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Old 10-14-2020, 01:12 AM #11
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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.
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Old 10-14-2020, 02:53 PM #12
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Originally Posted by agate View Post
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.
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Old 10-14-2020, 05:00 PM #13
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Quote:
Originally Posted by agate View Post
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 meant to add this to my post.
Thank you for sharing the link. I have read many articles on the disease after doing a Google search on it.

If only it was easy to have the cysts drain but its not. Based on all I have read and after consulting a few of my physicians on it, I was informed the surgery is classified as high risk that can lead to spinal fluid leaks from surgery, especially in my case. Because I have bilateral cysts it is a greater possibility. Plus, the surgeries for it are not a good outcome in most cases. 2 neurologist and neurosurgeons had said there is a great likely hood I would have to have more surgeries after having the first one because the cysts will fill back up with fluid. Because the cysts are connected to the berve roots there is no way kf having them completely removed either. At this point in time there is not enough research on the disease, nor, enough surgeons who perform the surgeries in the U.S. right now. Its best that I wait as long as I can to not have the cysts drained. Only other option is to have epidural injections to help with pain but that too can cause the cysts to grow bigger in size.
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Old 10-15-2020, 11:40 AM #14
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Since a Tarlov cyst can be as debilitating as a chronic neurological disorder like MS, maybe one way to deal with it might be to take a page out of the MS book. People with MS who are caught with it in the middle of active, still-young lives have to face putting an end to activities they depend on for self-support (their entire careers, often) and for relaxation (sports).

Usually the process of giving these up or modifying them is a slow, gradual one but unfortunately it often has to happen.

People who are involved in physically demanding activities may be the hardest hit by MS. A person like me is luckier: With a fairly sedentary lifestyle to begin with, often all I had to do was slow down my usual activities or do them in a very limited way (half an hour at a time, then rest, for instance).

Even so, when I look back over 40 years with MS, I realize that there are many things I did regularly as a younger person but no longer can do: choral singing, playing the piano, cooking, most walking, most social occasions, all travel, knitting, needlepoint, quilting, reading print material for any length of time, even sitting in most chairs is out of the question. (I have a wheelchair that I use for all sitting, and it has a special inflatable cushion. It took years of trial and error just to find a way I could sit without pain.)

That list of things I no longer do might be depressing but I've found workarounds that are OK, and I just try not to think about the things I might have done. That kind of thinking isn't helpful for me.

I gave up my piano in 1981. There is a publicly available piano in this building, and about 8 years ago I tried to play it, realized I couldn't, and gave away most of my sheet music. Sometimes I hear a neighbor who is older than I am playing away on that piano, and I don't think about how I might have been able to do that if I didn't have MS. I look at all of the things I can still do--and think often of the many people I know who aren't nearly as lucky as I am.

I don't know of anything I can say that will ease your mind about the Tarlov cyst except to hope that it won't cause you to be miserable and that you'll have the care and attention you need to keep your life as comfortable as possible.

You may be able to find a way to do a modified form of bowling and the other activities you like. Modern technology keeps coming up with new ideas. That might seem like not much of an alternative but I've found some amazing solutions just by looking around for them.
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Old 10-17-2020, 10:35 PM #15
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Quote:
Originally Posted by agate View Post
Since a Tarlov cyst can be as debilitating as a chronic neurological disorder like MS, maybe one way to deal with it might be to take a page out of the MS book. People with MS who are caught with it in the middle of active, still-young lives have to face putting an end to activities they depend on for self-support (their entire careers, often) and for relaxation (sports).

Usually the process of giving these up or modifying them is a slow, gradual one but unfortunately it often has to happen.

People who are involved in physically demanding activities may be the hardest hit by MS. A person like me is luckier: With a fairly sedentary lifestyle to begin with, often all I had to do was slow down my usual activities or do them in a very limited way (half an hour at a time, then rest, for instance).

Even so, when I look back over 40 years with MS, I realize that there are many things I did regularly as a younger person but no longer can do: choral singing, playing the piano, cooking, most walking, most social occasions, all travel, knitting, needlepoint, quilting, reading print material for any length of time, even sitting in most chairs is out of the question. (I have a wheelchair that I use for all sitting, and it has a special inflatable cushion. It took years of trial and error just to find a way I could sit without pain.)

That list of things I no longer do might be depressing but I've found workarounds that are OK, and I just try not to think about the things I might have done. That kind of thinking isn't helpful for me.

I gave up my piano in 1981. There is a publicly available piano in this building, and about 8 years ago I tried to play it, realized I couldn't, and gave away most of my sheet music. Sometimes I hear a neighbor who is older than I am playing away on that piano, and I don't think about how I might have been able to do that if I didn't have MS. I look at all of the things I can still do--and think often of the many people I know who aren't nearly as lucky as I am.

I don't know of anything I can say that will ease your mind about the Tarlov cyst except to hope that it won't cause you to be miserable and that you'll have the care and attention you need to keep your life as comfortable as possible.

You may be able to find a way to do a modified form of bowling and the other activities you like. Modern technology keeps coming up with new ideas. That might seem like not much of an alternative but I've found some amazing solutions just by looking around for them.
I appreciate hearing from you and your words of advice and wisdom. I hate to hear you have had to give up so many things in life from your younger years because of MS.

