Figured I'd keep a brief diary of my excursion to San Francisco this morning, here for all to see. For better or worse, an insight into this particular treatment.
So I went to see Dr. Jerome Weiss this morning at the persuasion (suggestion) of my PT who after 1 month of treatment can't really seem to make any headway on releasing my internal trigger-points for longer than the immediate. On the bright side she did however get rid of most of my external points but unfortunately with no relief of symptoms.
Dr Weiss was relatively prompt. We sat down and discussed all my issues (which can be read about here if so desired), and then the exam started. After checking the nerves he agreed with my PT that they were definitely aggravated (uncomfortable, impaired, impinged, whatever) and the injections began. I will say that as much as I can look certain dangers and pains in the face and laugh, that is not the case with needles. <chicken> Therefore, the experience (for me) was definitely not pleasant. That said, Dr. Weiss and his assistant Angela were both extremely kind and caring and made the experience as good as it could have possibly been.
The immediate numbness on the effected region is such a weird feeling that it's quite overwhelming. I was almost scared to sit down. I feel no pain, but the feeling of urgency is higher than ever before. I have probably urinated at least 12 times in the last 5 hours and even when nothing else dribbles out, it still feels like I have to go. Dr. Weiss offered to give me another small injection above the pubic bone that he said should take care of the urgency but at that point (clothes on, ready to leave and enough needles to for a months worth of nightmares) I declined. He did give me a Lidocaine patch to place over the pubic region to hopefully diminish the urgency. I'm saving that for bed time
Before I left, we discussed my PT and he told me that I certainly need a bunch of it (which I knew) but to take the next week off. We then discussed the current meds I was taking and their effectiveness, (or lack thereof) and he gave me some different samples to try. I can honestly say that it felt like he was trying to do what was in my best interest. It felt reassuring. °Only time will tell°
I took public transportation to his office which I probably won't do again. I thought it would be easier and cheaper but I have to admit that there is definitely a feeling of security in your own vehicle and walking around SF getting on a bus and then a train really felt awkward and/or vulnerable with a numb midsection. just my 2 cents on that
5 - 6 hours post injections, the urgency might be subsiding a very little bit and everything else is still numb. Hoping for the best when the feeling comes back. Wish me luck!
I'll keep you all updated
Joe
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
OK, so I developed what feels like a golfball underneath the lowest part of my tailbone yesterday morning.
Thought it was from being constipated from all the meds so I figured I'd get at it from the source and I hit it with a fleet (bottle enema, saline laxitive) Felt like some of it came out but not all.
So I figured I'd hit it form the other end and drank a bottle of magnesium citrate (think thats what it's called)
I crapped my brains out all last night and a bunch this morning and the golf ball is still right there under my lower tailbone.
Anyone else have this associated with the CPPS?????
If not, any other ideas?????
Thanx,
Joe
Last edited by harpo-rider on Sun Sep 21, 2008 6:58 am, edited 1 time in total.
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
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webslave wrote:That's one of the most common of all symptoms. Please use the search function.
Thanx webslave,
I did try the search. I got a lot of golfball in the anus. I must have missed golf ball under the tailbone.
Maybe I'm just unsure if they are the same thing.
Any thoughts on this scenario. I have NEVER had this symptom before, .... I think it was Saturday morning when I first noticed it.
2 days prior on Thursday morning I had my Pudendal Nerve Blocks by Dr. Weiss.
Have you come across the "Golfball" developing after nerve blocks or any other procedure??
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
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Thursday night I put on the lidocaine patch over my pubic area and slept like a baby. Urgency all gone. Didn't even have to rush out of bed in the morning.
Urgency and frequency as close to normal as it has been in months. But that could also be from the new drugs he gave me, Flomax, Sanctura and Lyrica. (I have no clue)
Absolutely no residual pain in the actual injection area.
So far only miner urethral/perineum burning which was my major complaint. BUT, I have been really laying low and not putting myself in to many of the compromising positions (siting, working out, etc.,,,) that usually cause pain.
The one big complaint at this point is that I have seemed to develop a large golfball underneath my lower tailbone on Saturday morning. Thought it was constipation but I drank enough Magnesium Citrate to clean out 5 people and the Golfball still exists.
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
webslave wrote:Could be something caused by the injection. I'd ask Weiss about it.
