This scares the crap outta me. I just had an MRI report saying I have a 1cm bilobed perineural cyst (tarlov) and told it is not what is causing my pain, numbness, sciatica etc. I can barely sit more than 15 mins in a certain position and always feel like I am sitting on a pebble or like something in the way where the pain is and then the MRI showed the cyst. Yet I been told nobody in canada operates on these and they are very common and its not what is causing my pain. So instead I'm just being sent to a pain clinic for pain management. Any help or information you can offer would be greatly appreciated. I can no longer work due to the pain and medical employment insurance is about to run out. I am running short on time and answers. Your journey scares me yet has inspired me to reach out, I don't want this to progress into something much worse. I can be reached by email at lljeffrey at yahoo dot ca
Canada does not have doctors that can operate on Tarlov cysts. Dr. Frank Feigenbaum of Texas is t he e expert. He does surgeries in Cyprus as well for non Americas. His surgical procedure is least invasive.
last year I had a MRI done on my lower back. it found a tarlov cyst in the sacrum. I have a disk that is obliterated. 3 more that have degenerative disk diese. and bone spurs. no doctor want to touch my back at all. I am 45 I have had to endure pain since I was 13. there are times I fall down. because I get shooting pains in my legs that cause me to fall. I can hope one day I can be pain free.
People tend to not believe they can get better. It's possible I'm 3 years pain free. If you know the location of Tarlov. The specific procedure's using epidural steroid injections. Means you can get your life back Two procedures and one month. Less pain than normal people.
I don't know how I came upon this but I'm glad I did! I'm so happy to see you recovered, I pray you are still doing well. I've been disabled 16 years, a car accident, so my story is different but alike in some ways. Like you, I try so hard to stay positive and I know I always will ( or I'd like to think I will anyway, lol). I admire you for staying so strong and upbeat through everything you went through. I know there is not a chance I will ever walk again but it brought me so much happiness (and many tears) to watch this and see you regain your ability to live life walking again! I wish you the best of luck! God Bless!!
Wow, so inspirational!! Having gone through several life threatening health issues over the last few years myself, I see life totally differently, there's a reason I'm still here. I had a stroke in 2014 I was 35, and in December I had a heart attack at 36!! But like you....I've never stopped smiling. Must be something in our name!! Lol. So glad to see you're life and health back on track. KEEP SMILING! X 👩🏼
I was just diagnosed with a Tarlov cyst and saw this journey you have shared. I noticed that this was almost a decade ago and hope that you will share an update on how you are doing.
Had surgery a few weeks ago. Walking better each day. Now to be rid of pudendal nerve issues I I’d feel back to normal. Praying this issue gets healed and isn’t permanent with me. This video is what gave me hope and courage to see Dr Feigenbaum and fly out to Texas for surgery. So happy to see this beautiful girl recover from all this! Praying i follow her the same way. 🤗❤️🙏
What were your beginning symptons?id your tremors subside after surgery? Was it the tarlov cysts giving you the tremors and weakness? Wow what an improvement:)
You are an inspiration to me. I've been living with this for years; undiagnosed for so long. Hoping to have surgery performed by Dr. Feigenbaum some day! You were in the hands of a miracle worker. Bless....
Praise Jesus!! I just saw your video of your journey and must say Thank Jesus, Dr's and you. You are a miracle. Never underestimate the power of god. Keep it up sweety. I'm a former EMT- PARAMEDIC and i no longer work i fell from 5 ft off the ground on a deck. I weighted 135 lbs at the time. It had rained 4 daus straight and the 8 steps up my deck had only be secured to the deck with 2 screws so i made one step one them and the came loose i landed, on top of them on our concrete patio. At the hospital mri's showed. Bilateral pars defect of L-5 and also S-1 with sciatica. Also my spine is extremely thin and i have osteoporosis, and Neuropathy. As well as perifeal nerve damage. They need to operate but I'm still waiting for i have COPD w/emphysema and I'm 53 yrs old. But i keep my faith for i know jesus loves me and he will take care of me in his pwm time. So pleade take care of your self and your body because getting old is a pain in the rear. God bless.
last year I had a MRI done on my lower back. it found a tarlov cyst in the sacrum. I have a disk that is obliterated. 3 more that have degenerative disk diese. and bone spurs. no doctor want to touch my back at all. I am 45 I have had to endure pain since I was 13. there are times I fall down. because I get shooting pains in my legs that cause me to fall. I can hope one day I can be pain free.
