Tarlov cyst puncture
This is a big topic for me, because it's something that I personally went through. I will try to make it as short as possible and say only the important things, but I'm afraid that it will still be too long. It's hard to write about it and I won't describe some parts in detail, but I want to share this so other patients will think more about what they choose. Don't tell me, please, that I shouldn't have gone into it or that I was dumb... I know it... And it won't help me now. I hope that this article will help someone else. I know that if I had read something like that at that time (before I underwent it) - and I mean specifically some story from Czech republic with Czech doctors, it would help me a lot.
I underwent Tarlov cyst puncture in December 2018. So it's some time ago.
I won't name the hospital, I'll just say that they supposedly have the best neurosurgeons in our country, so I had a good feeling that I'm ''in the right hands".
Everything started with finding out that I have the cyst. They told me in several hospitals that it's not a problem, that it's a nonsense that it would cause me so much trouble. What I remember is, that they didn't name the cyst. Just ''cyst''. I talked about it with my amazing gastroenterologist, who was trying to solve all these problems with me (intestinal burning, pain, etc.), because they suspected Crohn's disease or Ulcerative colitis before, but then it was ruled out. He told me that he doesn't know anything about it too, but he thinks that it can be all caused by the cyst. He wrote me a requisition for the hospital whith the best neurosurgeons. I was so grateful. Happy and finally full of hope again.
I made an appointment and for my first visit I brought an MRI CD with me. I told them everything - what's troubling me and that it started about six months ago. And they gave me a medical record. Medical record in which it was written that it's a Tarlov cyst and that my symptoms match what is on the MRI. I was so happy - who wouldn't be - that I maybe finally found someone who understands this condition. Who at least a bit understands my pain - or at least isn't saying that it can't cause pain. There were some weird moments when it looked like it won't be ideal - for example when they told me that I'm their first patient with this problem or that if my cyst wasn't that big, they wouldn't believe me - but when it's like this - they fully understand, that it's painful (most of patients I know have the cyst(s) smaller than mine and I completely trust them that it's causing problems... I don't think that size of the cyst matters that much).
I was still totally excited, I believed that they'll cure me and I trusted them they know what they're doing, even though I'm their first patient with the Tarlov cyst. I didn't search for informations much, I was like ''they probably know everything better". That was obviously a huge mistake.
They made me an offer. They'll try to do puncture of the cyst. Unless it has a positive result - they'll do a puncture with a fibrin glue then. And if this will fail too, they will try the surgery - but I have to realise that it's a really difficult surgery and nobody except them in our republic would be willing to try it... and that they'll do it only if everything else fails.
I said yes.
They did the puncture. I spent around three days in the hospital. The procedure itself was incredibly painful. I want to cry when I think about it, because it was pain I never felt before - and I mean the location too, not just the intensity. And since then, since December 2018... I still suffer from that pain. I can remeber myself crying and sreaming during the surgery even though I tried to stand it..., I couldn't stand it. I was lying underneath a CT during the operation. The needle stuck in me wasn't so bad itself, it just "forced" me to twitch my legs/leg muscles and I didn't feel comfortable, because I had to lie on my belly and wasn't allowed to move. But every time they started the sucking process, it felt like HELL. They had to always wait for me to recover for a bit before continuing. It was the first time I felt pain on the outside of my genitals, not only on the inside. And yes, it's a symptom I still have. It has hurt on the outside ever since. As they were taking me back to my room, I overheard something about the doctor stabbing through the thinnest bone by accident. They did a CT check the next day and the cyst wasn't full, so they celebrated it as a success. It felt a bit strange, they are doing something, while only trying if it's going to work, but I expected it to be risk free and won't making anything worse, since no doctor would willingly experiment on patients while risking making their problems worse, right?
I felt better. I suddenly could pee better. I never realised just how bad going to the toilet was for me, how hard was it for me to hold it or on the other hand "let it go". I felt like in heaven, as if I was born again. But of course I couldn't rate anything besides few steps as I went to the toilet and back. I was lying for most of the time.
Then they sent me home... and I'm not sure when did it start, but it happened in a matter of days. Horrible pain, burning sensations, it was all getting worse. Sex? If I had had sexual dysfuction before, now I had found that I can't have sex at all. My genitals hurt on the outside. Plus I started experiencing horrible headaches.
