Ouch Introduction PN Sufferer for 6+ Years

[Fawn Reeves]

Hi. My name is Fawn and I have been suffering with PN for six years. It took 18 doctors and a $120K week stay in the hospital to finally come to this conclusion.
History:
- had four pain different kinds of pain blocks as close to the pudendal nerve as the doctor could get pain came back when medicine wore off, helped prove diagnosis
-had an experimental interstitial insert (Medtronic) battery was inserted in buttocks and leads went around and to the pudendal nerve. It was unsuccessful and I think faulty because it would zap me if I had it on and went through electronic doors. Same frequency I suppose. I turned it off and finally had it removed (I had to go to five surgeons before one agreed because it had notches and they did not want to do more harm than good). I had it inserted by Dr. Peters in Michigan but moved to Colorado and could not afford to go back). It was so new at the time I was handed the device, vague instructions and left on my own. I hear they are doing a more organized controlled study but I had it with the device.
-the PN has affected my urethra, in that I have to cath (use a catheter) every day. At first I was retaining so much urine I had to wear a Foley bag. It was a nightmare. Now I am used to cathing.
-I am now, agai, in physical therapy with a wonderful lady who seems to be knowledgable. When this first appeared I had 30 visits which did not help at the time but did confirm. I would like to stick with this but is there a special site or information I can print out for her as to how to work on my PN?
-I have been on opiates almost the whole time. I have to lay on my side or stand, sitting still hurts. I get flareups where I am forced to take all my medicine. My husband does not like me anymore.
That is about it. I had to present doctors with most of the information I could get online at the time, still no one knows for sure. I tried all the neurological drugs, expensive custom suppositories. The pain doctor wants to put in a different Medtronic device at the spine. I don't want to.
Nice meeting you all. I will post my question about PT on a different topic. This has been a nightmare because either I don't take the medicine and want to die or I do take it and cannot function to my full ability. I am on disability because I worked in an office and could no longer sit or concentrate. Had a foley bag hanging too that was awful; now I cath. Depression hit hard antidepressants work as well as they can. So that is about it. I really want some info to give my PT. Nice meeting you all. I don't know if this is totally confidential otherwise you could friend me on facebook I lie on my side all day... Thank you for beinig hre and God bless.

[janetm2]

Welcome Fawn,
Sorry to hear you got the experiment before they got organized at knowing how to test and set up the medtronic. Not sure if we list exercises but probably the book(s) I heard about had the most info. Not sure which one or the name of both but one is headache in the pelvis? I will try to find them or maybe someone else will answer. I hope you can get some relief soon!
Janet
heal pelvic pain by Amy Stein another book. May need to look at them to see if they have PT exercises but I think one would have something useful. Not sure how much they cost either. You can always wait a bit and see if someone else has an idea for you but this was my first thought.

Off the home page is a list of PTs that already know how to treat PN.

[nyt]

On the main HOPE page there is a list of doctors that specialize in PN. You might want to consider being seen by one of them. They are a wealth of information and offer treatments that others do not such as botox. There are many options for medications and it is really trial and error for all of us to find what works without knocking us out. Finding a good general pain doctor to help you sort out medications is key. Took me almost 5 years to find a really good general pain doctor who was willing to listen to me and she has made a big difference in my pain management. I also see a pelvic pain specialist. I use to see Dr. Howard but he just retired and I will be seeing Dr. Carillo who is one of the doctors taking over his patients. I also travel to see Dr. Hibner in Phoenix. Having a good pelvic pain specialist made a world of difference for me. I found Dr. Howard about 8 months after my problems started and he has just been fantastic. I have quite a few nerves damaged in my pelvis and legs so it took both Dr. Howard and Dr. Hibner quite some time to get it all sorted out. Just don't give up!!!

[CB9672]

Good morning one and all,

My name is Carl and although I've yet to be officially diagnosed, I have been suffering with PN since May of 2012, when what was likely a latent injury from the past was amped up by a fall on my kiester. I must say that simply finding this site and seeing my own thoughts, feelings and symptoms clearly enunciated has provided significant emotional, if not physical, relief.

Like you Fawn, and I expect many others if not the majority of victims of this disastrous affliction, I've seen greater than 20 physicians who seemed to have no inkling as to the source of problem. Several have become callous to my suffering, likely born out of their frustration at being unable to come to a diagnosis resulting in severely bruised egos.

