Okay..this has gotten to be ridiculous...It has been almost 12 weeks since my consultation with the specialists in NY...Let me tell you..I am happy I went there...I know that they know all about Chiari and Syringomyelia...However.....I have been back in SC now for 10 weeks and I can not continue on with my care, b/c I do not have these damn consultation reports....It's suppose to be 13 pages, and it is valuable for my care. Come on now...I am a New Yorker...I like to get things done... and accurately....you would think my physician would be on the ball too! 12 weeks is enough time...surgeon or not.
Anyway..after a phone call to the office...and some pressure from their administrator I think I may get my reports hopefully by next week...I will be very disappointed if they do not arrive.
I really should have went to med school..Seriously...I could have probably solved these things myself..Really...Harvard should give me an honorary medical degree from all the research I have done for years on this...Seriously
Sometimes I really wonder....are all these symptoms coming from the SM, CM, and the Cranial Settling? This condition is a real pain in the ass..I am having a hard time accepting all of this... is this what it's going to be like or worse...I am afraid that the sudden increase of my symptoms these past two months is signaling a growth of the SM or worse...Only way to really find out is for another series of MRI's and F/U with a Neuro...But I can't do that until I get my damn reports..b/c the chances are (based on my experience), that the quality of my visit with a Neuro w/o the consult report from TCI will be useless!
I just want to get to the bottom of all of this, get the answers, do something if I can about it..and continue on with my life. Ugh!
Thursday, July 16, 2009
Friday, July 3, 2009
REALLY....BAD WEEK
Well,
Ugh....YEAH, THIS WEEK HAS BEEN HELL...I DON'T KNOW WHAT IS GOING ON BUT I HAVE BEEN IN MORE PAIN THAN EVER. I THREW IN THE TOWEL AND HAD MY SISTER TAKE ME TO THE ER, B/C I COULDN'T TAKE IT....I THINK BY THAT POINT PSYCHOLOGICALLY I THOUGHT...THIS CAN NOT BE COMING FROM MY CONDITIONS....SO I WENT ANYWAY...WOUND UP IN THE ER..THE ER DOC WAS ONE OF THE MOST THOROUGH DOCTOR'S I HAVE EVER SEEN. SHE DIDN'T SEEM THAT FAMILIAR WITH SM AND CHIARI (AND I DID NOT EXPECT HER TO), SHE DID REQUEST THAT SHE WANTED TO SEE MY FILMS). BUT SHE DID KNOW EDS AND WAS CONCERNED THAT B/C I HAVE EDS THAT SINCE I HAD JAW AND FACE PAIN AND ARM PAINS..BASICALLY MY WHOLE UPPER BODY PAIN, INCLUDING THE BURNING...MAY BE AN INDICATION OF AN AORTIC DISSECTION, OR ANEURYSM..GREAT HUH?
SO ANYWAY I WAS HOOKED UP TO HEART MONITOR FOR 4 HOURS, HAD AN EKG, BP CHECK EVERY 10 MINS, LOTS OF BLOOD WORK, INCLUDING CARDIAC ENZYME WORKUP, AND A CTA OF MY AORTA AND OTHER VESSELS. ANYONE WHO KNOWS ME I AM CLAUSTROPHOBIC, BUT THIS WASN'T BAD, IT WAS THE DYE THEY INJECTED ME WITH THAT FREAKED ME OUT...THIS DYE BURNED LIKE HELL AND IT FELT AS IF I WAS PEEING MYSELF B/C IT IS QUICKLY PUMPED THROUGH YOUR BLOODSTREAM..SO IT KIND OF FREAKED ME OUT AND I HAD A HUGE PANIC ATTACK ON THE TABLE. UGH...IT WAS FUNNY AFTERWARD..ANYWAY ..NO AORTIC DISSECTION, AND ER DOCTOR SAID EVERYTHING LOOKED GREAT...
