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Tarlov cysts - just diagnosed

AndiG
0 Recommendations

I am looking for a doctor in Canada that treats Tarlov Cysts.
I am a 36-year-old female who suffers from chronic neck and back pain. My neck and lower back were fractured 18 years ago in a motor vehicle accident but no x-rays were done at the time and I was never treated.
I have three bulging discs in my cervical spine and am still recovering from a bulging disc in my lower back 11 months ago. My scatica is better although I still have pain in my buttocks, hip, thigh, lower leg and foot, as well as a heavy, uncomfortable numb feeling in my foot.
I just found out when changing doctors that I have a Tarlov cyst that I was never told about. The radiologist thought it was an incidental finding and I have an idea that the doctors around here don't know much about them.
I have researched it myself and it seems pretty clear to me that the symptoms that my last doctor dismissed as 'weird' could, in fact, be caused by this cyst. I am afraid if it goes untreated I will suffer long-term damage.
I am trying to gather as much info before I see my doctor again. I am on a two year wait list to see an orthopedic surgeon, I can't work and due to depression I find it very difficult to take pain medication as it alters my moods.
Doctors have made me feel like this is all in my head for so many years I almost believed that it was. I even had ECT treatments in my early 20's.
As much as my recent diagnosis of the fractured neck and tarlov cyst scares me, I also feel somewhat vindicated.
Now, after reading all of your posts I also feel connected and not so alone.
If anyone knows of a specialist in Canada that I can tell my new doctor about, it would be much appreciated.

Andi

Explore topics in this discussion:

Surgery Herniated disc Pain Back pain Tarlov cysts Depression

5 replies

Maggie2300

Hi Andi

I am so sorry to hear about your Tarlov cysts. Suffering from them myself I can understand just how you feel. I would suggest you go to the Yahoo groups site and they have a Tarlov cyst group which you can join. I think if you go back and do a search of Tarlov cysts you may find a link to the site. You will find them very helpful and I am sure there was a specialist mentioned in Canada. Please make sure you see a neurosurgeon and give the ortho a miss as this is very delicate surgery if they decide to do it, but all your symptoms sure are from the cyst.
Good luck and I will be thinking of you.

Maggie

AndiG

Thank you Maggie.

I am afraid that this will be another uphill battle like everything else in the medical system is.

It was recently determined that as a result of my neck injury 18 years ago I am suffering from a reversal of the cervical lordosis which has caused significant disc degeneration and pain.
I went to physio today and brought the x-ray, (the condition is very evident in the x-ray.) My therapist told me that she didn't know how to read it, so when I explained what the doctor had shown me, she was offended and told me this reversal was just due to a muscle spasm.
I just switched doctors due to ignorance and a big ego, looks like I might need to find a new physiotherapist.
I am just venting, very frustrated with the system. But thank you for the info on the Tarlov Cysts - hopefully my new doctor that will take this seriously.

Andi

ColleenInCanada

Hi Andi.

Did you ever find a doctor in Canada who specializes in Tarlov cysts? I have just been diagnosed with a 1.5 cm cyst in my s2-3 region - after 3yrs of agony! I was treated for everything from a torn hamstring to a herniated disc before my doctor finally sent me for an MRI. I'm waiting for an appointment with a neurosurgeon but have been told it could take several months just to get an initial appointment. It seems like most doctors don't consider this a serious condition - it's very frustrating!

Colleen.

marywithtcs

Hi Andi,
I have a Tarlov support group that has 3 Candaians on there that are also looking for a dr. in Canada that treat Tarlov cysts, as yet we have not found any...
I had two surgeries for TC's in the last 5 years.
Dr. Feigenbaum in Kansas City, Mo. was the Dr. that did my last surgery, if there is anyway you can get your Ins. to cover surgery with him, he will take you on. I know he has done surgery on another Canadian.
my support forum is Straighttalkabout tarlovcysts, just google it and you can find us if you would like to join our forum. take care and know that you are not alone.
Mary

shanondorah

I too have been diagnosed with Symptomatic Tarlov Cysts.... the most informative sites I have found is www.tarlovcystfoundation.org I emailed the president Reta Honey Hiers, RV,C & she got back to me rite away! I am in contact with her often.... she is very imformative & understanding as she too has Tarlov cysts.... the site is constantly updated with drs & information. Good Luck & heres to a pain free day

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