Tarlov Cyst -- No surgery, one year later

Tarlov Cyst and NO SURGERY -- one year later

Hello Everyone

Last year this time I joined all Tarlov Cyst support groups I could find online and posted some messages to seek help. Now I am no longer suffering (I'd say I am 95% free of pain), and would like to share my experience to encourage anyone out there who is as scared as I was last year. The most important thing is: I did NOT get any surgery and have not been taking any pain medicine, not even over the counter Advil, for over eight months.

I have had many diagnosed back issues: spondylolisthesis (unstable spine), spinal stenosis, herniated disc, etc. for several years, but last year this time I developed different symptoms: burning, excruciating pain in the sacrum area. I could not sleep, could not sit, could not get out of bed without sharp pain. I did a lot of Internet searches and found the Tarlov Cyst symptoms -- everything I felt fit the symptoms people had with TC. (I also read Tarlov Cyst Foundation's description of the disease.) I saw on my MRI reports that I have several large TC on S1-S2, and believed at the time that my TC had gone symptomatic. I read many stories posted on these sites and was very depressed by the bleak outcome. I went to see several doctors experienced with TC in Southern CA, including Dr. Larry Khoo, and seriously considered going to Kansas to visit Dr. Feigenbaum or to Baltimore to visit Dr. Long. After learning what possible adverse effects the surgery could have on me from Dr. Khoo, I decided not to go for any form of surgery, not even spine fusion, which was recommended by several neurosurgeons. And now I feel so lucky that I didn't go for surgery since I am almost back to normal.

Here are a few things I found the most helpful and wish to share my experience with all of you who are still suffering:
1. Taichi -- it teaches me to relax my muscles
2. Viniyoga -- it helps me train my back muscles in a very gentle way
3. stretching my psoaz muscle (I use an ankle weight to stretch, ten minutes on each leg, every night before going to bed)
4, water therapy -- drink ten glasses of water a day (you can find the information online)

It takes time to recover. I think it took me at least six months to feel that I was on the mend. Now I am exercising 20 hours a week, I go hiking every weekend, and am back to teaching and research. I could not have believed this was possible last year during my worst period. I hope to share my experience and encourage you to try these alternatives, not to think of surgery as the only way to deal with your pain -- and to consider that TC could really be what many doctors have been saying: they are not the cause of your problem.

I only use this email address to subscribe to TC groups. I am sorry that I won't be able to check this address much. Good luck to all of you who still believe that TC needs surgery.

Best,
Jade

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18 replies. Join the discussion

Wow, you are so lucky. I think your story is pretty unusual. I do believe it, I just am a little jealous.
I was doing every one of those things for years and then bam, I started having sexual pain, that turned into severe pudendal pain and my days of yoga were gone. My yoga studio has held my membership for 18 months now. The month Iast I went I could just do savasana I would lay there imagining I was doing the poses, after 15 years that was all I could do!
Tai Chi I have done for about ten years. I still do a medical version laying in bed. Stretching,, in my yoga studio I was nick named "gumby" , the stretchest girl in the class. water,,, we I just drink about 6-7 glasses a day. so that must be it. Besides yoga and tai chi I was exercising on a treadmill and swimming. Not 20 hours a day, I had a life.

I was the picture of health with a perfect spine and a great life. I had also been meditating for 1-2 hours a day for many many years. This I have continued through out my Tarlov Cyst Disease journey. I still have a friend pick me up twice weekly for mindfulness meditation group. On Sunday I go to a tibetan bowl ringing meditation. have for years. So about 10-12 hrs a week.
Which probably has saved my life. I considered suicide for the last year of my symptomatic cysts. I only held on for my pets and my husband. I had a very promising career, In spring I will be in a movie ( documentary ) made about women like me in my performing career field. It was filmed in New York, 6 months before I became symptomatic. I have not performed or made any money since April. It is not possible to perform, maybe once I heal from surgery. Who nows.