Thanks for sharing..Wishing you well ! This gives me Hope and knowing Tarlov are causing my weakness,pain and tremors.Also show people who does not understand ,what it is like to live life.
My 14 year old daughter has a very large Tarlov Cyst in her Sacrum. Her tailbone is backwards, she has delt with stomach & pelvic pain for many years, she can't sit, can't walk or stand for long, sometimes hardly make it the bathroom, foot problems & pain, arm & shoulder pain & numbness and her back pain is increasing to where she can't sleep. We go have several doctors who are trying to help & send her to a neurosurgeon or neurologist but Not One will see us or even speak to me about her. They say it's not causing her symptoms & or it's non operable so there is no reason to see or talk to us! I can't believe this! And the other docs know it's bad but don't know who can help. She is very active but it's starting to affect her daily life more & more. You are the first young person I have hear of or seen with the TC and I thank you so much for sharing your story! I'm single mom & trying everything I can to help her. I'm so worried of the potential damage this can do & her future. I was wondering if you may be willing to share with me a little more about you, how you found yours, symptoms, doctors, etc.? I have been researching the dr who did your surgery & so far he seems wonderful! I'm so disgusted with how so many doctors are blowing this off & leaving patients to deal with this. Sorry for the Long comment... I hope you are still feeling well & are TC free! Annie
You can go on the tarlov cysts disease foundation it's very helpful print off information and if she had a mri bring report that's what I did I'm still waiting to get to have surgery I need 2 because I have them in my pelvis also I'm waiting on my Medicare because I can't work anymore
This video just gave me so much hope. My body shuts down at times from the,Tarlov Cysts. It was so hard to watch in the beginning but im glad I finished it. Gives ne hope that one day I to will be able to do some of the same things again.❤🙏🏾
I had this surgery in September of 2012 with Dr. Feigenbaum. I couldn't get out of bed before the surgery. Afterwards I was able to get out of bed. I babysit my granddaughter every day, which I wouldn't of been able to do without the surgery. It was a life saver. I still have pain, but nothing like it was before.
@@KDubTwin2 hw many cycsts she have and wht us the size i also have 2 and i have three Small kids im so upset no ine here to tell me about it and everybody scared 😨 me about surgery im helpless plz guide me properly is it safe surgery and
Aloha little sistah! ;-) I'm SO glad to see you are well! I've been disabled for 15 years. I was told the large tarlov cyst (takes up entire sacral canal) wasn't the cause of my pain and lack of mobility, but because of my sporting accident's failed back surgery... yet here I am 15 years later (I am now bedridden). Noone wants to even consider the tarlov cyst as a culprit. I was also told that if they removed it, that it would just grow back. Is this possible with yours? I m SO tired of pain meds! I want my life back.
Please get in touch with Dr. Frank Feigenbaum. My former Doctor said that my symptoms were not caused by the tarlov cyst. Dr. Feigenbaum knows all about TCD, inside and out. I am bedridden about 4 days out of the week. Fall a lot, right foot drags and now am having trouble driving; I have to use my left foot to brake. This disease is horrible but it is treatable with the right Neurosurgeon, and there is only 1 that I trust, as do so many other TCD sufferers. .
