Now what?

[Desert Dancer]

Not a single kidney stone.  Not one. But the pain is still there and I can't function at all when it's got me in its grip.

The only thing the CT scan showed was a splenic artery aneurysm - GREAT! But 5 out of 6 doctors (my nephrologist being the exception) swear up, down and sideways that CAN'T be the source of my pain. I picked up my films and I was supposed to go see my vascular surgeon but he got called in to do a kidney transplant this morning so I've had to reschedule (happy to do so and hope it was one of us!). 

Yesterday was such a bad day. I ended up completely melting down while one of my nurses held me in her arms. I really think I would be doing well if it weren't for this issue on top of everything else. I feel like I might actually have some energy if this weren't draining every last reserve I have. I've never complained about my kidney failure, I've made a point of never feeling sorry for myself, but this is just too much. IT JUST ISN'T FAIR. Isn't kidney failure and dialysis ENOUGH to deal with? Isn't it?

Then to top it all off I'm on day three of creating my buttonholes and I was so tense from pain yesterday I ended up with my first infiltration. Icing/cake. Or should I say: salt/wounds.

If I don't start getting some answers I'm going to have to reconsider this whole thing. I can't live with pain like this for the rest of my life and nobody can tell me anything.

On the plus side, the plumbers and electricians are all done modifying my house, so I should be able to come home anytime now. Maybe that will change things. 

I'm so frustrated.

[MooseMom]

Chronic pain makes life hell.  It's a simple as that, and if I were in your position, I'd be doing everything I possibly could to find the cause of it and then eliminate it.  I'm sure that's what you are doing, and it seems like you are in a game of exclusion.  If you can't find out what is causing it, then at least find out what is NOT causing it.

Does the pain feel more muscular or neural?  Most of us have some gut feeling about our bodies (although with ESRD, those instincts can really go off track).  Do you have any idea at all what it could be?

Do your doctors at least treat the pain itself?

[calypso]

Chronic pain makes life hell.  It's a simple as that, and if I were in your position, I'd be doing everything I possibly could to find the cause of it and then eliminate it.  I'm sure that's what you are doing, and it seems like you are in a game of exclusion.  If you can't find out what is causing it, then at least find out what is NOT causing it.

Does the pain feel more muscular or neural?  Most of us have some gut feeling about our bodies (although with ESRD, those instincts can really go off track).  Do you have any idea at all what it could be?

I'm guessing she thinks it is from the aneurysm in her spleen.
http://en.wikipedia.org/wiki/Splenic_artery

Hope your surgery goes well and your pain goes away Desert Dancer. Sorry you're having to go through so much all at once.

[Desert Dancer]

Hi, MooseMom, Calypso is right: I am going on the assumption that it is the aneurysm causing the pain. Have you ever heard of 'Occam's Razor'? It is a scientific principle that states "The simplest explanation tends to be the right one". So rather than going on a snipe hunt in my abdomen I am going to assume I fall into the 20% of people who ARE symptomatic, and go from there.

If it's not that, then I don't know. I suppose my next step would have to be gastrointestinal since I have vomiting and other issues, though I don't think they're related.

As for doctors treating my pain, well... my primary doc is a naturopath and can't prescribe anything stronger than Vicodin. They don't touch the pain, so I'm not wasting my time taking them.  I've been able to get Percocet from the ER docs, but I can't go to ER every time I run out of effective pain meds. My nephrologist just seems to be staying out of it altogether. It's another reason I'm so panicked about the pain, because sooner or later if they can't pinpoint a cause... I think I'll be left twisting in the wind where pain is concerned.

[MooseMom]

Oh OK, sorry...I guess I misread your post.  I thought that since you said that most docs insist the aneurysm is not the cause that you agreed with them.  Yes, I think the aneurysm is a good place to start your investigations.  For when were you able to reschedule your appt with the vascular surgeon?

[Desert Dancer]

No, no, I wasn't really terribly clear about my thinking it was the aneurysm. But oh lordy, ME agree with DOCS?  Possibly, but certainly not right off the bat.   

Actually, I WAS willing to take their word for it right up front and that's why I then got an MRI of my spine to rule out any nerve issues. But then I came home and did some research and found that yes, in 80% of cases these aneurysms are asymptomatic. That leaves a pretty significant 20% to contend with, yet these doctors are all completely and 100% sure I must fall into the 80% and will not even consider that I may, in fact, fall into the 20% category of symptomatic patients.

In other words, a complete failure to pursue a possible cause based on your assumption that 80% = 100% and you can't possibly be wrong? Let's go chase some other, as-yet-undetermined cause instead and leave a trail of medical bills to find our way home? What color is the sky in YOUR world? 

The surgeon's nurse called from her home this morning to cancel me, and said she'd call to reschedule when she got into the office. If I don't hear from her by this afternoon I'll call her.

[MooseMom]

Yeah, I'd be wary, too, of any doctors who want to subject me to fancy-pants tests because they need a new BMW or some such thing.  I can't believe that if there are 20% of people with that sort of aneurysm who may be symptomatic, your doctors won't investigate that further.  That just seems dim-witted.

[Riki]

Doctors can be dimwitted, unfortunately..

When I was 15, I was put on a drug that was supposed to help prevent UTI.  I started seeing bright white spots in my eyes, there were days when I couldn't move, and in the end, I didn't know who I was or where I was.  Mom took me to doctor after doctor, and they all said that the drug couldn't be the problem.  A friend of my parents' is a nurse, and she has that big blue book that lists all the drugs, their side effects and interactions.  We looked at that, and I had ever side effect listed.  When we pointed that out to the doctor, he siad there was a 1% chance of that one drug causing every side effect.  Mom looked at him and said, "she's one in a million."  I ended up being admitted, and I think Mom wore the family doctor down, and he took me off the drug.  It took 2 days, and I was back to normal.  After months of not being able to move or see, not knowing where I was, or sometimes who I was, it took 2 days off the drug to be me again. 

I say, at 20%, keep at 'em.  I was in the 1%, 20% is nothing..  You know your body best, you've lived in it your whole life.

[calypso]

Studies show 5 out of 6 doctors now recommend your pain comes from the pain fairy, even if a CT scan shows an abnormality.

In other news, captain obvious recommends not listening to THOSE doctors.

[Desert Dancer]

MooseMom, you are far more charitable with your choice of word than I would be, but 'dim-witted' is a good one.

Riki, how frightening that must have been! I'm guessing that's not the kind of 'one in a million' you'd hoped to be.

Calypso: 

[Riki]

No.. but I am hoping that "one in a million" will somehow help me in my writing career.