First Time Post - My Story and All Input Welcome!

[Thunderman69]

Hello All,

I have been lurking on the site here for the last 8 months or so... after becoming sick back on Feb 21, 2012 with what was inititially diagnosed by an urgent care doctor as severe prostatitis. I pretty much have gotten nowhere with the U.S. Health System and have found that I have had to become my own patient advocate. With the help of this site and my iPad I have basically cared for myself and helped educate my doctors and family. This site has helped me to keep my sanity, and hope that someday/somehow, someone is gonna help me figure out whats wrong with me! I am suffering tremendously, but more importantly my family and the ones I love are being impacted and I really care more about them than anything! They need me to get well so bad !!! Sorry to get emotional but as you all know this condition is pure hell on earth, and I wouldnt wish it on my worst enemy... Anyways, This is going to be a very long post - I have been saving it all up for now!! So, I really appreciate anyone who gives me the time and thoughts on my situation...

When I first got sick I bounced back and forth between my GP, Urologists, Pain Specialists, and a Gastroenterologist. I had all the classic symptoms of prostatitis, but I also had severe rectal pain, pain in my tail bone and lower back, and burning in my groin, and inner thighs.. So I was put on antibiotics until the middle of April when they saw that they were useless and not working. They also did all the standard blood tests, etc. One thing that came up was that my white blood cell count was high.. I had 2 CAT Scans of the Pelvis, an MRI of the lower spine, an abdominal ultrasound, and numerous digital rectal exams to check my prostate.. Which by the way was deemed normal via a prostate blood test and the rectal exam.. The specialists saw nothing out of the ordinary on the imaging so they decided to give me a Colonoscopy in mid April as well... Oh my god - it put me in the absolute worst pain imaginable for almost a full month ... The GI doctor was dumbfounded because to the contrary to all my suffering after the procedure, my test results were fabulous in his opinion. No problems.. I was in crushing pain deep inside the rectum, so we thought maybe something went wrong with the Colonoscopy. The docs said my prostate was probably a bit sensitive to the procedure!! I laid on the couch for about two weeks in misery and my wife and mother finally convinced me to go to the Emergency Room...

I live in Ohio which is the home base of the world renowned Clevelend Clinic. I spent an evening in their ER as they ran tests, looked at all my previous tests and records and scratched their heads as to how I could be in so much pain. They shot me up with loads and loads of Dilaudid.. they did another Ct scan with contrast in my pelvis and saw nothing again. They did note that my white blood cell count was high however.. I was then introduced to the guy who admits patients to the hospital - conveniently called the Hospitalist. He turned out to be the gatekeeper between the hospital and the ER, and it was up to him if there was any reason to admit me. He did a quick physical exam of me, grabbed my testicles, stuck his finger up my butt and then he left. After about a half hour he came back with a print out of what looked like something he googled on the internet. He handed me this report he printed, and said you have CPPS. I said whats that? Chronic Pelvic Pain Syndrome he said, and please read up on it. He told me it was a very rare disorder but that it usually resolved on its own and had unknown causes. Then he said here is a prescrip for some Percocets and Hydromorphone to hold you over until you can make it back to your GP and set up an evaluation for CPPS patients!!!! That was it.... Chronic pelvic pain ... go home and medicate and suffer.... Good bye...... I was DEVASTATED. I was in so much pain I was begging them to keep me in the hospital and here they were kicking me out!!? You have to understand, before this happened to me I was a 42 year old physically fit male that was running up to 10 miles in a day and bench pressing 225 pounds as my working out weight. I wouldnt say I was an Olympian, but I was in decent shape for a a dude in his 40's. On top of that, I averaged a doctor visit maybe once every 12 months and never took even a tylenol for a headache!!!! This is all less than one year ago.....

