Leg pain anyone?

I had my seed implants done about 2 years now, and all of my follow up psa numbers have been nearly undetectable..good news. After about a year all of the known common side effects had subsided, but I have been left with severe leg pain. My doctor believes the proximity of the seeds to nerves caused damage that so far has only worsened.

Has anyone else had this experience, and if so, what have you done to find relief? I certainly dont complain very often, especially in front of my family, or at work, but the thought of this being ever present is really depressing.
The pain is quite severe at times, and the best way to describe it is as if a car was parked on my thighs, and the pain shoots in waves from my hips to my feet. Advil does nothing, and I am not a big fan of opiates, but I do keep tramadol handy for when it becomes unbearable. Any insight is appreciated. I am only 50 years old, and 20 or so more years of this is not a pleasant thought.

Thanks

JackH,
You are certainly correct,I'm getting the feeling that some of Thea's doctors are doing a great injustice to men that should be on AS.
What a shame.
Jack

Well, sorry to hear of your 2nd thoughts...it's pretty common. By the way, please give some thought to "paying it forward" to others by sharing your story so that someone else doesn't make similar mistakes...

So your doctor commented about the seeds being too close to a nerve. At 2+ years, they are done, for all intents and purposes, radiating anything. Was this doctor, by the way, your radiation oncologist, or another specialist?

tulmkr said...
The pain actually started within the first 4 months, but I attributed to a short term affect. Sadly I havent had a single follow up call from either my urologist or the facility that did the procedure. I have called many times to no avail. I have resigned myself to dealing only with my pcp,...

Whaaaaat??? Multiple red flags here. I'm at a loss here as to where to start. If you were having pains way back then, your treatment provider should have looked at things like blood clots, which can happen (mostly in short term) following seeds. (I thought you said all short-term effects had subsided.) I really don't know where to start...I'm absolutely baffled that you haven't had any contact with the brachytherapy provider since treatment. Sounds shady.


As far as "paying it forward," it seems like your story isn't about not having "life-saving treatment"...rather, it's about the next guy understanding whether "life-saving treatment" (or any treatment) is really needed or not before jumping off the cliff... Think about it; you could help the next guy.

Post Edited (JackH) : 3/15/2017 10:40:09 AM (GMT-6)

I think they are afraid of a lawsuit as they admitted quite frankly what they think happened...not much chance a law suit will do much good tho...Jack H..of course he would have second thoughts...no shame..{did not say that was your intent}.why would you be sorry for him on that point?...........Anyway here you are...you know it...move forward..follow up on PDL17 post...you will get to the bottom of this and find relief....The cancer seems to be gone...that is more than just good news...that is fantastic news...congrats on that...take care....

Firstly, we already have enough enthusiasts hawking their choice of treatment or non-treatment regardless of how appropriate that may be at the time. Please do not climb up on that soap box with anybody. You have done what you did, now it is time to move on.

I woke up with severe Charliehorses in both upper thighs just last night. They were so bad that I almost fell over while taking my nightly piss. (Never peed at night before the RP surgery) My thigh cramps were due to my hiking my daily 7 miles through snow wearing a pair of Irish Setter boots. Normally I wear shoes, rather than boots.

OK, if the nerves are screaming at you, that means they are damaged NOT dead. Welcome to my world. They can and will heal, but that will take quite some time. I have several damaged nerve trunks that simply scream at me all of the time. Also osteoarthritis from head to toe due to a lifetime of very hard physical labour (not done yet, either).

So what do I do? I hit my little Pax 2 vaporizer a couple of times, then go back to work. That is one of the medical applications of cannabis. It dulls the sensation of pain enough to allow you to continue doing what you need to do. This allows people with severe pain to function 'normally', even those with scripts for opiates. Unlike opiates though, cannabis does not remove the pain. It just allows you to tolerate it.

In your case, you will need to go back to what you used to do regardless of the pain. You will have to work through it even though it hurts. Sorry, but that is how you will heal your nerves over the long term.

