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New Update: 02-11-14: Something finally found

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Posted 2/4/2014 2:09 AM (GMT 0)
After waiting 10 days for the special blood work to come back, the neurologist finally read the special 3-D Neck MRI's I had done 2 weeks ago.  Not too good news, but at least something definitive to work with.

In the top portion of my spinal cord, below the skull, he found a suspicious area.  He said it was only one of two possibilities.  It was either bone mets in that portion of the spine, or some natural "damage".  Even with the 3-D views, he said it was hard to distinguish.  So he's sent the MRI to a top spine specialist in my area to get a second opinion.

I should be getting an appointment with the spine doctor soon, hopefully before the week is out, and review whatever is determined.  The neurologist said that if its mets, they would not be able to offer any type of radiation.  If it was some kind of other damage, he said it would involve a touchy operation, as apparently, in that part of the spine, there are a lot of nerves real close together.  He said he could see where the nerves that control the hips and legs are being pinched at times, either from narrowing or because of mets (assuming its mets).  He said either way, we need a really good opinion of what it is, and how to deal with it.

I told him, I never have had any kind of neck problem or injury, or any kind of neck pain.  In fact, my neck is one of my strongest parts of my body.

The blood tests all came out clean, for other exotic neurological possibilities.  Only thing good out of this news, is there is something that can be seen.  My fear was going through all this neurological testing and they not finding any thing to explain what is going on.

He said, of course, none of this has anything to do with my regular chronic pain, as he too, feels that's the direct result of my SRT debacle.  Two separate issues.  This has to do with my hips/legs giving out all the time.

So that's the latest.  When he decided to check my neck on my last visit, I thought it was a bit odd, but he said he was working on a hunch.  Looks like he pinpointed the right area of my body.

As usual, I take it all in stride.  Just one more thing in what's been a long and twisted journey.  When I had the neck/throat radiation back in 2000, I got slammed with 70 gys of wide beam radiation, so its definitely out of the question, that, and the rest of my radiation exposure.

David

Post Edited (Purgatory) : 2/11/2014 12:21:28 PM (GMT-7)

Posted 2/4/2014 3:07 AM (GMT 0)
I am reminded of a book - a guy who had PSA issues for years finally had a biopsy hit. He wrote a book something along the lines of "thank god I finally have PCa".

I read the book, but was a little concerned that the "resolution" of an issue was happily assigned to something that has such a wide range of outcomes.

Having also had spinal issues in the past from some severe traumatic injuries, and now having 4 vertebrae clearly involved with mets, I can say I'm happy that yours are not so easily definable. Maybe, unlike mine, your body just decided to get older in a hurry.

But that which we know is different from the fog of what we don't know, and worse, that which we don't know we don't know.

Hang in there!
Posted 2/4/2014 3:07 AM (GMT 0)
David,

At least they found something...and hopefully give you some options.

If it is a met I wonder if Xofigo could be an option for you.

Jerry
Posted 2/4/2014 3:10 AM (GMT 0)
Hope it's not mets, but with your PSA, just like with Sonny, mets are a strong possibility.

Even if they could do radiation, if those mets are not causing any symptoms (not sure in your case with the hip issues) would they radiate? I know they would if there were symptoms.

But, again, in your situation, since radiation is not posible/feasible, it is probably HT time.

Anyway,  hope they are not mets

Mel

 

Posted 2/4/2014 3:54 AM (GMT 0)
Not sure at this point, Jerry. Right now, they need to determine if its a met or something else. Always something, like being on a never ending train wreck.

My willingness to fight everything going on is ebbing away. Between the endless pain, the hip issue, the prostate cancer, my teeth falling apart, the always there bladder spasms - I just don't ever get a break from this. No way to live. Sure there are those worse off than me, but that sentiment doesn't really help me keep going. I have to live in the body I was born with, and keep dealing with one endless set back after the next. Not much motivation for me any more. Living to suffer isn't much of a life, gets old after a while. It will be 4 years this July with the chronic pain issue alone.

