Pudendal guy in California

[ezer]

Alan,
Kaiser gave me nerve blocks. But then when that did not work, they wanted me to consider a neuro-stimulator. They would not consider surgery as a viable option which they see as experimental and dangerous. Be prepared to respond to that.

[Alan]

Thanks Don, I do remember who the doctor was that you were referring to-sometimes the drugs the neurologist has given me makes me absentminded. But, yes we are definitely squeaking the wheel and researching. I now have a case manager assigned to me. She has heard my complaints and if necessary I will email them daily, call and if needed hire an attorney. My wife printed out the lawsuit against Kaiser and we will send them a copy if needed. I am guessing that 'word' is just getting out about pudendal nerve issues & Kaiser hasn't gotten on board yet or they do not want to. I did find a doctor in San Francisco that works for Kaiser but, she mostly works with pelvic pain and with women. Apparently she does give nerve blocks but, nothing is mentioned about surgery. At this point I am totally okay with surgery from Dr. Hibner, even if there is only a chance of getting better. If that doesn't work then I'm good with the pain pump. I feel that my back is to the corner and I am willing to chance whatever means the doctors have available. Life sucks with this anyway-so why not? But, thanks for staying in touch. I do stand most of the day while teaching, walk around the room, and grade papers while standing. (improvise and overcome) (:

[zx14jack]

I am also new to the board.Some how did it on a motorcycle trip.5 days after being back from the beach,feeling great,got on the tread mill for 30 min.The next morning my world was wrecked.I felt like i had slid down the road on my private parts.Its been june of last year since and 12+ drs and pts.My private parts are not private any more!It was finally found by a neurography mri at Bham Uab kirkland clinic.Im not going into every type of dr i saw but it was brutal.imo save the hassle and get the neurography mri and get it read by some one who knows what to look for,And yes i had a mri that showed nothing first.

[Alan]

Sorry about how you are feeling. I rode motorcycles well over 30 years (mostly street bikes), jogged and lifted weights. I have pain in the same area you have. Mine came on after doing dips in the weight room and pushups-felt a pop sensation in my rectum. Immediately felt a 'burn' come on and it has settled throughout the pudendal nerve area ever since. I do better when I do 'nothing' and just become a slug on the couch. But, it messes with my head as I have always been extremely active. I'm considering paying the expense and flying to New York and seeing Dr. Potter. I want to see Dr. Hibner after that. Apparently doctor Potter gets the best images with her MRI and Hibner seems to have a lot of experience with surgery if that is what follows. Meanwhile I'm jumping through hoops like everyone else. I just cancelled a vacation I was going to take, and am now actively pursuing a prognosis. I wish you well-as this condition is draining. What treatments are you getting? Do you have an action plan that you are working through? Stay in touch.

[shawnmellis]

Hi, zx14jack
My first Pelvis MRI done here locally showed nothing. It wasn't until I got a MRI from Dr. Hollis Potter, one of the best radiologists in the country that something was actually found on my MRI. Among other things, it showed tendinosis in my adductor muscles and Varices bilaterally along the dorsal branch of my Pudendal Nerve. I would get the Potter MRI or the MRN if you prefer and not waste time getting an MRI from any other place because this is a complex and hard to visualize area especially the nerves, so go with the best MRI you can get for this
Shawn

[zx14jack]

pain management is short for drug store.They suggest a drug or combo that i try.neurontin and something else each time.neurontin in its self works pretty good @ 2700mil per day but,adding nortriptline ,trazodone,or amtriptline all have side affects.I quit taking the add on drugs as the side affects arise and contact them.I am still having spazams or twitching all over ,starting after traz for 30 days then amtrip for 28 days.I would like to try 18oo neurontin and 10mil nortrip.They didnt seem impressed with my own ideas,so im moving on.I can tell my wife(hey watch my legs jump).Its not in my head.

[donstore]

Jack,
Nortrptylene gave me rapid heartbeat and numbness and twitching as well. I have found percocets (10 mg, oxycodone) takes the edge off and Lyrica has helped a lot. Shawn is spot on about Dr. Potter. Don't waste your time on a regular MRI. I had to pay her out of pocket ($2750) and she was worth every penny. Without her MRI, I would never have gotten my HMO to pay for embolization of my bilateral varicoceles (enlarged veins in the scrotum) on 10/14.

Don

[Alan]

Don, I have an appointment to see Dr. Potter in New York in January. After your MRI did you get a review of it the same day? You mentioned that you have other entrapments as well. Is this something that can be released through surgery? My consultation with
Dr. Hibner is right after Potter in February. My wife and I decided that we are going to be aggressive with this nerve pain. Also, you mentioned large varicose veins in scrotum-did it cause burning pain? My symptoms seem similar to yours except that I can sit frequently throughout day. However, I get burning pain along the pudendal nerve route when teaching as I am up/down so much-I teach elementary students.

[donstore]

Hi Alan,
Dr. Potter goes over the images with you right after the exam and you walk out of the hospital with the cd and report in your hand. She told me that the varices in the scrotum were impinging on my ilioinguinal nerves and recommended embolization. My daily problem is scrotal pain with some perineal burning. I'm hoping that the embolization will help out with this. Once I started on Lyrica and took a vicodin (or two)midday, I am able to sit for 2-3 hours per day (leaning back in a chair with my feet up against a box on an IC cushion against a rolled up blanket in my lower lumbar area to take the weight off my perineum) if if have to wait between patients at the hospital where I am an x-ray tech. If I sit too long or ejaculate (not at work), I get the hot burning ache in my ischchial tuberosities. I'm pretty sure this problem is because of the scarring around the pudendal nerve at the right STL that Dr. Potter found on my MRI (Hibner territory). Standing to avoid pain is bad enough but not ejaculating due to the pain has been a difficult adjustment to say the least. I also have trouble emptying my bladder completely and often dribble on my shorts after I pee which I guess is a minor annoyance compared to the other stuff but also sucks as well. The Potter MRI will give you some ammo to go to war with Kaiser because they will not want to pay for Dr. Hibner. If there is a choice with your school district at the end of the year to pay more for some kind of PPO instead of Kaiser, go for it. Good luck. Keep me posted.

Don

[Alan]

Thanks for staying in contact. I find that I can now sit for nearly four hours at a time without problems. I am having the burning pain like yours-the penis is worse than the rectum. If I ejaculated two months ago I would feel burning at the same time OR itching in the same area for up to three days(no STDs). I am not having that problem as much anymore, but still have random burning. Doctors found a varicose on left side of scrotum so am wondering if that is causing an impingement on the nerve somehow. All of my pain is also on the left side, so logically....Anyway, you and I are doing better than some of the people on this site but, it still sucks. And no, I have no choice but Kaiser as we don't have any other plans except for an HMO(and that's even worse). Kaiser is now sending me to their 'top' specialist in Sunset(L.A.). So will see what they think they can do. I think that I can swing the finances for Potter as still want their MRI. I am guessing Hibner will cost $20-$30,000 if Kaiser can't treat this & surgery is required. France, apparently costs aroung $10,000. But, from what Hibner says, his surgery is getting better results than doctors in France and he saves the ligaments.