Thanx, I plan on it but I'm gonna have to live with it for a bit as I have knee surgery on Monday morning.
I'll probably leave him a message.
Have a good sunday
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
webslave wrote:Could be something caused by the injection. I'd ask Weiss about it.
Sunday Night Update.
Golf ball has all but disappeared throughout the day, ....Gone
Urethral/perineum burning slowing coming back.
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
harpo-rider wrote:Sunday Night Update.
Golf ball has all but disappeared throughout the day, ....Gone
Urethral/perineum burning slowing coming back.
Hi there,
Glad to hear that the golfball went away.
Unfortunately, the return of your burning sensations is not surprising. Nerve blocks are very rarely curative and tend to only last for a short period, unless he guns for a more extensive block.
Have you begun PT? I think he made a good suggestion there.
I am not a physician. This is not medical advice. Consult your doctor!
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
I was so inflamed (probably not the right descriptor) with so many TP's, and with the other symptoms completely enveloping my life, the suggestion of the nerve blocks was that of my PT. Trying to break the cycle so she can get in there and hopefully get rid of some of the internal TP's that she is having so much trouble releasing. Think I'm also gonna try a 5 day run of Prednisone. Hopefully the combination of the nerve blocks, the Prednisone, the pt and me doing almost nothing physical will get the ball rolling. Hopefully
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
OK, still gonna give it some more time as Dr. Weiss did say it could take 1 - 2 weeks to feel any improvement, BUT 8 Days post block and everything seems to be right back where it was before the block. Bummer
Oyyyy Veyyyy!!
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
Please let me know about your improvement with the blocks...I am considering a similar procedure and want to know if it helps. Also, does Weiss take insurance?
Thanks
Alex
Age: 23 | Onset Age: 20 | Symptoms:pelvic floor tension, spasms with intercourse, frequency and urgency, general pelvic discomfort | Helped By: Physical Therapy, TCAs, Elmiron (i think), diazepam | Worsened By: Lots of food triggers, stress, siting for long periods, cold
cadyfatcat wrote:Please let me know about your improvement with the blocks...I am considering a similar procedure and want to know if it helps. Also, does Weiss take insurance?
Thanks
Alex
The semi-short reply to a long complicated answer would basically be no improvement at all of any of my actual pain symptoms, however after seeing Dr. Weiss again just last week and fully expecting him to examine my Pudendal nerve and tell me that even though the first round of shots didn't seem to help I should try another round as it sometimes takes 2 to notice any improvement. But contrare (sp?) he poked, pulled, pushed, squeezed, etc., etc., and informed me that the actual Pudendal nerve was basically calm and he could see no reason to give me more injections.
So all in all, my internal trigger points are far fewer and not as nasty as they were before, my Pudendal nerve (to the touch) is 85% better than it was before, but my "painful symptoms" are NO BETTER than they were. The only thing that's gotten way better has been my urgency, frequency and stream. They are all excellent. I can generally go 3-4+ hours without any urgency and the stream is generally really close to normal. However, I am also on Flomax twice a day so I can't say for certain what helped.
Sorry man, I would have loved to have had a more positive, definitive answer for you but that's the best I could come up with. Good luck what ever you decide.
Joe
PS. Please let me know what you decide and how it turns out.
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
Sorry I can't be of more help but I'm not aware (no longer remember) what Dr. Weiss's concoction was. I do know that there were supposed to be several ingredients that were supposed to help short term pain, swelling and gradually reduce long term pain. (steroids, cortisone, ???) I stopped seeing Dr. Weiss quite some time ago and have been through Stanford Urology for Neurostim Implant, (implanted and removed-made me worse) Stanford Pain Management Clinic for numerous different injections, John Muir Pain Management Consultants also for several different series of injections, and so far absolutely nothing has helped. Unless someone proves to me that they have something (backed by lots of proof) that will almost definitely/positively help with some of the pain, ... I WILL NEVER AGAIN SUBJECT MYSELF TO INJECTIONS, ... of which Dr. Weiss's were the most barbaric. At least at Stanford and John Muir it was done in an OR setting under a scope to guide proper needle location and nothing shoved up your %&*) !!!!!!!!!!!! and IV calming/pain control meds were administered prior to procedure. (That said, they still sucked)
I will give you the one positive I have found along the way that was discovered by a mere urologist in the John Muir system. He prescribed 1 valium (Diazepam) before bed, every night. Since then (at least 1 year now) I have not woken from sleep 1 single night due to pelvic pain and between the Diazepam and Flomax, urgency and flow are greatly improved. Daily pain symptoms remain unchanged.