Fast forawrd to the end of May.. And there I was laying in bed suffering and swallowing pain pills which actually did help with the pain. I have a career in technology sales that thank god allows me to work from home. During all this time, with the love and understanding of my boss and employer, I was able to keep my employment. I also found the time to research about my condition and thanks to the gatekeeper at the Cleveland Clinic I found this site!! THANK GOD! He told me to study up on CPPS and I stumbled upon Pudendal Hope in the process. So now I figure out what the pudendal nerve is and some of the other pelvic nerves, and it quickly makes sense why the Colonoscopy hurt me so much... I get educated a little and start thinking this may be nerve related and I discuss it with my GP who slightly buys into it and starts prescribing me Gabapentin and Cymbalta. I have some pretty bad side effects at first (vertigo that lands me in ER once).. But after a few weeks we kinda sort it out. The fact that we are mixing these drugs with Oxycontin and Percocets are adding to the dizziness so I end up dealing with it.

My GP then refers me to a Pain Specialist who of course wants nothing to do with prescribing opiates and everything to do with Nerve Blocks!! Im sure many of you know this drill.. She was also very paranoid of prescribing opiates.. Must have had probs in the past or something - I dont know... All I do know is that when they are taken as prescribed by legitamate suffering pain patients they can be of tremendous help!! I was taking about 60 mg of oxycodone per day at the time when I started seeing her, and she read me the riot act like I was some kind of criminal street junkie druggie... It was humiliating and embarrassing. I had never been treated by a doctor like that in my life and was completely naive to the world of narcotic pain medications. i Here I was, a guy that never took a percocet in his life before the year 2012 being incriminated by this woman for taking too much of it! It was surreal, and like a bad dream to say the least that I was suffering and the one person I thought I could rely on was bullying me... Anyways, She cuts my dosage slightly and gives me a Gannglion Impar... which does nothing but put me in searing pain for another week ... this is all in June. Believe it or not, at this time I was actually able to talk her into writing me a script for the MRI for Dr Hollis Potter folowing the protocol as dictated here. I promptly set up an appointment and the soonest they could see me was August 31st.. I also talked her into writing me a script for Physical Therapy because I read that it was an important step in the diagnostic process on this site. Using the list of PN aware therapists on this site I found one close to me and set the appointment with her. I had one session with her... She did her initial work up on me and immediately determined that based on at least her first impression that I had some type of Pudendal Neuropathy based on the fact that my rectum was clenched shut like a fist! After this meeting however I was in real bad pain so I decided that she possibly could be compromising my nerves so I immediately stopped going until I got my MRI...

Between June and the time I got my MRI on AuG 31 with Dr Hollis Potter my pain seemed to calm down... I was sitting using a special seat that I purchased by using the refommendations on this site and I am back to working and traveling about 50% the level I used to. I started feeling better about a month after I started on the Cymbalta, and I read that this was common so I will attribute my progress at the time to the Cymbalta and my lifestyle changes of not sitting much and using the special seat, etc..

So In the middle of September I got the results of my MRI and they basically say that I have varices in my pelvic floor and varices effacing pudendal nerve and surrounding the sacrotuberous ligament. Of course, my Gp has no idea what any of this means other than there is something of note on my MRI.. I now have a new Pain Specialist, who took over for the last one that I had as she quit the practice unexpectadly! This turns out to be a blessing because the new guy knows how to do Pudendal blocks, understands what pudendal nueralgia is, and is a caring doctor. He reads the MRI and he also stumped however.. He is not sure that varices have anything to do with my problems.. He offers to manage me with medications to start since my pain levels were low at the time.. So here is where thinngs get real ugly for me..

I was taking 2 x 30 mg OxyContin per Day, and Percocet 10/325 as needed for break thru pain upto 4 times if needed. I also was taking Cymbalta 30 mg, once per day. The Cymbalta and the Oxycontin were costing me $400.00 per month because my health insurance doesnt cover name brand non generics so I am on the hook for full price on those. I asked the doctor if he could switch me to something generic that was similar and he offered MS Contin 30mg.. It only cost me $10.00 per month so I jumped on it. As I said, at the time I was feeling better.. So I made the decision to stop taking the Cymbalta as well.. that saved me another $200.00 per month! Things SEEMED to be going good - I saved all that money and I was feeling better.