Aloha bitterexdroid , You know... Ive given this a lot of thought and I think you're correct... I will contact the doctor's office. Mahalo nui loa (thank you very much) for your reply. I no longer drive because I don't trust my reflexes... and when one cannot feel the bottom of feet... well, it made sense for me not to drive. Please be careful. Mobility is such a GIFT. When it is taken from you, it makes for a difficult life. For 15 years I have slowly lost mobility. I now have "running" dreams. AH... SO NICE! I feel the air rushing passed my face and feel so free... then I wake up. Instead of getting too down about it, I just look forward to the next running dream. But what I would give to be able to run! ;-)
Aloha bitterexdroid I will keep in touch and I added you to my prayer list. I pray every day and I will remember you and everyone else here in my prayers. ;-) Aloha 'oe.
Aloha again! Just thought I'd check up on how you're doing. I FINALLY got referred to a surgeon! YAAAAY! Hopefully, I'll see the light at the end of the very loooong tunnel I've been travelling in! Take care. As always, I'm praying for you. ;-)
This scares the crap outta me. I just had an MRI report saying I have a 1cm bilobed perineural cyst (tarlov) and told it is not what is causing my pain, numbness, sciatica etc. I can barely sit more than 15 mins in a certain position and always feel like I am sitting on a pebble or like something in the way where the pain is and then the MRI showed the cyst. Yet I been told nobody in canada operates on these and they are very common and its not what is causing my pain. So instead I'm just being sent to a pain clinic for pain management. Any help or information you can offer would be greatly appreciated. I can no longer work due to the pain and medical employment insurance is about to run out. I am running short on time and answers. Your journey scares me yet has inspired me to reach out, I don't want this to progress into something much worse. I can be reached by email at lljeffrey at yahoo dot ca
Canada does not have doctors that can operate on Tarlov cysts. Dr. Frank Feigenbaum of Texas is t he e expert. He does surgeries in Cyprus as well for non Americas. His surgical procedure is least invasive.
Wish we could hear what was being said. Music was way too loud.
last year I had a MRI done on my lower back. it found a tarlov cyst in the sacrum. I have a disk that is obliterated. 3 more that have degenerative disk diese. and bone spurs. no doctor want to touch my back at all. I am 45 I have had to endure pain since I was 13. there are times I fall down. because I get shooting pains in my legs that cause me to fall. I can hope one day I can be pain free.
I have the same problem there is not a day free of pain, since I was 23 now 52 i think I am going to be on wheelchair in few more years.
@@ingridramirez4436wheel chair avoidance is the target. The Wahl protocol diet plus aloe vera in pill form.
People tend to not believe they can get better. It's possible I'm 3 years pain free. If you know the location of Tarlov. The specific procedure's using epidural steroid injections. Means you can get your life back
Two procedures and one month. Less pain than normal people.
I don't know how I came upon this but I'm glad I did! I'm so happy to see you recovered, I pray you are still doing well. I've been disabled 16 years, a car accident, so my story is different but alike in some ways. Like you, I try so hard to stay positive and I know I always will ( or I'd like to think I will anyway, lol). I admire you for staying so strong and upbeat through everything you went through. I know there is not a chance I will ever walk again but it brought me so much happiness (and many tears) to watch this and see you regain your ability to live life walking again! I wish you the best of luck! God Bless!!
Wow, so inspirational!! Having gone through several life threatening health issues over the last few years myself, I see life totally differently, there's a reason I'm still here. I had a stroke in 2014 I was 35, and in December I had a heart attack at 36!! But like you....I've never stopped smiling. Must be something in our name!! Lol. So glad to see you're life and health back on track.
KEEP SMILING! X 👩🏼
I was just diagnosed with a Tarlov cyst and saw this journey you have shared. I noticed that this was almost a decade ago and hope that you will share an update on how you are doing.
I too had a similar diagnosis, last month.
Had surgery a few weeks ago. Walking better each day. Now to be rid of pudendal nerve issues I I’d feel back to normal. Praying this issue gets healed and isn’t permanent with me.
This video is what gave me hope and courage to see Dr Feigenbaum and fly out to Texas for surgery.
So happy to see this beautiful girl recover from all this! Praying i follow her the same way. 🤗❤️🙏
What were your beginning symptons?id your tremors subside after surgery? Was it the tarlov cysts giving you the tremors and weakness? Wow what an improvement:)
May god continue to bless you and keep you from harmsway!!!