I guess the point is, your post felt very insulting to me. But I guess from your post you won't be checking this site very often.
I am happy for you that you are all back to normal. If I had just had sacral pain I wouldn't have had the surgery either, despite doing all the things you talked about for over 15 years everyday, I was blessed with every TC symptoms. I got to feel like I was being raped every day all day. plus a log shoved in my rectum, daily rectal spasms that would wake me up screaming every night. plus urine retention and bladder pain. I couldn't sit down because my genitals were on fire , like shingle pain but in the privates.
I couldn't have the surgery fast enough. Read the lastest , National Vulvodynia Association publication. I guess you wouldn't get that magazine. Because you didn't get neuropathic vulvodynia as one of your Tarlov Cysts gifts! It is all about Tarlov Cysts, at one point they are talking about me.

I wonder how long you would have made it, with severe TC pain? I was on all the narcotics legally allowed and it barely touched the pain.
I don't know what your intention was in making this post. No one is rushing to have surgery! The people that have surgery are the one's like me who had NO choice. The other choice was a slow agonizing death. or suicide. Thank god the TC surgery is available and we have one of the most gifted surgeons as our chief supporters. I happily would have accepted any on the side effects from surgery, Incontinence w/o pain fine...I 'd wear Depends. Archnoiditis , is the worst outcome I've heard not sure how many cases Dr F has had. Seems to be more of an issue with other surgeons or with people that had other spine issues or fibrin glue complicating the surgery, but if that happened, well at least the pain wouldn't be in my genitals and rectum/bladder. I don't know if anyone ever became paralized but I would have happily traded my pre surgery life for that. Death, well i prayed to god to take me each night.

I am glad you were magically able to exercise your way to becoming non symptomatic, very very rare and lucky. My uneducated guess is your other back issues were acting up and once you got your body together , they stopped being an issue.
Sorry for talking at you, you probably won't read this as you indicated. So I really wonder what your point in posting was. , other than to insult the intelligence of the poor sumks that had surgery, because obviously if we had done the things you talk about...oh yeah....I was doing that for over half my life? So I guess I was doing the poses wrong?

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Well at least reading this was good for a chuckle, in a warped way of course. You go TCblues, love it. Glad I've not yet had the surgery, will be out first thing tomorrow to get a dvd on all these exercises and meditation ideas....woops can't do that, too sore to drive, maybe another day. I wonder how many other conditions can be cured this way, the docs will all be out of business.

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UGH. thats all I can say right now.
what blows my mind is how so many people have "symtpomatic" cysts and there are what? 3 drs inthe us who remotely understand what a TC is. We send people to the moon for god's sake why cant the US get their Medical act together and help us? To listent to the NS's in Europe like Dr Warnke etc?

i have been avoiding these sites for a few months because it is so darned frustrating to me and causes me more pain.

i had a career too and have only been able to work 2 x this past 2 and a half years and only because my husband is the director.

is it the egos of doctors not wanting to collaborate? not wanting (really) to think outside of their box to learn the latest techniques being done in Europe? One Dr very recently told me he doesnt trust the "thecalascope" theories because there is nothign "published" on it-- he must have said that 4 times .
OY VAy . We get one turn in this life.

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So there is something wrong with this picture,

JADE 3 weeks ago you joined here and you have been a silent member on the forum I go to most, and have not asked for any advice there at all. and two days ago you posted ,


"I have suffered from severe pain in the sacral/tailbone area for six months, and the pain intensified this past month. I could not sit, have sharp radiating pain upon standing, and the pain is worse during sleep. I could not bend forward to put socks on, and sometimes could not put my feet on the ground because of the pain. When I read on my MRI report that I have a large (2.8 x 1 x 2 cm) Tarlov cyst at S2, I looked up online and found all those people suffering from TC with similar symptoms. Their stories were discouraging and depressing at times. I was desperate to fine someone who knows how to treat TC.

Based on some recommendations on this site, I went to see Dr. Khoo in LA last week and he has treated 15 patients with TC. But he said that my TC has not changed in size in the past two years, so the sudden acute pain might not be caused by TC. He thinks that only a CT myelogram can confirm whether the cyst is communicating with the spine. I told him that some other doctors warned against having this test, but he said that some surgery might have been performed on benign cysts without confirming that the cyst is the real root of pain. He showed me pictures of the surgery that he performed, and they looked scary.