Welp, its now getting into November and I love to do outdoor type activities that entail hiking in the big foothills of southern Ohio. Its one of my favorite things to do and I was feeling better so I went with friends camping and hiking .. Also, my wife and I started building a new home in October.. A very exciting time in our lives for sure, and I helped insulate the walls of the garage which entailed climbing up on a ladder and stuffing insulation and stapling.... Etc... this all leads up to NOW....

I started relapsing horribly in by December... I could feel the pain setting in more and more with each passing day. This time however the pain is more burning, and has actually spread into my abdomen, and down into my thighs and feet. A burning pain that spreads into these areas in conjunction with the deep aching rectal pain that goes up into my tail bone and lower back. I also have pain in my bladder and perineum. I am constipated all the time now as well and I give myself a Fleet enema at least once or twice a week it seems. My Pain Specialist gave me a prescrip back for Cymbalta 2 weeks ago. He also started me on Gralise 1800 mg at that time. I also have increased my morphine to 30 mg x 3 per day, and percocet 10/325 as needed.. But I am miserable, and suffering .. We did a Puddndal Block 8 days ago and it seemed to take some of the burning away for a couple days and thats it.. Then we just did a Ganglion Impar block this past Monday and it didnt do anyhing but make my nerves pissed off for 3 days! Now I am scheduled for a Caudal Epidural in 2 weeks, and a pre surgical physcological assesment for a SCS implant of a Boston Scientific pain management device. Its the new one with 32 leads that they implant in the sacrum.. my Doctor is one of 5 in the US that is able to implant this thing, but I dont know for sure if I want to do this yet... I am trying to figure out what nerves are diseased here before I jump the gun. Is this possibly a sacral nerve issue? I get burning in both legs and feet, and in my belly just below my belly button and radiating all around the bladder area. It seems its coming from more than just Pudendal nerves.. Sorry to be gross, but I have also noticed that sometimes when my rectum is full as in like when your constipated slightly.. My pain diminishes. Very strange. Almost as if counter pressure on nerve(s) stops pain?

I am moving into my new home in 2 weeks and i should be excited. Unfortunately, I am sick and miserable suffering from something that nobody can figure out what it is. My pain doctor also feels I should just move forward with this spinal pain stimulator implant now so I can get on with some quality of life.. I would appreciate any and all input!

MATT

[HerMajesty]

I can give some input on the spinal cord stimulator - Absolutely not! Not that it wouldn't help with pain...but you have no diagnosis of underlying cause at this time, and as the stimulator contains metal it precludes several types of diagnostic testing. Spinal stimulators, like meds, are for pain control but they won't fix you. As a self advocate you want to find a cause and a cure, am I right?
Things I see you haven't tried yet:

- You are already aware of one issue that might or might not be contributing to your pain, pelvic varices. I don't see that these have been directly treated. I am not very familiar with this issue because it was not a problem of mine, but please search the term in the message board search box on the upper right of your screen - I do recall seeing other patients with this diagnosis on the board; and some got specific treatments, alhough I don't recall the outcome. It might be effectively treatable, or a secondary problem indicative of another treatable condition.

- Physical Therapy. This helps in both diagnostics and treatment for some of us. It is a different approach than doctors use, and you will get information about the condition of your pelvic structures that you cannot get from any physician or medical test. It is also therapeutic for some people but not for others, depending on underlying cause. There's a PT list by location on the left hand home page menu.

- Access the list of PN specialists (list of doctors is in the same menu as list of PT's), and see a specialist in this disease, even if you have to travel to do so.

- Look through the topics list on the "pain management and medications" section of this board and make a list of medications you may wish to try out. If there is any way that you can put together a cocktail of non-narcotic meds that will keep you comfortable, it's worth the trouble. When you are in a severe pain flare, narcotics can be used on top of non-narcotic meds to prevent intractable pain. But, if you take narcotics daily, they build tolerance (I suggest googling "narcotic tolerance" for a full description of how this works), and their level of effectiveness is reduced. The wait times can be so long for proper diagnostics and treatment, narcotic tolerance is a serious consideration in pain control options.

