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New with Tarlov cysts

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Unread 07-26-2013, 06:22 AM   #1
Tigerlilysandybanks
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Default New with Tarlov cysts

Hello.
I found this forum after som googling and looking for answers. You have to excuse my pretty bad english, I'm from northen Europe.

Two months ago I did a mri because of my hip problems and pain. I have ehlers danlos syndrom and they subluxate.
On the mri they found tarlov cysts. I was not told how many, just "multiple bilateral nerv root cysts in the sacral canal, and one about 5 cm pre-sacral".
I have been trying to get more answers from my doctor, atleast how many cysts I have and if 5 cm is small or big?
He says i dont know yet and have ordered a new mri and I have to wait a couple of months.
I have ordered my mri pics and can clearly se some of the cysts.

My doctor thinks that many of my pain problems come from the cysts. But he also told me that there is probobly nothing to do with them to make me better.

Is 5 cm a big cyst?
Can anything I do force them to grow more?

I just can't stand waiting and waiting to get more information about these cysts from my doctor.
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Unread 08-06-2013, 12:32 AM   #2
Tigerlilysandybanks
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Ooo E

Edit: I read my questions again and noticed that it sounds strange. I wonder if they usually grows bigger over time, and if there is something I can do to PREVENT them from growing, something I should be extra careful with in the daily life.
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Unread 08-14-2013, 05:22 PM   #3
Bridges
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The size and number of the cysts is not the determining factor in whether they cause pain, it is the location of the cyst. The 5cm cyst on my T5 vertebra caused disabling pain and muscle spasms for nearly five years. I am not aware of any lifestyle choice that will reduce the size of the cyst, however they can become symptomatic as a result of physical trauma.
Bridges
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Unread 08-16-2013, 08:01 AM   #4
Tigerlilysandybanks
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Quote:
Originally Posted by Bridges View Post
The size and number of the cysts is not the determining factor in whether they cause pain, it is the location of the cyst. The 5cm cyst on my T5 vertebra caused disabling pain and muscle spasms for nearly five years. I am not aware of any lifestyle choice that will reduce the size of the cyst, however they can become symptomatic as a result of physical trauma.
Bridges
Thank you for your answer Bridget. My doctor says he thinks my cysts causes much of the pain that I have. This last months I feel the back pain is getting worse, and I feel like stiff around my lower back and "tail".
I have like bubblewater at several parts of my feet, legs and back and even in my face.
I also have ad/hd and very often I push my body to do heavy things thatI shouldn't, but I cant relax. Thats why I worrie that heavy lifting etc can make all symptoms worse.
Is it possible and ok to post pictures here?
I have some on the cysts from my mri.
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Unread 08-16-2013, 10:06 AM   #5
Bridges
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Lifting heavy objects can certainly aggravate your condition. Yoga, meditation, aquatic therapy and lifestyle changes were all methods I employed to cope with the disability. In my opinion, surgery is the only option for regaining your health.
Regarding posting of pictures on this site: I do not think it is possible, and there would be no reason to. Your MRI's are subject to interpretation by the professional viewing them. A neurologist familiar with Tarlov cysts will be your best source of information.
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Unread 09-09-2013, 08:34 PM   #6
diney1957
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Quote:
Originally Posted by Tigerlilysandybanks View Post
Edit: I read my questions again and noticed that it sounds strange. I wonder if they usually grows bigger over time, and if there is something I can do to PREVENT them from growing, something I should be extra careful with in the daily life.
mine too is 5mm and the dr told me it is significant, and a reason for pain. I have no idea if there is something we can do to prevent it from growing, I am just beginning to understand them.
This site is the only one that has real people with real problems such as ours, and at least we can sympathize with each other. I wish you well
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Unread 11-19-2013, 09:02 PM   #7
SunflowerGarden
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Quote:
Originally Posted by Tigerlilysandybanks View Post
Hello.
I found this forum after som googling and looking for answers. You have to excuse my pretty bad english, I'm from northen Europe.

Two months ago I did a mri because of my hip problems and pain. I have ehlers danlos syndrom and they subluxate.
On the mri they found tarlov cysts. I was not told how many, just "multiple bilateral nerv root cysts in the sacral canal, and one about 5 cm pre-sacral".
I have been trying to get more answers from my doctor, atleast how many cysts I have and if 5 cm is small or big?
He says i dont know yet and have ordered a new mri and I have to wait a couple of months.
I have ordered my mri pics and can clearly se some of the cysts.

My doctor thinks that many of my pain problems come from the cysts. But he also told me that there is probobly nothing to do with them to make me better.

Is 5 cm a big cyst?
Can anything I do force them to grow more?

I just can't stand waiting and waiting to get more information about these cysts from my doctor.


5 CM is a large cyst. You should consult the doctor in Dallas -Feigenbaum Neurosurgery P.A.

If I consider surgery, he will be the one to go with.
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