Part I:
"How long can I expect to be hospitalized?
Posterior Fossa Decompression/Revision: 5-7 days
Craniocervical Fusion: 6-8 days
Ventical Peritoneal Shunt Placement/Revision: 1-2 days
**Above are estimated lengths of stay without complications**
When can I shower? Wash my hair?
You may shower at any point as long as you do not get surgical incisions/staples/sutures wet 48hrs after removal. You may wash your hair with a gentle shampoo 48hrs after staple/suture removal.
When will staples/sutures come out?
New incisions: 7 post operative days
Old surgical incisions: 9-11 post operative days
EDS pts: timing varies; you will receive specific instructions upon discharge.
**You do not need to remain in the hospital for staple/suture removal, arrangements for removal can be made with your physician at home, unless otherwise instructed**
When can i get out of bed?
The day after surgery you should be out of bed and sitting in the chair a minimum 30 minutes 2-3 times that day, increasing your time out of bed daily until discharge."
Read more!
September 30, 2008
September 28, 2008
Surgical Procedures for Chiari (by TCI)
"Surgical Procedures:
Posterior Fossa Decompression: A posterior fossa decompression is the removal of the bone from the back of the posterior fossa, called the sub-occipital bone.
- The surgeons at the Chiari Institute are the first surgeons to use color Doppler as a guide
during decompressions.
- The purpose of a posterior fossa decompression is to restore normal circulation of CFS.
Shunt: A shunt is a tube which drains spinal fluid from one space to another body cavity.
Lumbar Puncture: A lumbar puncture or "LP" is a procedure whereby spinal fluid is removed from the spinal canal for the purpose of diagnostic testing. This is also known as spinal tap.
Cranioplasty: The operative repair of a defect of the skull.
Craniocervical Fusion: Craniocervical fusion is performed for spinal instability. The fusion usually involves several adjacent vertebrae and may include fusing the upper cervical spine."
(The surgeon at TCI suggested that Craniocervical Fusion may be an option for me due to my spinal instability. He did state though however, that I would not be able to turn my head again. Some readers have stated that the have "some" movement since the surgery, but it is very limited. You may want to keep this in mind when making a decision in regards to CF surgery.) Read more!
Posterior Fossa Decompression: A posterior fossa decompression is the removal of the bone from the back of the posterior fossa, called the sub-occipital bone.
- The surgeons at the Chiari Institute are the first surgeons to use color Doppler as a guide
during decompressions.
- The purpose of a posterior fossa decompression is to restore normal circulation of CFS.
Shunt: A shunt is a tube which drains spinal fluid from one space to another body cavity.
Lumbar Puncture: A lumbar puncture or "LP" is a procedure whereby spinal fluid is removed from the spinal canal for the purpose of diagnostic testing. This is also known as spinal tap.
Cranioplasty: The operative repair of a defect of the skull.
Craniocervical Fusion: Craniocervical fusion is performed for spinal instability. The fusion usually involves several adjacent vertebrae and may include fusing the upper cervical spine."
(The surgeon at TCI suggested that Craniocervical Fusion may be an option for me due to my spinal instability. He did state though however, that I would not be able to turn my head again. Some readers have stated that the have "some" movement since the surgery, but it is very limited. You may want to keep this in mind when making a decision in regards to CF surgery.) Read more!
September 23, 2008
The Chiari Institute (TCI) Experience...
Hey Everybody! I'm taking a break from "clinical posting" to answer some questions. I've been asked by several of you since my return from TCI, what it's like and what to expect. Many of you were so kind to fill "me" in before I went, so I'm passing on the favor!
From the get-go: If flying, book ahead as soon as possible (2 months if able)...saved me a bundle! I flew into LaGuardia Airport which was about a 30 min. drive to North Shore/TCI. I used the airport shuttle which was quite a bit cheaper than the regular taxis...about$40.00 compared to $50+.
As far as hotels, the ones offered on TCI's website are great and offer discounts, BUT the prices on the site have not been updated and are about $20 more now at some hotels.
Be sure to ask when you reserve your room. Ollie's taxi service was great and they were so nice. Ask for Bob,#51. Tell him the FL TCI couple sent you! LOL!!!
The day of testing is not bad at all. Plan on 3-4 hours that day depending on what tests have been ordered. Everyone was great!
