Tarlov Cysts - Amy's Story
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- Опубліковано 21 сер 2024
- After finishing a triathlon, Amy began experiencing pain. She was diagnosed with Tarlov cysts, which are fluid-filled sacs that affect nerve roots in the spine. Dr. Welch performed surgery and now Amy is back to feeling like her old self.
Great that Amy is recovered and free of the symptoms of her cyst. Yes it would be really good to know which surgical approach was used?
Had TC surgery by Fraser Henderson in Chevy Chase MD five years ago. I believe he uses a fenestration technique. Dr. Henderson is AMAZING and detethered my spinal cord at the same time. I’m so grateful to him. It was life-changing.
Hey i have exactly the same problem the TC and tethered cord. I want to know your pre and post op situation?
This is the surgery I’ll be doing this year
I jak po operacji
Now I have it... Just discovered.... When I asked after having issues with my right leg and thought it was a herniated discs from a car accident that caused me 3 herniated discs in my neck.... The nurse never told my mother what she saw after I was born... Now we know.... Glad you are feeling better, Amy!
Thank you for posting this video. I wish our Cleveland, Ohio area doctors took this approach to helping those of us with Tarlov Cysts. For many of us in this geographical area and much of the country, and in fact the world; it is just too far to go to get proper treatment that would effectly treat or cure this rare disease.
It has been shown that just doing the nerve blocks or the aspirations of the sacs on the Tarlov Cysts does not work, and in fact for all of the reports I have read from those who have had the needles in the spine, including my own experience, any relief is temporary and in fact can cause more pain.
The fibrin glue procedure that has been used by some doctors has a well known failure rate. It is a difficult surgery for a patient for sure, but Tarlov cysts in the sacrum can and do erode it and cause many other pain and progressively degenerative issues making life increasingly debiliating for the sufferer of this unfortunately misunderstood rare disease that was first discovered in 1938.
+Linda Ellis Thank you for your comment, Linda.
+Penn Medicine - You are most welcome. Your video is being shared among many of us who suffer from this diagnosis; including in the several Facebook Groups created for those who have Tarlov Cyst Disease.
It's too bad that most people can't get this help. I am now a cripple in constant agony, with no help.
@@Creationhorse🙏🙏🙏
I wish she would have told where her cyst was located, I felt like she held back alot of imformation, I felt
like that was more of a comercial than information about tarlov cyst.
I agree. This only raised more questions and unfortunately they don’t answer.
How do you get diagnosed? What kind of doctor? I’ve seen what seems like every kind of doctor and no one has answers for my chronic life-altering pain. I’ve often wondered if I have tarlov cysts. Doctors dismiss my pain. I don’t even know where to turn anymore.
@@jazzmoos5382 you'll get diagnosed by a neurologist, the surgery should be performed by a neurosurgeon
Very BS shallow and I wouldn't touch the DR. who put this out.
Wow! Wonderful! So glad you got your life back honey!
i also suffer from tarlov cysts, I have 4-6 cysts. They began causing pain when i was in 4th grade. I am now 18 years old still trying to figure out how I can fix my situation. The extreme pain has stopped me from doing everyday things and i just want my life back, i’m stressed out trying to find a job that will work for me, i need to start my life but it’s so hard when being in excruciating pain everyday.
Do you consider surgery?
🙏🙏🙏
I am from India and I am facing same problem from last 5 years nerve root compression lumber spine doctor called it tarlov cyst . I want to know how much expense for the surgery.
Hw is ur cycst size and hw r u im also in svere pain
Thanks, I do know about him, however the only insurance I have is medicaid and I know it's easy enough to find out if he takes, I have no way to get there. I live on a ssi check which leaves me nothing after rent and bills. Would you happen to know if he takes medicaid ?
I live in Illinois, I have Tarlov Cyst in S1 and S2..low back .I discovered by Mri...I have severe pain in my butt around my rectum....and pain in Vagina..I went to Orthopedic surgery to help me to do Surgery or drainage...He said to me that it's risky for me to do drainage or surgery...and the pain is not came from the Cysts , may be somewhere else and suggest for me to go to Medical physical rehabilitation for SI JOINTS may be he will do for me injection and some therapy!!!
My symptoms: I can not sit comfortably, my urine changed the color. to yellow..not normal urine...pain like pressure and sharp...I'm 46 full time mom.....Help me with any advice please or where to go ??😭🙏🙏😰
I’m sorry Ori Ra 😢 Have you found help yet? Any answers?
Thank you for sharing that your cyst was found through MRI. I wondered how to get diagnosed and what kind of doctor to see.
I’ve suffered for several years. Saw “The Tailbone Doctor” in New Jersey 5 years ago hoping he could help, but for me nothing worked. I don’t know if I have tarlov cysts, but I do know I have a lot more than the diagnosed tailbone / coccyx issues.
