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Old 09-05-2014, 08:50 AM #1
Hazrul Hazrul is offline
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Default Asking a solution for Tarlov Cyst Surgery

Hai there im new to this forum..

My name is Hazrul 31 year old married and have 1 daughter. Im from Malaysia, I have a pain at my back until to my toe. i got this symptoms after i carried and lift heavy things on middle December at my work place. I have miserable cramp my whole body after the second day but yet im still working on the day and went to clinic for consultation..the doc refer me to panel hospital for check up.. and have been diagnose me with x-ray and found nothing and might be just muscle cramp only cause after lifting heavy object.. but he ask me to see him another appointment after a week to see my progression.. give me 2 days off and also give me a medication to relief my pain.. after back from my quarters and consume the medication and hope the pain will be relief.. about a few days the pain gone away but i have a serious pain at my middle and lower back till to my toe..and i go and do consultation again on my appointment and ask me to admit in hospital on the 7/1/14.. for the dec im only been working for 15 days and the rest of the days i just rest and rest until my admit to the hospital.

on the day i admitted i've been ask to do a partial MRI scan on lumbar area and been diagnose a i got 1 cyst at my L5 area.. the doctor did tell me in detail and about my symptoms but he say i was asymptomatic and he will give me a pain relief medication celebrex, myonal 100mg and arcoxia 90mg. but if the pain not relief i have to see him again another 2 weeks time.. do i just work like normal after i been discharge from hospital on the 16/1/14.. when discharge time i continue work as normal even the pain is there and nothing that i can do to ease it up just by eating my medication..i cant walk properly and my back hurts cant bend even i have to bend and walking while im working.. 2 week later i go and consult the doctor again and this time i been approach by neurosurgeon doctor and i have to admit again at the hospital cause my symptoms getting worse i cant even feel my left leg for a time of period and the sensation was not there.. this time i have to do half body MRI to determine the what is the causes.. seems like im very happy in "sadness" that the MRI shown that i have a extensive of multiple cyst at my lumbar + sacral spine.. and i was in shock to know and i have 12 of it in different size.. its worst then i taught.. the doctor advice me a lot of things and also he find this cases very rare in malaysia. For him im the first patient that he handle for this case.. and ask me many question about my symptoms and pains in part of areas.. he also increase my dosage of medication due to he know how pain it is while having the cyst compressing the nerve systems i was relief that have a good and kind and also helping doctor like him around and i felt i was save by the bell.. medication have been change due to i have rash at my back.. now turn out lyrica 150mg 1 2x, Myonal 50mg2 3x, Arcoxia 120mg 2 for 1x and neuro vitamin B12.. looks like fun to consume and got a lots of medication every each week i need to go and consult doctor and even the best part is its getting worst and worst.. after several month see and consult and he already ask for more information and ask for suggestion from other doctors even in oversea and the reply back was very depressive to hear.. and the first option that he want to make is to do a steroid injection to try out and relief the pain (pain management) due to success to remove the cyst are very small and also will be more harder if it get worsen.. for normally it will have and infection and also meningitis if the result are bad i will be paralyze and will not be able to walk.. so its was a 50/50 chances that i have to bare..
After the injection that i made i was happy with the result and i was pain free but it only can last only for a week at first and i already go back to work with desk duties due to my condition are not well.. i work only for a few days and the symptoms are worsen up after the injection.. i go an consult doctor again and this time i cant work.. its because i cant even stand long and sit long the best way to relief the pain is by lying at bed and that is more comfortable my.. the pain describable and now i need to use a walking crutches to support my walking and back.. its worsen even each day.. now it was nearly to 9 month i have this symptoms and i already not at work till now.. and the last resort are to make a surgery but not to remove the cyst or cure but to uncompressed the cyst to make it more space and the doctor said that the procedure have to remove 1 layer with some size of area of bone at sacral spine area.