The next day (at TCI) plan on being there all day (it's worth it...honest!). I arrived just at 9:00am and didn't leave until 7:00 pm that night. The time scheduled to see your doctors is not necessarily the time you'll actually see them. Tuesdays are big surgery days. They ask you to stay there throughout the day as the doctors are in and out. First they have you fill out more paperwork...and even take your picture, so SMILE! :) The Marketing Dir. then comes out to meet you and is great. You'll be given a nice canvas TCI bag with goodies like; Patient Education Binder...Nice Daily Planner...TCI Info...and a cute little squeezy stress ball made to look like a little brain! LOL!!!
Next the Nurse Practitioner calls you back and goes over your complete medical history. You'll also be asked about your family history (even cousins, aunts, uncles, etc). The more info you have the better! That's how they came to find that my TCS may be inherited from my Dad (I was the first case they have had like that they said...they were excited...not that "I" was! After that, you'll be waiting to see the docs. They have nice personal waiting spaces with flat screen TVs...a computer room with internet service as well as all their videos (even ones not on the website)...and they have a nice area for refreshments (bagels, pastries, cheeses, coffee, juice, etc.) They have a microwave as well to use. There are no restaurants near by to walk to, but they provide numbers of those who will deliver. The doctors were wonderful and thorough...they do a complete neuroexam and are a wealth of information. I took a small recording device so I could record all they said to me (I knew I'd forget stuff...thanks to Brain Fog! LOL!) They were perfectly fine with that. Dr. Chan even gave me his email address if I have questions later and said he'd call me back in return! I'm now waiting for the written report which takes some time I hear (2-6 wks at times). Well that's the highlights! Sorry so long, but I know a lot of you want to be as informed as you can be...just as I was! Read more!
From the get-go: If flying, book ahead as soon as possible (2 months if able)...saved me a bundle! I flew into LaGuardia Airport which was about a 30 min. drive to North Shore/TCI. I used the airport shuttle which was quite a bit cheaper than the regular taxis...about$40.00 compared to $50+.
As far as hotels, the ones offered on TCI's website are great and offer discounts, BUT the prices on the site have not been updated and are about $20 more now at some hotels.
Be sure to ask when you reserve your room. Ollie's taxi service was great and they were so nice. Ask for Bob,#51. Tell him the FL TCI couple sent you! LOL!!!
The day of testing is not bad at all. Plan on 3-4 hours that day depending on what tests have been ordered. Everyone was great!
The next day (at TCI) plan on being there all day (it's worth it...honest!). I arrived just at 9:00am and didn't leave until 7:00 pm that night. The time scheduled to see your doctors is not necessarily the time you'll actually see them. Tuesdays are big surgery days. They ask you to stay there throughout the day as the doctors are in and out. First they have you fill out more paperwork...and even take your picture, so SMILE! :) The Marketing Dir. then comes out to meet you and is great. You'll be given a nice canvas TCI bag with goodies like; Patient Education Binder...Nice Daily Planner...TCI Info...and a cute little squeezy stress ball made to look like a little brain! LOL!!!
Next the Nurse Practitioner calls you back and goes over your complete medical history. You'll also be asked about your family history (even cousins, aunts, uncles, etc). The more info you have the better! That's how they came to find that my TCS may be inherited from my Dad (I was the first case they have had like that they said...they were excited...not that "I" was! After that, you'll be waiting to see the docs. They have nice personal waiting spaces with flat screen TVs...a computer room with internet service as well as all their videos (even ones not on the website)...and they have a nice area for refreshments (bagels, pastries, cheeses, coffee, juice, etc.) They have a microwave as well to use. There are no restaurants near by to walk to, but they provide numbers of those who will deliver. The doctors were wonderful and thorough...they do a complete neuroexam and are a wealth of information. I took a small recording device so I could record all they said to me (I knew I'd forget stuff...thanks to Brain Fog! LOL!) They were perfectly fine with that. Dr. Chan even gave me his email address if I have questions later and said he'd call me back in return! I'm now waiting for the written report which takes some time I hear (2-6 wks at times). Well that's the highlights! Sorry so long, but I know a lot of you want to be as informed as you can be...just as I was! Read more!
September 20, 2008
Testing For Chiari: (by TCI)
(Testing that may be expected while at TCI)
3D CT Scan: A 3D CT scan is a scan that produces three-dimensional images of the patient's
vessels.
