Neurostimulation Dr. in Ohio for PN patients

Read about the latest Technology, which Doctors are performing this technique and the advantages and disadvantages of this cutting edge pain management therapy.
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helenlegs 11
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Re: Neurostimulation Dr. in Ohio for PN patients

Post by helenlegs 11 »

My husband has seen the Cure twice, brilliant the 1st time and not the second. He didn't say not! last time was 2009. Everyone should have a little bit of Led Zepplin in their lives. . . . I used to be a Deep Purple fan and can remember dancing to black knight when I was 14 at the village hall hop in my hotpants and skinny rib stripey top. My fav around then was Free, 'Alright now', it's a . . . . and a bit of T Rex, although I have to say I LOVE a bit of soul and Motown. Just like music tbh, but just LOVE dancing :) (and clothes) Another possibly little known English band 'The Groundhogs' were very popular then too (with us anyway) 'cherry red'? poss the most melodic song they did. My husband is a 'mosher' (or likes to think he is) no hair tho' :) his fav band is AC/DC although he is of 'punk' era, Clash, Pistols, Stiff little fingers; I precede him ;)

The neurostimulation sounds extremely interesting, although I don't understand a bit of it really. Look forward to your up dates later on but take it easy in the mean time. Think you need to listen to some Celine Dion. . . . . AArrrgh!
Helen
Last edited by helenlegs 11 on Sat Apr 06, 2013 6:38 pm, edited 1 time in total.
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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Meliora
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Re: Neurostimulation Dr. in Ohio for PN patients

Post by Meliora »

Helen, I now have The Clash stuck in my head! HeeHee! :) I always liked punk, Zeppelin, etc. I miss days of music and fun! Who invited that crummy PN to the party??? Next time he/she is surely off the guest list!

Thunderman, I hate that you are back in turmoil. I have been in the trenches as well lately. Not much fun! April buzz off, where is May, right! I am actually waiting for May myself. In regards to TG surgery with Hibner, I was to be having the "frontal approach" to surgery. I am having to wait to clear up some other health problems though. I found a doctor by me (through search) that just implanted his first BS SCS Spectra 32. I will be calling him to find out more. Your doctor sounds awesome, I am so glad you found him. I am sorry I missed in your post where you talked about spasms....glad the SCS masked those. Mine can get pretty intense. I live on baclofen supp. to sleep at night or for longer car rides....my most expensive drug believe it or not. My compounding pharmamcy is not cheap. :(
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Thunderman69
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Joined: Wed Sep 26, 2012 1:56 am

Re: Neurostimulation Dr. in Ohio for PN patients

Post by Thunderman69 »

How in the hell could I have forgotten the CURE??!! One of my favorite bands of ALL TIME. "Pictures of You" has got to be one of the best songs ever written IMHO :D I like me some TRex as well.. and "All right now" is pure gold (one of the first guitar licks I ever learned!) That said - If I could wrap all that Motown music up and send it to all you guys across the Big Pond I would! ...and Celine Dion? Your killing me Helen - I'd rather that English lady Boyle or whatever her name is LOL. Like I said, my musical tastes gravitate towards melodic rock (due to the heavy influence on lead guitar). I guess I should broaden my horizons though... A close family friend/cousin of mine is the lead guitarist for Taylor Swift (Paul Sidoti). We grew up listening to what we called here in the States "the invasion of Britsh Heavy Metal". Although we had many influences here in the states and elsewere (AC/DC, Kiss, Guns and Roses) the english metal predominated. Obviously, Taylor Swift is a far cry from that type of music!! I have learned to like me some Southern Rock/Country - check out a band called Blackberry Smoke sometime (thats good American rock and roll right there!)...

Meloria, have you communicated with JMIL(Jen) yet? She had surgery from a colleague of Hibner's named Dr Conway. She is the toughest girl I ever talked to, and her story is absolutely staggering and heart wrenching. She is also an absolute wealth of knowledge - she could easily run circles around a good 90% of the medical "professionals" I have met! Anyway - she had the surgery like 9 months ago so if you are signing up for it, I would definately reach out to her regarding her experience. I hope you get the other health issues resolved.. I am sorry to hear you have additional issues to deal with. I tell you when it rains it pours sometimes doesnt it? I know that you are tough and well resarched as well so I am confident that you will get yourself cured at some point! I will keep you in my prayers -

Matt
Symptoms started officially on Feb 21, 2012 w/no known cause! Multiple pain flares, ER Visits and tests (had 3T MRI in New York by Hollis Potter). Inconclusive MRI, but finally diagnosed with PN in 2013. Boston Scientific SCS implant surgery done on May 3, 2013.. SCS Implant no longer effective in relieving pain. Condition has deteriorated rapidly since a fall off a ladder in March 2014 (suffered trimalleolar fracture of right ankle). Surgery Consult with Dr. Conway scheduled for June 4. 2015.
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helenlegs 11
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Re: Neurostimulation Dr. in Ohio for PN patients

Post by helenlegs 11 »

Meliora wrote:Helen, I now have The Clash stuck in my head! HeeHee! I always liked punk, Zeppelin, etc. I miss days of music and fun! Who invited that crummy PN to the party??? Next time he/she is surely off the guest list!
In a "Should I stay or should I go now" kind of way :) Erm excuse us! there's the door. . . . . . . Bye now ;)
Let me know when that tune stops going round your head :) Both of you ;)
H x
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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Meliora
Posts: 109
Joined: Wed Jun 20, 2012 10:54 pm

