New Update, March 10th - Some encouragement from the Neuro Visit, very surprised

Hi David,

Been trying to keep up with your post and want you to know, you're in my thoughts and prayers.

You're a strong person and trusting things will get better.

Dave in Bartlett, TN

thanks, dave!

sephie - the spine doctor himself, blew off doing anything about the bulge in the upper spine near the neck, he was more interested in talking me into spine surgery for the lower stenosis issues, preceded by experimenting with a couple of different steroid shots. He said he uses the reaction from the shots, to determine what type and how much surgery is needed. But he also said that he didn't think the stenosis shown was anything other than normal wear and tear for someone my age, and that he didn't think it was effecting all the muscle weakness. He ended his spill by saying he thought it was still a neurological issue, not a spine issue. That makes his spine surgery suggestion an elective surgery.

Yes, if there is something going on with the kidneys, absolutely could be causing an increase of acute lower back pain. Any swelling there, would put pressure on nerves in the area and the lower spine. Had some special blood work yesterday that was targeting the kidneys, prior to seeing my uro. All 3 doctors agree, there's something going on in both kidneys, that it needs investigating, to rule out any chance of cancer or some other major kidney ailment. Having an Urostomy like I have, has always put my kidneys at high risk for problems, without a working bladder. I have known this for nearly 4 years since that operation was over. Quite certain the uro will check for infection first. No fun, they have to insert a long catheter into the stoma and up the tube, in order to collected non-polluted urine. Once the urine exits the stoma into the appliance, its very foul and unpleasant, and a breeding place for infections.

David

He made a big deal about the bulge on the first visit, but dismissed it on the second visit. So I have to assume that it wasn't crucial. But in a 3 minute visit, really didn't get to discuss the point. And they were hard selling the injections, I know they are expensive. The real point, is that I am very allergic to steroids, so that alone made it a deal killer. Second, both my oncologist and the neurologist strongly opposed the injections on grounds that it was too risky with what I have going on. So that was 2 out of 3 doctors being in agreement, both doctors whom I trust greatly. Not going against their advice.

I am sure my oncologist has a slated replacement while he's gone for emergencies. However, the way they are these days in general about pain meds, I will have to wait till he's back to replace the new script that was written wrong. Been through this before, and they will not let another doctor write the scripts.

I got what was needed from the spine doctor, if you remember, the neurologist sent me to him for an ortho related opinion. Now that he knows that these spine defects likely are not the cause of my hip/leg issues, he's able to focus back on muscular related neurological diseases.

Next on the slate, I see the VA doctor tomorrow for a 2nd appointment, 2nd time its had to be rescheduled. Monday, still another special blood test. Then Wednesday, back to the neurologist for the repetitive nerve conduction test, the one he said will be very painful and unpleasant. if this still doesn't shed light, will be having several muscle biopsies done, which I have been told are equally unpleasant.

In my fight to get answers and solutions, I am having to endure a lot of tests, scans, and blood draws.

It's been endless like this since the first of the year, and its wearing me down to be honest. But I don't intend to give up until I know that all bridges have been crossed to get the proper diagnosis, and hopefully treatments that will improve at least part of my QOL. It's not going to help everything, but I will take any level of improvement, as I can't keep going on with such severe level of pains.

What others need to understand, its not that anyone is wasting time, it takes time, especially with neurological based problems. Takes a lot of patience on my end too, which is something I am good at.

Earlier this morning, had a round of severe bladder spasms while washing some dishes. Seems like running water still triggers my brain, and though my bladder doesn't work or even connected, still getting signals. It was a level pain 9 event that lasted almost 2 minutes. The only thing that keeps me from coming apart, is that I know that it's a false signal, and that there is nothing in my bladder. Like a phantom pain. I still have 1-2 dozen of those a day, but most are mild compared to that one.

Last night, while watching tv and talking to my wife, the entire inside of my left arm started burning away. This is another neurological quirk I have dealt with on and off all my adult life. Feels as strongly as a bad sun burn. Even my robe brushing against my arm hurt bad. There's never any redness or change in skin color, just a steady burning on the skin itself. Neuro knows about this, and is taking that into consideration. Same arm (left) that I am getting more and more numbness in my left hand. It doesn't tingle, no prickly feelings, simply loses all feeling in my hand and fingers. Usually passes in a couple of minutes. Yes, I am chocked full of issues, lol. Nothing boring about my body.

David

Hi David,
I've been following your posts and continue to keep you in my prayers. Everyone tells me how strong and how much of an inspiration that my husband has been. I have to say you too are an inspiration to keep fighting, to leave no stone unturned and to keep on, keeping on.
Pat

David, sorry to hear that you're experiencing the problems with numbness...that must be very disconcerting and it's no doubt worrisome for your neurologist/oncologist. Hopefully one of them will get to the bottom of things soon.

Hoping you've also been able to secure an appointment with your urologist to see what's going on with your kidneys, and that you'll have an answer soon for that.

If the neuro winds up diagnosing your pain as CRPS, any idea what treatments you'll try. I remember you tried the Lyrica-type medications and pronounced them as ineffective, and you seemed to be on the fence about accupuncture. Do you think you would try the nerve meds again and consider accupuncture to help with the pain?