Cine MRI: A Cine MRI is taken the same way a traditional MRI is, with the addition of either a wristband or EKG leads on the patient's chest to measure the heart rate. Each time your heart beats, the CSF is forced out of your brain, down toward the spine in response to the flow of blood that enters the brain with each beat. The MRI machine is equipped with an additional software package that allows the images to be put together, showing the flow of CSF as it is moving.
Computerized Tomography (CT scan): A method of body imaging in which special x-ray equipment examines different angles and is analyzed by a computer to show a cross section of body tissues and organs.
Magnetic Resonance Angiography (MRA): This test examines the blood vessels without the use of any x-ray. Electromagnetic energy that is released when exposing the patient to radio waves in a strong magnetic field is measured by a computer and reveals images of the vessels.
Magnetic Resonance Imaging (MRI): This is a test that reveals highly refined images of the body. This test obtains better images of tissue and organs by using strong magnets and pulses of radio waves to manipulate the natural magnetic properties in the body.
Medical Management: Not all patients diagnosed with CM require surgical treatment. Depending on the severity of the patient's symptoms and the results of a neurological workup, a patient may or may not be referred for surgical intervention. Even if surgical intervention is not indicated at the time of the workup, future surgery may be warranted if symptoms worsen."
Read more!
September 18, 2008
Chiari Related Conditions; (by TCI)
"Syringomyelia: Syringomyelia occurs when a tubular cavity (syrinx) develops within the spinal cord, caused by an obstruction of the cerebrospinal fluid (CSF) circulatory pathways.
*Approximately 80% of cases are the result of a Chiari Malformation. Other causes include
trauma, hemorrhage, infection and spinal cord tethering.
*An enlarged syrinx can give rise to painful sensory disturbances and paralysis of the
extremities.
Other Conditions: Other Chiari-related disorders treated at TCI include basilar invagination (see below), craniospinal instability, Ehlers-Danlos Syndrome (see below), intracranial and intraspinal cysts, tumors of the cerebellum, brain stem and spinal cord, spina bifida, spinal cord tethering, hydrocephalus (see below), and pseudotumor cerebri.
Basilar Invagination: Basilar Invagination is a protrusion of the upper end of the spine into the skull.
Ehlers-Danlos Syndrome(EDS): Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue. EDS is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.
Hydrocephalus: Hydrocephalus is a buildup of CSF in the cavities of the brain.
Pseudotumor Cerebri: Pseudotumor Cerebri is chronically raised pressure in the cerebral spinal fluid." Read more!
*Approximately 80% of cases are the result of a Chiari Malformation. Other causes include
trauma, hemorrhage, infection and spinal cord tethering.
*An enlarged syrinx can give rise to painful sensory disturbances and paralysis of the
extremities.
Other Conditions: Other Chiari-related disorders treated at TCI include basilar invagination (see below), craniospinal instability, Ehlers-Danlos Syndrome (see below), intracranial and intraspinal cysts, tumors of the cerebellum, brain stem and spinal cord, spina bifida, spinal cord tethering, hydrocephalus (see below), and pseudotumor cerebri.
Basilar Invagination: Basilar Invagination is a protrusion of the upper end of the spine into the skull.
Ehlers-Danlos Syndrome(EDS): Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue. EDS is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.
Hydrocephalus: Hydrocephalus is a buildup of CSF in the cavities of the brain.
Pseudotumor Cerebri: Pseudotumor Cerebri is chronically raised pressure in the cerebral spinal fluid." Read more!
September 15, 2008
Chiari and Pregnancy; (by TCI)
"Not all Chiarians are created equal. It is important to see a specialist in the field to properly evaluate how to deliver if you have Chiari Malformation/ Syringomyelia. The presence of SM may require C-section rather than vaginal delivery.
Patients with Posterior Fossa Decompression who are pregnant: Patients with successful decompression or very minimal Chiari symptoms have less risk when an epidural is part of the plan. If prolonged labor occurs this can put more pressure on the central nervous system (brain and spinal column) and the option for a C-section should be considered. If you have had a successful decompression a vaginal delivery should be considered. Some patients are under-decompressed, so this rule is only true for successful PFD's. In order to know if you are a successful decompression you need an MRI of the brain and some resolution of symptoms.
Patients without a Posterior Fossa Decompression and no SM: They are usually monitored closely. Anepidural can worsen CM/SM if the epidural is performed too deep (goes past the dura). Also a vaginal delivery can make CM worse if you have a syrinx.