One piece of information useful to me during the consultation is that Dr. Khoo said my "sharp pain upon standing" is not typical of TC symptoms. After I googled 'sharp pain upon standing', the first thing that showed up was about coccyx pain (coccydynia). The symptoms match exactly what I feel right now. There are far more people with coccydynia, and many more treatment options. (Of course coccydynia could be related to TC, but it might not be in all cases.) If you suspect that you have symptomatic TC, please take the time to look up the information provided at this site: http://www.coccyx.org/whatisit/symptoms.htm
I also find the personal experiences section very helpful.

The surgery on TC is nasty, and could lead to permanent damage. So, unless you can absolutely rule out all other possible causes (herniated disc, spinal stenosis, etc.), please don't go to this final route. In my case, my spinal stenosis is so severe that all doctors say that I should take care of it first. I am going to leave my TC alone for now. "

Jade
.

IF this post is real , and the one you posted above is real....(my math s rusty but in 2 days you went from severe pain to 95% better after exercising 20 hours a week and drinking lots of water.). and not something made up to post, If you are you. I am hoping so, and that this is not a joke, Well, I am glad you got 95% better in the last 2 days and that you have found that TCs are not the cause of your problem, In your case it is good that you are not proceeding with having the TC surgery with Dr Knoo. You might have mention all of that when you posts this treads' message! It kind of reads like you had symptomatic cysts and then exercised them away.

Which is not true. Probably similar to the European friends that got better without treatment. Yes, it is very important to rule out all other causes, and if you have other back issues, well especially then! I think , Claudine would agree that the myelogram can cause so many problems that more TC specialist, ( Well there are only 2 other's in the US Dr Feigenbaum and Dr Long. Dr Long is only diagnosing as, he has stopped doing surgery, most likely because of his age, *80 ish , but I haven't asked him that questions and no one else should post his reason;s without asking him)
As Dr Knoo explained to you, you probably don t have symptomatic cysts, very luckily for you. Again I am a bit jealous. You might have included that information in your post , as it sheds and entirely different light on your post. Or maybe I am just crazy, You should not have posted a post that reads "Tarlov Cyst -- No surgery, one year later" you dont have symptomatic cysts at this time, let's hope you doing take up figure skating... as a fall could change all that.

but your initial post reads like you had exercised your symptomatic cysts away. Which didn't happen. Maybe if you didn't exercise for 20 hours a week, you would bot have had the extra pain 3-6 weeks ago, that caused you to go see Dr Knoo, in the first place. Just a thought and something to keep in mind, if you want to stay out of pain. Your post was useful to me in stating the
importance of ruling out all other causes. I like what Dr F had me do in conjunct w/Dr Long. a series of nerve blocks ( not in the spine) MRI, MRN ect

Jade I do hope that you can enjoy your newly pain free body and continue to enjoy life, your watchful waiting has paid off, and as you are almost back to normal, I guess I can see that you won't be checking this forum again. Much like you didn't participate in the forums you've joined, I didn't go back really far in TT. only about 4 months worth, and you haven't posted on the TC forums I am active on. I am glad to know the number of TC surgeries that Dr Knoo has done, that is useful information to me , when I see a new person from the west coast , i can give more accurate information.

You might include you story, reworded of course , and let everyone know that you are okay and don't have symptomatic TCs. That any one else not sure of what's going on could wait if they can and see if things get better. I think it is safe to say , for most on Dr F's waiting list they can rest assured, It takes months to get your consultation , ( for those who care, the pudendal specialist has a one year waiting list) and Dr F makes everyone go through a lot of tests to make sure the TCs are the root cause.

