Has anyone gone to the Chiari Institute in Great Neck, NY? I went a couple years ago when my symptoms returned following 2 surgeries (over a 12 year period). The doctor there pretty much told me to "suck it up" because he sees patients every day that are worse then me. I wanted to ask him if it hurts him every time he laughs?
Anyway, my symptoms seem to be getting worse, waking up daily with headaches. I'm reluctant to go back there but not sure what to do next? Thoughts?
Janet, If your symptoms are returning you should be checked for sure. You’ve had 2 surgeries? That makes me wonder if you have been tested for Elhers Danlos Syndrome. For some chiarians with EDS the decompression itself may not be enough. So my two cents here: if your looking around for another surgeon to consult with, find one that screens for EDS and related neck instabilities just to be sure. I know TCI in great neck does a good job of screening for that, Dr. Henderson too in MD. I’m sure there are many others that do as well. There is a member recommended doctor list on this site. I think it’s at the top of the home page (?) if you can’t find it let me know and find for you.
Jenn
It looks like people with EDS have symptoms upon standing and it's relieved when lying down. Mine is opposite...
jcdemar said:
Janet, If your symptoms are returning you should be checked for sure. You've had 2 surgeries? That makes me wonder if you have been tested for Elhers Danlos Syndrome. For some chiarians with EDS the decompression itself may not be enough. So my two cents here: if your looking around for another surgeon to consult with, find one that screens for EDS and related neck instabilities just to be sure. I know TCI in great neck does a good job of screening for that, Dr. Henderson too in MD. I'm sure there are many others that do as well. There is a member recommended doctor list on this site. I think it's at the top of the home page (?) if you can't find it let me know and find for you.
Jenn
Pots any be an issue as well. Be persistent!
Janet, not necessarily. EDS can affect the laxity of your connective tissues, causing ligaments to become “stretched” and unable to hold the vertebrae (or any other joint)in the correct place when moving your head or neck. EDS can present with many other problems too. When my symptoms are at their worst my headache gets worse when lying down too. I have EDS. Abby has some great information about eds and pots, it may take a little while cause I’m breakfast with my family, but ill find it today.
Jenn
Thank you so much Jenn!
jcdemar said:
Janet, not necessarily. EDS can affect the laxity of your connective tissues, causing ligaments to become "stretched" and unable to hold the vertebrae (or any other joint)in the correct place when moving your head or neck. EDS can present with many other problems too. When my symptoms are at their worst my headache gets worse when lying down too. I have EDS. Abby has some great information about eds and pots, it may take a little while cause I'm breakfast with my family, but ill find it today.
Jenn
Janet here’s that EDS info-
Many of us Chiarians have been diagnosed with EDS. I was diagnosed with classic/hypermobile type. You don’t have to have loose joints or stretchy skin, etc to have EDS. Here are some of the other classes of EDS.
Common features of EDS
There are various different forms of EDS. All share some common features, such as loose joints, abnormal skin and fragile body tissues, but each form of EDS has unique characteristics too.
The forms of Ehlers-Danlos syndrome (EDS) can be defined as follows:
Classical - the skin is stretchy, soft, fragile and elastic. The joints are loose and flexible.
Hypermobility - the joints are noticeably loose, flexible and sometimes painful, particularly after exercise. Unlike with other types of EDS, the skin is virtually normal, except for easy bruising.
Vascular - this is the most severe type, as it means organs and blood vessels can easily burst.
Kyphoscoliotic - the spine is severely curved in childhood.
Arthrochalasia - this causes short stature, fragile skin and joints that easily dislocate.
Dermatospraxis - the skin is doughy and wrinkly, and tends to sag and fold. This type is exceptionally rare, probably affecting fewer than five patients in the UK.
Periodontal - this form resembles classical EDS, but also causes very fragile gums.
The general features are described in more detail below.
Hypermobile joints
People with EDS typically have loose joints, which means the limbs bend more than usual. This can cause floppy joints in infancy, and some affected children take longer to sit, stand and walk.