The first thought that occured to me was: "OMG, my nerves have been so damaged, that even though there's no cyst, the nerves are in such a bad condition they still hurt? Is it never going to be better? Why am I worse now?"... I could still pee better, but the rest of the problems was so much worse. But I still kept saying to myself, that it's going to get better. That the body just needs some time to heal. Occasionally some of my friends told me stories how the nerves need a long time to regenerate and it's going to take maybe a year before it gets better.
Month after the puncture I had an MRI check. I first undertook the MRI, then went to the waiting room and then went to the doctor's office. He asked me how am I doing. It was hard for me to respond, but I tried to say I'm not doing well at all. I was afraid what is he going to tell me. And he told me that the cyst has returned. To it's full size. It shocked me at the moment, because it didn't occur to me at all, I thought I was broken. Now after some time, after reading up a lot about my problems I know it was quite expectable. It was just a matter of time. And suddenly this thing happened, he offered me another appointment for puncture with fibrin glue, the doctor told me once again that I have nothing to loose. I remember that vividly. I would add that there's always something to loose and you should never get fooled by these words! In my medical reports he wrote that some of my problems got worse, but at least I can pee better. Well, how can I put this - I would rather have difficult time peeing without my other problems getting so much worse. And my bladder problems got worse over time anyway, so in the end nothing got better and everything just got worse. Something sooner, something later.
I took a look on my MRI CD - the doctor told me that it's unnecessary to try to measure the cyst, that it's the same size as before. I tried to compare and measure it and it seemed bigger to me. That was confirmed to me in January 2020 by a German doctor who actually specialises in Tarlov cyst.
I canceled the fibrin glue puncture last minute. I told them I got sick, they told me to make another appointment when possible. This got me time to get informed and think if it's something I want... Plus we were moving to a new appartment and I didn't want to come from the hospital to a bunch of boxes. I started to search for more information, I found patient groups, wrote with a couple of people, called with some others. I reached the conclusion, that I don't want to. And that I'm angry. Angry they attempted something they shouldn't have, something that had a very high chance of being a failed attempt and it made my problems WORSE. That they lied to me about not having anything to loose. And a lot of other things. Even one Czech doctor from a different hospital told me, that given the size of the cyst he wouldn't recommend any punctures and it was a mistake.
At home I was told I should make another appointment with the doctor. Talk to him about what I had learned, ask him about the operation, tell him I want no more punctures, not even the fibrin one. I tried to be very polite, show that I'm grateful to them for taking over me, even though I was dissapointed inside and was feeling horrible about even allowing the first puncture in the first place. I can't remeber it all that well, and I guess that's positive, but the doctor suddenly stoped being so nice, he was a bit unpleasant and it all ended with him telling me they won't do the operation, nobody's going to do it anywhere. And it's either the fibrin glue puncture or nothing. And that was it. I went home. Well I went to cry at the tram stop first. And then home, I couldn't even see the road through all the tears. I never went to see that doctor again.
I want to tell other patients not to hand themselves over to doctors - even the ones best in some field (spondylosurgery, neurosurgery), who DON'T specialise in Tarlov cyst. Experience, a lot of knowledge and years of practise are all important. Tarlov cyst is not fun. It's nothing easy. Don't take it lightly.
Search for information. Don't let yourself be convinced that a doctor - mainly the one without any experience and you are his first TC pacient - knows more than you and you shouldn't participate too much, because you are a patient without adequate education and skills. I'm not a supporter of people acting like they know more about their treatment than doctors, making up their own conclusions and trusting Facebook more than the studies, but it's different with rare diseases than with something doctors are used to treat every day. Don't feel bad about it and search for verified information, the newest studies, find pacient groups of people with TC, start a conversation with them, ask them about their experiences with the disease, with the doctors, which doctors specialise in Tarlov cyst. It won't cost anything and you won't have to feel sorry about getting treatment under someone you wouldn't if you were more informed. Ask your doctor about their opinions, don't be afraid to honestly talk to them about your fears or doubts - if they get offended, they are not the right doctor for you... Of course every pacient's different, everyone has something different that works for them, but I would never undergo any puncture nor local injections nor anything else involving needles ever again. It really is a sensitive area. And I feel there are too many cases of this not helping (or making the symptoms worse) or helping just for a couple of months.