Re: Neurostimulation Dr. in Ohio for PN patients

Post by Meliora »

(Helen) This indecision's bugging me, If you don't want me set me free, exactly who'm I'm supposed to be, don't you know which clothes even fit me? Come on and let me know, should I cool it or should I blow?
Okay....so it's not exactly about PN...but what a good distraction! There should be a PN song distraction page :)

Thunderman, if I had a dollar for everytime I had listened to The Cure, I would be quite wealthy! As for crummy PN and everything else...yes, when it rains it pours. This last year was nothing but that and it has poured into this one. UGH! BUT....I am working on changing things, I hope it works out. I have not talked with JMIL - Jen, but should, I know she must be a wealth of knowledge. I have talked with Dr. Conway and think he is an excellent doctor. I like the frontal approach that Hibner is offering, but I do not know yet what I need. The block Hibner gave me did numb most of my pain areas, but my number one pain area did not go numb completely. I don't know if that means another surgery technique will be needed or what. I don't really want TG to be honest, but then again who really "wants" to undergo sugery in general (try, get me out of this dreaded pain mess!)

Helen & Thunderman may music help you NOT have to think about PN tonight, but help you find some enjoyment!
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Violet M
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Re: Neurostimulation Dr. in Ohio for PN patients

Post by Violet M »

Hey Matt, glad to hear you will be getting some pain relief soon. This is great news that the neurostimulator trial worked for you!

I don't know if that sharp pain you are feeling is in the area of the PN. I know I had a knife-like pain at one specific spot that was the PN but I never had rectal pain, probably due to a difference in anatomy since the rectal nerve comes off in different places in different people.

Take care,

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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Thunderman69
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Joined: Wed Sep 26, 2012 1:56 am

Re: Neurostimulation Dr. in Ohio for PN patients

Post by Thunderman69 »

Thanks Violet!!

The sharp pain in the rectum has subsided thanfully! I was having many weird electric like, sharp zaps the day after the leads were removed so I think it was all due to the pelvic nerves being electrically stimulated and then removing that stimulation. The nerves went Cold Turkey in a sense.. :D

I hope all is going well for you too Violet!


Matt
Symptoms started officially on Feb 21, 2012 w/no known cause! Multiple pain flares, ER Visits and tests (had 3T MRI in New York by Hollis Potter). Inconclusive MRI, but finally diagnosed with PN in 2013. Boston Scientific SCS implant surgery done on May 3, 2013.. SCS Implant no longer effective in relieving pain. Condition has deteriorated rapidly since a fall off a ladder in March 2014 (suffered trimalleolar fracture of right ankle). Surgery Consult with Dr. Conway scheduled for June 4. 2015.
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Rosemary
Posts: 309
Joined: Mon Dec 31, 2012 5:40 pm

Re: Neurostimulation Dr. in Ohio for PN patients

Post by Rosemary »

Meliora wrote: There should be a PN song distraction page :)

!
Oooooooooooooooo yes please - would the moderators allow a Song distraction thread in the Social/Fun section - would links to Utube music be allowed ?

Rosemary x
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paulette
Posts: 184
Joined: Sun Sep 19, 2010 6:13 pm

Re: Neurostimulation Dr. in Ohio for PN patients

Post by paulette »

Matt,
I am considering a neurostimulator as well. April 12, I have to undergo a psych. evaluation as a requirement for Medicare. My neurosurgeon plans to put leads in the spine at T8 and also caudally to hopefully hit the perineum. The whole procedure is complicated, because my spine is fused from T-9 to S-1. You mentioned having several MRI's. Were any of them from Dr. Potter? I am scheduled to have a Potter MRI on April 17 just to see if there is anything significant going on in there before having the neurostim trial. For instance, I could like to know if the way my spine is fused is stretching muscles and ligaments, causing the pudendal and sciatic nerves to be compressed. The problem is, I am in so much pain, I don't know if I can make the trip. Just wondered if you have any thoughts on this. Thanks! Paulette
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Meliora
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Re: Neurostimulation Dr. in Ohio for PN patients

Post by Meliora »

Rosermary, you made me smile! :)

Paulette, I think very highly of Dr. Potter. She is an incredibly kind and smart lady. I had her protocol sent to a radiologist local to me, and was performed on a 3T machine. Dr. Potter really tried to help me out! The MRI did show a few things, but so far has not really helped with solving my problem. I would still have an MRI in general to check on any problems, but to be honest "I" probably would not travel for one at this point. My husband says, the doctors probably will not know what is really going on with me, until they see in surgery. I tend to agree. That being said, you have had spinal fusion, so an MRI may show you exactly what you need to know. Many others have found Dr. Potter's MRI quite helpful. There seems to be PN doctors who highly regard MRI and those who think it does not show enough. If you think it can help, I would say go for it.

I would suggest buying an extra plane ticket for travel. I could not have made it otherwise. My husband and I take all three seats. I lay my head in his lap (brought a pillow) and then lay on my side for the trip. I also bring vaginal baclofen and take something for pain.

I am looking into neurostim as well for now. I have to postpone PN treatment and need something! I wish you the best on your decisions and pain relief ahead!
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