. Life is so much better without migraines... but im a bit sleepy because of it. totally worth the tradeoff...

Thursday, March 11, 2010

dr appointment

My Internest GP doctor appointment went really well. We went over all the bloodwork that was taken and Im happy to announce that there are no blood disorders including von willenbord disease! And they also tested already for any lupup and other similar disorders. The only thing is Im pretty anemic and Im restricted from any asprins and such. I got my GP to refer me to a geneticist to test for Ehlers Danlos officially. I have a few relatives with chronic pain and joint problems who also can move hypermobile like me so that helped my case. It also helped that I have a previous dx of Chiari Malformation and surgery. Every day Im gaining more energy. So good report.

Tuesday, March 09, 2010


von Willebrand disease
The most common symptoms include nosebleeds, skin bruises, and hematomas. Prolonged bleeding from trivial wounds, oral cavity bleeding, and excessive menstrual bleeding are common. Gastrointestinal bleeding is rare.
•A common but nonspecific symptom is easy bruising.
•Prolonged bleeding after minor trauma to skin or mucous membranes is characteristic of vWD.
Severe hemorrhage after major surgery is less common, but delayed bleeding may occur up to several weeks after surgery.
•Heavy bleeding is common after tooth extraction or other oral surgery, such as tonsillectomy and adenoidectomy.
•Menorrhagia is a common presenting complaint in women.
•Bleeding symptoms are often exacerbated by the ingestion of aspirin and are ameliorated by the use of oral contraceptives.
Physical examination findings are usually normal. However, patients may have physical sequelae, such as bleeding or bruises.
Link To Article

I want to be tested by a rheumetologist for SLE due to these past test results

Ehlers Danlos Syndrome
Refered to a geneticist to get specific dx for this. Hypermobility Demonstration


im having bad anxiety tonight. today my head pain was worse, took more percocet and was extra nautous. On top of that i was extreemly tired and napped pretty much the whole day. at one point i was shivvering and needed to have 2 blankets covering me to stop. the morning wasnt so bad when it felt like i was just sleeping in. but the evening brought its looming scent and now i worry,.. i took some ativan.

Monday, March 08, 2010

Getting Better

Every day Im gaining energy. The day after I came home I couldnt even lift my plate, but the following day I was able to put my plate in the sink. Today I made myself breakfast. Im sleeping alot a few of the days Ive been able to go out for a few hours. Yesterday I went to church. The percocet is definitely helping. today Im taking more of it since Im in a little more pain but I think that is due to me doing a bit more every day and reusing my muscles.

Thursday, March 04, 2010

uncontrollable bleeding after sinus surgery

Since Im too tired to write it nicely Im just reposting here what I have written so far about what has happened. Im getting suggestions from friends who are nurses and ones who have EDS and such to get tested for some things. Im making a list and hopefully can get my general doctor on board. Im pretty weak today.


I had a typical surgery for sinusitis. A week later got the packs removed. Last thursday my nose was hemroging. I lost and swallowed so much blood it was pretty scary. Went to er and had emergwncy surgery breathing tube and everythingm I was in icu for two day. Stayed in the hospital for two more with packing in my nose and terrible pain. Went in tuesday to see my ent to take out packing and bleed right away. Admitted again and sent in later that night for exploratory surgery to find source. They couldn't see anything on the surface so he decided to close off an artery so the bleeding would cease. So far so good. I have dissolvable packing now so there won't be any more problems taking it out. I'm on disability from work for a little while I recover.


had some prettty bad complications from my surgery. Last Thursday night around 2:30 my nose was bleeding so bad i had to call 911. They couldnt stop the bleeding until around 8am and the emergency ENT came and did some surgery. They almost had to give me a blood transfusion my blood count was so low. I was in the hospital until Monday with packs in my nose. On tuesday I wen tot see my ENT and he took the packs out but I started to bleed again. I was admittted in the hospital and that night they did exploratory surgery to see where the bleeding was coming from. The doctor had to tie off an artery that would have supplied the blood. Im home now and resting alot.
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