Need to ask your all opinion is it the best way to do so? and if it done what is the risk and success to this method?
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Old 09-06-2014, 10:46 PM #2
Kathryn1 Kathryn1 is offline
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Kathryn1 Kathryn1 is offline
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Default Tarlov Cyst Foundation

Quote:
Originally Posted by Hazrul View Post
Hai there im new to this forum..

My name is Hazrul 31 year old married and have 1 daughter. Im from Malaysia, I have a pain at my back until to my toe. i got this symptoms after i carried and lift heavy things on middle December at my work place. I have miserable cramp my whole body after the second day but yet im still working on the day and went to clinic for consultation..the doc refer me to panel hospital for check up.. and have been diagnose me with x-ray and found nothing and might be just muscle cramp only cause after lifting heavy object.. but he ask me to see him another appointment after a week to see my progression.. give me 2 days off and also give me a medication to relief my pain.. after back from my quarters and consume the medication and hope the pain will be relief.. about a few days the pain gone away but i have a serious pain at my middle and lower back till to my toe..and i go and do consultation again on my appointment and ask me to admit in hospital on the 7/1/14.. for the dec im only been working for 15 days and the rest of the days i just rest and rest until my admit to the hospital.


on the day i admitted i've been ask to do a partial MRI scan on lumbar area and been diagnose a i got 1 cyst at my L5 area.. the doctor did tell me in detail and about my symptoms but he say i was asymptomatic and he will give me a pain relief medication celebrex, myonal 100mg and arcoxia 90mg. but if the pain not relief i have to see him again another 2 weeks time.. do i just work like normal after i been discharge from hospital on the 16/1/14.. when discharge time i continue work as normal even the pain is there and nothing that i can do to ease it up just by eating my medication..i cant walk properly and my back hurts cant bend even i have to bend and walking while im working.. 2 week later i go and consult the doctor again and this time i been approach by neurosurgeon doctor and i have to admit again at the hospital cause my symptoms getting worse i cant even feel my left leg for a time of period and the sensation was not there.. this time i have to do half body MRI to determine the what is the causes.. seems like im very happy in "sadness" that the MRI shown that i have a extensive of multiple cyst at my lumbar + sacral spine.. and i was in shock to know and i have 12 of it in different size.. its worst then i taught.. the doctor advice me a lot of things and also he find this cases very rare in malaysia. For him im the first patient that he handle for this case.. and ask me many question about my symptoms and pains in part of areas.. he also increase my dosage of medication due to he know how pain it is while having the cyst compressing the nerve systems i was relief that have a good and kind and also helping doctor like him around and i felt i was save by the bell.. medication have been change due to i have rash at my back.. now turn out lyrica 150mg 1 2x, Myonal 50mg2 3x, Arcoxia 120mg 2 for 1x and neuro vitamin B12.. looks like fun to consume and got a lots of medication every each week i need to go and consult doctor and even the best part is its getting worst and worst.. after several month see and consult and he already ask for more information and ask for suggestion from other doctors even in oversea and the reply back was very depressive to hear.. and the first option that he want to make is to do a steroid injection to try out and relief the pain (pain management) due to success to remove the cyst are very small and also will be more harder if it get worsen.. for normally it will have and infection and also meningitis if the result are bad i will be paralyze and will not be able to walk.. so its was a 50/50 chances that i have to bare..
After the injection that i made i was happy with the result and i was pain free but it only can last only for a week at first and i already go back to work with desk duties due to my condition are not well.. i work only for a few days and the symptoms are worsen up after the injection.. i go an consult doctor again and this time i cant work.. its because i cant even stand long and sit long the best way to relief the pain is by lying at bed and that is more comfortable my.. the pain describable and now i need to use a walking crutches to support my walking and back.. its worsen even each day.. now it was nearly to 9 month i have this symptoms and i already not at work till now.. and the last resort are to make a surgery but not to remove the cyst or cure but to uncompressed the cyst to make it more space and the doctor said that the procedure have to remove 1 layer with some size of area of bone at sacral spine area.