Really, I am glad for you, I just wish that if you ever read this, that you correct the misleading information in this thread.
Best of luck for continued good health! JADE

Welcome back , Claudine, I am glad you are feeling better and have decided to continue to be an active member of this forum. The vast majority of TCers don't come here as it is a futile effort. Most of the people don't want or act on the advice that is given.. I feels like they are just looking for a place to complain. I can't tell you how many times I have listed the 3 US TC forums and no new members pop up. But, in sincerity I am glad to have you back, otherwise it's just me here. and I am tired of posting the same things to the same questions. I do not know how to do the respond to poster thing that you have talked before about. Perhaps you could explain the process when you have a moment. Might be of benefit to us all. Mostly me! Question?? I am assuming you can not sit at the computer and post the long answers you do, as you are active on so many forums, Do you have everything,..like commonly asked questions , saved to your computer and you just repost and change a few things? To save your hands from carpal tunnel. my arms hurt at times and I only post on two places. I would post on TT but I get censored , my posts rarely show up, even though I am mindful to say things that are PC. I only post there when I see a new person struggling and every one is ignoring them, since those are your friends you might ask them to be more fair and post what everyone posts, not just their friends. My posts there are to the point, just simple things , without my personal opinions, so please pass along that they need to be more fair, or else have a form to fill out and if the person doesn't share the moderators views then they shouldn't have open memberships , and then "closed" postings. Otherwise I will have to stop posting their address and sending people there, I don't want a new person to have that experience there too.

Bear, I am thinking you are a guy, otherwise I couldn't see the humor in my post. and I actually have a pretty warped and active sense of humor myself. More on the Comedy central side of things, I can hang w/anyone ( well Claudine and I might need a few drinks first..LOL, but then i'm sure it would be fine and we might walk away as friends, actually I have many european friends, mostly german, but a couple of Italians , one portuguese and my Mother was born in Sweden) I have travelled to Europe to perform many times, I love it over there!! ) sorry tangent LOL but I do love to laugh. So I am going to give you the benefit of the doubt. on this one, and presume you were laughing with me and not at me. Please correct me if I am wrong. I do hope that you find a treatment that works for you, so you can have the happy life and productive life that we all deserve. In my experience most of us had pretty successful lives before this horrible disease struck us.

I have a few male ( 5 to be exact that have the male equivalent to my TC symptoms) as you can imagine they are pretty desperate to get treatment. 3 are on the waiting list for Dr F, one had the surgery 9 months ago, he has been back at work since month 2 and is doing very well, the other sadly is just drinking himself to death. He a good friends' brother, his wife is eagerly watching my recovery and she has sent his MRI to be in reevaluated with Dr F. Before he was opened up, by the head NS at a university hospital in MD, and the surgeon took one look at him and closed him up, it was over his head! He told him he would be in a wheelchair soon and that he was sorry, nothing could be done. I hope he lives long enough to get to surgery, or thay some other treatment is of help to him. Of interest, one of my male TC friends was evaluated by the best pudendal nerve entrapment surgeon , who lives in AZ, and that Dr. told him the same as me, get the cysts taking care of first. The changes that the cysts are causing the problem are much much greater than the pudendal nerve being entrapped. The only exception to that I was told was if I/he had been a long distance cyclist or a weightlifter, then he would reconsider and offer the PNE surgery, Another one, with a long recovery, very few surgeons and not the best results. For most of the early 2000's everyone with PNE was traveling to France, again, most are not better.
As a result of my problems all my male cycling enthusiasts have gone to special bike seats to make sure they never experience the pain that I did.

Again, Jade please be mindful when posting, that you should give the entire picture otherwise, you words could be misunderstood.
Respectfully TCB

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Is anyone else having the problem that you are working at a post and then this forum decides to ask for you password when, you press the post button. It's getting very old. I am tired of constructing a thoughtful reply and then lossing it because inspire has logged me out.
I don't like to post anything until I have time to think about it. Maybe one of the other reasons no one ever sticks around here.

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TCblues definitely laughing with ya, I agree 100% with your reply to Jade but I couldn't have been so polite about it. We have to put up with the run around from one medico to another because they like to make you feel the symptoms aren't real (because they do not know about TC's) so when we find people that are aware of what we are going through we have to place some trust in them, it gets very tiresome feeling you are on your own in this or perhaps you have gone nuts, the relief in thinking you may finally get some help is indescribable. So unless you have been there you can have no idea so why put the post up if you have never had the problem you are giving cures for? I too had a very happy life before this and loved to move pain free and if it could be exercised away would have done so morning, noon and night. I unfortunately live in the real world.
TCblues....thanks for the other laugh.... I am not a guy. I do have one bit of advice that is not medical though, laughing is better for pain than crying and it is free! Sooo if I make a silly comment please take it as intended as I have a warped sense of humor and too much seriousness gets us nowhere. xxx