.I HAVE TO BE AWARE OF HIATAL HERNIAS AND SHE SAID PRILOSEC (JUST TO SEE IF IT'S INDIGESTION)..SHE SAID SHE DOESN'T THINK THAT MY SYRINGOMYELIA IS THE CAUSE "B/C IT'S SO SMALL"...I HATE THAT....BUT SHE DID ADMIT TO NOT KNOWING A LOT ABOUT IT SO BE SURE...AND THOSE WHO ARE FAMILIAR AND WHO SIT IN MY BOAT, KNOW THAT SIZE-SERIOUSLY-DOES NOT MATTER (AT LEAST HERE ;) IT IS NOT THE SIZE OF YOUR SM OR THE HERNIATION OR ABSENT HERNIATION OF YOUR CHIARI THAT REALLY DETERMINES THE PAIN..ANY NL OR NS SPECIALIZING IN CHIARI/SM AND RELATED DISORDERS KNOW THIS.
SO SHE REFERRED ME TO A NL..AND SUGGESTED MAYBE I DO ANOTHER MRI TO SEE IF MY SYRINX HAD PROGRESSED WITHIN THE SIX MONTHS. AND I THINK I AM GOING TO TRY HIM OUT...B/C I DO NEED TO BE FOLLOWED BY A NS HERE...IT'S JUST THAT A LOT OF THEM STILL GO BY THE OLD TEACHINGS THAT CHIARI HAS TO BE DIAGNOSED BY 5MM HERNIATION, SYRINX IS TOO SMALL IF 2MM...ETC. ETC. ETC.
SO I FOUND MYSELF A LITTLE DEPRESSED B/C I KIND OF FEEL LIKE...WELL AT LEAST IF IT WAS AN AORTIC DISSECTION...WE KNOW HOW TO FIX IT...EMERGENCY SURGERY(RISKY), BUT I WOULD HOPEFULLY BE CURED AND NO PAIN!!! LUCKILY IT WASN'T AORTIC DISSECTION, BUT UNFORTUNATELY THE PAIN IS STILL HERE AND I GUESS I AM HAVING TO ACCEPT IT....AND MAY HAVE TO TAKE SOMETHING DAILY FOR THE PAIN IF THINGS DON'T CALM DOWN....I DON'T LIKE GIVING UP A FIGHT..AND I AM NOT GOING TO...THIS IS WHY I AM ON HERE...
...I WANT PEOPLE TO KNOW THAT I AM TRYING TO BE STRONG, AND I HAVE A FAMILY AND I AM NOT GOING TO LET THIS RUIN MY LIFE AND BRING ME DOWN. IT WAS SO NICE COMING HOME TO MY SON AND HUSBAND FROM THE HOSPITAL AND THAT'S WHAT'S IMPORTANT IN MY LIFE.
THANK YOU TO TARYN AGAIN....(IF YOU ARE READING THIS) WHO TOOK ME TO THE ER AND STAYED WITH ME AND DROVE US HOME (20MPH!)..AND OF COURSE MY HUSBAND WHO BROUGHT MY FILMS TO HOSPITAL AND HELD MY HAND DURING MY CTA (WHILE I FREAKED OUT), AND MOM FOR WATCHING AIDAN.
TRISH
Ugh....YEAH, THIS WEEK HAS BEEN HELL...I DON'T KNOW WHAT IS GOING ON BUT I HAVE BEEN IN MORE PAIN THAN EVER. I THREW IN THE TOWEL AND HAD MY SISTER TAKE ME TO THE ER, B/C I COULDN'T TAKE IT....I THINK BY THAT POINT PSYCHOLOGICALLY I THOUGHT...THIS CAN NOT BE COMING FROM MY CONDITIONS....SO I WENT ANYWAY...WOUND UP IN THE ER..THE ER DOC WAS ONE OF THE MOST THOROUGH DOCTOR'S I HAVE EVER SEEN. SHE DIDN'T SEEM THAT FAMILIAR WITH SM AND CHIARI (AND I DID NOT EXPECT HER TO), SHE DID REQUEST THAT SHE WANTED TO SEE MY FILMS). BUT SHE DID KNOW EDS AND WAS CONCERNED THAT B/C I HAVE EDS THAT SINCE I HAD JAW AND FACE PAIN AND ARM PAINS..BASICALLY MY WHOLE UPPER BODY PAIN, INCLUDING THE BURNING...MAY BE AN INDICATION OF AN AORTIC DISSECTION, OR ANEURYSM..GREAT HUH?
