Aa
Who thought they would be so hard to find....
Neurologists that had a clue........finding a neuro that specializes in this is a lot harder than I thought. of course there is the standard...drive to Jacksonville to Mayo, they seem to be the closest, fly to NY, CO, gonna keep earching for now... Anyone have any ideas for Central Florida near Tampa?
You sure aren't kiddin'... lol...big grin! I am a little worried though...my neurologist that discovered this while trying to diagnose this "irretractable migraine" is young and so dead set about me not going back to work. I understand why and it is scary, but I still can't help but to keep a very positive outlook. Things happen for a reason and soon I will find a new ability I didn't know I had, and probably wouldn't have if this didn't happen.
I just hope he (the neuro) will work with me when I tell him I am going to see a specialist.
I just hope he (the neuro) will work with me when I tell him I am going to see a specialist.
You asked; "Who thought they would be so hard to find...."
Turns out all of us on her could have told you that :D
Turns out all of us on her could have told you that :D
Working in the medical profession has proven to be a blessing for me. Not only has it helped me to understand the language used, but the doctors handwriting as well...hahaha... with all that aside I have the difference that a positive attitude can make in any condition. I just hope more people will/can keep that positive outlook and not let this get the better of them!
COMMUNITY LEADER
Wonderful news!!..it is great to finally find a dr u r comfortable with and knows about ur condition.Also ask for an MRI of ur lumbar spine to rule out tethered cord.
flcrakar- U have a great attitude that;ll help u alot : )
I was not aware that a medic and a fireman had the same responsibilities......but I knew that it is a diff job for ne one with chiari.
I had a stressful job as HR in a retail store and had to leave.....as this progresses, even simple jobs can bcome very diff to do.....it is not the tasks them selves but the hours that can leave u so tired u can not function.
I pray all goes well for u!!
"selma"
flcrakar- U have a great attitude that;ll help u alot : )
I was not aware that a medic and a fireman had the same responsibilities......but I knew that it is a diff job for ne one with chiari.
I had a stressful job as HR in a retail store and had to leave.....as this progresses, even simple jobs can bcome very diff to do.....it is not the tasks them selves but the hours that can leave u so tired u can not function.
I pray all goes well for u!!
"selma"
I am thankful for all your information! You are a wealth of knowledge. It is pretty wild to think that we can live with such a restriction, be so active an the out of the blue.....our body says..."OK....Time out!" lol.....gotta keep a sense of humor about it....crying makes my head feel like it will explode. Don't quite understand why, but that's ok, just know..it is on the "note to self...don't do that it hurts BAD!" page in my brain...lol.
Well the more I read and learn, the more excited I am about making the trip to NY and finally learning why, and what options are avail to me. Even if it isn't surgery and I have to take a desk job (YUCK!). But that is ok...at least I am alive, I can see the sun rise and set everyday and watch my beautiful daughter grow up to be a wonderful lady and grow old with my husband. Those are the most important things in my life! The rest is jut trivial when it comes down to it!.... KEEP SMILING!!
Well the more I read and learn, the more excited I am about making the trip to NY and finally learning why, and what options are avail to me. Even if it isn't surgery and I have to take a desk job (YUCK!). But that is ok...at least I am alive, I can see the sun rise and set everyday and watch my beautiful daughter grow up to be a wonderful lady and grow old with my husband. Those are the most important things in my life! The rest is jut trivial when it comes down to it!.... KEEP SMILING!!
Just wanted to say that I met with a pediatric Chiari specialist and MCV (medical college of Virginia) yesterday and he was absolutely wonderful....he was patient, knowledgeable and did not disregard any of my symptoms or concerns. He has ordered further MRI's to determine the severity of the CSF blockage and to check for syrinx. He went over each MRI image one by one with me and explained things in detail!!! His name is Dr. John Ward...MCV has a website if you want to check it out...half way to NY!!! He has significant experience with this condition and has successfully completed numerous surgeries related to CM :)
COMMUNITY LEADER
The Drs at TCI r great!!...The staff could be tons better than they r, but that said...I am glad that I went there and had my surgery.I had Dr Salvatore Insinga and I really like him.I spent over an hour and a half talking with him during my eval visit....he called me 3 times at home to ask and answer questions.....
I too had symptoms for many yrs and was very active, but as I got older I was slowing down and compensating for the way I felt.
And size of the herniation is not the main issue....yes some have a very large herniation, but if it is long and thin then most times this person will not have many issues...but someone like urself with a smaller herniation it can be wider causing a CSF blockage and more symptoms as a result.
I am sure other members will pop on to explain it also, but my herniation was 4mm on one side and 6 mm on the other.
TCI looks at symptoms and how much blockage u have and those most in need tend to get in a bit faster.....I am paraphrasing what I heard the receptionist say to someone that called asking about the MRI's they had sent.
U should have copies of all ur MRI's plus the reports....the MRI's that should be done are Brain MRI w/wo contrast....cervical spine, thoracic and lumbar spine....and CINE MRI.
Just know we r all different in the way we respond to treatment and that is all the surgery is....treatment to slow the progression of this condition. Once u have chiari u wil always have chiari.
I hope I answered all ur questions...if not ask again.....I do tend to forget somethings.
"selma"
I too had symptoms for many yrs and was very active, but as I got older I was slowing down and compensating for the way I felt.