I’d like to know what kind of doctor to see.. I’ve pretty much given up any hope for help.
I am so sorry to hear that😢 . I also has the same issue i got MRI with tarlov cyst in S2 . I don't know what to do... how are you doing now ??
Would love to know how many months after all pain was finished? or if it went completely.. also what exercise you did and when did you start
How can they tell the difference between a Tarlov cyst and a synovial cyst? I just learned i have one, they say its a synovial cyst, im skeptical, i had an unusual difficult job that was very physical. M Im
but doesn't the cyst just re-appears after a few months or years after this kind of surgery?
Hi does spine anesthesia could cause Tarlov Cyst to grow or worsen? Should I avoid Spine Anesthesia?
Great story my daughter is having the same problem need to talk to some one
how old is your daughter??
Would love to hear how you are feeling Amy?
❤
I have 4 tarlov cysts!
Most doctors know nothing about them, abd radiologist twll tge doctors they ate nothing too which dies not help!
I know someone that has a tarlov cyst in a very rear spot it is in her L-2,L-3 spine she can not get any help for her s at all in reno Nevada she is always in pain she has looked into surgery and her state medical will cover it but the drs there will not do it cause the get paid a small percent of what a rich person can pay them. the thig about these cysts they are deadly and my friend has been asking and asking for the help and no one is hearing her or even careing they just push her off to the side
Oh no😢 i also have a same issue now. hows your friend doing now?
i had this cyst when i was a kid. i was completely paralysed and was on death bed. the pain was so severe but i did my surgery in 1997 . it was a great success and spent my 20 years pain free. now in 2017 im diagnosed with it again. the cyst is back in my thoracic spine. i have no pain but my legs are numb and difficult to walk. plz advise me because im from pakistan and i would like to receive best treatment possible.
From where u operate first?
Bcoz i have also same disease
From where u get surgery bcoz im also in Pakistan and same issue
Plz help me sir
I had arachnoid cyst done my surgery in Dubai
Hi Lisa Anderson, Where do you live? Who took care of your tc.
سلام أنا أعاني من كيس تارلوف في العمود الفقري هل من حل
I have a lump just in the butt crack that is really painful,could this be a Taylor cyst or a pionidal?
tarloc cyst won't show up in your butt, they're in your spine
If only it were that simple. Canada continues to be apathetic towards tarlov cysts noting it as always as incidental and not causing symptoms. Surgery in the USA is out of reach for the majority because of the astronomical cost. But good news story for American patients. What type of surgery was it? Aspiration? Fibrin Glue?
I just had surgery June 22nd with Dr Frank Feigenbaum in Dallas tx. They don't use filbrin glue, he drained the cysts plugged them and ties them with bovine, then my sacrum bone was very thin he puts a plastic dissolving cup that molds to the shape of your sacrum bone to help make it strong again. It takes 2 yrs to dissolve into your bone, Dr Feigenbaum monitors you for 2 years, consists of getting mri every 3months you fill out questioner as far as finding out if you have permanent nerve damage after the 2yrs is up.
Hi Stacy, I have a consult with Dr F. And while I am in severe burning pain from my cysts I have been a bit scared by people's recovery time and complications. I hope you are having a good recovery! Are you happy with your results? If you don't mind me asking?
Dave that is right. I told the spine specialist about knowing I have a Tarlov Cyst and he completely ignored me... I lose strength in my legs and its very difficult sometimes.
Any treatment for it
From which doctor u operate this
Very little info.
I have a Tarlov cyst on my tailbone and it is very painful. It comes and goes, but I say it needs to go for good. I live in Galveston , Tx and had my 1st visit with a neurosurgion, he told me they don't treat Tarlov Cysts. I'm on Medicaid and need to find another dr. that treats tarlov cyst patients. I want and need it gone. Can anyone refet me to someone in my area that accepts Amerigroup medicaid. I'm desperate.
Pam you live in the best state because Dr Frank Feigenbaum in Dallas tx. Does treat the tarlov cysts disease. I live in Utah I just had surgery June 22nd 2016, I've had the disease at least 10yrs I had 3 cysts in my sacrum I also have them in my pelvis. I do feel better I don't feel like I have shards of glass in my hips now it's about healing.
Hey, Pam Williams. I live near you and am recovering from TCs. Communicate with me if you like.
Willems...sorry!
Hi Stacy, I have an appointment with Dr. f this week. So hoping for a solution. How are you feeling? Are you glad you had the surgery?
Pam Willems
i know how you feel i have one in my s1 as active duty military i catch a lot of shit and am called a "malingering fuck" cause i don't want surgery from the navy.