SO ANYWAY I WAS HOOKED UP TO HEART MONITOR FOR 4 HOURS, HAD AN EKG, BP CHECK EVERY 10 MINS, LOTS OF BLOOD WORK, INCLUDING CARDIAC ENZYME WORKUP, AND A CTA OF MY AORTA AND OTHER VESSELS. ANYONE WHO KNOWS ME I AM CLAUSTROPHOBIC, BUT THIS WASN'T BAD, IT WAS THE DYE THEY INJECTED ME WITH THAT FREAKED ME OUT...THIS DYE BURNED LIKE HELL AND IT FELT AS IF I WAS PEEING MYSELF B/C IT IS QUICKLY PUMPED THROUGH YOUR BLOODSTREAM..SO IT KIND OF FREAKED ME OUT AND I HAD A HUGE PANIC ATTACK ON THE TABLE. UGH...IT WAS FUNNY AFTERWARD..ANYWAY ..NO AORTIC DISSECTION, AND ER DOCTOR SAID EVERYTHING LOOKED GREAT...
.I HAVE TO BE AWARE OF HIATAL HERNIAS AND SHE SAID PRILOSEC (JUST TO SEE IF IT'S INDIGESTION)..SHE SAID SHE DOESN'T THINK THAT MY SYRINGOMYELIA IS THE CAUSE "B/C IT'S SO SMALL"...I HATE THAT....BUT SHE DID ADMIT TO NOT KNOWING A LOT ABOUT IT SO BE SURE...AND THOSE WHO ARE FAMILIAR AND WHO SIT IN MY BOAT, KNOW THAT SIZE-SERIOUSLY-DOES NOT MATTER (AT LEAST HERE ;) IT IS NOT THE SIZE OF YOUR SM OR THE HERNIATION OR ABSENT HERNIATION OF YOUR CHIARI THAT REALLY DETERMINES THE PAIN..ANY NL OR NS SPECIALIZING IN CHIARI/SM AND RELATED DISORDERS KNOW THIS.
SO SHE REFERRED ME TO A NL..AND SUGGESTED MAYBE I DO ANOTHER MRI TO SEE IF MY SYRINX HAD PROGRESSED WITHIN THE SIX MONTHS. AND I THINK I AM GOING TO TRY HIM OUT...B/C I DO NEED TO BE FOLLOWED BY A NS HERE...IT'S JUST THAT A LOT OF THEM STILL GO BY THE OLD TEACHINGS THAT CHIARI HAS TO BE DIAGNOSED BY 5MM HERNIATION, SYRINX IS TOO SMALL IF 2MM...ETC. ETC. ETC.
SO I FOUND MYSELF A LITTLE DEPRESSED B/C I KIND OF FEEL LIKE...WELL AT LEAST IF IT WAS AN AORTIC DISSECTION...WE KNOW HOW TO FIX IT...EMERGENCY SURGERY(RISKY), BUT I WOULD HOPEFULLY BE CURED AND NO PAIN!!! LUCKILY IT WASN'T AORTIC DISSECTION, BUT UNFORTUNATELY THE PAIN IS STILL HERE AND I GUESS I AM HAVING TO ACCEPT IT....AND MAY HAVE TO TAKE SOMETHING DAILY FOR THE PAIN IF THINGS DON'T CALM DOWN....I DON'T LIKE GIVING UP A FIGHT..AND I AM NOT GOING TO...THIS IS WHY I AM ON HERE...
...I WANT PEOPLE TO KNOW THAT I AM TRYING TO BE STRONG, AND I HAVE A FAMILY AND I AM NOT GOING TO LET THIS RUIN MY LIFE AND BRING ME DOWN. IT WAS SO NICE COMING HOME TO MY SON AND HUSBAND FROM THE HOSPITAL AND THAT'S WHAT'S IMPORTANT IN MY LIFE.
THANK YOU TO TARYN AGAIN....(IF YOU ARE READING THIS) WHO TOOK ME TO THE ER AND STAYED WITH ME AND DROVE US HOME (20MPH!)..AND OF COURSE MY HUSBAND WHO BROUGHT MY FILMS TO HOSPITAL AND HELD MY HAND DURING MY CTA (WHILE I FREAKED OUT), AND MOM FOR WATCHING AIDAN.
TRISH
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