You are an inspiration to me. I've been living with this for years; undiagnosed for so long. Hoping to have surgery performed by Dr. Feigenbaum some day! You were in the hands of a miracle worker. Bless....
did you end up getting surgery?
Turn the music down. Couldn’t hear you.
Praise Jesus!! I just saw your video of your journey and must say Thank Jesus, Dr's and you. You are a miracle. Never underestimate the power of god. Keep it up sweety. I'm a former EMT- PARAMEDIC and i no longer work i fell from 5 ft off the ground on a deck. I weighted 135 lbs at the time. It had rained 4 daus straight and the 8 steps up my deck had only be secured to the deck with 2 screws so i made one step one them and the came loose i landed, on top of them on our concrete patio. At the hospital mri's showed. Bilateral pars defect of L-5 and also S-1 with sciatica. Also my spine is extremely thin and i have osteoporosis, and Neuropathy. As well as perifeal nerve damage. They need to operate but I'm still waiting for i have COPD w/emphysema and I'm 53 yrs old. But i keep my faith for i know jesus loves me and he will take care of me in his pwm time. So pleade take care of your self and your body because getting old is a pain in the rear. God bless.
🥺😢🥺 i have also tarlov cysts and i am fucking scared 😭😭😭
last year I had a MRI done on my lower back. it found a tarlov cyst in the sacrum. I have a disk that is obliterated. 3 more that have degenerative disk diese. and bone spurs. no doctor want to touch my back at all. I am 45 I have had to endure pain since I was 13. there are times I fall down. because I get shooting pains in my legs that cause me to fall. I can hope one day I can be pain free.
I got into a car accident in the summer and I just did mri and they found a few tarlov cysts in my s2 and s3 and I’m so scared
Thanks for sharing..Wishing you well ! This gives me Hope and knowing Tarlov are causing my weakness,pain and tremors.Also show people who does not understand ,what it is like to live life.
Did anyone have them in the thoracic area
Wow you give me hope thank you I have tarlov cysts disease in my spine and pelvis eroding my sacrum bone and nerves in my spine.
Can you make an update you tube video of your progress. you inspire me.
Katherin Gibbs was in my math class!!! crazy stumbling upon this. Your awesome dude and so happy to see you recover. Mr. johnson!!!
God Bless you.
So great to see positive outcome
My 14 year old daughter has a very large Tarlov Cyst in her Sacrum. Her tailbone is backwards, she has delt with stomach & pelvic pain for many years, she can't sit, can't walk or stand for long, sometimes hardly make it the bathroom, foot problems & pain, arm & shoulder pain & numbness and her back pain is increasing to where she can't sleep.
We go have several doctors who are trying to help & send her to a neurosurgeon or neurologist but Not One will see us or even speak to me about her. They say it's not causing her symptoms & or it's non operable so there is no reason to see or talk to us!
I can't believe this! And the other docs know it's bad but don't know who can help. She is very active but it's starting to affect her daily life more & more.
You are the first young person I have hear of or seen with the TC and I thank you so much for sharing your story! I'm single mom & trying everything I can to help her. I'm so worried of the potential damage this can do & her future. I was wondering if you may be willing to share with me a little more about you, how you found yours, symptoms, doctors, etc.? I have been researching the dr who did your surgery & so far he seems wonderful! I'm so disgusted with how so many doctors are blowing this off & leaving patients to deal with this.
Sorry for the Long comment... I hope you are still feeling well & are TC free!
Annie
You can go on the tarlov cysts disease foundation it's very helpful print off information and if she had a mri bring report that's what I did I'm still waiting to get to have surgery I need 2 because I have them in my pelvis also I'm waiting on my Medicare because I can't work anymore
What is the size if ur cycst
@@sumofme1 what us the size of ur cycst r she fine nowadays
It has been so long. How is your daughter now?
