A miracle and a nightmare has happened 15 mos post op

To all -

I have had a miracle occur in my recovery, along with a nightmare which I fear could hold pretty unspeakable horror down the road. Im not sure which is the most important part of this progress report. Mark, if you are reading this, thing have gotten better and worse in their respective directions since we last spoke in Rocheter.

First, the miracle. ALL my leg and ALL my back pain have dissappeared. Well, 99.5% of it anyway. It appears that I started noticing mild improvements when I began doing toe-touches this past Spring. But, right after my birthday (April 16), almost right after the day I posted my "regret my ADR" post, I started getting a lot better. It appears every time I stronly stretched out my lower back, I'd hear tiny little "knuckle pops." MY leg pain would lessen dramatically. My back pain hasnt been with me since December. Perhaps my facets were locked up. Well, now I can "crack" my back regulalry and I have no or leg pain or at least 99% no pain..even when sitting. By all accounts you would think ADR was my cure and I should be shouting for joy. I had hoped that this was to be that post...as I told Mark a few weeks ago that I would be posting this soon. But there's a real ugly side to this that has threatened everything.

The nightmare: you may remember I had complained that I had lost sone sexual sensation starting 5-6 months ago. I eventually dicovered that every time I did toe touches, the very thing that got me out of the horrible leg and back pain, was driving me deeper and deeper into genital numbness. I finally knew for sure in early May (around a week after the NYC conference). I did another round of toe touches and not only did my genitals become even more numb, but they started becoming painful when I sat.

As of now, mid June of 2005, a horrible numbness has spread over my entire perineal regions. My penis is 80% numb. My scrotal area is 80% numb. MY perineum (the are between your legs) is numb. Occassionally, the peri-anal region (around the anus..gross I know) becomes numb. This numbness has grown and spread overthe past few weeks. Now I am ocassionally numb around the scar region where my incision was (I never noticed numbness there before).

I am talking really serious numbness..to the point where it "doesnt feel like its a part of me" sometimes. But it gets worse. It now becomes PAINFUL in all these regions when I sit. NOt only painful, but PHYSICALLY COLD. It feels like my penis is being squeezed in a pair of pliers when I sit down..just like the old vicing leg pain..but in the worst area us guys can imagine. This pain adn numbness has grown rapidly in the past 4 weeks and is so much more than it was in April I cant imagine. I have no more urinary urgency (as before) but do have ocassional bowel urgeny. It hasnt been too bad since I started taking 1/2 dose of Ultram to calm my guts down.

I will be calling my Dr. on Monday. I told him I was starting to have secxual dysfunction several months ago but he just said to "keep him posted." In the meantime, sex is physically possible but without any feeling at all I have become virtually celibate. I dont have erectily dysfunction, I just dont feel anything.

The cold thing really bothers me. It makes me wonder whether there is blood flow restriction. Yet I have no discolorations and I can see all the veins and what not...there is blood there. I just think the deep (cavernosal) blood supply is reduced. I believe this is a CONSEQUENCE of nerve problems and not the cause. The numbness preceded the coldness by months.

The combinationb of pain, coldness, and numbness has gotton so much worse in the last 12 weeks that I have to see a urologist. But my fear, and I think well founded, is that this will just be another "everything looks normal we dont know whats wrong with you." At least the coldness in MEASURABLE which forces an degree of objectivity to this. I dont know how far this numbness will go and what ele is in store. I am strangely calm but when I think about it I guess I should be freaking out. BUt the strange thing is, when something REALLY SERIOUS is going on, you sort of feel calm about it. Like there's nothing I can do...and what will be will be.

I remember when in the weeks before my ADR, I knew my worst fears were 1) more pain, and 2) sexual dysfunction. You start to feel like you are in the twilight zone when your worst fears, and ONLY your worst fears, keep happening. AT least the 1st one was defeated. I hope that a miracle saves me from the 2nd. I dont know which is worse. And I fear there is worse ahead. The numbness is growing and covering more area...


McBee, several people have prayed for me but to no avail so far. I may not have a "critical prayer mass" of praying people to make a difference. Feel free to add my to you and your friends' lists. Maybe it will work.


Paul

[Fortitudine]

Oh my goodness, Paul,
What an awful situation to be in. I hope you are in touch with Dr. Bertagnoli about this. You are so clear in explaining everything, I would hope you will be able to find a solution in fairly short order. I will keep you in my thoughts and prayers.

[Poncho]

Paul,

I am at a loss for words here. I certainly can not imagine what this is like for you. I hope you can follow up on this with Dr. B - perhaps since he is one of the most experienced surgeons regarding ADR and possible complications ( and he being your surgeon ) - perhaps he could shed some light on this.

In the meantime, I am hoping that maybe one of the nerves in there was pinched, or occluded or something and was somehow released during one of those exercises relieving the leg pain but perhaps going through some sort of stages of healing at the same time causing your current symptoms. I know that I am taking stabs in the dark here, but just thought I would suggest it as being a remote possibility.

