Health Organization for Pudendal Education

Hi All -

I just wanted to pass along some information that might be useful to members that are interested in neurostimulation and are able to travel to the Akron, Ohio area.

I have been researching possibly having a Boson Scientific neurostim system implanted and was given a referral to a doctor that has had great success with implants in PN patients. The referral came from a PA at the Cleveland Clinic who used to work with this doctor. His name is Dr. Samer Narouze. He is with the Center for Pain Medicine in Cuyahoga Falls Ohio (just outside of Akron).. The woman I spoke with said she personally witnessed several patients have very good success with his implants, and she went as far as saying that one particular woman had almost 100% relief for nearly 8 years until she had to come back to have the leads realigned on the implant.

I am waiting for my appointment with him to discuss my options, and will check back in to update on my personal progress. I have made my mind up that I will be having this procedure done as soon as possible. My personal pain mgmt doctor also performs this surgery (however he has never done it on a PN patient) and is ready to do it it for me so I am going to see this person as a second opinion.

Update : After researching more, I decided to have Dr Henry Vucetic of Fairlawn Ohio do my procedure. Dr Vucetic was one of 5 doctors in the USA approved this past January to implant the new Boston Scientific Spectra SCS. He was trained by Dr Hayek of UH health systems who sits on the Board of Directors of Boston Scientific.

I trialed the Spectra 32 lead system between March 29th and April 5th. Please see end of thread for my experience.

Thanks, TM. I wish you luck with this procedure if you decide to go ahead with it.

Violet

Thank you very much Violet!

We all are faced with challenging decisions in our struggle with this crippling diseease. Unfortunately , as you are well aware, we are also left with less than optimal choices as far as treatment. I dont have the time or the resources to travel to Istanbul Turkey or even Houston Texas. And even if I did I still dont like the odds of recovery success after being cut up. My impression is after pouring over volumes of papers is that the more invasive the surgery the lower the overall benefits of nerve surgery. At least with SCS its a minimally invasive outpatient surgery that does not compromise any nerve/tissue structures and is actually reversable in many cases. In fact, I get to trial it for 10 days before making a final commitment to it. So, for me this ended up being the best route to giving me a shot at some sort of a life back. Right now I am pretty much in pain 24/7 and cant work... About to lose my job. I gotta get back to life...
I am praying this helps .. And will keep posting on my progress so others may benefit from this information as well.

TM

Good luck with the trial thunderman. I hope it works for you. Thanks for updating us here.
Take care,
Helen

Thanks Helen! Its much appreciated.

Just a quick update. I have instead chosen my current pain specialist Dr. Henry Vucetic in Fairlawn, Ohio to do the procedure. Besides being my Pain Management Specialist he also implants the SCS devices as well. As I have mentioned in prior posts in the Welcome thread, he is one of only a handful of doctors in the States that has clearance from Boston Scientific to implant the new Precision Spectra 32 lead system that just got FDA approval.

I seriously considered the other doctor due to his experience with PN'ers.. but after some more due diligance, and thinking about it over the weekend I decided I would be more comfortable with my current doctor. I am quite loyal to him as he has been great throughout my whole ordea with this terrible disease ... the man treats me respectfully.. answers all my questions with honesty (and even on the weekends over email).. and is a very caring and compassionate person. He also has the trust and backing of Boston Scientific to be one of only a select few people to offer this system. Also, when they do the implant they send one of their reps in to assist him in the set up of the leads to insure quality pain coverage so I know this is a team effort as well. Plus, he has been discussing my case with his colleagues/mentors, one of which is the chief of pelvic pain at UH Case Medical Center (Dr Hayek ) and they feel comfortable they can knock out a good portion of my pain. Lets hope they are right! I willl be checking back in a couple weeks with some more info.

TM

Sounds like you've done your research, TM. Keeping my fingers crossed for you.

Violet

Thanks Violet
I have slowed down a little bit with this right now. I have a little more due diligence left before I pull the trigger. I want to see a hernia surgeon for a consultation first. I read some fascinating stuff from Donstore and FreidrichLo on here over last week and they got my wheels turning. Apparently there is a CT or MRI that can be done that shows the bowels in motion (they have you push and bare down as if your having a bowel movement) that shows the hernias and ruptures much better ... and these create symptoms nearly identical to PN .. Its best to get all the testing out of the way while I still can so I will be setting up a consult tomorrow regarding inguinal and rectal hernias. My mind is made up to get the Nuerostim barring some incredible discovery soon..

MS

From the UK I sincerely wish you well and hope this will hope to relieve yoyr suffering.

Good luck and do keep in touch this is how we are all learning and are helped in making monumental decisions.

Kind regards

Molly

Hi Molly!

Looks like its finally going to happen. I am doing a trial run of the new Spectra SCS in 2 weeks! It will be implanted by my pain specialist and tested with the aid of a Boston Scientific rep. She has taken pictures from other pudendal pain cases and diagrammed the lead placements to optimize the pain relief. We are hopeful that this will take at least 50-60% of my pain away. I will cry like a baby if we can get that kind of relief...
Also - i met with a colorectal surgeon that told me that he does surgery on patients with SCS implants all the time and that I should get the implant and then feel free to pursue pne surgery later on if I so choose to... Basically, having an SCS does NOT prohibit you from surgery and many other tests. Its true that you cant do an MRI but in my case I dont care since I already had 3 of them in the last year! Anyways, I hope to be back here in a couple weeks with lots of good news..

Cheers !

Matt

I finally got insurance approval for the SCS .. Friday March 29th is the big day. Boston Scientific will be assisting my doctor in the trial of the new Spectra system., and I will be updating here as soon as I get out of surgery.


MS