Regret over treatment choices, filing lawsuits and the like will not help at all. Forcing yourself to return to normalcy will work, however., though it will indeed be painful.

trailguy said...
Firstly, we already have enough enthusiasts hawking their choice of treatment or non-treatment regardless of how appropriate that may be at the time. Please do not climb up on that soap box with anybody. ...

Huh? Hawking? What soapbox? I for one appreciate his story.

It's a real hassle....but go to the ER and tell them you have leg pain and you've read that blood clots can form due to the treatment you've had. Tell them you want to know that there's no clots in your legs. Insist on it. (this puts them in a box. at this point, they are almost obligated to check for clots, because god forbid they be wrong and you be right at that point. it's not a position they can afford to put themselves in).

The test for clots is easy smeasy. It's an ultra-sound of your legs that takes about 10 mins. They will know the results immediately.

Do not expect any help from your uro or the RO. You are no longer their friend. It's not about lawsuits....(malpractice suits are more and more uncommon...and the rewards are capped...something one doesn't hear about on TV from our politicians, but I digress)....You are not their friend because doctors (being human) do not like to be reminded of past failures and/or mistakes. You standing in front of them...puts them in an awkward position. They don't like awkward positions. who does?

the pain also sounds like the kind of pain I get when I take Cialis. It's excruciating pain (puts some men on the floor) in both thighs. You might google what that is about. It's not rocket science as to what causes it. It's a well known phenomenon .... and it might be something that can be treated....at this point...we're throwing the kitchen sink at this pain....by process of elimination....so you know exactly what it is *NOT*

If it is in fact...nerve pain....lean on your PCP. (you trust her). Let her know...emphatically, yet tactfully....that this is not acceptable....and you want to try *everything* that medicine can offer to stop it...regardless of how remote....short of a pain clinic. You want to *know* what's causing this....

There are doctors that deal with nerves. Get to one. Find out from a nerve doc what can be done to track this rascal down...pin it down to with as much certainty as medicine has to offer. Is there a test they can run to see if there is in fact nerve damage? If so...what nerves are damaged? And how? is there a test that can be run to show this is .... definitively...the case...

If your PCP cannot help you...which it sounds as if she really cannot or she would have by now...and she also has her own....theory....which...once docs have....can be cumbersome and awkward....to try and get them to help more....then go to the nerve doc without her blessing....and if you need a referral from her, get one...and if she won't give you one...call those caring RO's and tell them you need a referral. Someone will give you one.

Speaking as a long term chronic pain patient (started as sciatic nerve pain, that's milder now but also have more diffuse muscular pain): first is to make sure you've exhausted all the traditional medical means of dealing with it. Sounds like you may have.

I do find it mysterious that you think any doctor should have called you. I would think you owe it to yourself and to the original doctor to meet face to face and just tell him what happened, if you haven't already done that. If you were put off by office staff or nurses when you called previously, call back. Just my opinion.

The things that have worked for me: physical therapy (in a warm pool!), swimming (the best), massage, exercise of any sort, and an MBSR course (mindfulness based stress reduction). Many local hospitals offer them, and if you're left with bad pain after exploring medical options, it will definitely help you deal with it.

Nerve pain sucks, big time. The only thing that saved my sanity was discovering that if I leaned up on a tennis ball against the wall at just the right spot, it masked the pain for a good while. A good physical therapist or medically based massage therapist might be able to give you some guidance with that kind of thing, but watch out for crazies: too many massage therapists are full of bad advice.

-- Carolyn

cspivak said...
I do find it mysterious that you think any doctor should have called you. I would think you owe it to yourself and to the original doctor to meet face to face and just tell him what happened, if you haven't already done that. If you were put off by office staff or nurses when you called previously, call back. Just my opinion. -- Carolyn

He stated in the sixth post of this thread....2nd sentence....

"Sadly I havent had a single follow up call from either my urologist or the facility that did the procedure. I have called many times to no avail."

this is *not* for lack of effort on his part....that's *my* opinion.


Also....it can be HARD to go back to the very doc's that screwed up your life....expecting different results this time..