my story

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my story

Postby sufferingman » Sun Mar 30, 2014 2:10 pm

am suffering from pain in coccyx 12 yrs back after trauma with numbness and weakness in genetalia that pain occur during sitting only i was search every where no justefcation up to contact dr tibet in turkey by email he reply me nicely up to join him and reguest invest with emages then encourge me for his laproscopic surgey
after surgery i was imbroved little then become constant new pain in gentalia and rectal area with imbrove of coccgeal pain due to cutting of sacrospinous ligament i was contact him several time his attitude changed completly no explanition of all this complication and he answer me by psycohlogical cause and suggest o chronic medicatoin like gabbpentin am not doing this surgery to get new pain or to become in chronic medication before surgery i was give him ct scan show my coccyx dislocated
now i dont know what next step i feel that wrong decition of surgery increase my problem i don,t know what i can do ist real pudendal nerve compression or pelvic floor dysfunction due to coccydenia and what plan for treatment new surgrey or treatment of coccydenia can help me by your experince
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Re: my story

Postby mjdoh » Mon Mar 31, 2014 1:37 am

Hi, I just wanted to reply to you to say how sorry I am for your suffering. I don't know how to advise you with your treatment as to what you should do but I just want to say I am disgusted that Dr. Tibet behaved so badly towards you after persuading you to have surgery with him. It is so difficult to cope with this condition and we patients have to realize that doctors just don't have the answers for us yet. It is scary how arrogant (and greedy) some doctors are. We put our faith in them and they don't seem to give a damn about their hypocratic oath of "first do no harm". I am disappointed and sorry for you that your surgery was a waste of time. It just makes it harder to deal with to have your hopes dashed and a doctor who is not supportive in our care. You are right to move on from such an uncaring man and hopefully find a good pain management doctor while you sort out what to do next. many of us take medication long term with good effects and there are many treatments that do give some relief besides resorting to surgery. A good PELVIC physiotherapist should be able to tell you if you have pelvic floor dysfunction (PFD) so that might be a good place to start. Whatever you decide to do, I find it is most helpful to 'be around' other people who understand what you are going through. There are several pudendal support groups on facebook where there is a good sharing of information. good luck my friend. MJ
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Re: my story

Postby Violet M » Mon Mar 31, 2014 5:48 am

Sorry to hear you are still suffering. How long has it been since your surgery with Dr. Tibet? It can take a long time to recovery from PNE surgery.

I agree with MJ that trying PT might be worth trying. Somtimes the coccyx can be moved back into place although I would only go to someone who uses a gentle approach and has experience with this. If you feel like you are having pelvic instability from having ligaments cut you may want to try prolotherapy. It was helpful for me.

Some people have had relief from coccydynia with ganglion impar blocks. You can read the newsletter articles on the pudendalhope.org homepage for more information on these types of blocks. If a ganglion impar block is successful, it can be followed up with a ganglion impar block that lasts longer using phenol.

Other options might be to try a neurostimulator or pain pump. Unfortunately, there are no guarantees with any type of treatments that are used for pelvic/genital pain.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: my story

Postby sufferingman » Mon Mar 31, 2014 8:14 pm

MAJDOH thankyou really am confused my life become very depressent

violnet i know no gurrante but at least doctor he doing surgery should be orianted about all steps and complication suspected we are not rat for experince and increaseing record of surgery when some one taling of 95% success of his procedure should have full information of all steps of surgery not only talking in media

you right i think if i was treat my coccyx from begining better than this surgery at least this manibulation non invasive no side effect but now i dont no if i did this what result because all ready tention area moved from coccyx to perneal area
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Re: my story

Postby molly » Wed Apr 02, 2014 3:03 pm

I,m so sorry also that your pain has been made worse.i also had surgery with Dr Tibet, and have made no progress or at least very little, but at least I am no worse.

I agree with the others, perhaps a full evaluation fro a good physio would be helpful.


I hope you can find some relief, and no I do not think Dr Tibets,s are anywhere near what he claims them to be.

Regards Molly
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