While in the hospital undergoing testing, one physician said that I should get myself some crutches or a wheelchair and learn to live with it. The facility hospitalist had no medical information to relay but did sternly express to me that my stay was going to be very expensive and she doubted I could afford it. Then following day she ejected me from the hospital with less than an hour of notice. The nursing staff was visibly shaken by both the doctors pronouncement and at having to perform the task of chasing me out of the place. My home is over an hour from the hospital, so I ended up spending almost two hours seated in a wheelchair in front of the building before my ride home could arrive. Hippocratic oath anyone?

On the subject of the spinal neurostimulation option, I have two installed at this time. The first implant is to help alleviate ongoing nerve pain from failed cervical spine surgeries and it does make a positive difference in my life. The second has been added as a temporary stopgap to help with my pelvic pain while we work to isolate and treat the actual cause.

The implant directed at my pelvic pain has provided roughly 30-40 percent relief. While this may sound like a lot or a small amount depending on your present condition, you should know that until I had it installed I was bedridden 95 percent of the time. Now I'm upright most of the day in spite of the tremendous remaining pain, but it beats just lying in bed!!

The stimulation trial is uncomfortable to say the least, but worth it to find out if it will help you. I encourage you to be objective during the trial should you choose to move forward with it, looking past the discomforts and measuring the positives fairly.

-Carl in Texas

[janetm2]

Welcome Carl,
what ghastly treament being tossed to the curb of the hospital! It never seems to amaze me at what everyone goes through due to lack of knowledge of this major nerve. I am glad to hear you are moving forward and out of the bed. Dr Hibner might be a good choice to help you as one of the closest PN specialists. The home page has the FAQs and links to doctors and PTs that are aware of PN. As you can see you are not alone and among friends. Good luck
Janet

[Fawn Reeves]

Welcome Fawn,
Sorry to hear you got the experiment before they got organized at knowing how to test and set up the medtronic. Not sure if we list exercises but probably the book(s) I heard about had the most info. Not sure which one or the name of both but one is headache in the pelvis? I will try to find them or maybe someone else will answer. I hope you can get some relief soon!
Janet
heal pelvic pain by Amy Stein another book. May need to look at them to see if they have PT exercises but I think one would have something useful. Not sure how much they cost either. You can always wait a bit and see if someone else has an idea for you but this was my first thought.

Off the home page is a list of PTs that already know how to treat PN.

----------------------------------------------------------------------------------------------------------I
Hi Miss Janet - I already found some printouts on what my new PT can focus on, on this site. It is a start. There is also a video about the four specific places that attack the pudendal nerve and also an imaging test that can see exactly where the damaged nerve is. I wonder if anyone has been to that doctor he is in Califoria it is on a post in a different topic on this exact site. I hate the abscurity involved with this. I heard of the books, thank you. Right now I am hoping that physical therapy, with the exact knowledge of the area will help. My PT is Hollie in Denver. I got her name while seeing Dr. Nel Gerrig from Pelvic Pain Solutions. It was not her but one of her doctors who agreed to take the stimulator out. For being a woman she did not hear me. I had a stack full of records that they lost that showed my previous treatments. I do have a good pain doctor but he wants to put in the spine stimulator I am scared of them after the experimental debacle. SPELLING. God bless you. Once I figure the site out (it shows on my browser in half HTML I think I am so tired of all this. Thank you for being there for the likes of us men and women sufferrs

[Fawn Reeves]

Welcome Fawn,
Sorry to hear you got the experiment before they got organized at knowing how to test and set up the medtronic. Not sure if we list exercises but probably the book(s) I heard about had the most info. Not sure which one or the name of both but one is headache in the pelvis? I will try to find them or maybe someone else will answer. I hope you can get some relief soon!
Janet
heal pelvic pain by Amy Stein another book. May need to look at them to see if they have PT exercises but I think one would have something useful. Not sure how much they cost either. You can always wait a bit and see if someone else has an idea for you but this was my first thought.

Off the home page is a list of PTs that already know how to treat PN.

