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What to Do & Where to Go now?
Two wks ago I was diagnosed with Chiara 1 Malformation with 10mm extension and the neurologist I saw told me it was nothing to be concerned about and probably not the cause of my MS-type symptoms. Not having ever heard about Chiari, I hit the internet and came across lists of symptoms that I have experiencing for the last 3 yrs and that explained some of the other things I have felt from time to time over the past 10 yrs or more. I had a brain MRI and the 3 spinal MRI's done 3 years ago by the same neurologist I just saw to rule in or out MS, and he looked back at them and said there was no report of Chiari at that time. Does my recent diagnosis indicate my condition has worsened and what do I do with the information I now have? This neurologist has me on Lyrica for the nerve pain...does this sound OK with any of you? FYI, the brain MRI was ordered by my PCP following a stroke-like episode. Thanks in advance for any info/help anyone can give me.
COMMUNITY LEADER
Hi Jean...yeah it is funny how many of us find things in comon.
The 10th is a popular date around here..and it went fast at alot of places.
My DD is planning an outdoor ceremony and in the reception venue if it should rain.
"selma"
The 10th is a popular date around here..and it went fast at alot of places.
My DD is planning an outdoor ceremony and in the reception venue if it should rain.
"selma"
My Oct 10 couple is also playing the numbers game and because Sundays aren't as popular for weddings that date was available to them. They also have a very short guest list (about 50) and they don't dance (no DJ) or drink (yep, an alcohol-free dinner reception), they are using a medium-sized private room at a restaurant as their reception venue. They still haven't decided whether they will try and brave on outdoor ceremony or have the restaurant set up an altar area in the banquet room. This weekend would have been awful for an outdoor wedding!!
Loved to discover we have more than Chiari in common!!!!!
Jean
Loved to discover we have more than Chiari in common!!!!!
Jean
COMMUNITY LEADER
Hi....well I was a florist for over 20yrs....then had my own Bridal Consutlant business...where I ran all the details....DJ, limo's...porta potties if needed...ect
I also sold Carlson Craft, Stylart, wedding invitations and stationary.'
I was also a Bridal Consultant for a retail store doing bridal registries.
Floral design comes with lifting heavy buckets of water with flowers in them,.....I will be doing all the flowers and such for my DD.... the last I did a large wedding is a few yrs due to my condition and the ability to lift.
The wedding will be on the first.....my DD is in to numbers and wanted the 10th...it wasn't available so the 1st was the next best thing 10-01-10.....instead of 10-10-10
"selma"
I also sold Carlson Craft, Stylart, wedding invitations and stationary.'
I was also a Bridal Consultant for a retail store doing bridal registries.
Floral design comes with lifting heavy buckets of water with flowers in them,.....I will be doing all the flowers and such for my DD.... the last I did a large wedding is a few yrs due to my condition and the ability to lift.
The wedding will be on the first.....my DD is in to numbers and wanted the 10th...it wasn't available so the 1st was the next best thing 10-01-10.....instead of 10-10-10
"selma"
I have an Ohio state licensed officiant since June 2002 and have performed 88 wedding ceremonies since then. I travel to where ever in the state of Ohio my couples are getting married. My dream-then-goal-and now a dream again is to have my own wedding chapel. It was a goal my husband & I were financially working towards, but we've been hit with a double whammy this year. We discovered he has a serious heart issue and that used up alot of the $$ we were setting aside, and now my dx is taking another bite out of that account.
As a certified Bridal Consultant since Feb. 2003, I help my couples with their planning/vendors and have also acted solely as a wedding planner for three weddings. I have also been a wedding co-ordinator but not the planner or officiant for four brides. I am also a Carlson Craft dealer in addition to putting my computer and scrapbooking skills to use to create wedding stationery. I LOVE it all, but have had to cut back quite abit in the last two years. I only have 5 ceremonies on the calendar for 2010 and will be doing programs and reception stationery for one other wedding.
It does get me down sometimes to have to limit myself so much. I was talking with a local bridal shop owner about working Sundays & Monday nights for him so he could have his shop open more hours, but the bending over and having to get up and down off the floor and carry heavy wedding dresses is too much of a task w/my symptoms. I may still attempt the flower arranging classes one of my florist vendors has offered me, but I'm not real sure about that right now either. I have been lucky so far that I have not had any bad episodes either during a ceremony, consultation or rehearsal yet.
