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Old 07-10-2015, 11:42 PM #81
Bridges Bridges is offline
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Sorry for the delay in responding to requests: Due to "technical issues", as in my computer crashing, I am somewhat behind.
Anybody wishing to contact me please send a "Private Message" through this forum. I can also be reached through the Tarlov Cyst Disease Foundation site. (I hope our moderator will allow this..?)

Trust me, there is hope, and for many a cure.
David
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Old 07-10-2015, 11:56 PM #82
Bridges Bridges is offline
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Jo*mar,
Thanks for the intervention! Yes, as a farmer, this is the busiest time of the year. And for me, it has been the most productive since coming on to this place twenty years ago.
I will take this opportunity to thank you for providing this forum for those seeking information regarding Tarlov/Perineural Cysts, their symptoms, and possible treatments. This "journey" has taken me to places I never imagined.....I now have the opportunity to put to use skills I learned over the last 45 years. Or is it 50?
The Tarlov Cyst Disease Foundation has made great progress in the past few years, and recent contributions to fund research will greatly enhance our ability to determine what factors lead to some individuals being susceptible to this disease.
"Bridges"
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Old 07-11-2015, 12:00 AM #83
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Private message me at this forum. I am available by phone, text, or e-mail.
"Bridges"
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Old 07-18-2015, 11:24 PM #84
larry1969 larry1969 is offline
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Default tarlov cyst

Quote:
Originally Posted by amy93stang View Post
I had surgery 12-5-2012 for Tarlov Cyst with Dr. Feigenbaum in Kansas City. I had 5 giant cyst in my sacral area. One was removed and 4 drained and wrapped with a bovine heart. If anyone has question email me.
I was just curious because I have tarlov cyst and have been suffering with severe pain for almost 3 years and just been getting jumped around I was wondering how the surgery when and how long you have until it comes back or does it?
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Old 07-19-2015, 11:13 PM #85
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Larry,
I had my surgery November 30, 2010, and I do not expect to have a reoccurrence of my symptoms. It is unknown if my cyst was "pre-existing", but it became symptomatic as a result of trauma to the spine, an impact injury.
My accident occurred on March 10, 2006, and I spent the next several years searching for a "cure". I had been told to "just accept that (you) will never recover from this ...." No, I wouldn't accept that. Slowly, radiologists, neurologists, urologists, and others in the medical community are beginning to accept that Tarlov/perineural cysts are not just an "incidental finding".
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Old 07-31-2015, 11:49 AM #86
Claudia Santelices Claudia Santelices is offline
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Default Hi & How are you feeling?

Hi Tomatogirl,
I hope you continue to recover from the surgery. Can you send us a few words about your progress? That is much appreciated. Have a peaceful and painless weekend!




Quote:
Originally Posted by bobiJ View Post
I have 2 Tarlov cysts, and waiting to be scheduled for surgery with Dr. Feigenbaum in Dallas. Long wait, about one month and did not get scheduled yet. Did surgery helped you? and how long was recovery time.
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Originally Posted by Tomatogirl View Post
Hi Folks-

Just had surgery with Dr. Feigenbaum in Dallas yesterday for small but multiple Tarlov cysts. (He also sees patients in Cypress.) Am now resting at the hospital. He found 8 cysts and definitely confirmed nerve compression. At least 5 were seen on imaging, but some turned out to be two cysts instead of one. He did laminectomy to treat the cysts and placed a dorsal polymer plate. Surgery took about 2.5 hours plus post op recovery. On waking the numbness I had in both feet is now gone!

Only have had some nausea, and normal surgical pain that is being decently controlled. Right now they have me restricted on movement to prevent spinal fluid leaks and they have started to progressively elevate my head today. So far so good.

The nursing care at Pine Creek Medical Center is excellent, better than what I've had at most places. The patient to nurse ratio is very low. My nurse has three patients under her care at the moment. The staff here also speak unprompted and highly of Dr. Feigenbaum's care and work to help people to receive appropriate care for Tarlov cysts and the like, many who have been misdiagnosed and undergone some difficult treatments. (One patient suffered an unnecessary vulvectomy BEFORE being helped by Dr. Feigenbaum.)

How some neurologists think that Tarlov cysts are all asymptomatic is absolutely beyond me.

For me, seeing Dr. Feigenbaum and having the surgery Is moving me in the right direction.

If anyone has questions on what I'm undergoing, please feel free to post or PM me.
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"Thanks for this!" says:
fmiyakaw (08-16-2015), Pakerbs (11-14-2019)
Old 08-04-2015, 07:09 PM #87
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Hi tomato girl. Can you please update us with your progress? How are things going?
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Old 08-12-2015, 06:43 AM #88
Claudia Santelices Claudia Santelices is offline
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Quote:
Originally Posted by Telvaker View Post
Hi tomato girl. Can you please update us with your progress? How are things going?
Hi Telvaker. Hope you are doing well. Three weeks ago I had a caudal epidural injection. It reduced the pain, but now I am dealing with some rectal pressure that only alleviates SOME when I lay down on my stomach. I have an appointment with dr. Feigenbaum September 24. Will be flying from Boston, just for the appointment. I have decided that If I am a candidate for the surgery, I will go ahead. I have received an incredible amount of support from Reta Honey-Hiers at the Tarlov Cyst Foundation. I will keep you posted. I would like to hear from you and other people as well. Be well!
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Old 10-29-2015, 07:21 PM #89
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Hi tomato girl
Just checking in. How are things going for you? My surgery date is November 11 so am anxious to know how you are
Any suggestions / recommendations??
I hope you are well
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Old 10-29-2015, 07:37 PM #90
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Telvaker,
all the very best to you for your surgery.

I remember how you were having such a difficult time with your doctors when you first came here to post.
Take care there!
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