I have just been diagnosed with a 1.5cm Tarlov cyst in my S1-2 region. It has been causing sciatic type pain for the past 3 yrs. I am waiting for an appointment with a neurosurgeon - which will likely take about 6 months (the Canadian healthcare system is very slow and my doctor does not believe that my condition warrants immediate attention).
I decided to educate myself as much as possible while I wait. One thing that is concerning me, the more I read about this condition, is that there are very few stories of positive surgery outcomes or cures. Many of the surgery stories I've read say that the cysts eventually returned - only bigger than before. Has anyone had surgery that totally eradicated their cyst for a significant amount of time (5+ yrs)??
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Tarlov Surgery Outcomes.
- By ColleenInCanada
- Posted June 26, 2009 at 11:18 am · 12 replies
- In Getting a diagnosis
- Shared with the public
Explore topics in this discussion:
Surgery Pain Back pain Tarlov cysts Physical therapy Cortisol Stress
12 replies
- Oldest first
- Newest first
- By UrsaBear
- Posted June 26, 2009 at 1:59 pm
- Report post
Hello Colleen
Do you know if this cyst is benign? I had a cyst in my breast that was benign and it went away on its own. That was 15 years ago. The only cysts that make headlines are the ones that do damage.
I am sorry you have to wait for treatment. Obama is trying to get the US on universal health care just like Canada. What a stupid freakin idea.!!
But good luck to you.
- By ColleenInCanada
- Posted June 26, 2009 at 9:15 pm
- Report post
Hi. Yes, the cyst is benign. Unlike breast cysts, I don't believe Tarlov cysts go away on their own (but it would be nice if they did)!
- By Tammera
- Posted June 27, 2009 at 10:10 pm
- Report post
Hi Colleen in Canada,
The first thing I can say to you is there are not many neurosurgeons that do the surgery.Most of them will say the pain is not the Tarlov Cyst.Ha!!! I am proof that it is .I came down with the most horrible back pain last July.Nothing could stop it.I saw over 6 neurosurgeons and they all said "No ,the pain is not the Tarlov."
The only surgeon that listened to me was a Dr.Feigenbaum in Kansas City,Missouri.I went and had surgery done Oct.16,2008.I went to a physical therapist 2 months before my surgery with a physical therapist specializing in spinal surgery and did physical therapy with him for 3 months after my surgery.The physical therapist was my decision.
It is a very tricky surgery and you really have to be careful in which doctor to choose because they can damage you for life.
Please look on the Tarlov Cyst Foundation for a list of doctors.Dr.Feigenbaum's staff was great it was worth driving 8 hours to get to Missouri.
The recovery from the surgery is very slow.Please do your research before anyone touches you.
I had a 20 %quality of life before surgery and I have 85% quality of life after surgery.
If you have any questions let me know.God Bless You,Tammera
- By dunkeswell
- Posted October 3, 2009 at 6:15 pm
- Report post
Hi Tammera,
I am waiting for approval with workers compensation to have surgery done with Dr. Feigenbaum. So far his intervention has been really good. He has spoken with my own surgeon here in Montana. My surgeon did not feel he could work with surgery...he did a microdiscectomy in Feb last year and he said it was a nightmare come true in there. Tarlovs just got in the way and he was none too keen on going back in.
My problem is that workers comp will probably pay for the hospital and the surgery, but not the flights to Missouri nor the hotel stay whilst all of this is going on.
He told me that I am looking at permanent disability if I don't have the surgery. So here is hoping.
I know the founder of the foundation. And she is extremely supportive. You can also contact her if you have any questions.
- By dancewithlight
- Posted October 23, 2009 at 10:16 pm
- Report post
I am considering surgery with Dr Feigenbaum and am reading mixed outcomes. Currently I am functional but the sacral bone is eroding. Not sure what to do.
- By tarlovian
- Posted October 24, 2009 at 8:22 am
- Report post
The costs are 82000 dollars for the surgery, 100000 dollars for the hospital, and 50000 dollars for Dr Feigenbaum.
Privately, patients do not report so many successes...and as to a complete disability (lost of body functions) unless you break your spine, not a single NS or even neurologist, looking at a MRI can tell about that way. They should not tell that, as it is not going that way. this frightens the patients that jump on surgery. My friend that is 86 years old, has a giant symptomatic cyst for 30 years, no surgery, in pain and has to take medics was explained by her family that are all NS and neurologists for the Army, not to go to surgery to avoid mùore damages...Even if her sacrum bone is as thin a the thinner blade of paper, she goes on walking her way, and doing all things she can...