- Get electroconductive studies done on your legs, to find out if you really have sciatic nerve involvement. I had a combination of leg and pudendal symptoms, and here are the issues I am aware of which might cause both:
...Spinal pathology. I had tarlov cysts, aka meningeal cysts aka perineural cysts, in the sacrum (most issues at S2 level); but since spinal pathology tends to reduce nerve conduction at any level below it, you should be checked for any lumbar or sacral pathology.
...piriformis syndrome. The piriformis is a muscle within the pelvis that is bipartite (split) in approximately 20% of the population. If it is in spasm it can entrap elements of both the pudendal and sciatic nerves.
...Joint injury to the pelvis (commonly reffered to as SIJD, sacroiliac joint dysfunction) - this is a diagnosis made by a PT, a good reason to see a PT. Especially with the weight lifting, which can strain the pelvic ligaments, your pelvic can get torqued into a variety of abnormal positions, and this can potentially lead to simultaneous impingement on the pudendal and sciatic nerves.
(to make matters even more complicated, any of the above 3 things I mentioned might be caused by or contribute to one of the other three).

That's all I can think of offhand...overall impression is that a lot of symptom control has been thrown at you with precious few diagnostics; and no potentially curative procedures. A spinal stimulator is another form of symptom control. Some people need it, but try to get the problem fixed first.

[janetm2]

Welcome Matt, Sorry for your awful journey so far. HerMajesty provides a great set of advice and although it seems like years to you you have early stage based on less than a year of trouble so hopefully better chance of resolution. I would like to second the PT as far as at least having the check out the SIJD issue and I think it would be less painful and possibly even release some pain. I was entrapped so PT before surgery was not helpful and at times horribly painful. Now however post surgery PT has been a wonderful help and SIJD is being addressed (SIJD started post surgery). Also second the pain meds issue. I have taken narcotics for years but intermittently so a tolerence problem but my hairdresser takes them constantly and has the tolerence problem. Seems early for a stimulater put inside you they external TENS units you could try but as HM says that treats the symptoms not the cause. Good luck,
Janet

[Thunderman69]

HerMajesty -

Thanks so much for the detailed, lengthy response to my Novel... Err , I mean post.. LOL.. I am quite surprised by the amount of generosity that I have found in complete strangers ever since I got sick, and it still takes me back when people like yourself take the time to help! I just want to you know that I have read many of your posts over the past months and the time that you devote to trying to help people is absolotely incredible. You must be an angel or something, right?!

Anyway, I did mention in that long drawn out thing I wrote that I saw a PN aware PT back in the summer (cant blame you for skimming through what I wrote... And I left out ALOT of important stuff.. ) .. I was worried she might do more damage than what it was worth at the time since I didnt know what was wrong me, and I was on my way to get the Potter MRI. I am going to get a new Script this week, and resume treatment with her immediately.

Speaking of the Potter MRI... I am going to post my MRI summary page by Dr Potter shortly (where it belongs in the MRI section) so if you get a chance I would appreciate it if you could take a peak at it.

I also mentioned that I have unfortunately been on narcotic painkillers for almost 9 months now.. So I am sure I have built up quite a tolerance and it is something that I will have to deal with down the road. Quite frankly, the way I look at it, I am in so much pain and misery that it is not a major worry point for me at this point.. I am hovering around 90 mg of Morphine per Day, and about 3 x 10 percocets on average for a total daily of 120mg on average.. I know thats pretty high... I am also taking Gralise (Gabapentin 1800mg/Day), Cymbalta (30mg/day), and Topimax (100mg/Day).. My Pain Doc just gave me the go ahead to increase the Cymbalta to 60 mg / day. i am crossing my fingers that I dont get the horrible VERTIGO that I got last year when we tried to go from 30 to 60 ... But at that time I was on Oxycontin and that was also making me dizzy so we will see... I also use ICE Every single day.. Its one of the best things I have found to get me through!!!

