Health Organization for Pudendal Education

Wishing you well, Matt - and counting the days on your behalf. I do hope this works for you!

From Wadsworth Ohio , my wife and I thank you Calluna!

My condition is continually worsening month after month, and our lives are crumbling before our our eyes. We pray it gives some relief and allows me to function as a husband and father again soon. I want my life back

Matt

Best wishes to you Matt. Will say a few prayers for you that day and hope to hear good news from you.

Violet

Thanks for the well wishes Violet!

I recall that you recommended I slow down and explore my options FIRST before jumping up on the implant table. That was back in January.. Its hard to believe almost 3 months have passed since I first posted here and you and so many others gave me advice and support.

I saw an Interventional Radiologist and a Hernia "expert" since then, and both told me that there was no problem getting an SCS and that I would always be a candidate for surgery. MRI's of course would be out the question, but quite frankly I have had 3 already and odds are I wont need another again... I also found out that Dr Hibner does PNE surgery on SCS implant patients. These doctors also told me that the implants are never permanent. If and when a new surgical procedure comes out that offers reasonable success rates than its reversable.


I took this info, and when I combined it with the continued worsening pain and my lack of production at work ( sales manager), I saw it as a great opportunity to get back on track AND still pursue a true PNE diagnosis. I say "true" because my Pain Specialist has diagnosed me with PN based off symptoms and a Pudendal Block. He also feels my MRI shows some things that are " peculiar". But the million dollar question is whats causing it? Well, according to these experts, an SCS implant wont prohibit me from finding out...

The goal now is to feel comfortable again, and escape this inhumane pain and misery thats stopping me from being myself. I would also like to taper down off the 150 mg of Opiates I consume on a daily basis along with the 90 mg of Cymbalta, the 2400 mg of Gabapentin, and the 300mg of Topimax. All of which are barely keeping me standing.... The point being they are barely working at very high amounts, I cant think straight on them, and I wouldnt doubt it if they are ravaging my liver, brain, kidneys and god knows what else.

I havent had sex with my wife in 8 months.... Talk about a depressing topic. Having an orgasm puts pressure on the nerve apparently and the next day I suffer agonizing pain in my prostate. I cant continue on like this anymore - the physchological impact is crushing. My wife has been great about it, but its destroying my self confidence and making me have feelings of jealousy and paranoia that I never had before.

That all being said, you got me thinking Violet... I needed to justify this procedure to myself. My family needed me to jusify it as well. I put some of my thoughts up here so that hopefully I can help someone make a decision - one way or the other. Quite frankly, the basis for my decision might be completely flawed. But, all that matters is that I am good with it!

Heres to metal rods shoved in my back!


Matt

Matt,
I,m rooting for you as I,m sure we all are. This is a dreadful condition and it does indeed rob you of almost everything.

I,ll say a prayer for you on friday and do let us know as soon as you are able to.

Kind regards,

Molly

Happy Easter to all of you -

I have to keep this short but I had the SCS implanted late Friday.. It was a difficult procedure and my doctors made many attempts to place the all important leads in the best possible areas to cover my pain areas.. Unfortunately, deep rectal pain was not able to be addressed due to me having a bad reaction to a lead placed in the sacrum. They had to go with an alternate more typical implant after all the work they did cuadally, hence a long drawn out surgery.

I have been in bed since then with a very sore back. They told me that I received more than twice the amount of treatment than the typical implant patient. Therefore I would be in for a bit more recovery. That being said its very hard for me right now to guage if this will work for me. My doctor is hoping that I still get some relief rectally by what he referd to as parasthesia or the referral of stimulation from surrounding tissue. Its kind of complex and I have many more questions for the doctors.

I am scheduled for a reprogramming tomorrow where they will try and get me more appropriate coverage. I will check back in Tuesday to give my final impresssion and if I will proceed with the permanent implant.

I am trying to stay positive and remain hopeful we can get better results tomorrow. Cheers to all -

Happy Easter

Matt

Wow, Matt, I'm really sorry to hear it didn't go a bit more smoothly with better results initially. I hope tomorrow they will be able to sort things out so that you can get the pain relief you need so badly.

Violet

Violet speaks for me too. Wishing you well, Matt, and very much hoping that you get improved pain relief.

Hope that you have something better to report after the reprogramming.
fingers crossed.
Take care,
Helen

HiMatt,
I hope they can sneak in some help for the rectal pain (as another person with that I know how it feels, also getting relief is wonderful - my acupunturist finally figured it out!). Next I have to try getting off the drugs so need to look up prior withdrawal info but enough of me. Good luck today and wishing better tomorrow for you.
Janet