Latest Update, the search continues....01/22/14

Mel, not necessarily. IT band syndrome is one of those often-overlooked problems, as is a condition called piriformis syndrome which mimics "true" sciatica. Physical therapists more familiar with sports injuries are generally quicker at catching these conditions. Since Purgatory's therapy is being done at an oncology rehab center, I wouldn't expect them to think along these lines.

Mel,

To assume that the doctors think of the easy stuff is something we all do, but after my gout issues, I'm not so sure. My GP prescribed a med last year that my insurance now refuses to pay for (as of 1 Jan they revised the formulary). So I was paying $508 out of pocket instead of $7 for January.

My uro suggested a different drug (remember that his patients are mostly old farts like me, while the GP deals with younger families - his practice does not accept Medicare) and a minimum of 3 liters of water a day.

Result? The drug will cost about $200 out of pocket, and the bowel issues are down some, even with all that water.

To answer some questions raised on a couple of posts here that I normally wouldn't see when I am logged in. Yes, the obvious things have long been discussed and eliminated from the mix.

In the past 2 years, I have seen a top notch ortho doctor who ruled out any type of bone or spine problem. Went to a top gastro doctor who eliminated possibilities from that arena. Went to two physical therapist doctors, of whom never could give me a straight answer about anything.

And in the award winning oncology rehab program I have been in for almost 3 full years now, they have some excellent physical therapists, that don't have a clue for any of this.

It hasn't been for a lack of trying. I still go to PT, even though no forward progress has been made in all that time, because I am more fearful of the results if I didn't go, taking even bigger backward steps. When I took a break from it for about 2 months or so, I went downhill even faster than my current pace at hand. It's hard to go each week, it takes extra effort on my end, because I usually pay the price for 2 days after each session, with even more pain to deal with.

I enjoy my monthly 2 massages I am getting, they feel great at the time, but usually by the time I walk back to my car, all bets are off, and the pain is exactly where it was before I started. This frustrates the massage person, as she was hoping to buy me hours, if not a day or two of relief.

Think people have to face and accept what I have come to accept. What is going on with me, is way out of the norm, and its truly a complicated set of circumstances.

I realize that there are a few men here, whom PC cases are much more advanced then mine, and dealing with critical direct PC related issues. But that would be expected with some of the more serious G8-10 cases.

But I know there's hardly anyone else here, that has had such and endless struggle from day one, with little if any break along the way. I mean right out of the box from surgery, with all the never ending stricture and catheter issues. Then the entire radiation debacle, which in turn led to the bladder damage, the Ostomy surgery, the chronic pain, the always present chronic fatigue.

No wonder my doctors feel that my body has been severely traumatized by all that has been endured thus far. No wonder with the nerve damage from the radiation damage, that these neurological problems have surfaced and worsened over the past few months.

It's easy for someone to want to blame a high and climbing PSA number for a convenient answer to these woes, but my oncologist does not feel that its the case at all. The scans keep coming up clean, and there is no doubt, that most of what I suffer is from collateral damage that was done in the name of treatments.

I wish that all I had to worry about was the PC itself, that would be refreshing at least, and less complicated sounding.

Right now, all I can do is keep on keeping on. As long as this current search doesn't come up empty handed, I will feel like a victory was won.

David

Sunday:

getting ready for the morning's MRI test, still hard to believe 2 in the same month, that's a first for me. the thought of being put into that narrow tube again so soon is not the most pleasant thought to me, but I know the neuro doctor needs every piece of evidience possible in order to do his job correctly.

had killer back aches all day, even now, sitting in church, the hard wooden pews (no padding on back or seat) start it up within the first 10 minutes or so. hate to have to bring a cushion, as I am already dealing with a cane in church. Our real church building is being undergoing a major rebuild the past 5 months, and won't be ready to re-occupy until perhaps July of this year, so we been meeting in the chapel of a large funeral home.

not sure when my next follow up will be, the people that drew the special blood tests said it could be 5-7 business days to get the results. if I am lucky, will see the neuro again by the end of the week, if not might not be to the following week.

david

May have to, the pain has been excruciating recently in church. by the time I walk up to take communion, can barely walk, even with the cane, have to hold onto the edges of the pews walking.

David, please speak with an usher or the priest and let them bring the sacrament to you in the pew. We do it all the time in our church with folks in wheelchairs or who are simply not able to walk safely up the aisle to receive Holy Communion. Please don't put yourself at such a risk and speak with an usher next Sunday.

Well, today's MRI was a little more uneventful. They know me too well there, that's not a good sign. Was known by first name by the operator. This one took 25 minutes in the machine, and at least it wasn't done with contrasts, was glad for that. In the last film, she did the whole thing in 3-D, which I had never heard of before. She said they only do 3-D for brain scans and neck scans.

She thought the angles and shots the doctor ordered were weird, but when I told her who my doctor was and what his specialty was, she lit up, and said he was one of the best doctors she knew, and that if he were on a special search, it had to be for a good reason.

Now I will see when my follow up visit will be, I know they are still waiting for the special blood work to come back, so it may or may not be this week.

David

thank you, lotsahope. your name says it all, we all need "lots of hope", bet commodity going with PC
hope you are doing well

Thank you Barb.

Your story really upset me. I guess they didn't have any kind of valet parking (free) like many of the hospital's here offer? Assuming you have a disabled/handicap tag on your car, in most areas, you can get away with certain parking restrictions. Here in SC, with such a tag (I have one), you can park in any space, even a 15 minute parking space, and stay as long as you want. So if there aren't any handicap spaces handy, I can park anywhere. At PT, at that hospital, I am entitled to park for free in the covered doctor's garage, just a few feet from the elevator where I go to rehab.

Sounds like that was very unreasonable situation you were put into, so sorry.

Yes, waiting now for the special blood work to come back to the doctor, then I am sure they will have the next follow up visit scheduled. I actually have the CD of yesterday's MRI in my possession to give to the doctor.

We are about to get hit by a rare and dangerous winter storm, with snow predictions of up to 4" and ice up to 1/2", plus temps in the 20's, and high winds. May get ugly here. Debating about going to PT or not this morning. That would not be worth wrecking my car over, or getting stranded in a storm.

Hopefully you can get back to the doctor. Remember our deal? You don't give up, I don't give up. I don't give up, you don't give up. We have to keep fighting and trying and trying to live in between the fighting parts.

You have already proven your toughness and tenacity a hundred times over. Like me, just keep dealing with the day at hand, and no worries about tomorrow.

Try to get in touch one way or the other with you later.

David