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Date Joined Sep 2009
Total Posts : 1
Posted 9/2/2009 12:26 PM (GMT -6)
I had surgery for my tarlov cyst and now I have permanent numbness of my privates due to nerve damage. It has ruined my life. My husband and I have only been married for 5 years. You can imagine what this has done to my marriage. I wish I had never would have had this done. I would have rather lived with the pain if I had known this was going to happen to me. I would like to know if others have had this happen to them. I say if it's not a critical situation, DON'T HAVE SURGERY!!!!!!!
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Date Joined Nov 2007
Total Posts : 6795
Posted 9/2/2009 1:28 PM (GMT -6)
Welcome to the chronic pain forum of Healing Well. I am so sorry for what you have had happen to you. This indeed does sound like a life changing event, but don't give up hope. Have you asked your doctor about
any chance of regenerating some of those nerves?
I've not had this happen, but it seems I remember reading somewhere that there was some type of treatment that attempted to regenerate some of the nerves and feeling in that area. Sometimes if one nerve is damaged, there is more than one nerve that is serving a region in our body and those other nerves over time might return some feeling.
I wish I could remember where I read this, but maybe someone else has heard of it. If I would search the internet for anyone (maybe even a teaching hospital) who is specializing in this. Perhaps you GYN might know some information.
Don't give up trying to get some feeling back.
I have to confess I don't know what a tarlov cyst is. Could you explain it (if it's not too private or graphic)?
Your point that surgery is only for critical situations is well taken.
This is a great support group, and maybe we can help you with that.
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Pete trips again!
Date Joined Nov 2006
Total Posts : 1899
Posted 9/2/2009 8:55 PM (GMT -6)
I was told that I have a tarlov cyst on my spinal cord after my last lumbar MRI. I had never heard of it before and was told that if my symptoms got too bad and it grew larger that surgery might be needed. You must have had pretty bad symptoms if you had surgery. If you don't mind me asking, how large did it get and what symptoms did you get?
On another note, about
your loss of feeling, I know something about
this also as it happens to many guys after prostate cancer surgery. I did lose some sensation and feeling in my private area after a radical prostatectomy but not nearly as bad as some. The thing is, sometimes it takes a long time for the nerves to settle down from a trauma like that, even after years some feeling may return!! I pray that this might be the case w/ you. How long ago was your surgery? Swelling may have to go down before feeling returns if it was reciently. Did your dr. tell you it was perminant? Maybe get another opinion or see a neurologist before you give up.
I hope the best for you, please stick around as there are many good people here and so much support! Sorry to have to meet you like this but I'm really glad you posted!
My name is Pete and I'd like to welcome you to our family.
Keep up the HOPE!!!
Your new friend>
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections once a month. 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, Joseph is on the aircraft carrier USS John Stennis back in Bremerton, Wa. after 8 mo. deployment! and Pete Jr. is on The Asault Ship USS Bataan "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops!
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Date Joined Feb 2009
Total Posts : 3667
Posted 9/2/2009 9:22 PM (GMT -6)
Welcome to the HealingWell Chronic Pain Forum, you know I don't know much about
the Tarlov cyst so I went an Googled it. And there are allot of excellent web sites that have allot of good information about
it! Here is one of the sites that you may find interesting and help full!: http://www.tarlovcyst.org/index.php?option=com_frontpage&Itemid=1
I am sorry that this has happened to to you, I can only try and imagine the pain and anguish that you must have! I do wish you well, but please know that there are allot of very caring and compassionate people here at this site, that will listen and help you in anyway that we can!
Again I Welcome you and hope that things work out for you!
Moderator Chronic Pain
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--
Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)
Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV
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