Quote:
Originally Posted by agate
Doctors apparently often don't reveal a finding if they think it's not likely to be a problem for the patient. Why worry the patient needlessly?
At least I'm guessing that that is the way the thinking goes. I appreciate it when I'm told if there's a finding, and a number of times doctors have mentioned something like "a blood blister in your ear" or something else that I hadn't been aware of.
Tarlov cysts are apparently asymptomatic as a rule. That's probably why the surgeon didn't mention it:
Tarlov cysts: A cause of low back pain? - Mayo Clinic
I hope you can get back to your bowling soon! I used to bowl and it was very enjoyable (even though I was terrible at it). I can understand that you would miss it. Interesting chitchat among the players, nice atmosphere, whenever I was bowling anywhere, but maybe truly competitive bowling isn't so relaxed. |
I can understand to a certain extent that the cyst not being mentioned to me being out of not worrying me more. In my specific case, the cyst is compressing one of the same nerve roots that the ruptured disc was also pinching. In any event, I think in order for anyone to get the best care the patient should be informed of everything just as much as a physician should be informed of any new symptoms, medications, and etc...
Another symptom I had that was new to me before the Tarlov Cysts were found is headaches. It was another thing that led my physicians down the road of MS, Fibromualgia, and Lupus as possibilities.
Headaches? I'm sure many will read this thinking that is common that everyone suffers from regurlarly. Sure, for most it may be. In my case I do not suffer from headaches regurlarly. If If I have headaches, I may get them a handful of times a year. When I began suffering from them every few days, that was significant for me. The other symptom was when I suddenly fell without any reason. I lost my balance like my leg had went numb on me out of the blue. After it had happened, many of the same symptoms I suffered from before my back surgery were excacerbated. I informed my physician that I felt as though I never had my back surgery. That is when many theories came about including MS.
Only after having several tests done from bloodwork to a current MRI had the tarlov cysts been found. Another troubling issue is the fact most radiologist do not report this finding unless there is a possibility it could be the cause of the patient's complaint.
Once I took the time to research about it, most of my symptoms had matched up with it. But, it also matched up with MS and a few other possibilities also. Had I not had prior back surgery to know how different my body felt after the fall, I probably would be typing this right now explaining nothing can be found of what my problem is after all the tests of ruling out MS and etc... That is a scary and frustrating thought.
In my view it should never matter whether a physician thinks the finding is relevant to the current complaint or not.
This time around I understand exactly why my symptoms have flared up more than normal. A family member fell and I had to help lift them off the ground. For myself that is a lot of strain on my body given not just my condition, but also, the fact of being a big difference in size and weight. My loved one is 6'4 and weighs 280lbs.
I'm 5'3 and weigh on average of 106lbs. That is a huge difference. Since their fall, unfortunately they had to have back surgery from having a fracture as a direct result of the fall. For 3 months I have had to push them around in a wheelchair because of them being unable to walk very well or far without excruciating pain. Currently it is completely understandable I would be suffering more than usual right now.
Although, I do bowl, shoot pool, and even can lift heavy furniture around 60lbs by myself without causing my symptoms to be severe, almist 200lbs difference is more understandable.
The greatest concern I have now is, have I sped up the disease to cause me to be in worst shape and may not be able to return to the activities I enjoy so much. Its a big part of who I am.
I have read tarlov cysts can be just as debilitating as MS.
Yes, I do hope I am able to return back to bowling and shooting billiards pool. I enjoy the sports as much as the environment and company of people I meet. I enjoy competing in tournaments as much as I enjoy it for leisure. I have had physicians express to me that I would never be able to do these sports again. It was expressed in both the sense of my condition would eventually prevent me from doing so. Or, I should not be doing them in order to help better manage my pain.
I expressed to the physicians that will not happen as far as quitting. I refuse to only be a shell of myself. What is the reason for living if you can't enjoy life. I do understand there may come a point that I will no longer be able to do them, but until that time I am going to enjoy doing them.
It is frustrating how much physicians do not disclose when there is a new finding. Whether its from bloodwork, images, or any other tests.
I also have read that connective tissue diseases could be a cause of tarlov cysts. Yes, there are many possibilities when symptoms are common among many diseases and disorders.