Patients with NO decompression and with SM: The size of the syrinx matters. An open MRI is recommended at 35 weeks gestation. If the MRI reveals a larger syrinx or neurological signs are increasing, a C-section is indicated. If one is stable and the syrinx has not changed, you may proceed to the 40th week of pregnancy and be careful with the epidural as stated above.
Of course, if you are disproportioned (the baby is larger than your birth canal) one must go C-section. Usually during pregnancy many patients feel better and some of your symptoms can improve. Every patient is different and on should have an evaluation prior to delivery."
Read more!
Patients with Posterior Fossa Decompression who are pregnant: Patients with successful decompression or very minimal Chiari symptoms have less risk when an epidural is part of the plan. If prolonged labor occurs this can put more pressure on the central nervous system (brain and spinal column) and the option for a C-section should be considered. If you have had a successful decompression a vaginal delivery should be considered. Some patients are under-decompressed, so this rule is only true for successful PFD's. In order to know if you are a successful decompression you need an MRI of the brain and some resolution of symptoms.
Patients without a Posterior Fossa Decompression and no SM: They are usually monitored closely. Anepidural can worsen CM/SM if the epidural is performed too deep (goes past the dura). Also a vaginal delivery can make CM worse if you have a syrinx.
Patients with NO decompression and with SM: The size of the syrinx matters. An open MRI is recommended at 35 weeks gestation. If the MRI reveals a larger syrinx or neurological signs are increasing, a C-section is indicated. If one is stable and the syrinx has not changed, you may proceed to the 40th week of pregnancy and be careful with the epidural as stated above.
Of course, if you are disproportioned (the baby is larger than your birth canal) one must go C-section. Usually during pregnancy many patients feel better and some of your symptoms can improve. Every patient is different and on should have an evaluation prior to delivery."
Read more!
January 27, 2008
Chiari Malformation - Three Main Types; (by TCI)
For the next several posts, I'll be sharing information given to me by TCI in regards to CM and related disorders. I hope you find it both informative and helpful.
Chiari Malformation: Chiari Malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid (CSF) in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord.
There are three main types of CM.
*CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. It is rarely apparent at birth.
CM2 and CM3 are more severe congenital malformations that are apparent at birth and associated with complex defects of the brain and spinal cord.
How is CM diagnosed?
CM is most often diagnosed by viewing the malformation on a patient's MRI of the head and spine and reviewing the patient's symptoms.
Patients may also undergo a variety of other testing, depending on their symptoms, including various MRIs, x-rays, CT scans, MRAs of the brain, spine, and skull including cine-MRI and
3D CT scans.
Because of the complexity of some patient's symptoms and the similarities between these symptoms and the symptoms of other disorders, patients often are misdiagnosed.
(For a list of CM symptoms, please click on symptoms list listed on home page.)
Next posting I'll share information in regards to CM and pregnancy. Thank You. Read more!
Chiari Malformation: Chiari Malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid (CSF) in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord.
There are three main types of CM.
*CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. It is rarely apparent at birth.
CM2 and CM3 are more severe congenital malformations that are apparent at birth and associated with complex defects of the brain and spinal cord.
How is CM diagnosed?
CM is most often diagnosed by viewing the malformation on a patient's MRI of the head and spine and reviewing the patient's symptoms.
Patients may also undergo a variety of other testing, depending on their symptoms, including various MRIs, x-rays, CT scans, MRAs of the brain, spine, and skull including cine-MRI and
3D CT scans.
Because of the complexity of some patient's symptoms and the similarities between these symptoms and the symptoms of other disorders, patients often are misdiagnosed.
(For a list of CM symptoms, please click on symptoms list listed on home page.)
Next posting I'll share information in regards to CM and pregnancy. Thank You. Read more!
January 19, 2008
Back Home Again!
First of all, I want to thank each and every one of you for thoughts, prayers and words of encouragement. This week has been quite an experience to say the least and I'm so glad we decided to go to TCI. They were simply wonderful! So here's the scoop...
Good news first; No Syrinx! This was a major answer to prayer. Also, my Chiari herniation has not increased which is great.
Not so good news; The Doctors stated that I have Tethered Cord Syndrome as well as Ehlers-Danlos Syndrome (joint hypermobility type) and Scoliosis. TCS to put it simply means that the spinal cord is attached at the thecal sac instead of being free at the base as it should be. This they believe is causing my Chiari as it "pulls" on the spinal cord/brain stem. They hope that if they perform the surgery to release the cord it may decrease my CM. If not, they said that they could do the decompression surgery, but this would cause even greater cervical instability. They would most likely have fuse my skull onto my spinal cord due to my EDS and I would never be able to turn my head again. Not gonna happen people! (Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, joints, muscles and ligaments.) They said that Chiari symptoms are greater in EDS patients as the cervical instability aggravates the CM herniation site more so than those without EDS and it causes severe pain itself.
