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Old 12-06-2020, 06:41 PM #11
Diamond Tiger<3 Diamond Tiger<3 is offline
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Diamond Tiger<3 Diamond Tiger<3 is offline
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Hello Anndav,

I am glad to hear the website has been helpful to you. I am sorry to hear about your recent visit to the neurosurgeon. This is why it is crucial for you to see a physician that is knowledgeable and specializes in Tarlov Cyst, because not every neurosurgeon is.

Having a cyst that size I'm sure is causing some of your pain. With regards to remodeling bone that is one of the things the cyst can cause too. I believe it is playing a partial role with my back. Over the last few months since I began experiencing realky bad pain I have noticed my back where the cysts are licated has been popping a lot. It seems like every time it pops, the pain gets worst than before. At first I thought it was cracking from the several years prior to fusion surgery I was going to a chiropractor and over time my body does it on its own from the many adjustments I have had. But I know now its not the reason.

You have good reasins to worry about the cyst being the direct cause of your pain. Please don't ignore the other pissibulities such as the SI joint and piriformis muscle. All three issues can mimic the same kind of pain.

I know its hard to be patient with physicians when you are experiencing so much pain and discomfort. I have been down this road. It took almost 4 years if going to dozens of different physicians to diagnose the ruptured disc in my back. I hope when the neurosurgeon you contacted about the cyst yoy reached out to contacts you, it will help you.

When you saw this other neurosurgeon the other day, did you ask their opinion about the SI joint and piriformis muscle?

Hang in there hun. I will be praying for you!

Best wishes,

Diamond Tiger<3
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Old 12-14-2020, 11:55 PM #12
anndav anndav is offline
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anndav anndav is offline
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Hi Diamond Tiger,
Have not been on this site for awhile. I have found a lot of information on a couple Facebook groups about Tarlov cyst. So Ive been reading a lot of those posts.
The neurosurgeon I had last at ccf was not very helpful at all. I mentioned piriformis and he said that is no the problem along with the cyst not causing my symptoms 100% sure. I told him the other neurosurgeon who referred me that it was was 70 cyst 30 lumbar. He said he disagrees with both areas and that it is systemic. I had 11 blood tests for autoimmune and other things all normal. I had the emg on Thursday and will see neurologist this week for results. Tarlov cyst specialist will be 1st week of January.
I hope your pain is getting better and I am praying for you.
Thanks for all your help
Anndav
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Old 12-18-2020, 01:40 AM #13
Diamond Tiger<3 Diamond Tiger<3 is offline
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Diamond Tiger<3 Diamond Tiger<3 is offline
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Hello Anndav,

I'm glad to hear from you and to hear about the Facebook groups you have found. I hope you are learning a lot from them and are getting the support from others who have this disease.

I'm sorry to hear about your visit with the neurologist. It is good to have bloodwork done. I also have read that there could be a connection between Tarlov Cysts and autoimmune diseases like M.S. as a example. Originally my neurologist had felt that I had M.S. as a result of finding multiple cysts. He performed a spinal tap after ordering a ton of bloodwork and it confirmed I don't have M.S. but I understand why the thought was there. Based on all I have read there are many similarities that both diseases share. I was checked for others like lupus but it also came back negative too. I'm praying and thinking of you. Next month will be here before you know it and I hope this visit turns out much better and you get more answers.

As for myself, I'm doing ok. Because of Covid I have not been nearly as active as I usually am like shooting billiards pool and bowling. I hope when things are better with Covid I will be able to return to the bowling alleys and pool halls. Its a big part of my life and bowling I have been doing since I was in diapers.

I hope your pain has been better and is becoming more manageable with help from pain management.

Best wishes,

Diamond Tiger<3
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