And size of the herniation is not the main issue....yes some have a very large herniation, but if it is long and thin then most times this person will not have many issues...but someone like urself with a smaller herniation it can be wider causing a CSF blockage and more symptoms as a result.
I am sure other members will pop on to explain it also, but my herniation was 4mm on one side and 6 mm on the other.
TCI looks at symptoms and how much blockage u have and those most in need tend to get in a bit faster.....I am paraphrasing what I heard the receptionist say to someone that called asking about the MRI's they had sent.
U should have copies of all ur MRI's plus the reports....the MRI's that should be done are Brain MRI w/wo contrast....cervical spine, thoracic and lumbar spine....and CINE MRI.
Just know we r all different in the way we respond to treatment and that is all the surgery is....treatment to slow the progression of this condition. Once u have chiari u wil always have chiari.
I hope I answered all ur questions...if not ask again.....I do tend to forget somethings.
"selma"
I understand some...not all of couse, still much to learn. His job and mine are actually the same. That is why I have to stay/keep optimistic. Our profession is universal in our tasks and the risks with or with a Chiari are our life for someone elses. We know when we leave for a call it could be our last. First you just have to make it through the traffic to get to the call...lol...that is a life danger in itself...(big chuckle)..sorry my ems/fire sense of humor doesn't always cross over to everyday life.
Not just that...but it is kinda hard to accept that I have had symptoms that I can document back to my early 20's and I am now 35. I have had a pretty hardcore active outdoor, hunting, fishing, skydiving, firefighting, ....ect lifestyle...guess I have been pretty lucky. I just see other people that have greater than 5mm herniations and I can't help but think why am I complaining, it can't be that bad?!
I am however excited to hear you went to TCI. You liked it there? Tell me more!.... It looks like they have so much experience there. How long does it usually take to get an appointment? Are they nice? Do they rush?...Oh sorry I am like a little kid.....
Not just that...but it is kinda hard to accept that I have had symptoms that I can document back to my early 20's and I am now 35. I have had a pretty hardcore active outdoor, hunting, fishing, skydiving, firefighting, ....ect lifestyle...guess I have been pretty lucky. I just see other people that have greater than 5mm herniations and I can't help but think why am I complaining, it can't be that bad?!
I am however excited to hear you went to TCI. You liked it there? Tell me more!.... It looks like they have so much experience there. How long does it usually take to get an appointment? Are they nice? Do they rush?...Oh sorry I am like a little kid.....
COMMUNITY LEADER
HI...read ur post to Peachy...I just had my surgery at TCI in NY and really really liked my NS.....but I wanted to remind u ...there is no cure for chiari....just treatments to slow the progression.
Plus I am sure the medic's job is a bit different than yours.....I do have a BIL that is in a family of firemen....all his brother's and himself....total 5....plus their father and grandfather were firemen.....my dad was a fire alarm operator b4 911 took over....and then my father was superintendent of the comcenter...so I do know a bit about what a firefighter does and what all is involved......
U may feel better after surgery to return to duty, but u will be putting urself at risk.I know u do not want to think about that, but it is what it is.And I am sure the drs at TCI will concur.
My Dr was Dr Salvatore Insinga.....Zipperhead0609 was my roommate and had the same surgeon, but hers was a redo someof other surgeon's work.
If u have ne questions......about TCI please ask....there is a great place nearby for family to stay for $25 a night!!
"selma"
Plus I am sure the medic's job is a bit different than yours.....I do have a BIL that is in a family of firemen....all his brother's and himself....total 5....plus their father and grandfather were firemen.....my dad was a fire alarm operator b4 911 took over....and then my father was superintendent of the comcenter...so I do know a bit about what a firefighter does and what all is involved......
U may feel better after surgery to return to duty, but u will be putting urself at risk.I know u do not want to think about that, but it is what it is.And I am sure the drs at TCI will concur.
My Dr was Dr Salvatore Insinga.....Zipperhead0609 was my roommate and had the same surgeon, but hers was a redo someof other surgeon's work.
If u have ne questions......about TCI please ask....there is a great place nearby for family to stay for $25 a night!!
"selma"
ok...so lots of stuff to read....mostly all the same repeated over and over and over....well you understand.....yesterday tough....lots of realizations, emotions...ect..today...mad and on a mission!!! going to find a way! Want my life back... met a Firemedic he had surgery and is back on the job and doing great! Wonderful optimism for me...I know from my own past medical hx any surgery is not 100% the cure...and that nothing is 100% but it is a positive in a world of too much negative! I am an optimist by nature anyways. So I am seriously looking into the Chiari institute in NY. Long way from home, but so much experience there.
I used to live in Tampa, how cool. I still live on the Gulf now in MS, but yeah we have to travel to get help. It's a fact, sort of like falling down. *****. but true.
COMMUNITY LEADER
HI...I know there is a Dr Green I believe in Miami......unfortunatly most of us do have to travel to get to a chiari specialist.
I will see if I can get more info if u r interested...let me know, but u should really do research b4 u decide to go......I do not know much, except his name has been brought up in chiari circles.....
"selma"
I will see if I can get more info if u r interested...let me know, but u should really do research b4 u decide to go......I do not know much, except his name has been brought up in chiari circles.....
"selma"
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