I forgot to mention how bad of shape I am in.. I have been pretty much bed ridden since December 28th. In my long post above I talked about how active I was prior to this Relapse or Flare or whatever it is.. Hopefully not permanent. What I was getting at was that I was worried that maybe I did something that re-injured or damaged myself worse than I was. I cant stand for more than an hour or so and the pain in the rectum radiates to the lower back and drives me to bed. I used to be able to lay on my back as well - I cant do that without the ache in my tailbone/rectum coming on hard. Even layin on my sides is becoming problematic..
Even more scary is that my thighs, legs, abdomen and feet burn. I even get a tingling sensation in my arms!! I have no idea what all this means but it definately appears I am now in worse shape.

MATT

[Thunderman69]

Thanks Janet!

I am not too familiar with the TENS UNIT.. I will do a search on this one soon. As far as the PT, I do agree with you that I need to get back on it with that. I am actually in pretty bad shape - forgot to mention that I am now basically bedridden.. , I know I am in the early stages technically but I think maybe I screwed up and went and re-injured myself and now I am paying for it. This is the trouble with taking Pain Mgmt advice and not looking for a real cause I guess. Here I figured I was feeling a little better, but in reality the pain meds were just a cover up.

My pain doctor really wants to do this implant. He seems to think there is nothing else that can be done for me, and this will give me my life back. I am faced with tough decision here as its real tempting when you are in intractable pain like this. Just gotta see the forest for the trees....

Cheers

Matt

[Violet M]

Hi Matt,

From one former weight-lifter to another, I'm really sorry for what you are going through. It would be humiliating to say how much I was lifting compared to you though, so I won't.

1. Based on my own experience and what I've read over 9 years of moderating the PNE forums, I agree with HM on the neurostimulator. If I had gone for one before trying surgery I likely would not have gotten my life back as I have now. Also, I do not know many people who obtained significant pain relief with SCS for pudendal neuralgia. If your doc has some extremely convincing success stats and lots of experience with SCS for PN then -- maybe consider it.

2. Originally my pain was localized but over time it spread throughout the entire pelvis, butt, thighs, feet, abdomen, etc. This was because muscles start to go into spasm and impinge on more and more nerves -- muscles included the levator ani, obturator internus, piriformis and psoas muscles. My central nervous system was so wound up I would jump when the phone rang. Piriformis spasm caused sciatica-type pain. Obturator internus caused severe inner thigh burning.

3. I've not heard of many people with PN symptoms having pain relief with embolization of pelvic varices - can't think of anyone right now actually. I'm not sure exactly what your MRI showed but I have seen several MRN reports that showed swollen blood vessels/back up of blood in the vessels around the area of the ST/SS ligament grip. Since the blood vessels run alongside the nerve a possible logical conclusion might be that if the ligament is compressing the nerve it may also be compressing the blood vessels and causing a back-up of blood that might show up on your MRI.

4. In regards to your response to PN block. The fact that you had some short-term pain relief is somewhat diagnostic for pudendal neuralgia. I never had complete pain relief from PN blocks even for a few hours -- just partial relief that didn't last very long. Just for your info if you decide to go for the epidural -- last I read, steroids in epidurals are not FDA approved and certain steroids are particularly worrisome. I know they are used all over the country but I've known people who developed arachnoiditis from them.
http://www.nytimes.com/2012/10/12/healt ... d=all&_r=0
Link that won't expire: http://preview.tinyurl.com/b8jjxxq

From the NYTimes article: "Moreover, the steroids, while approved for uses like relieving inflammation in joints, have not been approved by the F.D.A. for epidural injections, next to the spinal cord."