I don't want to talk someone out of anything, because I know it's not comfortable having to decide about something - just like me and the operation - there are people who will support it and on the other hand people who try to talk you out of it and advice heavily against it... on the other hand you should know that everything has it's risks, so you are able to decide without regretting anything later.
I underwent Tarlov cyst puncture in December 2018. So it's some time ago.
I won't name the hospital, I'll just say that they supposedly have the best neurosurgeons in our country, so I had a good feeling that I'm ''in the right hands".
Everything started with finding out that I have the cyst. They told me in several hospitals that it's not a problem, that it's a nonsense that it would cause me so much trouble. What I remember is, that they didn't name the cyst. Just ''cyst''. I talked about it with my amazing gastroenterologist, who was trying to solve all these problems with me (intestinal burning, pain, etc.), because they suspected Crohn's disease or Ulcerative colitis before, but then it was ruled out. He told me that he doesn't know anything about it too, but he thinks that it can be all caused by the cyst. He wrote me a requisition for the hospital whith the best neurosurgeons. I was so grateful. Happy and finally full of hope again.
I made an appointment and for my first visit I brought an MRI CD with me. I told them everything - what's troubling me and that it started about six months ago. And they gave me a medical record. Medical record in which it was written that it's a Tarlov cyst and that my symptoms match what is on the MRI. I was so happy - who wouldn't be - that I maybe finally found someone who understands this condition. Who at least a bit understands my pain - or at least isn't saying that it can't cause pain. There were some weird moments when it looked like it won't be ideal - for example when they told me that I'm their first patient with this problem or that if my cyst wasn't that big, they wouldn't believe me - but when it's like this - they fully understand, that it's painful (most of patients I know have the cyst(s) smaller than mine and I completely trust them that it's causing problems... I don't think that size of the cyst matters that much).
I was still totally excited, I believed that they'll cure me and I trusted them they know what they're doing, even though I'm their first patient with the Tarlov cyst. I didn't search for informations much, I was like ''they probably know everything better". That was obviously a huge mistake.
They made me an offer. They'll try to do puncture of the cyst. Unless it has a positive result - they'll do a puncture with a fibrin glue then. And if this will fail too, they will try the surgery - but I have to realise that it's a really difficult surgery and nobody except them in our republic would be willing to try it... and that they'll do it only if everything else fails.
I said yes.
They did the puncture. I spent around three days in the hospital. The procedure itself was incredibly painful. I want to cry when I think about it, because it was pain I never felt before - and I mean the location too, not just the intensity. And since then, since December 2018... I still suffer from that pain. I can remeber myself crying and sreaming during the surgery even though I tried to stand it..., I couldn't stand it. I was lying underneath a CT during the operation. The needle stuck in me wasn't so bad itself, it just "forced" me to twitch my legs/leg muscles and I didn't feel comfortable, because I had to lie on my belly and wasn't allowed to move. But every time they started the sucking process, it felt like HELL. They had to always wait for me to recover for a bit before continuing. It was the first time I felt pain on the outside of my genitals, not only on the inside. And yes, it's a symptom I still have. It has hurt on the outside ever since. As they were taking me back to my room, I overheard something about the doctor stabbing through the thinnest bone by accident. They did a CT check the next day and the cyst wasn't full, so they celebrated it as a success. It felt a bit strange, they are doing something, while only trying if it's going to work, but I expected it to be risk free and won't making anything worse, since no doctor would willingly experiment on patients while risking making their problems worse, right?
I felt better. I suddenly could pee better. I never realised just how bad going to the toilet was for me, how hard was it for me to hold it or on the other hand "let it go". I felt like in heaven, as if I was born again. But of course I couldn't rate anything besides few steps as I went to the toilet and back. I was lying for most of the time.
Then they sent me home... and I'm not sure when did it start, but it happened in a matter of days. Horrible pain, burning sensations, it was all getting worse. Sex? If I had had sexual dysfuction before, now I had found that I can't have sex at all. My genitals hurt on the outside. Plus I started experiencing horrible headaches.
The first thought that occured to me was: "OMG, my nerves have been so damaged, that even though there's no cyst, the nerves are in such a bad condition they still hurt? Is it never going to be better? Why am I worse now?"... I could still pee better, but the rest of the problems was so much worse. But I still kept saying to myself, that it's going to get better. That the body just needs some time to heal. Occasionally some of my friends told me stories how the nerves need a long time to regenerate and it's going to take maybe a year before it gets better.