Hypermobility EDS is the most common form. The joints can sometimes be very unstable and may dislocate easily.
In other forms of EDS (such as kyphoscoliotic and arthrochalasia EDS), the looseness of the joints tends to be more disabling and dislocations may happen frequently. Joint instability may occasionally lead to osteoarthritis, but this is uncommon and occurs mostly in adults.
For more information on loose joints, read our pages on Joint hypermobility.
Abnormal skin
In all forms of EDS the skin is stretchier than normal. It easily pulls away from the body and springs back once released (this is best tested at the neck, elbows or knees).
Bruising of the skin is common in most forms of EDS because small surface blood vessels may be fragile and break easily.
In classical EDS, skin can also be extremely fragile and can split easily, especially over the forehead, knees, shins and elbows. The scars can be wide and papery.
In the very rare dermatospraxis form of EDS, the skin is severely fragile, saggy and wrinkly. There may be obvious looseness of the facial skin.
In vascular EDS, the skin is often transparent, particularly over the chest, and the veins underneath are easily visible. People with other forms of EDS may also have slightly thinner skin than usual.
Fragile body tissues
Increased stretchiness and fragility of ligaments, tendons and joint tissues makes them prone to overstretching or even tearing (ligaments are tissues that connect bones together at a joint, and tendons connect bone to muscle). Therefore, limbs may be floppy because they are not properly supported.
In vascular EDS, certain body tissues and organs are particularly delicate. Blood vessels, bowel walls and lung linings may be easily torn, causing internal bleeding. Pregnancy in women with vascular EDS can be dangerous because the womb lining is fragile.
Other possible signs of EDS
Other possible signs of EDS are listed below:
varicose veins
limb and joint pain
hernias, where part of an organ bulges through the surrounding muscle
firm lumps (about 2-3cm) developing over elbows and knees, called molluscoid pseudotumours (common in classical EDS)
small, firm ‘ballbearings’ felt just underneath the skin, called spheroids (common in classical EDS)
small skin-coloured lumps in the side of the heel, called piezogenic papules, which appear when standing (common in hypermobility EDS)
skin folds close to the eyes and nose, known as epicanthic folds, which make the bridge of the nose appear wide (typical of classical EDS)
heart valve problems
scoliosis (curvature of the spine), which usually develops during adolescence, although is uncommon
gum disease (fragile, inflamed gums), which occur in periodontal EDS
Listed below is some other options in getting a diagnoses:
How is it diagnosed?
Many different doctors can diagnose Ehlers-Danlos syndrome. Your family physician or pediatrician would be the logical first step toward gaining a diagnosis. In addition, you may also work with other specialists in your diagnosis and treatment:
Dermatologist: specialist in skin diseases
Rheumatologist: specialist in rheumatic diseases
Orthopedist: specialist in diseases and injuries of bones, joints and muscles
Medical geneticist: specialist in inherited disorders
To determine whether you have one of the Ehlers-Danlos syndromes and to figure out which type you have, your doctor will review your family and medical history, complete a physical exam and complete laboratory tests.
I guess I'm still confused as to how it relates to Chiari? I don't have saggy skin etc. It doesn't really say anything about the symptoms I am having.
jcdemar said:
Janet here's that EDS info-
Many of us Chiarians have been diagnosed with EDS. I was diagnosed with classic/hypermobile type. You don't have to have loose joints or stretchy skin, etc to have EDS. Here are some of the other classes of EDS.
Common features of EDS
There are various different forms of EDS. All share some common features, such as loose joints, abnormal skin and fragile body tissues, but each form of EDS has unique characteristics too.
The forms of Ehlers-Danlos syndrome (EDS) can be defined as follows:
Classical - the skin is stretchy, soft, fragile and elastic. The joints are loose and flexible.
Hypermobility - the joints are noticeably loose, flexible and sometimes painful, particularly after exercise. Unlike with other types of EDS, the skin is virtually normal, except for easy bruising.