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That is inspiring, I am going to give that a try although I am afraid about exercising that is for sure, but it cannot hurt, I am already hurting. Thanks

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Claudine,
you may have already shared the links with my, but could you send me links of official publications so that I can give this to the 2 drs who need more info. i would appreciate it so much.

i am nervous about getting the Afgi done ;BUT if the CSF flows too quickly upon observation they wouldnt do the FGI anyway.


nervous in princeton, XO to you claudine

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Posted below by Jade 2nd Feb,
Suddenly on the 4th Feb, 2 days later the 4th Feb Tarlov cysts No Surgery 1 year later
the subject of this thread, 2 days to go from Severe sacral Pain to posting 2 days later You are Cured ,
A load of balony

I have suffered from severe pain in the sacral/tailbone area for six months, and the pain intensified this past month. I could not sit, have sharp radiating pain upon standing, and the pain is worse during sleep. I could not bend forward to put socks on, and sometimes could not put my feet on the ground because of the pain. When I read on my MRI report that I have a large (2.8 x 1 x 2 cm) Tarlov cyst at S2, I looked up online and found all those people suffering from TC with similar symptoms. Their stories were discouraging and depressing at times. I was desperate to fine someone who knows how to treat TC.

Based on some recommendations on this site, I went to see Dr. Khoo in LA last week and he has treated 15 patients with TC.
.



Jade

To Conclude Jade was Miraculously Cured,with This Thread Tarlov Cysts NO Surgery in 2 Days,

Sorry I cant take this anymore, so many Lies and Deceit, one Person acting as 3 or 4 different Aliases, This Person has to be Sick and needs medical help
For People who have just been diagnosed with Any Rare Disease who come to this Forum for advice and because it through N.O.R..D national organisation of Rare Diseases,will think that all messages posted here are Legit and the truth

NO Sorry Jade you cant be Cured in 2 Days with Exercise, you saw Dr Khoo in this time frame too, 2 Days then you post this thread saying 1 year No Surgery you exercise 20 hours a week,,I guess Yes thats when you use your hands to type .not for 20 hours but 24 hours a day every day every week,
Have you No LIfe Obviously not
WE KNOW WHO YOU ARE most People here, and on the Tarlov Forums know your True Identity , Thats why most Forums boot you out when you have joined with a false Name once they find your true Identity you are History.
Why do you keep making up new Names even genders,
Continue to pull strings like this You are recognised for the Fraud that you are, no one is ever going to believe a word you say,
Even in the threads that you actually share your true identity no one will trust what you write even if its the Truth,

Jade this Story Tarlov Cysts 1 year No Surgery was posted on The European Forum, by Claudine, why ???? How is it Claudine who posted this Story on the European Forum, when you could of posted it yourself, confusing that, yet you say in the Story that Claudine posted that the European Group is the only one you subscribe to TC groups.
Yet you write here too,
Please Explain for the instant Cure in 2 days By your own admission as you Started both threads within 2 days, anyone can go back and check ,

The True Exppanation is You are one and the same ,no matter what Alias you use we Know who you are So Please STOP you are making a fool of yourself,

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well I am leaving here,
not because of anything but frustration and wasted hours with this site, After 3 hours today, 3 posts have been lost, my password won't work again and the list goes on. I loss at least one post a day here , because of the stupid way it is set up here, You can't respond to the post and then go to another page and reread the on you are posting to, if you go from your email.. and only some ( mostly the negative responses show up, then you lose the post , because you haven't "Signed in" the link from your email, gets you in the door and you think you are posting, until you try and post and then, nope sorry you have to sign in. Oh and by the way your post is lost!!
I have way to much to do then waste my day here.

To sum up, if you want to know about the TC surgery, read my posts.
basically I had no other back issues, am fairly young and was very healthy pre TCD.
I had no other spinal interventions, like myelogram, fibrin glue, epidurals ect
My TCD symptoms were inhumane and severe, in the words of Claudine via a private email she sent me , via another forum,
" I was the worst TCD patient she had seen in thousands"
I had the surgery in KC w/ Dr F as that was where Dr Long /Dr Kathuria suggested I go. 4 large TCs S2-S4, L sacrum had holes in it, DrF strengthened the area with a resorbable plate. , despite what you might read, he does a different and totally unique surgery.