Need to ask your all opinion is it the best way to do so? and if it done what is the risk and success to this method?
Hi Hakrul,
The best advice I can give you is to contact the Tarlov Cyst Foundation. Ms. Reta Honey Hiers will advise you what to do next and give information regarding tarlov cyst disease. Also, See the website under Dr. Feigenbaum, neurosurgeon, Dallas, TX (expert in tarlov cyst disease) where you can find more infomation regarding tarlov cysts. I have 5 tarlov cysts at s1-s3 levels and was recommended to have surgery for these cysts by Dr. Feigenbaum. I am contemplating due to expenses, recovery, etc. I have not defintely ruled out surgery but it is a major step and expense.
I hope you find the answers you need.
Kathryn1
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Old 09-07-2014, 07:31 AM #3
ginnie ginnie is offline
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Posts: 6,278
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ginnie ginnie is offline
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Posts: 6,278
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Default Hello Hazrul

The post with the cyst foundation, I sure would contact. Do all the research you can via the PC. Since your doctors have not seen a patient like you before, it would be in your best interest to seek a facility even outside your country for more DX work, to see if there is some other option for you. Don't give up, and I will also keep you in my thoughts and prayers. There are others on NT that have this cyst. I hope they will respond to you and give you some helpful information. ginnie
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Old 09-07-2014, 05:58 PM #4
Kathryn1 Kathryn1 is offline
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Default AIMIS Spine Institute

Quote:
Originally Posted by Hazrul View Post
Hai there im new to this forum..

My name is Hazrul 31 year old married and have 1 daughter. Im from Malaysia, I have a pain at my back until to my toe. i got this symptoms after i carried and lift heavy things on middle December at my work place. I have miserable cramp my whole body after the second day but yet im still working on the day and went to clinic for consultation..the doc refer me to panel hospital for check up.. and have been diagnose me with x-ray and found nothing and might be just muscle cramp only cause after lifting heavy object.. but he ask me to see him another appointment after a week to see my progression.. give me 2 days off and also give me a medication to relief my pain.. after back from my quarters and consume the medication and hope the pain will be relief.. about a few days the pain gone away but i have a serious pain at my middle and lower back till to my toe..and i go and do consultation again on my appointment and ask me to admit in hospital on the 7/1/14.. for the dec im only been working for 15 days and the rest of the days i just rest and rest until my admit to the hospital.

on the day i admitted i've been ask to do a partial MRI scan on lumbar area and been diagnose a i got 1 cyst at my L5 area.. the doctor did tell me in detail and about my symptoms but he say i was asymptomatic and he will give me a pain relief medication celebrex, myonal 100mg and arcoxia 90mg. but if the pain not relief i have to see him again another 2 weeks time.. do i just work like normal after i been discharge from hospital on the 16/1/14.. when discharge time i continue work as normal even the pain is there and nothing that i can do to ease it up just by eating my medication..i cant walk properly and my back hurts cant bend even i have to bend and walking while im working.. 2 week later i go and consult the doctor again and this time i been approach by neurosurgeon doctor and i have to admit again at the hospital cause my symptoms getting worse i cant even feel my left leg for a time of period and the sensation was not there.. this time i have to do half body MRI to determine the what is the causes.. seems like im very happy in "sadness" that the MRI shown that i have a extensive of multiple cyst at my lumbar + sacral spine.. and i was in shock to know and i have 12 of it in different size.. its worst then i taught.. the doctor advice me a lot of things and also he find this cases very rare in malaysia. For him im the first patient that he handle for this case.. and ask me many question about my symptoms and pains in part of areas.. he also increase my dosage of medication due to he know how pain it is while having the cyst compressing the nerve systems i was relief that have a good and kind and also helping doctor like him around and i felt i was save by the bell.. medication have been change due to i have rash at my back.. now turn out lyrica 150mg 1 2x, Myonal 50mg2 3x, Arcoxia 120mg 2 for 1x and neuro vitamin B12.. looks like fun to consume and got a lots of medication every each week i need to go and consult doctor and even the best part is its getting worst and worst.. after several month see and consult and he already ask for more information and ask for suggestion from other doctors even in oversea and the reply back was very depressive to hear.. and the first option that he want to make is to do a steroid injection to try out and relief the pain (pain management) due to success to remove the cyst are very small and also will be more harder if it get worsen.. for normally it will have and infection and also meningitis if the result are bad i will be paralyze and will not be able to walk.. so its was a 50/50 chances that i have to bare..
After the injection that i made i was happy with the result and i was pain free but it only can last only for a week at first and i already go back to work with desk duties due to my condition are not well.. i work only for a few days and the symptoms are worsen up after the injection.. i go an consult doctor again and this time i cant work.. its because i cant even stand long and sit long the best way to relief the pain is by lying at bed and that is more comfortable my.. the pain describable and now i need to use a walking crutches to support my walking and back.. its worsen even each day.. now it was nearly to 9 month i have this symptoms and i already not at work till now.. and the last resort are to make a surgery but not to remove the cyst or cure but to uncompressed the cyst to make it more space and the doctor said that the procedure have to remove 1 layer with some size of area of bone at sacral spine area.