They're having me start traction treatments daily for now to help relieve the pain and I have other tests to be done before they set up the surgery for my TCS. I also get to wear a nifty little Aspen Collar whenever I have to travel for any length of time to help with my cervical instability.
Enough of all that though...we did get to enjoy a bit of NYC and I can't thank my honey enough for being so supportive throughout the trip and for caring enough to create some special moments along the way. It was cold and damp as it should be this time of year, but Central Park was beautiful regardless! (Thanks Babe...)
So that's it in a nutshell. I'll be having tests done in the next couple of weeks and I will keep you all posted. Stay tuned for the rest of the story! Read more!
Good news first; No Syrinx! This was a major answer to prayer. Also, my Chiari herniation has not increased which is great.
Not so good news; The Doctors stated that I have Tethered Cord Syndrome as well as Ehlers-Danlos Syndrome (joint hypermobility type) and Scoliosis. TCS to put it simply means that the spinal cord is attached at the thecal sac instead of being free at the base as it should be. This they believe is causing my Chiari as it "pulls" on the spinal cord/brain stem. They hope that if they perform the surgery to release the cord it may decrease my CM. If not, they said that they could do the decompression surgery, but this would cause even greater cervical instability. They would most likely have fuse my skull onto my spinal cord due to my EDS and I would never be able to turn my head again. Not gonna happen people! (Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, joints, muscles and ligaments.) They said that Chiari symptoms are greater in EDS patients as the cervical instability aggravates the CM herniation site more so than those without EDS and it causes severe pain itself.
They're having me start traction treatments daily for now to help relieve the pain and I have other tests to be done before they set up the surgery for my TCS. I also get to wear a nifty little Aspen Collar whenever I have to travel for any length of time to help with my cervical instability.
Enough of all that though...we did get to enjoy a bit of NYC and I can't thank my honey enough for being so supportive throughout the trip and for caring enough to create some special moments along the way. It was cold and damp as it should be this time of year, but Central Park was beautiful regardless! (Thanks Babe...)
So that's it in a nutshell. I'll be having tests done in the next couple of weeks and I will keep you all posted. Stay tuned for the rest of the story! Read more!
January 09, 2008
Four Days And Counting...
They say New York is the city that never sleeps...well, sounds like we'll get along just fine! In four short days we'll be headed to the Big Apple! The long awaited trip to The Chiari Institute has finally arrived! We've had a few hurdles to cross to say the least (thanks to my wonderful insurance co) but things are finally coming together!
I would like to thank each and every one of you for your prayers and support and your kind words of encouragement! I'll likely not be able to post for several days but will be back with a full report just as soon as I can!
Take care and God bless!
~Beth Read more!
I would like to thank each and every one of you for your prayers and support and your kind words of encouragement! I'll likely not be able to post for several days but will be back with a full report just as soon as I can!
Take care and God bless!
~Beth Read more!
January 01, 2008
"Happy New Year!"
Here we are at the beginning of yet another new year. Many of us with CM are, and will be faced with many challenges, struggles and frustrations due to the nature of our illness. As the saying goes, we can let them make us bitter or allow them to make us better!
Read more!
As for me, my New Year's resolution is to focus on the positives in my life. To do whatever it takes to overcome this ongoing battle. To hopefully learn enough along the way to be a source of strength to others.
Wishing you and yours a very Happy and Healthy New Year!
December 22, 2007
Is It Enough?
"Christmas night. As the evening falls like the curtain on a long-awaited show, I hold my children, just one last time this season, in the warm bath of the Christmas tree lights.
And I wonder.
Did the Yuletide parties and gatherings fill them with a sense of family? Did the Christmas rituals unite them in a shared commonality with their fellowmen? Did the music of Christmas heal them of a cynical world and inspire them with hopes of something greater? Did the gifts they shared teach them that the greatest gifts are received in the giving? Did the once -wrapped presents of Christmas remind them of a greater gift given many Christmases ago?
And I wonder.
Is there enough awe in my children, enough magic left, to save a world? For within my heart I lament a great truth...that the only promise of childhood is that it will end. And I wonder what I have given them to take its place.
