Torval Cyst

[wiserlady6]

Has anyone any personal experience of coping with a torval cyst please?

[Hidden]

If what you're referring to is Tarlov Cysts, then yes! I suffer from large cysts on my tailbone at s2 level. I've suffered specific pain from them which has increased a great deal in the last year. I also have chronic back pain from two ruptured disks and the cysts were noted on an MRI several years ago. My orthopaedic doctor, who was a lead researcher in a large clinical research study of different treatments in 3000 people with symptomatic tarlov cysts in China years ago, insists it's more harmful than helpful, in most cases, to attempt any type of surgical treatment in that area. Since these cysts are inside the spinal cord sheathing and are covered by and surrounded with delicate nerves, any attempt at surgical removal, wrapping or aspiration of the cerebral spinal fluid they contain do nothing to help long term and often cause greater problems than just leaving them alone.

I've done a lot of research on my own as well since I now can't exercise or often can't do anything including sitting or standing and often even riding in the car really hurts. I also have noticed that when atmospheric pressure is changing my symptoms are worse! All activity exacerbates the pain which is horrible since I also have suffered from fibromyalgia for over 15 years and exercise is supposed to be the most helpful thing for that. It's very frustrating. The only thing that helps is to lay flat, use heat and ice alternately, menthol cream applied right to the site and I've even put a tens unit on it with one of the pads directly on the tailbone (i think it's just the distraction that helps and it's very temporary).

I have to feel fortunate though because I've read that many folks actually lose bowel and bladder control with these cysts and for now my pain is deep and aching, constant and just recently i it's been becoming sharp intermittently. I think if it gets to the point of leg pain and numbness and lack of control then maybe consulting a neurosurgeon is the ONLY recourse however cysts can return or new ones can form and the risks involved g are high.

Where are yours located and what are your symptoms?

[wiserlady6 in reply to Hidden]

Thank you for your response. I am not sure this is what I have.

My problem started nearly two weeks ago. I was fine, bent down to pick something up - not something heavy - and my back went, was in agony and unable to move. It took me a while to be able to move about and was hurting a lot for a while, this very gradually went.

But the day after my partner noticed I have a soft lump at the bottom of my spine, it may have been there before, but had never noticed it.

It is tender if touched and radiates pain around it when I move or bend. Other times I can forget it is there.

Nearly two weeks later a lot of my pain has gone but the tender bump is still there, it is soft and can move a bit if touched.

This is really worrying me and my research said it might be a torval cyst, as this can be brought on my a "trauma".

I do feel for you, it cannot be much fun to live as you do. I have nbeen looking at getting a tens machine for the pain, as cannot take pain killers, they give me bad side effects.

How are you coping now? Are you in the USA? Am in UK, aged 58.

[Hidden in reply to wiserlady6]

I'm 46 and live in the U.S..I'm not doing well, the pain has increased a lot in the last year and I'm home bound most of the time, when i do take a trip i suffer increased pain for weeks after. A tarlov cyst isn't something you'd be able to feel as a bump from the outside so hopefully it's not that! Possibly a severe chronic muscle spasm? I have those too from damaged nerves and 4herniated disks in my neck along with degenerative disk disease and osteoarthritis-lucky me huh? I got trigger point injections in the spasmed muscles in neck and down the whole right side if my back (the one in my neck did feel like a lump) they used steroids and it helped for about three weeks this last time (Sept 1st). I've had them two other times so the next time i get them I'll get botox and it is supposed to last for 3months. That may help you if it's indeed a muscle spasm and trust me,they sure can last for weeks and months! A tens unit often helps to a degree as does menthol cream however nothing really relaxes a severe one but trigger point injections.

I hope you can find some good relief soon!

[wiserlady6 in reply to Hidden]

Thank you so much for your helpful and positive reply. Am sorry you are having such problems. It is good news to hear that a torval cyst cannot be felt from outside. This bump is in the middle bottom spine, so that if you sit it is just at the bottom of your back. It radiates some pain along my right upper leg and a little in my arm and right ear, and it is awkward to lay down as it is soft tender and feels bruised them. Hence I thought of a tens machine. I am in england, everything is different here. You cannot make the same demands and choices. I like to think that that as it seemes to have appeared or got worse because of me bending forward it is something temporary but two weeks later it is still the same. A nurse told me it worried her and to check it doesnt get bigger, tutting it might be c.... I am now sick with worry and cannot think of anythign else or sleep. Have always been a worrier. I have to understand somethig before I can stop thinking about it. I got my partner to take a photo of it on his mobile phone to see if it is bigger another time in the future, how the heck can I see it myself? Far easier for someone else to. BUT he cannot remember the size it is so a photo tells you. Am not happy to just wait and wait and hope like that either, in case it gets worse.

As for tens machines, all new to me. I understand you can get cheap ones and better ones but wonder what extra you get if you spend more?

[Hidden]

If I were you I'd schedule an appointment to get it checked out as soon as possible but try not to worry as it could be something as minor as a common non "c-word" cyst that just happens to be affecting the surrounding nerves causing referred pain and spasms. Try not to worry, that does no good as I'm sure you know.