I certainly hope this fades soon for you. You have been through enough.

[Rein]

Such a drag to finally get one thing pretty much going good and now have something like this occur! Sorry, dude!

It takes a lot for guys to talk about stuff like this, so you know Paul's in dire straits right now! I applaud you for getting past the personal embarrassment and self-consciousness of your situation to share all the gory details with us. This is the only way we, as a group, will be able to help and support each other. Please don't worry about how anyone might view your report to us. We're all in this together and talking about this will not only help you but all of us. This sort of thing is a potential obstacle for any of us and the more we share the more it improves all our chances of either avoiding or dealing with the same situation.

My first thought is to get to a neurologist ASAP. Although Dr. B may be some help because he actually performed your surgery (and should still have all the surgical notes, to which a neurologist may want to refer) I think only a neurologist is really trained to assess something like this and pinpoint exactly what's going on, which is the first step.

It seems to me as though I read something that sounded like what you're experiencing in the list of possible complications associated with ADR and anterior spinal surgery, although one would have thought these symptoms would have presented earlier.

One would have thought these symptoms would have occurred WAY earlier. But then, I hadnt done toe touches until 9 months later..so..who knows.

The complication from ADR surgery is supposed to be retrograde ejaculation. I have never read nor heard of a patient who had what I have.

And yet, all my symptoms are characteristic of causa-equina disturbance. They are also symptoms of prostatistis and pudendal nerve entrapment and pelvic floor dysfunction and piriformis entrapment of the pudendal nerve and..

Im not embarassed about this at all. Maybe because it stuff "works" but its numb and painful..sometimes badly,

To this day I still dont know if I should have ever had this ADR. Pain relief (after 15 months) at what cost?

[Alastair]

Hi Paul,
some of what you are describing is classic prostate problems. All the things that were going to go wrong, with you don't always show "Up Front".

You could do some pelvic floor exercises if you feel that would help, I'm sure you know what those are, some of our UK patients have had extremely similar symptoms to you which have resolved themselves within 12 months.

May be ease up on the toe touching exercise, and see if things start to return to normal.

If you were having pudendal nerve problems, then you would likely have bowel incontinence, to which I am no stranger in the past. But my ADR cured that.

I seriously think that this might be a trapped nerve may be, but I also think that this might rectify itself should you wish to be a little bit more patient. I can understand your emotions with these very strange sensations going on. I'm sure we all will be very interested to see what your doctor and urologist say.

You have never escaped from my prayer list Paul, you're in my thoughts and prayers daily with many others.
Best,
Alastair

[Harrison]

Paul,

Thank you for letting us know the situation. I hope this is just a transitional period, where your body is adjusting (yet again!). It must be very, very difficult, but at least you know you are among friends that care. I echo what folks here have so eloquently offered.

And yes, I will say a prayer for you.

[decker]

Paul,
Add me to the prayer critical mass.

I have been following your posts, and really appreciate you sharing your story.

However, some time ago a wise contributor to these boards sent me a PM suggesting that I try to forget about this whole back pain stuff as best I can and get on with life. It was good advice for me. Maybe you should try declaring yourself cured focus elsewhere. The sensations will return. Believe it.

dave

[letteski]

Paul,

As I can't speak to the nightmare directly but will share that I have many friends with sexual dysfunction working in the disabled sports community. There are many things out there to help people live normal sexually functioning lives and they work with Urologist good place to start. There is more to sex then just the physical aspect the mental piece it huge and with the right partner you may be amazed. I lived with a paraplegic for 3 years and our sex life was great! I know this is not your situation and I pray it never will be. Just wanted to let you know that there is hope and help for you.

I can speak to you in regards to what God has done in my life. I am proof that God has a bigger plan at least for me. I came very close in '99 to being a quadriplegic in a ski accident breaking my neck and in Oct�04 a paraplegic or even brain damage or death if I had hit my head while falling off the roof. God has a plan for you Paul and bringing your troubles, worries and fears to him is a great place to start. I will keep you high in my prayers. I do believe and have faith that he will heal you just turn to him he it there for you to.

God Bless

[JL]

Paul, this is tough news and I hope it subsides. I remember the doctor doing my discogram could move my toe by using the needle in my disc. I have faith that someone will know how to help you. Dr. Yeung spoke of a lot of nerve issues and reviewing my notes he spoke of L5/S1 groin pain from nerves. I just read your other post that you have seen Dr. Yeung and believe him to be the best discogram doctor. After hearing his presentation about nerves and his experiences, I have to agree and I would definitely make the journey to see him if I had a problem. I remember an article about sexual dysfunction related to L5/S1. I found it in Disability Medicine , The Official Periodical of the American Board of Independent Medical Examiners and I sent you the link. Bill