Glad they found something that can be identified, I was betting money that the neurologist was going to come up blank after all the scans and tests, but will give him credit for being thorough.

So once again I wait, for still another new doctor, and another opinion.

David
Posted 2/4/2014 4:00 AM (GMT 0)
David, sounds like you got a top notch neurologist.
If mets is causing the pinching, wouldn't HT be helpful by shrinking the tumor(s)?
Posted 2/4/2014 4:12 AM (GMT 0)
Don't know, squirm, I am not going to give it too much thought until they can first determine what I am dealing with. I am banking that its not mets, but it certainly is possible. All my recent bone scans, MRI's, CAT, and PET scans say there aren't any. But this was ordered as a special 3-D image, which the MRI operator told me was odd, because they normally reserve that type of scan for brain MRI's only.

David
Posted 2/4/2014 4:22 AM (GMT 0)
Thanks for the update David.
I know you're getting overwhelmed of the pain, I wish I had some real and useful advice to give you....Wishing you the best as usual...Hope you're able to take a break and get some laughter in, they say laughter is the best medicine.
Posted 2/4/2014 4:41 AM (GMT 0)
David - good to get something to work with.

Hang in there,
Andrew
Posted 2/4/2014 5:09 AM (GMT 0)
Any chance acupuncture could help the pain?
Posted 2/4/2014 10:20 AM (GMT 0)
David,
Not much more I can add. As always, wish you the best!
Jim
Posted 2/4/2014 10:30 AM (GMT 0)
That would be highly unlikely spot for a met, especially with your other scans clean. The big questions, can this, whatever it is, be causing your leg and hip pain. Seems unlikely, as well, but I am no expert. Stay strong, there is no other way...
Posted 2/4/2014 11:52 AM (GMT 0)
This doctor seems to be actively looking for the cause of your mystifying symptoms and that is a great positive. wishing you the best David.

An
Posted 2/4/2014 11:59 AM (GMT 0)
David, I'm glad that this doctor is determined to get to the bottom of your problems.

Understanding the anatomy of the spine helps in understanding that compression in the neck area can affect many parts of the body, including the legs, hips, arms and hands. In severe cases, cervical spine compression can impact the bladder and colon, and can result in an inability to empty either effectively.

I hope and pray that this spine doctor gets to look at your MRI very soon and is able to see you quickly so that you know, one way or the other, what is going on.

You continue in the thoughts and prayers of many here.
Posted 2/4/2014 12:38 PM (GMT 0)
David,

Great to see the progress being made for you. I know you're glad to finally have a doctor who is determined to get this problem resolved.

As always, you're in my thoughts and prayers.

Dave in Bartlett, TN
Posted 2/4/2014 1:12 PM (GMT 0)
SpecialLady - Well it sounds like the doctor thought that the spot he saw could very well be causing the issues with the hips due to the nerves being pinched.....at least it is another step -away- from a diagnosis of ALS.
Posted 2/4/2014 2:34 PM (GMT 0)
David -

At least it wasn't another situation of a doctor coming in and saying "Gee, I dunno."

There's an image I believe I once posted in another thread and I want to repeat it here.

A boxer is boxing with an opponent in a dark room. The opponent can see the boxer but the boxer can't see the opponent. So the opponent keeps pounding on the boxer, while the boxer keeps swinging wildly in the dark, maybe only occasionally hitting his opponent.

Suddenly the lights in the room are turned on. Now the boxer can see his opponent clearly, and every blow the boxer now throws lands right on target.

With what you have learned so far, maybe the lights haven't exactly been turned on, but it seems like at this point at least you've been given a flashlight.

It's a start. At least this doctor has come up with something, and the road may get better starting now.