And is it enough?"
Wishing you and yours a very Merry Christmas and
Happy New Year.
Read more!
And I wonder.
Did the Yuletide parties and gatherings fill them with a sense of family? Did the Christmas rituals unite them in a shared commonality with their fellowmen? Did the music of Christmas heal them of a cynical world and inspire them with hopes of something greater? Did the gifts they shared teach them that the greatest gifts are received in the giving? Did the once -wrapped presents of Christmas remind them of a greater gift given many Christmases ago?
And I wonder.
Is there enough awe in my children, enough magic left, to save a world? For within my heart I lament a great truth...that the only promise of childhood is that it will end. And I wonder what I have given them to take its place.
And is it enough?"
Wishing you and yours a very Merry Christmas and
Happy New Year.
Read more!
December 13, 2007
Rosanne Cash CM Success
Many of you might have heard the country singer Rosanne Cash, daughter of the country legend Johnny Cash, recently underwent decompression surgery for Chiari. She is reported as doing well and is looking forward to getting back into the recording studios soon! The story of her success is truly an inspiration to those of us with CM.
Please visit the following link to read her story: http://www.cnn.com/2007/SHOWBIZ/Music/12/12/people.rosannecash.ap/index.html
Read more!
Please visit the following link to read her story: http://www.cnn.com/2007/SHOWBIZ/Music/12/12/people.rosannecash.ap/index.html
December 08, 2007
Happy Holidays!
As a member of the WACMA message board, I've read several posts from other members located in Central Florida who were interested in knowing if there is a Chiari support group here locally. I too was looking for one, found none, so I decided to start one myself!
You can find it under Yahoo Groups as Central FL Chiari Support Group or simply click on the Yahoo icon at the bottom of this page to join! Eventually, I hope to set up meetings to be held monthly.
It's so important to have someone who truly understands exactly what you're going through. If you need an ear to listen, a shoulder to lean on, or a word of encouragement, you'll find it here.
Happy Holidays! Read more!
You can find it under Yahoo Groups as Central FL Chiari Support Group or simply click on the Yahoo icon at the bottom of this page to join! Eventually, I hope to set up meetings to be held monthly.
It's so important to have someone who truly understands exactly what you're going through. If you need an ear to listen, a shoulder to lean on, or a word of encouragement, you'll find it here.
Happy Holidays! Read more!
November 27, 2007
"It's The Most Wonderful Time Of The Year!"
Thanksgiving is over and that can only mean one thing...CHRISTMAS IS HERE! I must admit, I am a die hard Christmas fanatic, but it's all good. I know I'm not alone on this one!
Many of you on the message boards have asked where you can purchase Chiari Gifts. I too was interested but never really found much online so I created a shop myself. I will be donating a portion of the proceeds to Wishes and Rainbows. They are a non-profit organization that assists those with CM and other related disorders in meeting the medical costs, traveling expenses and personal financial assistance to those who qualify. Getting proper medical care to treat Chiari and Syringomyelia can be extremely costly for some...financially devastating for others. The folks at Wishes and Rainbows are dedicated to helping those in need of this care, who otherwise might go left untreated.
As you purchase your holiday gifts this year, take a moment to browse our shop at the link provided below. You just might be giving someone the best gift of all...a chance. Read more!
Many of you on the message boards have asked where you can purchase Chiari Gifts. I too was interested but never really found much online so I created a shop myself. I will be donating a portion of the proceeds to Wishes and Rainbows. They are a non-profit organization that assists those with CM and other related disorders in meeting the medical costs, traveling expenses and personal financial assistance to those who qualify. Getting proper medical care to treat Chiari and Syringomyelia can be extremely costly for some...financially devastating for others. The folks at Wishes and Rainbows are dedicated to helping those in need of this care, who otherwise might go left untreated.
As you purchase your holiday gifts this year, take a moment to browse our shop at the link provided below. You just might be giving someone the best gift of all...a chance. Read more!
November 19, 2007
Just Another Manic Monday...
With Thanksgiving just around the corner, I thought I would post this evening while I actually had the chance!
There are days when I must admit that I feel anything but "thankful". It's so much easier to make a list of the negatives it seems; work, bills, finances, debt, traffic, kids arguing, family/relationship dynamics, the paper boy that keeps throwing your newspaper in the puddle!