What day in Oct. is your wedding? I have one for Oct 2nd and one on the 10th. How have you been active in the wedding industry? I'm sure there is a lot of planning for you for next October, but it will is a joyous celebration to work towards. The best of luck & fun in your planning!!
Jean
As a certified Bridal Consultant since Feb. 2003, I help my couples with their planning/vendors and have also acted solely as a wedding planner for three weddings. I have also been a wedding co-ordinator but not the planner or officiant for four brides. I am also a Carlson Craft dealer in addition to putting my computer and scrapbooking skills to use to create wedding stationery. I LOVE it all, but have had to cut back quite abit in the last two years. I only have 5 ceremonies on the calendar for 2010 and will be doing programs and reception stationery for one other wedding.
It does get me down sometimes to have to limit myself so much. I was talking with a local bridal shop owner about working Sundays & Monday nights for him so he could have his shop open more hours, but the bending over and having to get up and down off the floor and carry heavy wedding dresses is too much of a task w/my symptoms. I may still attempt the flower arranging classes one of my florist vendors has offered me, but I'm not real sure about that right now either. I have been lucky so far that I have not had any bad episodes either during a ceremony, consultation or rehearsal yet.
What day in Oct. is your wedding? I have one for Oct 2nd and one on the 10th. How have you been active in the wedding industry? I'm sure there is a lot of planning for you for next October, but it will is a joyous celebration to work towards. The best of luck & fun in your planning!!
Jean
COMMUNITY LEADER
Hi..U r welcome....we all need someone to understand and that is y this forum is here...and y most of us r here as well.
May I ask what area of weddings u service?......I too have been in the wedding trade most of my adult life and love weddings like most females do.....lol.....
My DD is getting married Oct of 2010.....and we have alot of planning to do.
"selma"
May I ask what area of weddings u service?......I too have been in the wedding trade most of my adult life and love weddings like most females do.....lol.....
My DD is getting married Oct of 2010.....and we have alot of planning to do.
"selma"
Thank you again for your encouragement and concern. Until I came across and joined this site in my desperate search for info on Chiari, I felt so alone and in the dark. I so appreciate a place and people who understand and offer help. It ***** that we all have to suffer the way we do, but I guess it makes us better individuals...and you are proof of that.
As a side note, I am interested in your daughter's wedding. As a wedding professional, anything wedding/anyone's wedding excites me!
As a side note, I am interested in your daughter's wedding. As a wedding professional, anything wedding/anyone's wedding excites me!
COMMUNITY LEADER
Well...keep the faith ....u r lucky to have a PCP that is willing to work with u...and expect u may find anothe NL or NS that doesn't think chiari is the issue unless u make sure they r chiari specialists.
The problem I had was my drs kept sending me to NS that had patients with chiari or was familiar...sorry, not good enuff for me...I wanted a dr that focused his practice on it.....and after 6 drs, I decieded where I was going and am happy I did.
So Yes to ur question about another Brain MRI as well as ur cervical, thoracic and lumbar MRI's......
Good Luck Monday
"selma"
The problem I had was my drs kept sending me to NS that had patients with chiari or was familiar...sorry, not good enuff for me...I wanted a dr that focused his practice on it.....and after 6 drs, I decieded where I was going and am happy I did.
So Yes to ur question about another Brain MRI as well as ur cervical, thoracic and lumbar MRI's......
Good Luck Monday
"selma"
Thank you for the CINE MRI info. So this would mean another brain MRI in addition to the spinal MRI's if I want to rule out Syringomyelia? I hoping when I see my PCP on Monday he can help out with this or at least head me in the right direction to another neurologist or NS. I'm not holding my breath however because my last visit with him was not a good one. I need to be able to hold a conversation using complete sentences with any medical professional. And the conversation cannot be one-sided, there has to be a give and take of information. My PCP ordered the brain MRI because of the vision problems I had during my 'stroke-like' episode in Aug. And after he rec'd the radiologist's results he sent me a letter about the 'pressure at the base of the brain' and wrote that it could be the cause of some of my symptoms. Since the neurologist is not concerned and my PCP thinks the Chiari could be the cause, I'm keeping my fingers crossed that I may get alittle farther along with where I should go after I see him Mon. morning. Wishful thinking...probably!!
COMMUNITY LEADER
A CINE MRI is an MRI that is set at a closer magnification ....it feels like a normal MRI....but midway thru u come out and they put a clip on ur finger or a lead to monitor ur BP/heart rate...and most times inject a dye.
