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Old 11-09-2013, 09:37 PM #1
Kathryn1 Kathryn1 is offline
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Kathryn1 Kathryn1 is offline
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Default Research for Post OP Surgery

Hi Tarlov community,
My name is Kathryn from Boston, MA area and was diagnosed with multiple 5 Tarlov cysts at S1,Bilateral S2, and Bilateral S3. The cysts are 1.4cm in general. I was informed by Dr. Feigenbaum with phone consultation, neurosurgeon, from TX, that these cysts are compression on the sacral nerve roots. He recommended surgery and to repair my sacral bone with mesh and stated no guarantees. I will be scheduled after March, 2014. I am on Social Security Disability due to the Tarlov cysts, moderate spinal stenosis, and lumbar spondylosis. Due to Obamacare my insurance will be changing in January and I qualify for Medicare at 24 months in March. Needless to say, I have to wait til March before scheduling surgery.

I could no longer work in an office 8 hours a day sitting. The symptoms daily range from burning, numbness and tingling in the legs and butt, butt pain sitting down, nerve pain in back of both thighs down to the knees, and cramping, pain in both feet and electric shocks occasionally down the legs. The pain increases if walking 15 minutes, sitting an hour or more, driving over 30 minutes. The pain ranges from 4 to 9. It is different on most days. Pain level usually 5 or 6 on most days. I do take amitryptoline 10 mg to 30 mgs at night to ease the pain and help to sleep. I cannot take any other drugs due to chronic kidney disease. I do take Extra Strength Tylenol on occasion which helps a little. I have been through the gamet of Physical Therapy twice, epidural injections, lidocaine patches, TENS machine, hot and cold therapy, deep tissue massage, pain management consult, but nothing has made a difference in the pain level for the past two years.

Tarlov Cyst Association, President Honey Rita Hiers, was very helpful in the beginning of diagnosis last year. Up until then, like all Tarlov cyst sufferers, PT therapists, neurologists, rheumatologists, pain management docs stated Tarlov cysts do not cause this pain but did not have an answer what is causing the pain! I had my MRI's reread with size and location per Ms Hiers and she stated likely the pain is from the cysts. I then sent my medical records, MRI's and other records from docs that I have seen to Dr. Feigenbaum and Dr. Schrot, neurosurgeon, in CA per Ms. Hiers guidance and both stated that these cysts are causing the pain. There are no neurosurgeons in the East that are knowledgeable in TC's, that I can see, on the Internet. There is a neurologist that is familiar with Tarlov cyst disease in Boston, Dr. Louise Anne Oaklander. I have an apptmt with her in March 2014. Before I have surgery, I would like the long term post op surgery for at least 5 years from patients to see how these patients have improved or worse after the surgery for five years.

I am in a quandry whether to have surgery. Dr. Feigenbaum is well qualified and has had excellent results from his website but does not give info regarding patients who have not been satisfied with their results. Also, having surgery could cause more problems or pain, such as scar tissue, bacterial meningitis though rare, incontinence, etc. If I do not have surgery there is potential more damage to the nerves in the legs and sacrum.
Are there any patients that have seen Dr. Feigenbaum or any other neurosurgeon with good results after 5 years post-op Tarlov cyst surgery?
I would appreciate any feedback. Thank you all!!!
Kathryn
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Old 11-13-2013, 03:23 PM #2
ccmcguire ccmcguire is offline
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Smile Talk to Bridges

Quote:
Originally Posted by Kathryn1 View Post
Hi Tarlov community,
My name is Kathryn from Boston, MA area and was diagnosed with multiple 5 Tarlov cysts at S1,Bilateral S2, and Bilateral S3. The cysts are 1.4cm in general. I was informed by Dr. Feigenbaum with phone consultation, neurosurgeon, from TX, that these cysts are compression on the sacral nerve roots. He recommended surgery and to repair my sacral bone with mesh and stated no guarantees. I will be scheduled after March, 2014. I am on Social Security Disability due to the Tarlov cysts, moderate spinal stenosis, and lumbar spondylosis. Due to Obamacare my insurance will be changing in January and I qualify for Medicare at 24 months in March. Needless to say, I have to wait til March before scheduling surgery.

I could no longer work in an office 8 hours a day sitting. The symptoms daily range from burning, numbness and tingling in the legs and butt, butt pain sitting down, nerve pain in back of both thighs down to the knees, and cramping, pain in both feet and electric shocks occasionally down the legs. The pain increases if walking 15 minutes, sitting an hour or more, driving over 30 minutes. The pain ranges from 4 to 9. It is different on most days. Pain level usually 5 or 6 on most days. I do take amitryptoline 10 mg to 30 mgs at night to ease the pain and help to sleep. I cannot take any other drugs due to chronic kidney disease. I do take Extra Strength Tylenol on occasion which helps a little. I have been through the gamet of Physical Therapy twice, epidural injections, lidocaine patches, TENS machine, hot and cold therapy, deep tissue massage, pain management consult, but nothing has made a difference in the pain level for the past two years.