I am currently almost 5 months post op and doing very well. Most of my Pre TC surgery pains were gone when I woke from the operation, one nerve pain area in my R butt check remains. although is changes daily and I expect it to go away as the nerve regenerate after 1 1/2 years of severe compression after I fell on my ass ( not skating, on the ice)
I still take methadone ( down to 1/4 pre surgery, you have to do a long taper off this drug, and lyrica) Ice on a bad day.

Anyone wanting to get information, start at the tarlov Cyst foundation
don't be a loser!! join the yahoo TC forums for US patients and other welcomed friends
This is my humble opinion, so check them out yourselves , and then stay where you feel most comfortable

_ tarlovcystdiseasesurvival
( all one word) this is the freest and most open forum, no one reads and approves your
posts, under 100 so small and intimate. great support regardless of whether you have surgery, w/whom ect
- straight_talk_tarlov_cyst
( great girls/men run by a conservative christian gal, know to speak her mind not so kindly)

_ tarlov talk
( the oldest and largest group, all posts are read and approved or not, regardless of what you have written)
good place to be a silent member, you will and can search fairly easily on many topics, they have a good files sections so it is worth joining for that alone.

In my humble opinion, the dr in germany is making great awesome strides for ARC ( archnoiditis) , but hasn't done many TC "virgin spine" procedures for anyone except Camilleberg to be jumping up and down yet. ( I say this because a year ago when I got dxed Claudine was expertly advising that everyone have the FGI ( it doesn;t work) and really hoses you if you want to then proceed to surgery. Up until June, i had never heard his name, I was a member of Claudine's forum and she was not talking to him. I ( I can not speak for anyone else) have problems w/Claudine ( Camilleberg, formerly tarlovian on this forum) has made it her mission to scare everyone into not having the surgery, that is just my opinion, she privately tried w me, she has convinced 2 other newbies, that I was close to, to not do the surgery, both are miserable and getting worse) What the issues with the other 2 US forums, I have had conversations with one owner, and will not post without her permission, the other owner is too emotional and irratict ( mostly out of undertreated pain) to get a cohesive answer. The foundation, i don't know, nor care to know. Those are the politics under the so called camps of TC thoughts. Claudine and her followers and the rest of us.

Everyone is just trying to get better and figure out how to help themselves, it is a shame that the unspoken Politics play a role. This has gone on for years before I got TCD , so it is not something I am making up. My experience is it is difficult to deal with her, most of it could probably be chalked up to pain, We all do and say stuff that we wouldn't have, myself included, had pain not be unrelenting.

I respect claudine and what she has done for her cause ARC. It is inspiring and remarkable, i believe her heart is in the right place, I strongly disagree with the way she speaks in regards to TC . I will go visit her the next time I go to France, I think it would be fun and a very special and fantastic experience. I look forward to it.

Just a thought Claudine, your personal posts actually speak better for your cause then all the data. Stick with that and you will move mountains!! I wish you , a miracle, because if anyone deserves one it is you.

Sorry for bailing after I nailed this threads ' NON SYMPTOMATIC TARLOV CYSTS- ONE YEAR LATER" author , our newest savior Jade. and the tc expert one hit wonder jayne for .

I hope you all find a quick and safe trip through your tarlov cyst disease, please for god's sake , join the forums it is really dumb to stay here after the first few visits. I can't see how someone would even come here first , in the day and age of internets?

All of this is just my opinion, the truth as I see it .