Keep hanging in there, as tough as it may be at times. You know we're here for you.
Posted 2/4/2014 3:43 PM (GMT 0)
Very interesting find. I hope its not a mets problem as there are no options on the table for that. After now about 2 weeks of painful "pinched nerve" feelings myself I just marvel at those years you have dealt with nerve pain. It does get old and quickly at that.
Posted 2/4/2014 3:48 PM (GMT 0)
Thank you one and all, appreciate all your good thoughts. In a deep funk today, having less than 3 hours sleep didn't help, and that was plagued with bad nightmares.

Still on my sabbatical from HW for the most part.  Will update again, once something has been determined for sure from the MRI, and hopefully when a treatment/fix can be found.

Best to all,


David

Post Edited (Purgatory) : 2/4/2014 9:37:34 AM (GMT-7)

Posted 2/4/2014 4:43 PM (GMT 0)
Well, hurry it up David...we need you back here...

 

Posted 2/4/2014 6:34 PM (GMT 0)
David, thanks for the update...hopefully this is not a met, but now at least you may get some answers. Hoping you can move forward and get some relief.
Terry
Posted 2/4/2014 7:13 PM (GMT 0)
Sounds like the doctor may be on the right track and hopefully the surgeon will be able to clarify things a bit because, although cervical stenosis and disc herniations typically cause upper extremity and not lower extremity problems (painful and weak arms, shoulder trigger points, etc), cervical cord compression (compression of the spinal cord and not the nerve roots exiting the sides of the vertebra) can cause exactly the type of lower extremity problems you describe. A foraminectomy and/or laminectomy with or without discectomy and fusion usually can reverse nonmalignant nerve compression of relatively recent origin. The key is to get the pressure off the nerve(s) and hope they plump up and regenerate.

Lumbar nerve or cord impingment is the more common source of bowel/bladder misfunction and partial or complete lower extremity paralysis (e.g., cauda equina syndrome (easily identified by MRI)). I'd certainly want to be sure the lumbar and cervical MRIs are studied meticulously by as many trained eyes as you can reasonably get. MRI reads are subtle and subjective. Some are misread as benign when they are not.

The fact that your neuro was smart enough to look up instead of down suggests he knows what he's doing and has ruled out the lumbar levels?

Good luck and keep us posted on the surgeon's opinion.
Posted 2/4/2014 9:06 PM (GMT 0)
Thanks again, for all whom have posted.

Been trying to shake very negative feelings today, been quite a battle. I do it best by keeping my self busy with anything, everything, to keep my mind from wandering down the wrong path.

Good info there, AJ.

And yes, my oncologist had great reviews about this neuro doctor from the start. And once he ruled out the more common neuro issues, he surprised me with wanting a special neck MRI. Didn't make sense to me, but now its starting to.
-------------------
UPDATE

Got the call today. Will be seeing the spine specialist on Monday, Feb. 17 at 1 pm. The neuro doctor wanted it sooner, but the other doctor's office said that was the best they can do. The spine doctor has all the recent scans to look at, plus all the notes from my oncologist and neurologist. Hope he's equally sharp.

Once his evaluation is done, the neuro will give me an immediate follow up appointment. So things are moving along pretty good.

David
Posted 2/5/2014 12:47 AM (GMT 0)
The big questions, can this, whatever it is, be causing your leg and hip pain. Seems unlikely, as well, but I am no expert.

it sure could be. a good friend of mine was having problems with his legs and lower back. he was a recovering addict with almost 30 years clean.

I remember he was really worried about his doctor's appointment because he thought he pinched a nerve and he was afraid the doctor would put him on muscle relaxers. by the end of the day he learned that he had two golf ball size tumors at the base of his brain that were inoperable.

the doctors gave him six months to live but he made it a bit longer and he went from a cane to a wheelchair before he died last year. the good news is he was never in any excrutiating pain and he held a "wake" at his house a couple of weeks before his death and he was at peace.

ed
Posted 2/5/2014 1:00 AM (GMT 0)
David

Thanks for the update. I'm glad that this doctor has found something you might be able to act on - even if the path forward is not yet clear. I hope the new knowledge leads to something that can be done to alleviate your symptoms.

best,
David
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