Tarlov Cyst Association, President Honey Rita Hiers, was very helpful in the beginning of diagnosis last year. Up until then, like all Tarlov cyst sufferers, PT therapists, neurologists, rheumatologists, pain management docs stated Tarlov cysts do not cause this pain but did not have an answer what is causing the pain! I had my MRI's reread with size and location per Ms Hiers and she stated likely the pain is from the cysts. I then sent my medical records, MRI's and other records from docs that I have seen to Dr. Feigenbaum and Dr. Schrot, neurosurgeon, in CA per Ms. Hiers guidance and both stated that these cysts are causing the pain. There are no neurosurgeons in the East that are knowledgeable in TC's, that I can see, on the Internet. There is a neurologist that is familiar with Tarlov cyst disease in Boston, Dr. Louise Anne Oaklander. I have an apptmt with her in March 2014. Before I have surgery, I would like the long term post op surgery for at least 5 years from patients to see how these patients have improved or worse after the surgery for five years.

I am in a quandry whether to have surgery. Dr. Feigenbaum is well qualified and has had excellent results from his website but does not give info regarding patients who have not been satisfied with their results. Also, having surgery could cause more problems or pain, such as scar tissue, bacterial meningitis though rare, incontinence, etc. If I do not have surgery there is potential more damage to the nerves in the legs and sacrum.
Are there any patients that have seen Dr. Feigenbaum or any other neurosurgeon with good results after 5 years post-op Tarlov cyst surgery?
I would appreciate any feedback. Thank you all!!!
Kathryn
Hi Kathryn, talk to "Bridges" on here. He lives in Oregon and travels some so he may not be able to get back to you right away. He is three years post op and has had a really good result. He is also going to be active with the Tarlov Cyst Foundation.

I have an 8 mm sacral cyst and trying to get scheduled for surgery now. Have been delaying surgery for several years. Can no longer stand the depression and the pain. Got worse when I lost my job. It is really important for you to have an outside interest otherwise it is really easy to focus to much on your health and become depressed. Good luck!
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Old 11-13-2013, 05:25 PM #3
Kathryn1 Kathryn1 is offline
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Kathryn1 Kathryn1 is offline
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Quote:
Originally Posted by ccmcguire View Post
Hi Kathryn, talk to "Bridges" on here. He lives in Oregon and travels some so he may not be able to get back to you right away. He is three years post op and has had a really good result. He is also going to be active with the Tarlov Cyst Foundation.

I have an 8 mm sacral cyst and trying to get scheduled for surgery now. Have been delaying surgery for several years. Can no longer stand the depression and the pain. Got worse when I lost my job. It is really important for you to have an outside interest otherwise it is really easy to focus to much on your health and become depressed. Good luck!
Hi,
David Bridges emailed me what he has been through. I am not sure if surgery is the right time for me. I am doing more research, and not focusing on surgery at this time. Medicare does not start til March, 2014 where I would be covered for the surgery anyways. In the meantime, I am taking more of a holistic approach to this unfortunate problem. My symptoms are not so severe consistently now and hopefully do not become severe constant in the future. Unless it is absolutely necessary to have surgery, I am opting out at this time due to the unknown of scar tissue, nerve damage, etc. I hope you consider this. Is surgery the only option for you? Good luck when and if you have surgery!
Kathryn
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Old 02-06-2014, 08:57 PM #4
jcyster jcyster is offline
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Quote:
Originally Posted by ccmcguire View Post
Hi Kathryn, talk to "Bridges" on here. He lives in Oregon and travels some so he may not be able to get back to you right away. He is three years post op and has had a really good result. He is also going to be active with the Tarlov Cyst Foundation.

I have an 8 mm sacral cyst and trying to get scheduled for surgery now. Have been delaying surgery for several years. Can no longer stand the depression and the pain. Got worse when I lost my job. It is really important for you to have an outside interest otherwise it is really easy to focus to much on your health and become depressed. Good luck!
There is a surgeon in Philadelphia @ Penn Hospital. His name is William C. Welch. I personally know 2 patients who had the surgery with him. I met them on a facebook support group for tarlov. He prefers not to be listed on the tarlov foundation site due to having enough patients. I'm sure Dr. Oaklander will tell you about him. I had the afgi done April 25, 2013 and got great results. Good Luck on your journey.
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