Need to ask your all opinion is it the best way to do so? and if it done what is the risk and success to this method?
Hi Hazrul,
I also thought of something else to contact. AIMIS Spine Institute is a place where patients from other countries can contact regarding Tarlov cyst disease.
Dr. Frank Feigenbaum, neurosurgeon, and best in the field, is associated with AIMIS. I hope this helps, too.
Kathryn1
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Old 09-09-2014, 01:11 PM #5
Hazrul Hazrul is offline
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Default

Thanks for the support guys..my doctor encourage me to have as many opinion as i can to make me more understand the process.. but i'm sure yea its kinda costing for me to go overseas and as well now i didn't go to work for earning..might be oversea is the worst case scenario for me to go to due to financial problems. but yet i will try and go through with the tc foundation first to have the best answer for me. need to prep myself as well on this coming operation that i will be going on nov if worst case scenario happen..sometimes people doest know what happen to tc patient go through i also have head ache with what people was telling me.. hope they got what it felt to be like me.. day by day pain make it worse and i'm going to minimize consuming medication due to already effect my kidney.. what a journey of life
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Old 09-12-2014, 11:50 PM #6
Kathryn1 Kathryn1 is offline
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Default Tough journey

Quote:
Originally Posted by Hazrul View Post
Thanks for the support guys..my doctor encourage me to have as many opinion as i can to make me more understand the process.. but i'm sure yea its kinda costing for me to go overseas and as well now i didn't go to work for earning..might be oversea is the worst case scenario for me to go to due to financial problems. but yet i will try and go through with the tc foundation first to have the best answer for me. need to prep myself as well on this coming operation that i will be going on nov if worst case scenario happen..sometimes people doest know what happen to tc patient go through i also have head ache with what people was telling me.. hope they got what it felt to be like me.. day by day pain make it worse and i'm going to minimize consuming medication due to already effect my kidney.. what a journey of life
Hi Hazrul,
Good luck on your upcoming surgery. I hope all goes well. Finding more information regarding Tarlov cysts is confusing but also enlightening to know what your options will be. It is a tough journey when Tarlov cysts are not well known except a few neurosurgeons in the world. Do not give up to find the best medical care!
Kathryn1
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Old 02-15-2023, 09:22 AM #7
Suzie Kumari Suzie Kumari is offline
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Default Looking for Tarlov Cyst treatment

Hi, I read your article altho 10 years had passed. Did you have any successful surgery?
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Old 02-16-2023, 09:31 AM #8
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Welcome Suzie Kumari.
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