Diamond Tiger <3, I hope you can find a way to deal with the Tarlov cysts.

When you said

,

I was surprised. I've become acquainted with quite a few people with MS over the years--and unfortunately there are many instances where people wait around undiagnosed for years, not knowing why they're having symptoms that are often disabling. The diagnosis isn't always so easy.

Hello, I hope you are doing well. To be honest I was surprised too after reading on the condition. I guess in my scenario was different because I was under a physician's care after going through my spine surgery and the after effects from it being under pain management.

When the symptoms began that made my physicians theorize it could be MS, it was much different from the symptoms I had been experiencing for several years at this point. I'm 39 currently. At the time of the MVAs I was in, I was barely 22. That caused my back injurybthat took nearly 5 years to get dx and fixed.
It was dragged out after seeking out many different doctors in different specialties to dx my spine injury. After having several scans done, all of them came back clean. Because of this, the door got shut on me per se in the sense of being told I was crazy or a addict. It took a new physician who listened to me and understood that something major had to be wrong after explaining how active I was and the competitive sports I also played besides working on my feet all day too. It got to a point I could no longer do these things any longer. To make a long story shirt as best as I can, it took a specialized test to show I had a grade 4 tear in a disc on a scale of 1-5, 5 being the worst. After finally getting the dx and having surgery, many physicians realized how wrong they were and listened to me whenever I complained, in which, I rarely did after my surgery. So, when the new symptoms began, I learned to be in tune with my body over the years and the doctors also learned to trust and listen to me. That is how it would have been dx so quickly had it been MS. I hope this answers your question.

Best wishes,

Diamond Tiger

Sometimes it takes a long time to find a doctor who is on the same page as you're on, who has a sense of where you're coming from. Some doctors just don't have that skill even though they may be really adept in other skills they also need if they're going to be decent doctors.

I'm not sure why so many people with MS have to wait a long time for a diagnosis. It must be a difficult disorder to diagnose, with lots of look-alike diseases to choose from. Then, too, some doctors tend to take women patients' symptoms less seriously than they do men's, and MS seems to affect woman more often than men.

I suspect that some doctors just don't want to diagnose MS because they can't offer us much by way of a remedy or cure, and they don't want to be stuck filling out lots of forms for the next several decades for an MS patient who needs to apply for a disability pension or handicapped parking or whatever. They'd really prefer to have patients with a more challenging diagnosis, something interesting that they can write up in a medical journal. To a neurologist, a case of MS is very ho-hum because it's a fairly common neurological disease.

I'm glad you were able to find the medical attention you needed and it sounds as if you now realize that you and your doctor(s) can work together as a team.

I do agree there are many doctors who don't want to take the time to do exactly what they went to medical school to do, which is, to help people and heal them of any ailments. There are many doctors who lack a bedside manner.

In my case I guess I made it easier on the new doctors I saw after my spine surgery and firing most of those doctors who chose to ignore my symptoms and help me. But, before I fired them I went back to see everyone of them to show them how wrong they were in the hopes in the furure that what happened to me would not happen to anyone else who came to them for help and to be treated with a open mind.

As a woman myself, I do understand what you are saying in the difference of how many of us are treated in comparison to men. My loved ones say I can be intimidating being a young strong attractive woman. I have the physical appearance of being prissy or another word is, fragile. I do not appear to look like a tomboy as I very much am. I dress up nicely 99% of the time wearing high heels with long fancy finger nails and jewelry. Most would never think that I grew up running around climbing trees to playing football with my younger brother or having a great love and interest in cars. Nor, would most who do not know me ever think I'm capable of lifting heavy furniture by myself or picking up a bowling ball or a billiards pool cue and playing competitively. In my case alone I can get how many doctors wouldn't take me seriously based solely on my appearance.

The doctor who helped me by performing the specialized test to dx the spinal injury understood this about me. He and his wife who was his nurse and office manager took the extra time to get to know me. After explaining to them my upbringing and bowling since I was in diapers. Plus, my parents were semi pro bowlers. My mom was given the oppurtunity to become a full time pro bowler and was asked to join the pro tour. Both of them realized I can handle a lot of pain and not a big baby.

My ultimate goal after my back injury was to return back to working, bowling, and billards pool. I wanted to follow in my parents footsteps and look at possibly becoming a pro just as they had. When the MVAs happened and I had to quit competing up until after I had my surgery, they also wanted to see the same for me and were willing to do everything in their power to help me reach my goal. I had to express to them to not just stick me inside a box. It woyld be wise for them to think outside the box also when it comes to me from past experiences when I was younger. Thankfully they agreed and dod every test they could think of doing from PET scans down to bone scans. The actual test that dx the ruptured disc is a discogram.

It is so frustrating at how doctors never thought of performing this test. None of the doctors prior had ever mentioned this test. As you can imagine I was upset about this. Had the doctors kept a open mind and chose to really help me, I would not have been in that kind of pain for close to 4 years. I may not have ended up with as much nerve damage either.

With the nerve damage the ruptured disc was not the sole cause of it. I was also dx with having a split piriformis muscle that was pinching the sciatic nerve. I had to have surgery to cut one side of that muscle to release the sciatic nerve. If that wasn't enough, now comes the most recent dx of Tarlov Cysts that is conoressing my nerves too.

Only after these surgeries and doing pretty good afterwards up until I had a bad flare up but it being much more than that was when the MS possibility came into consideration. Now, I also learned the Tarlov Cysts were present when I had my spine surgery but my surgeon never mentioned this to me, nor, did he do anything about it when he was repairing my back. I learned later why he didn't do anything for the cysts and I agree with that.

What I disagree with is failing to mention this fact to me. I wonder more now how many times has something like this happened to people when a physicians fails to disclose that information. The saying is that doctors know best. In sone way this is true but not completely. The best doctor of your body is yourself.

My suggestion to everyone is, seek out help from as many physicians as it takes to help and dx the problems. Your own body says something is wrong, listen to it. Do not accept 1 doctor's answer. Get multiple opinions. Just because there may not be a cure for your condition does not mean to not get help. There may be treatments that can help. Just like MS, there isn't a cure for Tarlov Cysts either. I can relate to this issue. It does not stop me from getting help. I plan on returning back to bowling and billards pool competitively again once I come to a point my condition calms down as best as I can get it to.

Best wishes,

Diamond Tiger

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.

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.

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.