Also a possible coincidence warning. Again, NO FACTS to back this up. Do your own research and make your own decisions. I was told by by different Dr.s that the barrage of nerve meds I was put on for 1 1/2 years was helping me even if I didn’t realize it. That’s BULL. I have been off all nerve meds for almost 7 months now and there is absolutely no change for the better or the worse. So, on the positive side, ZIP!!! On the Negative side, .... Here is the list. Dizziness, blurred sight, feel like an unmotivated blob all the time, NO sex drive and even when I had to perform it was difficult and there was no orgasm at all, and I saved the really bad stuff for last, ....coincidence????? .... decide for yourself. Within several months of taking the nerve drugs (mass quantities) I started what was the first of 5 surgeries for ligaments and tendons that either seemed to be just letting go of the bone or actually rotting. All due to decreased blood flow to connective tissue. Next/last/worst, July 20, 2009 I had my friend rush me to the ER after being sick for about 6 days. (and all ready on antibiotics/puffers/other meds for 3 days) Long story short, both lungs were in the process of shutting down. I was put into an induced coma (22 days) that I was not expected to awake from with about 15% lung capacity. I survived, Yea!!! 28 days after arriving at the ER I left the hospital. I was tested for everything under the sun. Every disease known to man. No answer why a healthy, fit, endurance athlete’s lungs shut down and his bodies self defense mechanisms (white blood cells/antibodies) never rose to fight the infection. My GUESS, the nerve meds had/have a lot to do with all the connective tissue damage and what was diagnosed as Multilobar Pneumonia w/ARDS and Acute Respiratory Failure. I have been off all nerve drugs for 7 months. All injections for 4 months and PT for almost a year. Nothing (pelvic pain related) is any better but nothing is any worse.
I was told, when diagnosed with pelvic pain to stop doing everything I loved, everything that made me healthy. I have recently gone back to doing many of the things I love, many of the things that made me healthy as per all my Dr.’s orders. They say the only reason I lived was because of how incredibly healthy I was and the only way to keep my lungs and heart strong is to again exercise aggressively, and the only way to keep the blood flowing to the connective tissues is the same prescription, .... Exercise. I have learned to relax my pelvic floor muscles at all time (not a second goes by without it as a thought) but I refuse to let pelvic pain keep me from living the life I love. It is greatly altered but I can certainly tell you that after a very long time of doing all that was prescribed for this condition and being a miserable SOB, .... I have no more or less pain including some/many of the things that make me who I am than I did when I became a medicated, quigong, meditated, violated sufferer. NO MORE!!
Sorry for the extremely long answer I just felt I needed to put this out there. I have not been apart of this board for a very long time due to what I believed was a very hypocritical overseeing of the content and bias towards certain members. I got no help what-so-ever from this board, (god knows, this statement alone is probably enough to have this reply pulled) but several things I am sure of, ... At least in my case, is that if you truly have PNE (which I’m 99% certain I have) There is only a very small chance that the injections, meditation, medication, .... etec. etc. etc...... Are going to help your condition. The only positives that I personally have found are Flomax, Diazepam, and a constant regard for relaxation of your pelvic floor.
Use your own judgment......
Good Luck,
Joe
Age:43 Onset Age:33 Bacterial Prostatitis lasted about 1yr, remission, then back in and out of nonbacterial ?? (whatever) for years. Never nearly as bad and constant as now (last few months) Symptoms:Burning perineum/urethra, Urgency, Weak urine stream & spray, Post urine dripping Helped By:Lying down (preferably on back) Worsened By:Sitting. I used to only hurt when sitting for prolonged periods in certain chairs and motorcycle seat. Ergonomic bike seats used to be A-OK. Standing and or hiking always made me better. In the past 3 months I have rapidly declined. Everything hurts, sitting, weights, work, hiking and now even sometimes standing provides no relief. Almost constant pain of some degree unless I'm lying down.
But that could also be from the new drugs he gave me, Flomax, Sanctura and Lyrica. (I have no clue)