Sorry to read that the oncologist messed up your script but hopefully you'll get that sorted out. Paying an extra $30 a month to get pain relief is a bargain, and now that you have the VA disability all settled, this extra expense shouldn't pose any financial problems for you. Would the VA cover your pain meds (I'm thinking they wouldn't if the script is not written by one of their doctors)?

All in all, it sounds like you have a plan in place, and the neurologist will likely declare you have CRPS and will begin treatment. As you've mentioned many times, neurological issues take time to deal with so it will be important to give any treatment the neuro prescribes time to work.

David, that is very interesting (that the massage therapist mentioned you felt swollen around the kidneys). Will be interesting to learn what the urologist has to say. Must have missed the post where you mentioned the appointment with the uro...I'm a bit behind on catching up on things here at HW and don't get a chance to read every post.

Thanks for explaining how getting your pain meds through the VA would work, and your explanation about having more flexibility with the onc makes perfect sense. Fortunately, he (the onc) is working closely not only with you but with the other doctors, so keeping the coordination of your overall care through him seems sensible.

Neurologists feel about acupuncture the way orthopedists feels about chiropractors...they don't believe in them. My poor sister in law got hit by a car last summer and has been having back and hip problems since then. She also sees a neurologist because she had a concussion, and is still feeling the effects from that injury. She mentioned going to a chiropractor for her back/hip problems, and the ortho was adamantly against it. Yet, there are many who swear by their chiro but the key is to find someone who is really good and knowledgeable. Same with acupuncture...her neuro pooh-poohed acupuncture for her pain yet we have people in our family who have had great success with acupuncturists and chiropractors. Go figure.

I'm always a bit leary when a doctor quickly dismisses anything a patient shows interest in, especially when it's done without a practical explanation. My doctor (a lovely lady) knows that I'm a questionner and when she tells me "no" she doesn't even wait for me to ask "why"...she just launches into a explanation of why something wouldn't work or isn't recommended.

I went to a chiropractor and he ended up tearing my hip joints. Now I have to have surgery to repair them. I'll never go back to a chiro again. I've been trying to work around the house and my hips end up aching because the labrum is torn.

March 10th - Monday Update
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My VA assigned doctor called me this afternoon, and we spoke for a good 30 minutes. He told me that I no longer needed my non-VA PCP, as he is assuming the role as long as I was ok with the arrangement. And I am.

He sent a request to the heads of Oncology, Neurology, and Urology at the VA Hospital in Columbia. So far, he's only hear back from Urology. They said they were ok with me using my long-time urologist for anything urological (been over 7 years now). And that he is to bill the VA for any charges from this point forward, and they will cover it 100%. I said even if it turns out that there was cancer in my kidneys, requiring major surgery and post treatment? Yes. They would pay for it all.

He said he's pretty sure the Oncology head will say the same thing, as he admitted that they don't have anyone in Columbia as well versed in advanced PC as my own doctor, and that if I were happy with the quality of care with him, they would rather pay him directly.

On the other hand, they may want me to go to Columbia to speak to their Neurology head, as that was one area they thought they could offer better services. I am to wait until they decide to have a consult meeting with me in Columbia or not.

I find the whole process interesting to some degree. Seems like they want to do the right thing with me, and they realize the complexities in my case. The VA doctor stressed that in the phone call.

He then grilled me about all the ongoing tests/scans/etc. that have taken place since I saw him last early in December. He had no problem with me seeking immediate care, realizing that they were matters that could not wait for months for the VA to decide what to do.

He does want all my doctors to keep him in the loop with reports, copies of scans, etc, so that he will always know what is going on with me.

He assured me again, if anything unusual to pop up, to call him immediately, and he would find time to address my needs.

Feel like I at least have a good start with the VA, hope it continues this way. And I like how he will call me at home like this, saves another trip to the VA, and a lot of waiting time.

David

Hello David,

I'm happy for you and the things are working out with the VA. Keep a positive attitude!

You're in my thoughts and prayers.

Dave in Bartlett, TN

David, I'm glad to hear that you can proceed with your neurologist to continue looking for reasons for your pain and other problems. Really hoping that he comes up with something, and that's it's treatable.

And yes, 4 years since a complete physical is too long to go without checking out the "basics." Hopefully, once you've seen your uro and have the kidney concerns under control, you can then move on to the VA for a routine physical, and get all the other "systems" checked out. Just wondering out loud whether or not the "stuff" seen in your kidneys could be stones...they hurt like the dickens and can definitely cause problems in the back.

They do not believe they are stones, referred to as either very large cysts (there were lots and lots of them) or possibly tumors. From what I have read, they may need to do a CAT scan to determine which it is, they can tell if they are solid or liquid filled (like cysts typically would be), if not, then kidney biopsies would be in order - not looking forward to that.

Robert - just making forward progress, no matter how slow it seems, gives me new reason to hope. It's all about process of elimination at this point.
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At 11 in the morning, will be having the repetitive nerve test done on me, still another tool to hone down on what is wrong.

David

Glad to hear from you, Aimzee. It's been too long! Glad that's the worse that Ron's been dealing with since your last report.

Yes, glad to now have the VA in my arsenal of medical care. Yes, I really need the all-clear on the possible kidney issues. Be glad when my uro has a chance to investigate what the MRI's clearly showed, hoping for a totally benign explanation.

Give my best to Ron.

David