From the standpoint of having MS to having Tarlov Cysts it appears I may still be the luckier one. If I lived a more sedentary lifestyle and perhaps much older in may not impact my life to the same degree as it is now because of my age.

I do understand that day very well is going to come that most of my activities I may not be able to do at all anymore. Am I ready for that day, no I'm not. Its not just how it would change my life of the enjoyment I get from activities, but I worry about my loved ones and how it is going to affect them. I never want to be a burden on anyone. There seems to be the conundrum, how do you partake in the activities that you enjoy doing without making your condition worse, but not give it up to the point you aren't enjoying life and are half of a shell of your prior self?

I know things have to be taken one day at a time and in baby steps too. I try to slow myself down when I walk or move about. My natural body habit is to move fast and walk fast. I think part of it comes from waiting tables for years. The faster you moved, the more money you would make.

My physician started me on a steroid pack to take for 7 days which seems to be helping to where I can move around like my normal self for the most part. I know when the 7 days ends, it may not be so any longer unless he prescribed another pack.

With bowling, there is a handicap rail that people use who have disabilities. I know that is a option later down the road if I can no longer throw my own bowling ball like normal. Praying this does not come to fruition for many, many more years.

Best wishes,

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Old 10-18-2020, 01:27 AM #16
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Quote:
There seems to be the conundrum, how do you partake in the activities that you enjoy doing without making your condition worse, but not give it up to the point you aren't enjoying life and are half of a shell of your prior self?
I don't know if this would work with other disorders but for me, every time I start an activity, I try to make sure I won't mind too much if I have to stop and rest often or maybe even abandon the project entirely until the next day--or the next, depending on how I'm doing.

This goes for ironing, vacuuming, or any project like cleaning the refrigerator or cabinets. But it also goes for activities that are recreational, like gardening. My "gardening" involves a few potted plants on a patio that are kept high enough for me to get at them, and a few more potted plants indoors, but just repotting one or two of them can be tiring. I'd need a couple of breaks before finishing.
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Old 10-18-2020, 03:42 AM #17
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I don't know if this would work with other disorders but for me, every time I start an activity, I try to make sure I won't mind too much if I have to stop and rest often or maybe even abandon the project entirely until the next day--or the next, depending on how I'm doing.

This goes for ironing, vacuuming, or any project like cleaning the refrigerator or cabinets. But it also goes for activities that are recreational, like gardening. My "gardening" involves a few potted plants on a patio that are kept high enough for me to get at them, and a few more potted plants indoors, but just repotting one or two of them can be tiring. I'd need a couple of breaks before finishing.

I do believe your advice and suggestions can apply to most things in general.

I will give you a example:
Because of Covid, I have ordered my groceries online and have them delivered to my house just yesterday. It was $700 worth of groceries but should last me a month or longer.
The delivery guy unloaded his trunk and sat everything in my car garage to make it easier for me to grab and is closest to my kitchen since the entry door into my house from my garage goes directly into my kitchen. I knew I had a bunch of refrigerated items that had to be put away immediately. I believe I mentioned I have a loved one who I have been taking care of that just had back fusion surgery a few months ago and is still gaving difficulty moving around with the use of a cane to help him.
He tried to help me carry the groceries inside, but I knew he wouldn't be able to do much and thats ok. I worried about the few trips he had helped me, he would lose his balance and fall, or hurt himself again. My natural reaction was to walk and move at lightning speed to get the groceries inside as quickly as I could to prevent there being a accident and he may fall again. I was able to help lift him up off the ground a few months ago right after he fell, but I'm not sure I would be able to do it again right now. I kept telling him to just sit down I had it, but he insisted on helping me. There are many instances of this that goes on in my every day life. The faster I am on my feet, the better the chances there wont be another accident with him.
As for myself, I do know there is a good chance I could lose my balance with my leg going numb suddenly, or I have a sharp shooting pain strike me without warning and I end up being the one who falls instead. I guess if anyone were to fall, I would rather it be ne than him.
What is scary, this almost happened to me a few weeks ago when I had taken the garbage out and was rolling the trash can out to the street. I felt fine until right as I got halfway to the syreet with the trash can, the pain and numbness hit me out of nowhere. I thought I wasn't going to make it back into my house safely without falling. Thank the good Lord I had barely made it through the door when my leg had given out on me and the sharp pain intensified for me to collapse into a chair just in time. I am struggling with that kind of balance as well with house chores.
I even had a problem one day anout a month ago just trying to take a shower. I stood up and walled towards my bathroom to turn the water on. Before I could make it, my feet had rhat sharp stabbing pain with the tingling numbness sensation. I could not walk any further or put any of my body weight on that foot. That was scary too. It is frustrating to feel fine one minute and to be moving around pretty well to suddenly go to that extreme of not being ok. There cones into play of loved ones not being understanding of what is wrong. Over the years even before the Tarlov Cysts dx, I often ran into this problem with them. Whether it was just being in so much pain even with medication not being able to do many things. Or, being accused of being a addict to pain medications even though the prescriptions were all prescribed by one of my physicians and I was taking it as directed. I'm still trying to work around these things the best I can right now.

Best wishes,

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Old 10-18-2020, 06:38 PM #18
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Yes, it's the unpredictability and the frequency of these episodes that people often don't understand. I never know just when I'll give out or what part or parts of me will give out.
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