Experience with new Neurologist and Rheumy...Disaster and Hope

I know this is quite long...thank you so much for taking the time to look through it:

(I was scheduled for Dr. Clair Francomano..Connective tissue specialist in Baltimore, MD, but I did cancel, b/c I felt I could not physically sit in a car for 12 hours, which would be the third 12-14 road trip in 3 months. So I scheduled a new appt w/ a Connective tissue physician here in SC at the Medical University of SC, and a consult with a NS to help me manage my pain from the SM...but that appointment was anything but successful.) Read on........

Well just got back from two new consultations at Charleston , SC. My husband and I drove down (only about 3 hr drive), and made a vacation out of it and stayed on the beach…Glad we did b/c we needed it after all the stress and all.

So I saw a Rheumatologist about the possible EDS, and a new NS regarding the Syrinx, and management for it. I feel I really got no answers and I just feel like throwing my hands in the air and saying “F- it”!!

So I saw a Rheumy at the MUSC in Charleston…If you would like her name, e-mail me and I will happily give you any of these physicians names.

Since this is a teaching hospital…(and I don’t know how I feel about me going to this type of appt. again), you see a resident first, they try to gather all the info..Then you see the attending physician

.I have to say the Rheumy appt went okay….she did not think I have EDS, and I did not have a score of 9/9 as was done at the TCI.

My knees were not lax and only one of my elbows was. She looked at some of my scars, including my c-section scar and said it was normal. She pulled on my skin and did see some stretchy skin, but nothing that REALLY was stretchable, that really stood out.

So in the end her conclusion is she does not think I have EDS, but she is absolutely NOT opposed and supports me in doing the Genetic Testing that would R/O the connective tissue issue.

There are just some things that bother me and correspond w/ things in my medical History (such as hernia, and congenital hip dysplasia, and the disc desiccation in my spine).

She said she would research further and get back to me and write me a Rx for the testing I wanted. I like having options and I like ruling things out, so I think this appointment went okay, b/c I feel that I still have my hands in advocating for myself and still being in charge of my healthcare.

She did say that I need more sleep, and to try exercising, which I am going to try. I am always so afraid to exercise and have a flare up, b/c that’s what happened last time… I thought about trying Yoga…Have any of you tried Yoga?

And She did write me a Rx for PT, to help strengthen my upper body joints and for massage w/ spasms etc. etc.

So All in all…it was an outcome that I could agree with and I was happy with that….

BUT the new NS appointment was a disaster:

Again this is a teaching hospital so I saw the resident…she asked some questions, had me do the “DUI Walk” as she called it, had me hold my hands out and took my films to review with attending.

So in walks this man, a nurse and the resident. The NS sits down in the chair. He never examined me…did not even touch me (except when I offered my hand to shake his in the beginning and end)

.He straight out told me that he though all my symptoms were coming from my neck, b/c of the loss of the cervical lordosis( in general terms my neck is “straight”)….which I agree with him on that that my neck is straight and there are some issues going on there.

But to say that this is the etiology of all my symptoms is completely hard for me to believe. He said he has seen several TCI patients, and basically what they tell us is all garbage, and that even if a person’s tonsils are a tiny bit off…that they will call you Chiari “O”…

He said I DO NOT have a Chiari and that my so called “syrinx” is not a syrinx…this is what he told me:

“It is not associated w/ a Chiari, or a Tumor and you did not have any trauma to your spine; there is not cause for you to have a syrinx”. “That is not a syrinx; a syrinx that fills up the spinal cord with a tumor…now that is a syrinx”. “But what you have does not impress me, so you can just forget about the syrinx”.

When I tell you I wanted to come up out of my chair and just plant him one real hard…I really did want to. Obviously that would be the wrong thing to do. So then I just thought about walking out, and then I felt that feeling like you are about to cry. Just all these emotions and thoughts at once…. My husband just looked at me in horror b/c he knew I was going to blow.

So this physician started to continued on, and I stopped him and said ”NO I AM NOT GOING TO JUST “FORGET” ABOUT THE SYRINX…..why should I? (The Nurse, Resident and Doctor and even my husband just looked at me like I had 2 heads) And I continued on to say:” You are telling me that what I have is not a syrinx? Then what do you call it?( He would call it “Asymptomatic Hydromyelia”…which essentially is the same Shit, only he is telling me that the symptoms I have are not from this “cavity that did not close all the way when I was coming together IN MY MOTHERS WOMB!!!) I told him…”Then you explain to me why in 2004 I had all the symptoms has an MRI that showed a 1mm (small I will give it that)syrinx from T5-T9, and I still continue to have all the pain and symptoms and in 2008---Just last year, I had another MRI that showed a 2-3mm Syrinx from T4-T9? Why”?