----------------------------------------------------------------------------------------------------------I
Hi Miss Janet - I already found some printouts on what my new PT can focus on, on this site. It is a start. There is also a video about the four specific places that attack the pudendal nerve and also an imaging test that can see exactly where the damaged nerve is. I wonder if anyone has been to that doctor he is in Califoria it is on a post in a different topic on this exact site. I hate the abscurity involved with this. I heard of the books, thank you. Right now I am hoping that physical therapy, with the exact knowledge of the area will help. My PT is Hollie in Denver. I got her name while seeing Dr. Nel Gerrig from Pelvic Pain Solutions. It was not her but one of her doctors who agreed to take the stimulator out. For being a woman she did not hear me. I had a stack full of records that they lost that showed my previous treatments. I do have a good pain doctor but he wants to put in the spine stimulator I am scared of them after the experimental debacle. SPELLING. God bless you. Once I figure the site out (it shows on my browser in half HTML I think I am so tired of all this. Thank you for being there for the likes of us men and women sufferrs

[Fawn Reeves]

Good morning one and all,

My name is Carl and although I've yet to be officially diagnosed, I have been suffering with PN since May of 2012, when what was likely a latent injury from the past was amped up by a fall on my kiester. I must say that simply finding this site and seeing my own thoughts, feelings and symptoms clearly enunciated has provided significant emotional, if not physical, relief.

Like you Fawn, and I expect many others if not the majority of victims of this disastrous affliction, I've seen greater than 20 physicians who seemed to have no inkling as to the source of problem. Several have become callous to my suffering, likely born out of their frustration at being unable to come to a diagnosis resulting in severely bruised egos.

While in the hospital undergoing testing, one physician said that I should get myself some crutches or a wheelchair and learn to live with it. The facility hospitalist had no medical information to relay but did sternly express to me that my stay was going to be very expensive and she doubted I could afford it. Then following day she ejected me from the hospital with less than an hour of notice. The nursing staff was visibly shaken by both the doctors pronouncement and at having to perform the task of chasing me out of the place. My home is over an hour from the hospital, so I ended up spending almost two hours seated in a wheelchair in front of the building before my ride home could arrive. Hippocratic oath anyone?

On the subject of the spinal neurostimulation option, I have two installed at this time. The first implant is to help alleviate ongoing nerve pain from failed cervical spine surgeries and it does make a positive difference in my life. The second has been added as a temporary stopgap to help with my pelvic pain while we work to isolate and treat the actual cause.

The implant directed at my pelvic pain has provided roughly 30-40 percent relief. While this may sound like a lot or a small amount depending on your present condition, you should know that until I had it installed I was bedridden 95 percent of the time. Now I'm upright most of the day in spite of the tremendous remaining pain, but it beats just lying in bed!!

The stimulation trial is uncomfortable to say the least, but worth it to find out if it will help you. I encourage you to be objective during the trial should you choose to move forward with it, looking past the discomforts and measuring the positives fairly.


Hi Carl I wrote you and my computer timed out. I can't remember what I said but it was good. You must have good physicians and or PAs to have TWO inserts I am so happy your pain level has decreased. I am good for sitting for about 20 to 30 minutes then pain breaks thru the pain killers. Am frustrated and half the time do not get proactive on looking for help just go on but I feel life eeking away so hopefully with the printouts and that video from th doctor in California my PT will be able to do her stuff. God bless you, Carl. Better submit before this times out again. Fawn [Texas

[CB9672]

Thanks Janet!
Since tumbling to this site a few days ago, have reviewed the PT list and lo and behold there are several listed who practice across town. First item for Monday is to set up an eval appointment so fngers crossed!

Thanks for the note(s) And the pleasant welcome Fawn.
It is easy at times to slip back to bargaining or drop out but I'm hoping you can find something to help get your spark back. For me it's making sure to call my friends and avoid the problem so that we can have normal conversations. Along with a lot of birdwatching from the house.The thing about doctors is that although they are highly trained technically, personality and caring apears to be leached out during education. That and it only takes a "C" to become a doctor

Good days and check you later,
-Carl

[Violet M]

Fawn, one of the former directors of HOPE is from Colorado and she posted this awhile back:

Hi - better late than never! The PT I saw for years was Dawn Sandalcidi. She was trained by Stephanie P. and is VERY knowledgeable about PN. Pelvic pain is one of her her specialties. http://ptspecialist.com/bio.asp

I could not have gotten through the pre or post op phase without her (Surgery with Hibner July 2007) - she is awesome!!

Chloe

She had successful surgery from Dr. Hibner and has moved on with her life.

Have you tried a different browser to see if it works with the website? Are you using javascript? Maybe you have to set it to allow the HOPE website.

Carl, good luck with PT. Hope it works out for you. Do you have bird feeders outside your window to help with your birdwatching?

Violet