So, where to next? I think you have just proven to yourself that with lifestyle changes you may be able to lower your pain levels somewhat but the minute you try to get back into life the pain returns. Not sure, but maybe you want to have your SI joint/ligaments evaluated for any pelvic instability or chronic ligament strain given your history of heavy exercise/weightlifting and low back pain. Did your PT do that? (BTW, internal, myofascial PT made me worse.) Only you can decide if seeing a PNE specialist is next on your list. I know it was the answer for me but it was not an easy journey.

Best,

Violet

[HerMajesty]

Hi Matt,

Not an angel I just talk too much and sometimes it comes out in typed format instead of out of my mouth

I saw your MRN post although it stopped with the word "No" so was some of it left out?

deviated coccyx and an apparent change in the tone of the ligament on 1 side leads me to suspect that SIJD is at least a contributing factor. It would have to be confirmed by PT evaluation, and you would need a PT who evaluates the bony pelvis well: Some just do soft tissue / muscular trigger points, stretches, etc. and do not evaluate joint dysfunction. My pelvis had actually been torqued in a few different directions, but what really gave me significant relief was correction of a fixation of the LOWER pelvis, which is an area not all PT's check. It is possible to have a symmetric upper pelvis, but have the lower half (ischia) deviated to one side or the other. The deviated coccyx and unilateral ligament thickening kind of hint at that, although it not a diagnosis that can be made on an imaging study. It is also not a diagnosis that many PT's are trained to make; so here is a video of what it looks like: http://youtu.be/wgKnP-GQYiE . I would suggest showing it to your PT and asking her to evaluate for this pattern, or to refer you to somebody who can. I have noticed that many Sports PT's seek advanced training in balancing the pelvis; and if there is no Pelvic Floor PT in your area who has this experience, Sports PT is another good specialty to look at when trying to locate a PT who does Manual Therapy adjustments to the pelvis.

[helenlegs 11]

Hi Matt,
Welcome. Sorry you are having such a bad time right now, especially when so far you have done everything right. You could not have followed the 'script' any better tbh.
I know that the holidays and all that goes with it, often brings on more pain, especially with your house project and escalating symptoms that you are trying to make sense of.
It could be a number of things that have happened to make things spread anatomically.
The pelvic is such a complicated interconnected area that initial PN can cause secondary muscle spasms like piriformis as has already been mentioned. . . it does sound as if the sciatic may be involved with this escalation and the piriformis muscle is a prime candidate for that.
It can be exacerbated by a knock on pelvic 'sensitivity' through any initial PN, or an SIJD problem. Again as mentioned this can be checked by a PT although I can appreciate your reluctance due to your former reaction.
However, now you know this has happened in the past there will be other, maybe more time consuming but easier, 'softer' techniques that may help. At least you now know what doesn't. Not completely fair to have to find out, but sometimes a process of elimination is progress. It's a learning curve for all.
It could also actually be a form of CPPS . I'm not saying you haven't got a neurological problem, far from it but the pain reading signals may still have gone a bit haywire due to the initial neurological pain.Once that happens it can be a tricky thing to get back on track. However it is altogether possible.
I could be quite wrong but there may be an element of stress adding to your pain, which won't help the muscle issue. But you do have the medication and (wonderful) ice therapies in place so the only thing to add to that is some relaxation techniques, cognative therapy etc and the softer PT mentioned.
Because you have always been fit, I do think that can add detrimentally too with body condition 'guilt' and even depression. No endorphins kicking in either to help. . . .. . I would say as you have mentioned your role as provider, that extra guilt trip may be more than you should be putting yourself through just now.

Some kind of meditation, deep breathing (sounds silly but it can help in the short term) if you are at all into that and even if not would definitely help I think. Could you get yourself to the pool and just have a relaxing float about (just arms and leg flutter kicks tho'. . . . promise!)
I'm so full of it! have been promising that I will do exactly that and haven't.
I would like you to take some time to be kinder to yourself, as you say you have the advantage of being able to work from home and sounds like your boss is fantastically considerate.
Having some pain management therapy is never a bad idea. Stop sitting (and bending/squatting) as much as possible (I know you already have) try to relax Upper back, shoulder massages work for me. . .. just DON'T touch me BUM!!
Hope something helps and soon.
Take care
Helen

[Meliora]

I can relate to much of your story. My PN issues became severe in February as well. As far as pelvic varices....I had an embolization of my pelivc veins in December, and so far I still have pain. It might have helped a little, but so far no enough to allow me to sit, drive, etc. I have seen many many doctors with all I have going on, but have only been to a couple PN aware doctors. I tried PT with three different people and for me personally, I am not at all a fan. I actually was injured in pelvic PT and from that day on aspects my life has been very altered (my PN did not start from PT, rather she made is far worse.)