I'd use heat and ice and take an anti inflammatory while you wait. I am unsure about differences in tens units-I've only had one type and it's the one my doctor prescribed and insurance covered, I've had it several years.

I'm not exactly sure what it's like there in the UK but here we have to begin with our primary care physician (GP)who then gives us a referral to a certain specialist then we have to schedule that appointment and wait weeks sometimes months to get in then if tests are NEEDED, an order will be written then we can schedule that test and wait again to get in for the test then often it takes several more weeks to get back in with the specialist to discuss findings. I can't just ask for or demand a test and get it done unless I'm willing to pay for it myself which is completely unrealistic! We pay a small fortune (currently over 800 dollars a month) for health insurance through my husband's employer and STILL have to pay a co pay at every appointment and a higher co pay for specialists as well as co pays for prescriptions. It's so expensive and with the recent changes with the new national health care being made available, we're paying more and more and receiving less and less benefits-I am concerned because it's already difficult to wait so long to get appointments and it's only going to get worse-at some point it will no longer make any sense to keep our current health insurance but the new national program cost is not cheap either as it's based on your income. It's also mandatory so if you don't participate you get fined when you file your taxes each year with the cost of that fine also depending on your income- but it's substantial; there is also still a Medicare and Medicaid program for very low income individuals which is paid for by hardworking tax paying citizens like us. The national program will eventually phase out private health insurance and is creating a big issue with supply and demand. Just in the last year they now can put you with a physicians assistant or nurse instead of a doctor and we still have to pay the same amount! It's NOT so great!

I have to call my Dr and be sure he wrote that the next time I should get trigger point injections using botox, as he suggested to me, instead of steroids for this neck and back pain and spasms before I can return to the pain clinic; I'm hoping I won't have to wait several months to get in again like I had to the last few times. Those injections just stopped working-last night the burning returned and the spasms are back. It seems like it happened overnight! The weather just started getting colder so that doesn't help.

Hang in there and try not to worry, I've had increased pain and spasms that have lasted months before and it was nothing life threatening, just took the pain clinic a few tries and several rounds of trigger point injections over several months for the doctors to find the exact right areas to inject for relief. They also prescribed muscle relaxers that helped minimally. Hang in there and think positive!

[wiserlady6 in reply to Hidden]

Thanks. Am seeing a nurse tomorrow. Originally she kept saying to leave it and see if it gets bigger, was not happy with this and insisted they check it out properly. I cant take pain relief, gives me too many bad side effects, which is why I looked at the tens machine as an option.

[Hidden]

Good luck!! Please let me know how it goes.

[wiserlady6 in reply to Hidden]

Was told by one nurse a few weeks ago it was a DANGEROUS lump which worried her. The second nurse says ite is nothing BUT if it stil hurts in a month to let them know so they can sort it. I said it might be a perineural cyst, which is a fatty lump middle of back, which radiates pain sometimes also down a leg - which decribes it precisely - she had never heard of this. She said it cannot be a torval cyst. When I asked her to promise me it is not cancer she refused to. Yet she said that cancer would be much more solid and would not appear when you bend over. She said ite might be a herniated disc. I have read that 90% of pain lower back which sometimes radiates down the leg is caused by a herniated disc, and this can happen when you just bend forwrd, which is how this happened.

I do get fed up with nurses who give different opinions, it means at least one of them is wrong.

The first nurse had told me that I have kidney disease. The second one says no way. The first nurse said I have dangerously high blood pressure and tried to sel me a blood pressure machine so I could monitor it for a few weeks - I borrowed one rather than waste money on it - the second one said that the reason my original reading had been so high was because I was in a lot of pain then and had a bit of a fever with it then. And that none of my figures are worrying.

Even though they say over 120 is bad and mine are abotu 135 sometimes.

My partner took me out for the day yesterday. I needed that as had been stuck indoors on my own worrying, it does your head in doesn't ite when you are on your own and it goes around and around in your head.

Have decided to make some changes my my diet to help my kidneys so that they dont get bad. Will eat more fruit and veg and less protein

and at least a few days a week will just drink natural still water naturally mineralised. Any fool can just let their body go to rack and ruin, I prefer to try to make sure it doesn t get bad in the first place. I know that age will eventually affect it and mean it doesnt work so well bute that doesnt mean we have to just roll over and die and become victims to it.

[Hidden]

How did your appointment go? I'm hopeful you're able to find something to help you and get the answers you need.

[wiserlady6 in reply to Hidden]

Hi, thanks for your concern you lovely person.

[wiserlady6]

Thenurse said she was sure it was not a tumour as a tumour is hard. She thought it might be herniated disc or alump of flesh _ have read they call this a back mouse -

and she said to wait a month and if the pain is still there they would send me to a consultant. I reminded her that it had appeared when I bent over badly picking ujp a pencil so did not see how it could be a tumour She said it cannot be a torval cyst.

She didnt think much about it really beause she said her husband has various painful lumps on his back which he lives with.

The first nurse I saw said I have kidney disease , dangerously high blood pressure and a dangerous lump on my back. S