Surgery Update - There is hope out there

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n4061
Posts: 12
Joined: Sat Sep 25, 2010 5:08 am

Surgery Update - There is hope out there

Post by n4061 »

Hello, it has been well over six months since I posted and felt it was time to provide an update on Maria. This week was her one year anniversary of her fourth Pudendal Nerve surgery and we are cautiously optimistic we finally got it right. I can not say enough about the determination by Dr. Filler who would not give up on Maria (we would not let him) despite the complexity of her case and unfortunate circumstances of earlier surgeries. We now find ourselves getting closer to understanding her Sacral pain which has had her in the ER more than once this year with pain. No one would have believed that Maria could have had two unusual injuries at the same time without incurring an accident or direct physical incident.

For those battling the insurance companies (as we have) let me provide a little advise and advise that you keep a daily log of everything about your condition and dealings with insurance companies. It will become your best offense when trying to obtain coverage for surgeries. My files are over eight inches thick and we even had to file a complaint with the state of California against our insurance company for the last surgery to get reimbursed. We used the actions by the insurance company against them to win. You have to be persistent and look for all outside assistance available to be successful but you can win out. Remember, you know more about PN then the insurance companies and most doctors. While I can not help out everyone, I will offer as much assistance as I can to those who may have a question about the strategy we used to continue to receive out of plan referrals.

Bottom line for everyone suffering from this terrible condition is that there is hope! I lost count of the nights spent holding Maria as she cried out with neuropathic pain thinking how unfair this was as we both prayed to god asking for help, but in the end god got us both through this hell. Hang in there and keep up the fight.

John T. :)
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Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Surgery Update - There is hope out there

Post by Violet M »

Hi John,

That is wonderful news that Maria is doing better and that you are optimistic about her recovery! Thanks for coming back to report and to give others hope.

Wishing you and Maria all the best ;)

Violet M
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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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Surgery Update - There is hope out there

Post by helenlegs 11 »

Echoing Violets message John, hope things go very well for recovery.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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