So I guess everyone here can get there education from Cluadine, which I have peace with, and is not why I am leaving! I have realized the the ones who to their own personal research will have the best shot at finding what is best for them! I am grateful I did, and am thrilled to have my old life coming back.
TCB

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TCB
You were the only one keeping her controlled here, You shamed her many a time from what I have read, You could be right her heart is in the right place, But dont let anyone question or disagree with her, Then you have Horrible nasty private e mails many People have had that happen and its still happening to the day, You are right she has an agenda and it her way or the highway, That is not right ,
The reason I wrote my 1st message here today is because yet again Jade so called superwoman who was healed in 2 days is the one and only tarlovian cammilberg who ever else you mentioned and Claudine all rolled into one, Split personality that has degress a medical backround,Cousins Uncles who also dont exist i think the best way to describe her is to say the Many split personalities of Claudine
How could a person really believe a word she says , Reminds me of that story The Boy who cried Wolf,

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Well this forums, bites yet again, after a PC post I carefully constructed i was timed out and it was lost! A waste of two hours, there is no button to keep me logged in, when responding direct from my email. So this is fast and might seem less than kind, but i have a lot of things on my plate today.

One claudine, so refreshing to hear about you! that is my understanding about the purpose of this forum.
If people want data, we should just give links, and not copy entire articles, lectures ect. There are places that education and information is there purpose. We should refer folks there. But really is was nice to hear about you.

Dumb question,

have you explored the non morphine based narcotics as in the fully synthetics? like pethidine or Demerol, methadone, fentanyl, propoxyphene, pentazocine, buprenorphine, ( subutex) butorphanol. Often people that have probelms with the morphines can take these. Or that was how it was explained by my pain doctor. On the higher doses of morphine I get the heart racing and chest pain, my Dr sister in law says it's a common side effect there is a name for it but it escapes me at the moment.

Two,

the 2 US patients that had surgery w/Dr warnke. 1) first one had ARC, for a failed back surgery or spinal intervention?
2) the one from tuesday, had TCD and only TCD, has she had any other TC interventions? and really important.

You must find out what it costs in USD, if you are going to promote it so strongly on a US Forum Site,

most TCDers can no longer work and no health plan here would pay for out of country, when there is treatment for TCs at least here. I do not know enough about ARC to comment on US treatments. I would hope someone at a teaching hospital is doing some research as ARC is much more common than TCD. It does scare me that much more ARC will be happening here as the current trend in pain management is driven by money. Anesthesiologists are opening pain clinics are over the place here, and practicing "pain management"??? by giving spinal injections, epidurals ect and charging 1200/per shot.

In my limited experience ( 2 clinics, plus my sister's internship at a very well known hospital pain clinic) is they have little to no interest in actually giving the medications that are helpful. I see the drug reps there at ever visit I made, ditto my sister at her hospital. There is no money for anyone, if meds cost ( 12.50 per month- my current costs) versus the $1400 per month, the meds they prescribed me for months pre dx, and after that didn't help at all. Plus they were ALL OFF LABEL for pain??? OFF label means, well expensive and most likely useless for your condition. Thank god, i knew enough to find an actual pain management doctor, after 5 months of hell through them.
Sorry to rant, I lost this post earlier. The point was How Much is the Warnke procedure? and please have some of your european TCD friends that have had it join the US forums, as language isn't an issue. I think the TCD community here would be more excited if we heard it from the patients not from you.
also a 3 & 4 th then I will try not to bother you again,

3) Why is it that you and Sharon haven't had it done, you both have ARC?
Ill ask Sharon as well on another forum, and

4) A lady named Tiz who is a friend of yours is raving about Palmitoylethanolamine (Normast ®) as a great for TCD pain,
Is that something you have tried? I haven't heard you speak of it?

Thanks ,
Hope you get some good sleep this weekend.

TCB

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I am new to this online site. I have suffered for a long time with my tarlov cysts. I have been speaking to Dr F and his office person/clinicial person Laura. I have had 2 mri's. Dr F told me by phone - since just traveling 20 minutes in a car is too much for me - that my larger cyst was "giant." I have had 2 spinal surgeries within 11 months of each other. So I am terrified of another. I have in the past emailed and spoken to Reta Honey Hyers. She told me of Dr Frank. And now I came to this site, looking for people like me who live with this horrible disease. I can't drive but once a week because just using normal pressure on the gas petal causes sciatica for days on end. I am not complaining just telling my truth. My life.

I can't understand why anyone would lie about being cured. False hope to people who suffer. So low.

