Pudendal guy in California

[donstore]

Alan,
I believe that Ezer has experience with Kaiser so you might want to pm him with that question. My guess is that Kaiser can provide nerve blocks but that they are known for not sending anyone out of network. I believe I heard that they offer an intrathecal pain pump as a last resort. As I said, if you have a chance in Dec. during open enrollment (if that is a choice with your employer) pay more and get a PPO plan if you can. The only thing you can do in the mean time is find medication that cuts into your pain without unacceptable side effects. Good luck.

Don

[Alan]

Haven't been on here for awhile....Can't believe it's almost July. I actually went for a mile walk today and had a little spasm but, no pain. I found that if I walk on a level surface I am better(hills are tough and are avoided as suggested by this forum). My doctors haven't made a specific diagnosis with me yet. They only say that I have some type of nerve damage but,won't say what. I have seen the urologist, neurologist, proctologist and will be returning to the urologist and neurologist in several weeks for a follow up. I guess I am having both of them, and myself rule out any other conditions before PN is the only answer left. If there is any good news for me is that I have had two good days in a row. I even went to see the movie CARS with my kids and was able to sit through the movie without pain. Maybe there is a chance that I have stretched the nerve but, no entrapment. I don't know. I get frustrated as many of you do. I always try to find an answer and then research more. I did contact Dr. Michael Hibner's office in Arizona as he has been to France and seems to know a great deal about this condition. I am waiting to here from my primary doctor from Kaiser to see if they will allow me to go there as they obviously don't have the expertise to deal with this problem. -Alan

[ezer]

Alan,
The top pelvic pain doctor at Kaiser is against pudendal decompression surgery. They will start with medication and if it is unmanageable, they are open to a neuro-stimulator implant.

[Alan]

Don, I am considering going to see one of Dr. Hibner's fellow associates in September. The PN pain I had last April(when it started) has diminished greatly in the past 5 days. I only feel some stabbing pains once in a while in rectum area and a strange tickling anoying sensation in genital/ penis area. I don't know if that means the nerve is healing or not. Have you had similar sensations and did they ever diminish or are you in pain all the time? I don't know what to think but, am hoping that my body is healing. My PN started after heavy furniture moving and then resuming weight lifting. I have not worked out with weights since April. Kaiser seems to want to only give me more drugs and not investigate where the problem is coming from.

[donstore]

Alan,
In my opinion, weight lifting or cycling is a bad idea for anyone with PN. I have gotten pain flares from moving furniture. Ejaculating or too much sitting flares me. Any activity that works the core is bad for PN. Swimming is generally considered the safest exercise. As Ezer said, Kaiser will not offer anything but drugs or pain intervention. You need to see a specialist like Dr. Castellanos. Lyrica and oxycodone have helped me survive but I get away with less and less as time goes by. If I had a job where I had to sit all day I would be done for. I have pretty much come to the conclusion that surgery is my only choice to have a chance at an improved quality of life. Keep us posted on how you are doing. Hope you find some answers.

All My Best,

Don

[Alan]

My wife found something interesting while researching on the internet. Apparently a patient in the past sued Kaiser and won as they would not send her to a specialist for her pudendal nerve. She is now getting the 'treatments' she needs. I sent a letter to my Kaiser(via email)neurologist and he seems to be getting on board. He thanked me for the information I had found on the internet in regards to Dr. Michael Hibner. Also, I was told by member services' that it is our 'right' to be seen by a specialist -if your provider doesn't have one that can treat you properly. I will keep you posted to see what happens. I also have an appointment to see one of Dr. Hibner's associates in Phoenix at the end of the month.

[donstore]

Alan,
Keep us posted on your progress, I am having trouble getting Healthnet to pay for my Potter MRI which I am in the process of appealing. I will be sure to include Dr. Hibner's paper as well as the pre-appointment sheet that he includes telling you to get either the Potter MRI (3T) or one from his local doctor (1.5) and tell them they are obligated to pay for services that they are unable to provide in house. If they are balky about approval, it never hurts to let them know that you will will appeal to the state board as well as pursuing legal remedies beyond that, along with the possible negative press that it would generate for them.

Don

[donstore]

Alan,
Double posted by mistake. It's late.

[Alan]

Don, who is Dr. Castellanos(I don't know if I spelled his name correctly). You mentioned his name. Do you have burning pain that feels like someone ripped a scab off of a wound? That's how I feel in my perinium area along side the rectum when I flare up. Also, I can have this pain up the side of my penis. I thought I was doing better-and I do on the weekends, but working is torturous and causes pain to go up. Fortunately I only have it on one side for the most part. Have you spent money out of pocket yet? I cancelled my appointment to Phoenix until February as I am jumping through Kaiser hoops. They want to give me nerve blocks, though I don't think that I have much faith in them. I have been reading and researching like everyone else on this forum and feel that Dr.Hibner may be the only chance we have at a normal life. He seems to be having more success with the surgery than what France is doing. I am quickly reaching the point of 'I don't care what takes the pain away' whether it be drugs, pain pump or surgery. I appreciate being able to talk to you on the forum as family really doesn't understand what the pain is like.

[donstore]

Hi Alan,
Hang in there. Pain can really wear you out. Do whatever you can to buffer it and keep it down. Lyrica and oxycodone (percocet) have really helped me to improve my quality of life and keep it together while I search for a solution. If you can tolerate any of these or anything else without unacceptable side effects, I would urge you to give them a try. There is no shame is seeking relief when you are suffering. I love weekends when I can sleep late and not sit. Unfortunately, working for a living is a lot tougher. If sitting makes you feel worse, try to limit your sitting time. I remember you saying you were a teacher so get a lectern (and use a cushion when you have to sit) and if you don't want to tell your colleagues that your penis hurts, just tell them you have a bad back. People will be on your side if you give them something they can understand.
As for Kaiser, getting their nerve blocks may make it easier for them to admit they can't cure you and get them to send you out of network. I assumed when you talked about seeing one of Dr. Hibner's associates that you were talking about his fellow, Dr. Castellanos. Good work at keeping the pressure on Kaiser. They always pride themselves on customer service and they hate bad publicity. Just remember that the squeaky wheel gets the grease. Keep me posted on how you are doing. I will be checking on you.

All My Best,

Don