This video just gave me so much hope. My body shuts down at times from the,Tarlov Cysts. It was so hard to watch in the beginning but im glad I finished it. Gives ne hope that one day I to will be able to do some of the same things again.❤🙏🏾
Me das esperanza 😢
Great story, I hope she is still doing well. Thanks TH-cam for the transcript, the dialogue has been obliterated by unnecessary piano.
Hi does spine anesthesia could cause Tarlov Cyst to grow or worsen? Should I avoid Spine Anesthesia?
MRI showed I have two. I have lots of pain. dr. did not tell me that those could cause my pain. 20 yrs. later, still hurting.
Great recovery, but the music is so loud it's hard to hear!
I had this surgery in September of 2012 with Dr. Feigenbaum. I couldn't get out of bed before the surgery. Afterwards I was able to get out of bed. I babysit my granddaughter every day, which I wouldn't of been able to do without the surgery. It was a life saver. I still have pain, but nothing like it was before.
Hw r u now adays
@@Robloxuser3319 great!! My twin sister had to have the same surgery. She is doing wonderful also. I believe her surgery was around 2017.
@@KDubTwin2 hw many cycsts she have and wht us the size i also have 2 and i have three Small kids im so upset no ine here to tell me about it and everybody scared 😨 me about surgery im helpless plz guide me properly is it safe surgery and
Can u plz guide me and talk to me where r u? Help me plz
@@Robloxuser3319 do you have an email address? I live in Texas. Not too far from Dr. Feigenbaum.
Great video but I can't hear her because of the loud music
Oh wow. I have a large Tarlov cyst on my sacrum that's eroded the bone. Is the recovery this difficult for everyone? I'm scared.
Lauren Kazlo
Me too!
can you please tell us how you doing now
Wow, what a story! Glory to God!
How large were your cysts?
Does tarlov cyst always have to be operated/removed by surgery?
انا ايضا لدي كيس تارلوف واريد ان اعرف اذا يلزم الجراحة
So happy for you!
Aloha little sistah! ;-)
I'm SO glad to see you are well! I've been disabled for 15 years. I was told the large tarlov cyst (takes up entire sacral canal) wasn't the cause of my pain and lack of mobility, but because of my sporting accident's failed back surgery... yet here I am 15 years later (I am now bedridden). Noone wants to even consider the tarlov cyst as a culprit. I was also told that if they removed it, that it would just grow back. Is this possible with yours? I m SO tired of pain meds! I want my life back.
Please get in touch with Dr. Frank Feigenbaum. My former Doctor said that my symptoms were not caused by the tarlov cyst. Dr. Feigenbaum knows all about TCD, inside and out. I am bedridden about 4 days out of the week. Fall a lot, right foot drags and now am having trouble driving; I have to use my left foot to brake. This disease is horrible but it is treatable with the right Neurosurgeon, and there is only 1 that I trust, as do so many other TCD sufferers. .
Aloha bitterexdroid ,
You know... Ive given this a lot of thought and I think you're correct... I will contact the doctor's office. Mahalo nui loa (thank you very much) for your reply. I no longer drive because I don't trust my reflexes... and when one cannot feel the bottom of feet... well, it made sense for me not to drive. Please be careful.
Mobility is such a GIFT. When it is taken from you, it makes for a difficult life. For 15 years I have slowly lost mobility. I now have "running" dreams. AH... SO NICE! I feel the air rushing passed my face and feel so free... then I wake up. Instead of getting too down about it, I just look forward to the next running dream.
But what I would give to be able to run! ;-)
Aunty Keli
Please keep me posted. Am hunting for my last MRI and calling Dr. Feigenbaum tomorrow. Bless...
Aloha bitterexdroid I will keep in touch and I added you to my prayer list. I pray every day and I will remember you and everyone else here in my prayers. ;-) Aloha 'oe.
Aloha again! Just thought I'd check up on how you're doing. I FINALLY got referred to a surgeon! YAAAAY! Hopefully, I'll see the light at the end of the very loooong tunnel I've been travelling in! Take care. As always, I'm praying for you. ;-)