He paused and pretty much told me that it could be from different MRI machines and MRI is never 100% accurate...blah blah blah..and that having more MRI's is a waste of time and money…I shook my head at him, and told him I did not agree with him and I want annual MRI’s to check on my SYRINX

I am not a doctor guys…but I will tell you this…it does not take any one of us to have ANY medical experience to know our bodies, to know in our heart that SOMETHING is not normal.

What I know from seeing this guy is that yes, he is a Brain Surgeon. He might be a pretty damn good brain Surgeon, HOWEVER: Don’t walk into his office with anything less than 5mm syrinx…and don’t even think about walking in with a Chiari “O” or anything less than5-7mm of herniation.

And….make sure you put on your clown shoes and clown nose, b/c he likes to be impressed!

I really believe that b/c he operates on skull base tumors, he probably DOES see patients w/ Syringes and SM, but they are probably rather large syringes, b/c of tumors, so I do believe him when he says a small syrinx does not “impress” him.

But to tell a patient “just forget about the syrinx” is NEGLECTFUL, and poor judgment as a physician and a moral minded person.

On a scale of 1-10 on his bedside manners….he would get a 2..only b/c he smiled one time.

He told me to take some Aleve and to go to PT for traction on my neck. I do know I need some PT on my neck, but I am not going to “forget” about my SYRINGOMYELIA, b/c he is not impressed.

What is SCARY is this:

He also told me I can lift over 20lbs, I can strain during a bowel movt, I can lift my son up as much as I want, I can lift weights and I can have a vaginal delivery and I can have an epidural or spinal.

I left that office in tears, my husband just looked at me and I know he was frustrated too…

But all in all, I AM HAVING another MRI in November to check the size of my Syrinx, and I will try and figure out the whole PT thing, that is safe for me, and I will R/O the connective tissue issue.

But what eats me up inside and makes me want to bang my head through a wall is that this Jerk didn’t even touch me, never did an examination, never touched me, and I will get a bill for God knows what now and he just sat on his ass and told me he wasn’t impressed.

I will NEVER see him again, and I don’t have a medical degree, but he is wrong about the syrinx, I know I have Syringomyelia and I know that the Syrinx DID grow…and I am not going to just go around lifting cars and pushing 100lb shopping carts and let some anesthesiologist stick some needle in my back b/c some Moron Doctor is not impressed.

I am sorry…I just needed to vent, I haven’t been able to since we left the office on Thursday, and then I told my hubby let’s not let it ruin our weekend at the beach, so I honestly did not even think about it until last night when I got back home. But I did have the best time at the beach with my hubby. I am just frustrated and I know some of you, actually a lot of you have gone to these doctors and you leave frustrated as well.

Now I really understand what that is like and all of my heart goes out to you, and if you know what is right in your heart…keep fighting, keep searching, don’t give up, keep fighting.

Thanks ..and if you read this very long vent…thank you for reading it

Take Care, Thoughts and Prayers
Trish

WANT TO GET TO THE BOTTOM OF ALL OF THIS

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!

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..BAD WEEK

WELL...IT'S BEEN A PRETTY TRYING WEEK SO FAR...I AM STILL TRYING TO OBTAIN MY CONSULT NOTES FROM 9 WEEKS AGO. WITHOUT THESE, MY HANDS ARE TIED IN MAKING FOLLOW UP APPOINTMENTS WITH MY PHYSICIANS HERE IN SC. I HAVE BEEN IN A GOOD AMOUNT OF PAIN LATELY...AND HAVE TAKEN OUT THE TRAMADOL TO TRY SOME...BUT FOR ANYONE WHO KNOWS ME WELL..I WILL FIGHT BEFORE I TAKE ANYTHING THAT MAY HAVE WEIRD SIDE EFFECTS OR MAKE ME FEEL "OUT OF IT"...I REFUSED PAIN MEDS AFTER MY C-SECTION..UNTIL A DAY LATER..AND I WOULD ONLY TAKE IBUPROFEN....TYLENOL IS JUST NOT WORKING FOR THIS PAIN.... NEVER DOES...JUST TAKES A SLIGHT EDGE OF FOR A FEW HOURS. I HATE EVEN TAKING TYLENOL, AND PROBABLY WILL HAVE TO COME UP WITH A DIFFERENT GAME PLAN FOR PAIN MANAGEMENT B/C FDA IS NOW SUGGESTING LOWERING THE DOSE OF THE ACETAMINOPHEN IN TYLENOL. WELL THAT'S NICE OF THEM..DONTCHYA THINK? MY LIVER THANKS THEM AS WELL...ALL HUNCHED OVER AND POISONED.!!

