Seattle area doctors / treatment options?

[tyro]

I am relatively new to PNE, having been about 6 weeks since it came on from cycling. I live about 1.5 hours outside of Seattle. The doctors in my immediate area have no experience with PNE and do not know what to do with me. Has anyone here had any experience with any good doctors or treatment options in the Seattle area? I see that there is a doctor listed on this site, Dr. Attaman, who specializes in chronic pain and does nerve blocks. Has anyone used him?

The PT does not seem to be doing anything. The pain is getting more constant and worse with each passing day. This is one of the toughest thing I have ever experienced in my life. I'm in constant discomfort/pain.

I have my name in the hat to see the Houston team also, as I really want to see an end to this pain asap. I also have the information as sent by Dr. Filler in CA. I've read the posts about the various doctors. I'd like to use the least invasive type of surgery possible, but eliminating pain is my number one goal. Any advice there?

Thanks!

[janetm2]

Tyro,
So sorry you are in such pain. I agree it is the toughest thing I have experienced as well, even after 20+ years of chronic foot pain and changing my life around that. Of course that is probably what gave me PNE, sitting too much. However, I am now battling back from surgery and feeling that anything is better than ending up with chronic PNE pain. So besides confirming and sympathizing, I have a suggestion and question to try and help you. There are 3 PTs listed in Seattle off the home page that you may want to try, either to help with pain and/or determine what and where the pain resides such as muscle spasms. My PT said the two ligaments were so tight they were compressing the pudendal nerve. Previously I had pelvic muscle spasms. How much Gabapentin are you taking? I am taking 1500mg per day but others take even more to get relief and lower your pain is essential. Hang in there, now that you found this site there is tons of info to help you make a plan and I will let the more experienced tell you what is least invasive surgery but it may depend on if you are actually entrapped and where. You may want to search on ESWT that others are doing instead of surgery. Best to you. Take care.
Janet

[tyro]

Thanks for the reply Janet.

I think it may be beneficial for me to see a PT that specializes in pudendal issues. My PT is more of a sports-based PT, though he is very good at what he does. He fixed my knee after surgery in 2007 and did a wonderful job.

The biggest question I have is, "How do you KNOW if it is truly trapped or not?"

I seem to have many of the cardinal signs: extreme pain when sitting, burning pain around rectum and genitals, pain when sleeping, some loss of sensation, etc. It seems to hurt now whether I am sitting, standing, or laying down. Sitting hurts right in the perineum area and genitals. Standing seems to burn more in the rectum area. Laying down seems to burn and sting too.

I don't want to be hasty and rush into surgery when there are other treatment options, and I would prefer the least invasive surgery possible, but I'd rather get it fixed manually and permanently. There must be some benefit to reacting quickly before it becomes MORE entrapped over time, right?

However unrealistic it may be at this point, I want to be able to sit down again and enjoy a meal with friends. Again, I'm new to this, so please throw in your thoughts where I need to learn more about the long term aspects of PNE. My doctors don't know much about it and there is no blueprint or roadmap for me to follow. What are "the steps"?

Thanks ahead of time for any help on any of this. I'm dealing with a lot of different aspects of the problem right now and trying to adjust accordingly.

[janetm2]

Tyro,
I haven't much time at the moment so I will start with meds for doctor since you are seeing him first. You will want to try raising the Gabapentin the slowest was adding 100mg every two days and taking the pills 3 times a day. 100, 100, 100 then 100, 100, 200,do that again then add to the morning 200, 100, 200 again for anothe day then add to the midday. This is masking somewhat but really keepjng you from getting stuck in a pain cycle that will be bad in the long run. Sorry I gotta run but will add info.later today. Also yes fixing sooner is better but also want to be wise about choice.
Janet

[janetm2]

TYRO!
I Just reviewed the faqs off the homepage and it answers some of your questions and provides more info on what I wrote about lifestyle changes, etc. The steps from my quick brain dump are getting meds for pain, limiting sitting, using a cushion for any sitting, lifestyle changes to not do anythhing that hurts, suchs as bending, stretching, walking up and or down hills. Bicycling, frog kick swimming, etc. See a PN physical therapist. Then most suggest MRI by dr potter. Get nerve blocks that are guided. See a PN doctor. Read all you can to plan your way and help decide on a surgery or checkout the new ESWT in Cornwall Canada as an alternative to surgery. Fight for yourself because there are few medical folks that know or understand this condition. Entrapment is sometimes only known for sure when the surgeon goes in and sees it. To decide on surgery the blocks and your history may be the bigger clues. There are other tests that I did not have and I did not have MRI but an MRN which did not show my entrapment but the dr did say he did the MRN to rule out other stuff(he did not say what they were). Someone else should be able to provide some more info for you and fill the gaps. Hope this points you in the right direction.
janet

[tyro]

Janet,

I sincerely appreciate you taking the time to make a list of "to-do's" for me. I think I am checking all of the boxes now...

[janetm2]

Tryo,
That chart is reaaly good and glad you found it and are on track. Focusing on the plan will hopefully release some tension. This is a tough battle but you can improve and I am sure you have the strength like others before you. Do stay positive help is on the way. Although there may not be a single person throughout you can get a good group of people to be the team for you. I have a good team and some even talk to each other but I did have a bump along the way and I felt lost for a bit but PT was always there, just not able to write doctors letters for work and provide meds so they gave me a new gynecologist that knows about PN/PNE and he can manage total care. Just keep plugging away and you will get through! The gyne sent me to an acupuncturist and suggested mindful meditation (I cannot say I am doing this but it has helped others I read a jon kabit zinn book but havn't caught on). I did see a psych at work mostly just talked and he said I was doing fine though I am still trying to deal with lifestyle changes. I guess being a project manager this is like that going through steps. Take care
Janet