Month after the puncture I had an MRI check. I first undertook the MRI, then went to the waiting room and then went to the doctor's office. He asked me how am I doing. It was hard for me to respond, but I tried to say I'm not doing well at all. I was afraid what is he going to tell me. And he told me that the cyst has returned. To it's full size. It shocked me at the moment, because it didn't occur to me at all, I thought I was broken. Now after some time, after reading up a lot about my problems I know it was quite expectable. It was just a matter of time. And suddenly this thing happened, he offered me another appointment for puncture with fibrin glue, the doctor told me once again that I have nothing to loose. I remember that vividly. I would add that there's always something to loose and you should never get fooled by these words! In my medical reports he wrote that some of my problems got worse, but at least I can pee better. Well, how can I put this - I would rather have difficult time peeing without my other problems getting so much worse. And my bladder problems got worse over time anyway, so in the end nothing got better and everything just got worse. Something sooner, something later.
I took a look on my MRI CD - the doctor told me that it's unnecessary to try to measure the cyst, that it's the same size as before. I tried to compare and measure it and it seemed bigger to me. That was confirmed to me in January 2020 by a German doctor who actually specialises in Tarlov cyst.
I canceled the fibrin glue puncture last minute. I told them I got sick, they told me to make another appointment when possible. This got me time to get informed and think if it's something I want... Plus we were moving to a new appartment and I didn't want to come from the hospital to a bunch of boxes. I started to search for more information, I found patient groups, wrote with a couple of people, called with some others. I reached the conclusion, that I don't want to. And that I'm angry. Angry they attempted something they shouldn't have, something that had a very high chance of being a failed attempt and it made my problems WORSE. That they lied to me about not having anything to loose. And a lot of other things. Even one Czech doctor from a different hospital told me, that given the size of the cyst he wouldn't recommend any punctures and it was a mistake.
At home I was told I should make another appointment with the doctor. Talk to him about what I had learned, ask him about the operation, tell him I want no more punctures, not even the fibrin one. I tried to be very polite, show that I'm grateful to them for taking over me, even though I was dissapointed inside and was feeling horrible about even allowing the first puncture in the first place. I can't remeber it all that well, and I guess that's positive, but the doctor suddenly stoped being so nice, he was a bit unpleasant and it all ended with him telling me they won't do the operation, nobody's going to do it anywhere. And it's either the fibrin glue puncture or nothing. And that was it. I went home. Well I went to cry at the tram stop first. And then home, I couldn't even see the road through all the tears. I never went to see that doctor again.
I want to tell other patients not to hand themselves over to doctors - even the ones best in some field (spondylosurgery, neurosurgery), who DON'T specialise in Tarlov cyst. Experience, a lot of knowledge and years of practise are all important. Tarlov cyst is not fun. It's nothing easy. Don't take it lightly.
Search for information. Don't let yourself be convinced that a doctor - mainly the one without any experience and you are his first TC pacient - knows more than you and you shouldn't participate too much, because you are a patient without adequate education and skills. I'm not a supporter of people acting like they know more about their treatment than doctors, making up their own conclusions and trusting Facebook more than the studies, but it's different with rare diseases than with something doctors are used to treat every day. Don't feel bad about it and search for verified information, the newest studies, find pacient groups of people with TC, start a conversation with them, ask them about their experiences with the disease, with the doctors, which doctors specialise in Tarlov cyst. It won't cost anything and you won't have to feel sorry about getting treatment under someone you wouldn't if you were more informed. Ask your doctor about their opinions, don't be afraid to honestly talk to them about your fears or doubts - if they get offended, they are not the right doctor for you... Of course every pacient's different, everyone has something different that works for them, but I would never undergo any puncture nor local injections nor anything else involving needles ever again. It really is a sensitive area. And I feel there are too many cases of this not helping (or making the symptoms worse) or helping just for a couple of months.
I don't want to talk someone out of anything, because I know it's not comfortable having to decide about something - just like me and the operation - there are people who will support it and on the other hand people who try to talk you out of it and advice heavily against it... on the other hand you should know that everything has it's risks, so you are able to decide without regretting anything later.
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