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Old 01-16-2014, 03:18 PM #1
painintheazz painintheazz is offline
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Default Tarlov Cyst -New Memeber

My name is Suzanne I am a 47 year old who lives in Texas! Looking for some people who have seen Dr. F with good outcomes . Seems I have read enough bad outcomes that I want to run and hide. The surgery is not a choice at this point as my symptoms are worsening, so I wonder if there is encouragement or am I delusional.

Suzanne from Texas
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Old 01-16-2014, 05:29 PM #2
maryjane11 maryjane11 is offline
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Originally Posted by painintheazz View Post
My name is Suzanne I am a 47 year old who lives in Texas! Looking for some people who have seen Dr. F with good outcomes . Seems I have read enough bad outcomes that I want to run and hide. The surgery is not a choice at this point as my symptoms are worsening, so I wonder if there is encouragement or am I delusional.

Suzanne from Texas
I have had TC surgery successfully. Dr. F in general has a good reputation but takes on hard cases that might not always have the best outcomes. I had my surgery done at an ivy league institution and love the surgeon William Welch MD. Highly recommend that you call him. He the head of neurosurgery at U of Penn and his asst is Christina. He operated on another person from the TC forum with a successful outcome as well. it is worth your while to consult with him.i think his # is 215 829 6700 but would not swear to it. that is just from memory.
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Old 01-17-2014, 12:32 AM #3
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Wink Nice to meet you!!


Suzanne,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

It is great to see you have found the Tarlov Cyst. There you will find some wonderful fellow friends to assistant you.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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"Thanks for this!" says:
painintheazz (01-19-2014)
Old 01-17-2014, 01:25 AM #4
painintheazz painintheazz is offline
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Originally Posted by maryjane11 View Post
I have had TC surgery successfully. Dr. F in general has a good reputation but takes on hard cases that might not always have the best outcomes. I had my surgery done at an ivy league institution and love the surgeon William Welch MD. Highly recommend that you call him. He the head of neurosurgery at U of Penn and his asst is Christina. He operated on another person from the TC forum with a successful outcome as well. it is worth your while to consult with him.i think his # is 215 829 6700 but would not swear to it. that is just from memory.
Oh Thank God there is hope! Can you tell me what you had done and why you believe your surgery outcome was successful? I have 6 cysts at S2 with mostly burning/aching sensation to buttock and leg. Just this week notice urination flow stream weaker and delayed.

So far I have read lots of success in the material of research Dr. Welch uses to teach. Interesting to read the results; they look very positive but you just don't hear about it here in this forum. I appreciate your post very much.

Suzanne from Texas
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Old 01-17-2014, 07:43 PM #5
painintheazz painintheazz is offline
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Originally Posted by maryjane11 View Post
I have had TC surgery successfully. Dr. F in general has a good reputation but takes on hard cases that might not always have the best outcomes. I had my surgery done at an ivy league institution and love the surgeon William Welch MD. Highly recommend that you call him. He the head of neurosurgery at U of Penn and his asst is Christina. He operated on another person from the TC forum with a successful outcome as well. it is worth your while to consult with him.i think his # is 215 829 6700 but would not swear to it. that is just from memory.

Mary Jane, I did call today. Thank you for your reply. Christina said that I first need to have had either aspiration or fibrin glue procedures first that were unsuccessful before he would operate on them and said that they actually take them out; although I explained that they are nerves and how is the nerve removed she kept repeating that it was a cyst around the nerve and it was removed and replaced with a muscle flap. I didn't go any further. Can you enlighten me more how this went for you?
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Old 01-19-2014, 05:36 PM #6
painintheazz painintheazz is offline
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[QUOTE=maryjane11;1043998]I have had TC surgery successfully. Dr. F in general has a good reputation but takes on hard cases that might not always have the best outcomes. I had my surgery done at an ivy league institution and love the surgeon William Welch MD. Highly recommend that you call him. He the head of neurosurgery at U of Penn and his asst is Christina. He operated on another person from the TC forum with a successful outcome as well. it is worth your while to consult with him.i think his # is 215 829 6700

Thank you,

I called Dr. Welch's office Friday and spoke with Christina. She said I had to first try conservative treatment (aspiration or fibrin glue) before he would do surgery on me. I am confused as she explained he is only surgeon who removes the cyst. I said it is a NERVE , how do you remove it. She explained and made no sense but referred me to Dr. Long in Maryland. Looks like that door is closed for now and will continue with Dr. F for now. Can you tell how me about your surgery and did you have to go through this process as well?
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Old 01-23-2014, 03:49 PM #7
hevnw8s hevnw8s is offline
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[QUOTE=painintheazz;1044602]
Quote:
Originally Posted by maryjane11 View Post
I have had TC surgery successfully. Dr. F in general has a good reputation but takes on hard cases that might not always have the best outcomes. I had my surgery done at an ivy league institution and love the surgeon William Welch MD. Highly recommend that you call him. He the head of neurosurgery at U of Penn and his asst is Christina. He operated on another person from the TC forum with a successful outcome as well. it is worth your while to consult with him.i think his # is 215 829 6700

Thank you,

I called Dr. Welch's office Friday and spoke with Christina. She said I had to first try conservative treatment (aspiration or fibrin glue) before he would do surgery on me. I am confused as she explained he is only surgeon who removes the cyst. I said it is a NERVE , how do you remove it. She explained and made no sense but referred me to Dr. Long in Maryland. Looks like that door is closed for now and will continue with Dr. F for now. Can you tell how me about your surgery and did you have to go through this process as well?
Suzanne,

I live in Arizona and had surgery with Dr. F on November 6 2013. I am recovering well and glad I had the surgery. I had 44 cysts that had been compressing my nerves for 3 years. I am able to walk 2 miles a day, clean the house and do some of the smaller things I couldn't do before. There are times I try to do too much and I start to hurt. It will knock me down for a day or two, but with rest I'm ok. There is another woman who lives here in Arizona that I talk to every week. She is 9 months post op and she in now starting to do some light jogging. She goes to the gym twice a week and does a light workout. I would like to think these are small successes. It takes awhile for nerves to regenerate so it's a slow recovery.

I heard Dr Welch is good as well but I have not consulted with him.
Dr. F doesn't remove the cysts since they are attached by nerve endings. He opens them up, drains them, plugs the hole with a small amount of your own body fat and then wraps them with bovine skin so they do not refill.

Hope this helps.
Kim
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Old 01-24-2014, 10:44 AM #8
gablog gablog is offline
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Quote:
Originally Posted by maryjane11 View Post
I have had TC surgery successfully. Dr. F in general has a good reputation but takes on hard cases that might not always have the best outcomes. I had my surgery done at an ivy league institution and love the surgeon William Welch MD. Highly recommend that you call him. He the head of neurosurgery at U of Penn and his asst is Christina. He operated on another person from the TC forum with a successful outcome as well. it is worth your while to consult with him.i think his # is 215 829 6700 but would not swear to it. that is just from memory.
I had tc surgery with welch 2011. I did very well I know you do have to be a patient of dr long and he refers us to welch. I know don't have to do FGI to do surgery with welch. We just have to see dr long. He will see what kind of cyst we have. Dr welch is such a nice man! His assistant Diane is such a kind nice woman. She is so good to dr Welch's patients. I love them!! They helped me so much. Post op care is great too!!

I believe always following that gut feeling.!!
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