Just sitting in a chair emailing is torture. Sitting standing anything too long as real suffers know is pain pain pain. I was hoping to find hope, info, encouragement, I guess I am foolish wasting my time looking for ohers who truly understand because they live it - like me.

hair-on-fire pain every day
Darlene

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Darlene,

Claudine has good advice, get on one or all of the US tarlov forums there are 3 or 4. Some are more biased towards surgery or not, I have found my place at one, but I check them all.
Personally I have issue with Tarlov Talk because someone else reads and decides if my post is going to "make it".
But it is the largest and oldest group. On those forums you will get more than 2 pictures. Mine and Claudines', we do disagree but are representative of two different thoughts on the issue. I was more than willing to have the surgery fail, I had no choice, the other was a very terrible existence. Obviously, I am thrilled that things are looking good for my recovery. However, I would speak for surgery regardless. While you are here, research all the past posts for the last three years and please join the forums you would be welcome at any of them. and find your home where you feel best after a few months on all of them.

Thank you Claudine, for the approx cost of the German procedure, Is it covered in any country yet?

It is sad you can not try the other pain meds because of one reason or another, and that you aren't a candiate.
Could you get some of his patients to post on the US forums? and that you for explaining why you had two identity's here, and why you left the old one. I was very serious in saying that when you stick to talking about you, that your words are powerful.
Because of all the controversy , a lot of it stems from when you speak about others. It is just hearsay, and in your condition it might be better for you to talk about you for a while. I can imagine that your heart tells you to save others from your state, but if you just speak Your truth it really does accomplish what you are trying to do.

Personally I enjoy reading about you as a person, your struggles and your determination, we want just you.
I hope that you are having a better day.

Darlene , if it helps Jade got the royal treatment after that stupid post at Tarlov talk,
and I hope that I get to welcome you at one of the forums.
People do care, and we will support you there

TCB

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ok - help me please everyone. I have such limited time that I can sit at the computer. Just saying hi to friends and family is great for me to still feel connected to the world and all. But that being said I need you all to tell me which site is best. I need honest info and opinions and suggestions. My husband has ms and I try to do all cleaning cooking laundry I can. And I bit of sitting at the computer. Honestly I am in pain now just sitting kills me. Oh and I only used a "screen name" because that is what was suggested. Maybe this was not a good idea but I thought feedback of other people like me w/tarlov would help. The only other person I have talked with was Reta @ the tarlovfoundation who is a tarlov person too.

Darlene

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hi - thanks for the replies. I will check into the sites. I thank you for the info. Today is a very painful day and I promised my husband I would make supper and standing is not going to be easy today. So I am going to stay in bed till then. I don't have a laptop so I will email again when I feel better.

thanks
Darlene

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Yea, I'm not sure it's truthful, maybe you can be in a remission but keep up the hiking, wts, etc,,,and you may get the horrid pain back, i have the same cysts, spondylolithesis, etc you have and surgery was my only option, water didn't help. I was dragging my leg and couldn't function, no sports, sex, fun, dinner, movies etc...maybe you are a miracle child, maybe not. I am troubled to find this website so anti-surgery for those of us who need it ASAP and can't go to other places to get help. I'm 1yr post op 75% better. Do all pts need surgery? No, my mom is 69 and has them so I give her precautions about prevention so her symptoms never get as bad as mine, I would not wish this on anyone but am grateful for surgery. So go skiing like I did, cardio classes, cycling, hike and keep it up and you may regret the post, I'm going to a different website, good luck all!!!!!!!!!!!!!!!!!!!!!!!!melissa

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I could also say to you that maybe it was not your TC's that were causing the pain, but I personally know I have had mine probably since birth and had strange problems which doctors could never figure out, but like you they went away, then one day I lifted something very heavy and it set off the TC's which I didn't know I had at the time and for the past 18 years I have been in unbearable pain. So you can go do all the things you mention, but just remember it doesn't take that much to set the TC's off and when you have done so you will see life in a different light and realise just how condending your comments really are to those of us who really do have the pain from the TC's and no matter how much we excercise and eat right the pain is still there and our life if wrecked. I would caution you to be careful since you know they are there as you might be walking in our shoes

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