U go back in and they can see if the herniation is pulsing with ur heart beats indicating an obstruction.
A CSF blockage, overcrowding and symptoms affecting quality of life are determining factors for surgery.
"selma"
U go back in and they can see if the herniation is pulsing with ur heart beats indicating an obstruction.
A CSF blockage, overcrowding and symptoms affecting quality of life are determining factors for surgery.
"selma"
The neurologist said he was puzzled by no mention of Chiari 3 yrs ago. I have had mild pain/pressure at the base of my skull for many yrs now but contributed it to a C5 herniated disc from 8 yrs ago (dx'd with an x-ray). On Aug 25 this year I had an episode of extreme pain/pressure at base of skull along w/tunnel vision in left eye & kaliediscope-type vision in my right eye. My left leg also seemed to be 'disconnected' from my body as I could not get it to move & couldn't feel it. It lasted about 20 minutes with extreme fatigue following (I then slept for 3 hrs). Not wanting to go to ER (for various reasons) I went to an Urgent Care facility where the dr dx'd a virus (I was running a low-grade fever too at that time & he said the glands in my neck were slightly enlarged). Since that episode, the pain/pressure at the back of my head has been constant, some times worse that others.
BTW, what is a CINE MRI?
BTW, what is a CINE MRI?
COMMUNITY LEADER
Hi and welcome to the Chairi forum....
To dx a CSF blockage u will need a CINE MRI w/wo contrast...some seem to do it without contrast and it should still show if there ids a blockage.
Most syrinx's are found in the cervical spine and can also be found in the thoracic or lumbar.
As ROD mentioned, u want to rule out chiari related conditions like a syrinx and tetehered cord, intercranial hypertension ect...
Also as Rod pointed out there r many NS and NL that do not believe chiari is symptomatic or needs intervention....all due to the fact they r not up on new findings in this area....most times it is on the radiology report as an incidential finding.
It is possible when ur NL said ur MRI's from 3 yrs ago didn't show chiari what he was saying was that ur herniation was not significant enuff for me to mention...and they can grow either rapidly or slowly.....a fall, or bumpy car ride or a MVA can trigger them to grow and cause symptoms to flare.
"selma"
To dx a CSF blockage u will need a CINE MRI w/wo contrast...some seem to do it without contrast and it should still show if there ids a blockage.
Most syrinx's are found in the cervical spine and can also be found in the thoracic or lumbar.
As ROD mentioned, u want to rule out chiari related conditions like a syrinx and tetehered cord, intercranial hypertension ect...
Also as Rod pointed out there r many NS and NL that do not believe chiari is symptomatic or needs intervention....all due to the fact they r not up on new findings in this area....most times it is on the radiology report as an incidential finding.
It is possible when ur NL said ur MRI's from 3 yrs ago didn't show chiari what he was saying was that ur herniation was not significant enuff for me to mention...and they can grow either rapidly or slowly.....a fall, or bumpy car ride or a MVA can trigger them to grow and cause symptoms to flare.
"selma"
CINE MRI is used to check CSF flow.
Yes a full spinal MRI needs to be done to rule out further syrinx
A contrast dye is also used during MRI to rule out lesions and tumours
ROD
Yes a full spinal MRI needs to be done to rule out further syrinx
A contrast dye is also used during MRI to rule out lesions and tumours
ROD
Can MRI's of the 3 spinal areas be used to diagnosis any syrinx? And do you know how a blockage of CSF is diagnosed? Would this have shown up on my MRI? And, thank you for your response.
Hi,
You are like most here a victim of a common mistake made by medics. Some do not recognise this because it is an “un common” illness.“, one they rarely encounter.
If you have symptoms contestant with CM and have a herniation then you or more to the point your doc needs to follow this up, if they don’t find one who will..
There are many overlapping conditions such as Syringomyelia that need to be ruled out as well.
Most people here will identify with the MS like symptoms
ROD
You are like most here a victim of a common mistake made by medics. Some do not recognise this because it is an “un common” illness.“, one they rarely encounter.
If you have symptoms contestant with CM and have a herniation then you or more to the point your doc needs to follow this up, if they don’t find one who will..
There are many overlapping conditions such as Syringomyelia that need to be ruled out as well.
Most people here will identify with the MS like symptoms
ROD
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