SOMETIMES IF MY PAIN IS BAD...I WILL TAKE A HOT BATH...I USUALLY HOLD OUT AND DO THIS AT NIGHT, ESPECIALLY WHEN THE LITTLE ONE IS SLEEPING...BUT MY SISTER CAME OVER THE OTHER DAY..AND I WAS HAVING A REAL HARD TIME, AND I GOT TO RELAX AND JUST LET THE HEAT HELP FOR ABOUT 20 MINS. IT HELPED AND WAS NICE. THE PAIN I HAVE BEEN FEELING LATELY IS THE FACE AND NECK AND PAIN IN BASE OF HEAD..AND JUST OVERALL UPPER BODY PAIN. BURNING PAIN. SINCE I UNDERSTAND THE PHYSIOLOGICAL REASON WHY I FEEL THIS PAIN, I GUESS IT MAKES IT A LITTLE BETTER, THAN WONDERING "WHAT THE HELL"?! IT'S ALSO NICE TO GET MASSAGES WHEN NEEDED B/C IT DOES HELP ALSO. MY POOR HUSBAND DOESN'T TOTALLY AGREE, BUT WHATEVER HE DOES HELPS. IT'S REALLY HARD TO GO THROUGH YOUR BAD DAYS, BUT THEY GET BETTER AND BETTER AND YOU HAVE TO KNOW YOU ARE NOT ALONE. I AM LUCKY TO HAVE GOOD SUPPORT AND ESPECIALLY MY LITTLE ONE. HE KEEPS ME GOING AND PUSHES ME AND EVEN WHEN I AM HAVING A "BAD" DAY...HIS SMILE AND LAUGH..WARM ME UP. SO IF YOU ARE HAVING A BAD DAY, OR WEEK..TRY TO KEEP YOUR CHIN UP....AND KNOW YOU ARE NOT ALONE.

OPENING

WELL,

WELCOME TO MY BLOG.....I HAVE NEVER DONE THIS BEFORE, SO BE PATIENT WITH ME WHILE I GET THE HANG OF THINGS. HOPEFULLY IN ABOUT A YEAR I'LL BE AN EXPERT. WELL YOU KNOW WHAT THIS BLOG IS ABOUT AND I REALLY HOPE I GIVE PEOPLE INSIGHT AS TO WHAT IT MEANS TO BE IN MY BODY. YOU MAY HAVE IT YOURSELF..NOT EVEN KNOW IT, YOU MAY HAVE A LOVED ONE WITH ONE OR MORE OF MY DISORDERS, OR MAYBE YOU JUST WANT TO EDUCATE YOURSELF....WELL YOU ARE SO WELCOME HERE IN MY BLOG LIVINGROOM. YOU'LL SEE I WILL HAVE MY GOOD DAYS, MY BAD, AND IT'S ALL PART OF THIS EXPERIENCE.

AS YOU KNOW I DO HAVE SYRINGOMYELIA, CHIARI MALFORMATON AND EHLER'S DANLOS SYNDROME. HERE ARE THE OTHER CONDITIONS I HAVE AS WELL: DEGENERATIVE DISC DISEASE(LUMBAR), SPINAL DYSRAPHISM (A FORM OF SPINAL BIFIDA), AND CRANIAL SETTLING. CAN'T WAIT TO SEE WHAT I'M LIKE AT 60..HAHA..

AS IT STANDS RIGHT NOW....I AM AWAITING MY CONSULATION REPORT FROM THE CHIARI INSTITUTE, WHICH WAS 7 WEEKS AGO. MY HANDS ARE TIED WITH SEEING ANY FOLLOW UP PHYSICIANS AT THIS TIME. I DO HAVE AN EXTREMELY IMPORTANT APPOINTMENT WITH DR. FRANCOMANO IN SEPTEMBER FOR THE EDS. SHE IS SUPPOSE TO BE THE BEST IF NOT ONE OF THE BEST, AND KNOWS THE LINK BETWEEN CHIARI AND EDS, AND IS FAMILIAR WITH SM. SO UNTIL THEN I AM TRYING TO MANAGE THE PAIN AND JUST GET THROUGH EACH DAY AS NORMAL AS POSSIBLE.

SO THAT'S RIGHT NOW....LATER