Vascular - this is the most severe type, as it means organs and blood vessels can easily burst.
Kyphoscoliotic - the spine is severely curved in childhood.
Arthrochalasia - this causes short stature, fragile skin and joints that easily dislocate.
Dermatospraxis - the skin is doughy and wrinkly, and tends to sag and fold. This type is exceptionally rare, probably affecting fewer than five patients in the UK.
Periodontal - this form resembles classical EDS, but also causes very fragile gums.
The general features are described in more detail below.
Hypermobile joints
People with EDS typically have loose joints, which means the limbs bend more than usual. This can cause floppy joints in infancy, and some affected children take longer to sit, stand and walk.
Hypermobility EDS is the most common form. The joints can sometimes be very unstable and may dislocate easily.
In other forms of EDS (such as kyphoscoliotic and arthrochalasia EDS), the looseness of the joints tends to be more disabling and dislocations may happen frequently. Joint instability may occasionally lead to osteoarthritis, but this is uncommon and occurs mostly in adults.
For more information on loose joints, read our pages on Joint hypermobility.
Abnormal skin
In all forms of EDS the skin is stretchier than normal. It easily pulls away from the body and springs back once released (this is best tested at the neck, elbows or knees).
Bruising of the skin is common in most forms of EDS because small surface blood vessels may be fragile and break easily.
In classical EDS, skin can also be extremely fragile and can split easily, especially over the forehead, knees, shins and elbows. The scars can be wide and papery.
In the very rare dermatospraxis form of EDS, the skin is severely fragile, saggy and wrinkly. There may be obvious looseness of the facial skin.
In vascular EDS, the skin is often transparent, particularly over the chest, and the veins underneath are easily visible. People with other forms of EDS may also have slightly thinner skin than usual.
Fragile body tissues
Increased stretchiness and fragility of ligaments, tendons and joint tissues makes them prone to overstretching or even tearing (ligaments are tissues that connect bones together at a joint, and tendons connect bone to muscle). Therefore, limbs may be floppy because they are not properly supported.
In vascular EDS, certain body tissues and organs are particularly delicate. Blood vessels, bowel walls and lung linings may be easily torn, causing internal bleeding. Pregnancy in women with vascular EDS can be dangerous because the womb lining is fragile.
Other possible signs of EDS
Other possible signs of EDS are listed below:
varicose veins
limb and joint pain
hernias, where part of an organ bulges through the surrounding muscle
firm lumps (about 2-3cm) developing over elbows and knees, called molluscoid pseudotumours (common in classical EDS)
small, firm 'ballbearings' felt just underneath the skin, called spheroids (common in classical EDS)
small skin-coloured lumps in the side of the heel, called piezogenic papules, which appear when standing (common in hypermobility EDS)
skin folds close to the eyes and nose, known as epicanthic folds, which make the bridge of the nose appear wide (typical of classical EDS)
heart valve problems
scoliosis (curvature of the spine), which usually develops during adolescence, although is uncommon
gum disease (fragile, inflamed gums), which occur in periodontal EDS
Listed below is some other options in getting a diagnoses:
How is it diagnosed?
Many different doctors can diagnose Ehlers-Danlos syndrome. Your family physician or pediatrician would be the logical first step toward gaining a diagnosis. In addition, you may also work with other specialists in your diagnosis and treatment:
Dermatologist: specialist in skin diseases
Rheumatologist: specialist in rheumatic diseases
Orthopedist: specialist in diseases and injuries of bones, joints and muscles
Medical geneticist: specialist in inherited disorders
To determine whether you have one of the Ehlers-Danlos syndromes and to figure out which type you have, your doctor will review your family and medical history, complete a physical exam and complete laboratory tests.
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Janet you may not have EDS and that’s a good thing. I brought it up because for some chiarians their symptoms persist post decompression because a neck or cranio cervical instability further compress the spinal cord and brain stem. But, back to your original question…lol, I have not been seen at TCI but I know many people here have and recieved a great help there. If you are willing to travel you have more options too.
Jenn