Okay, so I've heard from a few of you and its time for another update.
Its as if I'm a new person.
First, Rheuma Arth, I believe its Celebrex that has changed me the most. My desire to be more active consumes my every day. I'm challenged, for the most part, to restrain myself and not over do it. I've pushed myself back towards a normal life, life without RA (again, for the most part.) As I get toward excess, my body begins to rebel a biot and I am tuned to listen to my bod and then begin curtailing activities. I am though up to about 400% more activities than I was prior to Celebrex, prior to my perceived PN issues.
Second, The combination of Lyrica, Nortryptilene and now Methocarbamol has me feeling no pain whatsoever. Maybe I'll occassionally feel some achyness, but only after some long term physical activity or prolonged sitting (>6hrs.)
The pain management dr, Dr Jain, os by far the doctor with the greatest impact in my life. His mannerisms, ability to listen through the fog of everyday description, the ability to care for his patients and be actually concerned, is by far the best qualities I've seen in ANY Dr. (That should say something since I've been to over 12 since July, personally, and then in my life have seen and spoken with thousands professionally.) I see the doctor monthly and we sit and speak at length, go through examinations and then discuss diagnostic approaches for over an hour each time. How many doctors out there spend an hour or more a month with their patients? I recommend him to me Justice friends, family around the country and anyone else who will listen. He's also good friends with the people over at CBS TV and 60 Minutes (if that makes any difference, which it shouldn't.)
Now, next steps. Obviously I can't be on these meds for the rest of my life. Well, I guess I could, but not advisable.) If we get to a point where the discomfort is gone and I begin withdrawing from meds and the pain reoccurs, then we have chosen to go with a tungsten seed implantation. The seed is benign in and of itself. I'd then go for sonogram treatments where the typical exam itself would heat up the seed which is implanted next to the nerve. The seed heats up and gently, covertly diminishes the irritant pain signals. This procedure will be undertaken after great diagnostic testing to isolate the specific nerve in question (illiogunial, genitofemoral or PN) since they're mostly contained within the same nerve channel.
So, that's my story through now. Don't know if I'm a fan of the methocarbamol (its compressed tablet form breaks up in the mouth very easily leaving a very bad taste for quite some time. I also can't quantify if its actually doing anything for me. But that will be left for time to tell.
I can though recommend Pain Management as a primary choice for anyone experiencing PN or any other type of aberrant pain. The knowledge in GOOD pain mgmt doctirs far outweighs most other specialties. It also helps to make decisions of urgent need or critical need and impact out from underneath the pall of constant invasive pain. Get on top of the pain first, before making critical decisions which can affect you for the rest of your life. Its makes sense.
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5 comments:
How's PT going?
It sounds dangerous to try to destroy any part of the pudendal nerve. That may work for a nerve that carries feeling only, but not for a mixed or motor nerve. The pudendal is a mixed nerve--it carries feeling and controls sphincter and sexual function. You should really do a lot of research and make sure you are not the test case. This doesn't sound (to me anyway) like something that there is a lot of control over. It sounds very inexact. Does your doctor have any published information on this?
I do totally agree with you that pain control is imperative. Don't be surprised if you go off the meds and find that the pain is still there; that is very common with these nerves, that the medications only mask it.
I am also sufferin from one sided perineal pain with sitting and urinary/bowel sypmtoms along with it.I am not living in the US though. I have searched a lot and from what i have seen, surgery shouldnt be considered at all,the sucess rate is very low. Have you read "A Headache in the Pelvis"? I am really considering of contacting the authors for pain management, but as the other person commented here, its better notto go further than physical theraphy or conservative treatments. I am almost sure what i suffer from is PN and i know how devastating the situation is for someone who has to sit down a lot of hours for work. Also do you ever notice that your sitting pain gets worse when you are tensed or stressed? I feel mine does(I feel more burning). So there is something there..
Thanks.
I agree its dangerous to de-nervate any segment that is causing pain. My Dr has tghe same concern, but its a life choice. If pain is intolerable and everything else has been tried, then you need to weigh that option as a viable one. If you do not, then your life expectancy typically plummets (from your own hands.)
There appear to be many good doctors around the world that have dealt with this issue in varying degrees of intervention. The first and most critical phase is understanding your body and finding a doctor that will take the time with you to 'hear' your story. I'm a poster child for failed doctors. 12 of them misdiagnosed me. Some of them who I would have previously considered 'best in world' class. Each pathway they took failed or didn't yeild any results. As I said, find a doctor you're comfortable with. There are plenty in France, Belgium, Ukraine, Austrailia, one in Japan that I saw. So access is relatively straight forward with a Visa and a plane ticket. You will not get treated properly until you find a doctor that actually listens and takes more than 15 minutes with you.
Is this treatment expensive? In the end, yes. Pragmatically, if money is a concern to you, then your pain is not yet high enough to make you do something about it. The pain I was in consumed my every day, every waking minute. I could not focus on most anything else, other than 1-2 hours a day when I would blog, or work from home/office.
If sitting is uncomfortable, fashion a seat ring from simple cushion-type foam. Cut it to look like a horse-shoe. Get up every 45 minutes and walk around to establish a comfort level.
For me, medications have done wonders. I'm now on the downward slope of medications, reducing them by small percentages every month along the way. Current regimen is 25mg Nortryptlene in AM, 200Mg Celebrex AM, 50 Mg Lyrica AM. Then in PM its the same, except for the Nortryptlene which goes to 50Mg. I was as high as 450Mg of Lyrica/day 2 months ago.
Keep reading blogs, there are plenty out there to help quantify things. Create flow-charts (like in differential diagnostics) with symptoms that fit and don't fit. Eventually, you'll begin to see connective patterns develop. Also, find some good books on nerve anatomy, or a pain block book. This will allow you to see which nerves cover which areas of the body, and therein you can begin narrowing down causing factors. And lastly, with this, speak to your doctor. I enjoy a 'healthy and robust' interchange with my doctors. In cases, I've done so much research I actually am more familiar than they are. They shouldn't be insulted by questions on their knowledge. Let the exchange flourish, listen, be kind but expressive. With this you'll be on your way to finding resolution faster than you might otherwise believe.
Doug
I am very sorry to read of your experiences, let alone that you have this condition. I similarly suffer, however, my condition is far more complex.
Do NOT destroy any part of the pudendal nerve.
Do NOT do surgery except as an absolute last resort.
Please consider contacting Dr. Jerome Weiss of the Pacific Center For Pelvic Pain and Dysfunction, tel. no. 1-415-441-5800. He is amongst the world's leading, if not the leading, non-surgical specialists on PNE, PNC and pelvic pain. I understand that San Francisco is not convenient. Nevertheless, Dr. Weiss is going to be your best resource for conservative treatment, or, if not possible, to guide you for future treatment.
Your condition takes a long time to treat and will most likely involve varying degrees of lifetime follow-up. I strongly suggest the help of a professional to assist with this aspect of your condition.
All my best.
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