In regards to your tingling/burning in your body....I can relate to this as well (although after seeing a crazy number of neurologists....no answers for me.) I have heard of things like small fiber neuropathy, B-12 deficiency, etc. causing burning/tingling of nerves. I am not a doctor though and it could be a number of things that can cause tingling. Have you had an MRI of anything other than your pelvis or any bloodwork? You stated you live by Cleveland Clinic, they have a very good neurology dept., so I hear. You can also choose who you see, which I think is good. C Clinic has an interventional radiologist there named Dr. Mclennan, that treats Pelvic Congestion Syndrome. I had an interventional radiologist do my varices.

My ganglion impar block caused more burning for a time and made my behind numb. Not what I was looking for. I had more relief with the pudendal block. I am very curious about the SCS implant you mentioned. Who is a doctor that is doing this? I may need something like this. I am looking to try surgery, but with my ongoing nerve issues...this may help me as well.

I am sorry for all you are going through. PN is very difficult, but there is more to try to resolve your pain (I have to believe that too!)

[Thunderman69]

Morning - I had a real rough night so I was down and out for awhile..

Violet - Please! You are toooo funny!! I used to work out with guys that benched 500!!! You know how that goes - its all a personal battle right? I always loved the mono y mono thing.. I loved to run as well. Damn, I miss it soooooooo much. I literally get choked up thinking that a little over a year ago I was running almost 10 miles a day, and now I can barely make it up my stairs Gotta keep the chin Up! Anyways - Nice to meet you! I have read many of your informative posts, and they are much appreciated. I have learned so much from you and I am grateful. Thank you.
I am not sure if I will move forward with this Caudal Epidural either... I have read your previous warnings regarding this so I may steer clear now that I got some new ideas!

HerMajesty - My complete MRI summary is now posted in MRN/MRI Thread.. Somehow it got cut off so I edited it and fixed it.

Helen - Thanks for the info, and the kind words - glad to meet you! Yu are right that I am a ton of stress in that I am under an enormous amount of stress, and I am real good at internalizing it. Its just the worst time for me not be productive - got a big new mortgage, and two teenagers... YIKES!!! Even though I have the luxury of working from home I still have to travel from time to time, and I have been in bed for the last couple of weeks.. with no end in sight. If something doesnt change soon - its too scary to fathom..
You know, I really think that based on my MRI and my deteriorating condition that I fall out of the CPPS profile. I am now at about the one year mark of dealing with this and the pain is much more severe and debilitating especially now that I tried to put my body through a little normal living.. i.e... I hiked through the hills, and did some home improvement type projects (getting up on a ladder and hanging insualtion). Anyways, please take a look at the Potter MRI when you get a chance - I would appreciate your take on it.

Meliora - Thanks for taking some time to reply.. I am so sorry you AND everyone of us has to deal with this as well. It really has been hell on earth. So you and I have been suffering with this for almost a year, huh? I cant believe that there are poor souls that have battled this for 10,20 even 30 years !!! There is no way I could make that long - no way.... On a positive note it makes me feel way better that I met you and all the other fantastic people here that are battling. I really hope I can be of help to you or someone at some point.
Thanks so much for the information regarding the Clinic - I will start doing my research today!!! Might even set up an appointment. Please check your mailbox for the information that you requested from me as well as I am not sure how my Doc feels about having his name posted... people now days get real touchy so I would rather just PM it to you.

Matt