All of these things are bad enough on their own! Add to them a list of Chiari woes; pain, exhaustion, "brain fog" and you've got yourself somebody begging for a nice little white padded cell! Ahh...c'mon. You KNOW you've thought about it!
So many of us allow ourselves to let the affects of CM "steal our joy." Haven't we let it steal enough already? While contemplating what to post tonight all I could think of was the aggravation of the day's events. The more I thought about it, the worse I felt. It was stealing my joy.
I began to reflect on the positives in my life; a good job so I can pay my bills...a reliable vehicle that keeps me in traffic and not on the side of the road. Great kids that argue only amongst themselves, not with their teachers, peers or with me. The fact that I have a family and sweetheart who loves me is pretty dynamic in itself. And should I ever order the paper, I have no puddles outside my door to throw it in!
As for my Chiari, I'm thankful that I can still feel most of the pain...when I'm exhausted from the pain I have a comfortable bed to lay down in...and when I'm "foggy" I never forget what truly needs to be remembered. All the above.
Wishing you and yours a very Happy and Blessed Thanksgiving. Read more!
There are days when I must admit that I feel anything but "thankful". It's so much easier to make a list of the negatives it seems; work, bills, finances, debt, traffic, kids arguing, family/relationship dynamics, the paper boy that keeps throwing your newspaper in the puddle!
All of these things are bad enough on their own! Add to them a list of Chiari woes; pain, exhaustion, "brain fog" and you've got yourself somebody begging for a nice little white padded cell! Ahh...c'mon. You KNOW you've thought about it!
So many of us allow ourselves to let the affects of CM "steal our joy." Haven't we let it steal enough already? While contemplating what to post tonight all I could think of was the aggravation of the day's events. The more I thought about it, the worse I felt. It was stealing my joy.
I began to reflect on the positives in my life; a good job so I can pay my bills...a reliable vehicle that keeps me in traffic and not on the side of the road. Great kids that argue only amongst themselves, not with their teachers, peers or with me. The fact that I have a family and sweetheart who loves me is pretty dynamic in itself. And should I ever order the paper, I have no puddles outside my door to throw it in!
As for my Chiari, I'm thankful that I can still feel most of the pain...when I'm exhausted from the pain I have a comfortable bed to lay down in...and when I'm "foggy" I never forget what truly needs to be remembered. All the above.
Wishing you and yours a very Happy and Blessed Thanksgiving. Read more!
November 12, 2007
Years before I was diagnosed with CM I'd been experiencing symptoms such as; blinding headaches, severe pain in my neck, fatigue, dizziness, numbness in my face, etc. I was led to believe I had everything from pinched nerves to chronic fatigue syndrome.
Mother's Day of 2005 I woke with a feeling of sheer panic. I had lost all feeling on the right side of my body. Taking into consideration my family history, the first thought that came to mind was a stroke. A trip to the ER and numerous tests later, revealed a diagnosis of Chiari Malformation.
At 3 A.M. the neurologist on duty came flying into my room, threw on the light, said something about my brain being crowded and was basically "sliding down" but it was not all that uncommon...follow up with my regular physician upon discharge. That was it. I had no CLUE what I had, what to expect or what to do about it. All I knew was that I was in pain, I was exhausted and scared. Over two years later several doctors have followed, all with the same conclusion; "It's not the Chiari that's causing your symptoms...your herniation is not significant enough...maybe your just stressed out."
I know many of you or perhaps someone you love has experienced the same, over and over again.
I hope that this blog, in some small way, can put us one step closer to increased awareness, education and support. Together we CAN make a difference! Read more!
Mother's Day of 2005 I woke with a feeling of sheer panic. I had lost all feeling on the right side of my body. Taking into consideration my family history, the first thought that came to mind was a stroke. A trip to the ER and numerous tests later, revealed a diagnosis of Chiari Malformation.
At 3 A.M. the neurologist on duty came flying into my room, threw on the light, said something about my brain being crowded and was basically "sliding down" but it was not all that uncommon...follow up with my regular physician upon discharge. That was it. I had no CLUE what I had, what to expect or what to do about it. All I knew was that I was in pain, I was exhausted and scared. Over two years later several doctors have followed, all with the same conclusion; "It's not the Chiari that's causing your symptoms...your herniation is not significant enough...maybe your just stressed out."
I know many of you or perhaps someone you love has experienced the same, over and over again.
I hope that this blog, in some small way, can put us one step closer to increased awareness, education and support. Together we CAN make a difference! Read more!
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