I also know the President of the foundation RHH, as we met end of 2001 on TT and stayed in touch till now. I made the European Alliance that orks with Eurordis and we organize next year the 2 days and a half congress...New findings are to be developped during this congress as Professor FEDERICO is to present the results of himself (neurologist and geneticist) and his team 3 years researches about Tarlov including genetic....The best NS in the world, neurologists, specialists of the dural tube, ...and many others are to be there..;and explain why, even if for 5% of us, symptoms and pain are existing, some more must be considered, to make for in future, there is less risk for nerve damages due to the procedures and surgeries.
- By loisrose
- Posted October 24, 2009 at 9:49 am
- Report post
I just came back from my 3-week post-op visit (Dr. F in KC) I am walking, standing several hours at a time--little pain. I had 5 cysts. I have trouble sitting, though. I've developed sciatic pain down both by legs when I sit or stand too long (not there b/4 surgery) His nurse says that will eventually go away when the swelling goes down. So far I feel I'm one of the lucky ones, although the only discomfort I had b/4 surgery was feeling of sitting on a bunch of rags, no other pain. I was very nervous as to what I should do. Dr. says the cysts will get bigger and cause more nerve damage; I'd be living on pain meds. I did do a lot of research with several discussion groups about tarlov cysts. Dr. always says "everyone is different" this is true--good luck with your decision; pray on it.
- By destiny07
- Posted October 24, 2009 at 2:11 pm
- Report post
hi everyone. i am getting a packet together to send over to dr. f this weekend myself. for now, i'm going to start via email and then if he wants bigger films sent to him, i will certainly fedex them to him. i will include a cover letter with my pains, symptoms, my meds, my written mri/ctscan reports as well as a good photo or 2 of the films itself and whatever else i can think of that might be helpful. i will also inform him of what i am taking for pain meds (which suddenly are not working any longer) and i will ask him for his opinion as to what he suggests i should take and in what direction he feels i should go in now. i welcome his input.
right now, i will freely admit that i am at my witts end. i've written comments here before and my tarlov pain started in november of 2000. it seems to be snowballing now and just getting worse as time goes by. normally each month with my period, the 4 day before it are horrific as well as the first few days it begins and then it would calm down some to what i would call normal. this particular time it has not calmed down any and it seems to have gotten even much worse. i welcome any advice that you wonderful folks have to offer me.
i wish you all success with your recoveries and your future surgeries. may we all find some peace!
- By tarlovian
- Posted October 25, 2009 at 9:43 am
- Report post
hormones going from the blood fluid to the CSF are acting as toxical for nerves roots, such as corticoïd, red blood cells, cortisol (natural stress hormone secreted by the body when more stress...).
so each time your hormonal balance changes, you have more pain. for some people it is in the middle of the cycle.
sincerely
- By destiny07
- Posted October 25, 2009 at 12:33 pm
- Report post
thank you so much for your response. it seems i've seen so many doctors here in mass and they don't want to even treat me. one, many years back did try those birth control shots so i wouldn't have my period for a few months at a time but even that didn't seem to do as much good as i thought it was going to. thank you again. i welcome any advice that people have! good luck and peace to you all.
- By irma09
- Posted October 26, 2009 at 9:57 am
- Report post
Dear LoisRose,
I wish you the best of luck. That seems to be Dr Franks famous last words: Everyone is different, what that means I don't know. I just wish he would say I don't know what is going to happen to you, but here are some options: A specially trained therapy routine, medications that are appropriate for the pain, or a combination of the right meds. I know I am sounding critical of Dr F. but I don't believe that very many people go home without any problems. He is there to listen, him and his nurse, they listen to you and try to console you, but still say the same thing, it can take time. I pray you keep going up, up up and don't have any setbacks. Be careful, do not do more than you can do without pain. Ask for help. Please keep in touch. I wish you the best of luck. IRMA
- By Maggie2300
- Posted November 6, 2009 at 1:55 am
- Report post
Destiny
Have you tried going to the tarlovfoundation.org web site or to yahoo groups and searching for tarlov and joining some of the sites as there are a lot of people there that have had surgery and are in the same pain as us and are on pain meds that help with this sort of pain and are very friendly and can probably help you.
Let me know if you need more help finding them
Cheers
Maggie
Add to the discussion