Saturday, April 20, 2013

Bi-polar

Wednesday dawned full of hope and sunshine.  The weather was delightful and promised to be in the 70s (the week's been in a warming trend).

The hope was generated that I had an appointment with a new doctor at the Center for Neuro/Spine.  I expected info, answers and guidance.   I'd been looking forward to this for weeks!  The numbness is just so frightening...


When I came back the sun was still warm and bright, the birds were singing their little hearts out, and the daffs were at their peak of buttery bobbing brilliance.

I, on the other hand, was frustrated, angry and scared - again.  What I'd hoped for and what I got were so poles apart that I actually broke down and wept in front of the doctor.  I'd been told this practice specialized in neurological/spine issues of which DDD is one.  When I asked for info on my brain scan (apparently totally clean by the report and scans I picked up myself last month), he waved them away.  "If you've got numbness, you better see a neurologist."  Wha?  I said I was there for my DDD AND the numbness it causes.  He said, "DDD doesn't cause numbness."  And that was that.  Here I'd hoped to find a more caring practitioner of the neuro arts, but instead found another dipsh!t doctor.  When I mentioned the HUNDREDS of cases I've read on the internet, info from the Mayo clinic, testimony from nurse practicioners who HAVE DDD and numbness, he practically sneered and said, "Most everything on the internet are lies."   But if I had any questions about DDD he'd answer them (as he offered none).  So I had him interpret the jargon on the neck MRI.  (Total tokenism on my part: I'd learned everything about the jargon AND everything he bothered to tell me about DDD I'd already found - ON THE WEB.  He gave no new info or any reason for me to think he was worth the trip.)

In the end all he said was:  you've got it, it's not going to get better, only worse, the only thing you can do is get some PT to build your core muscles to support your spine and (wait for it), when you need surgery, then come back.  Riiiight.

Y'see - I've found out that Canton has ONLY 2 neuro practices within 25 miles:  One a bunch of neurosurgeons and the other a bunch of neurologists.  Now my experience shows me that the former is as uncaring and unresponsive as the latter and both are no better than my GP in this situation.  When I thought all my prayers were going to be answered at this last appt, I'd postponed (not canceled) that follow up visit to the neurologist.  That's sched'd for May 3rd.

Oh, I'll go.  Just to see what he says.  Me?  I've decided that based on all my (by now pretty darn extensive) reading that my intermittent (though persistent) numbness (everywhere) is caused by pinched nerves in my spine due to DDD.  Now we'll just wait and see what new denial the neurologist will present in May.  Should be hilarious.  I just hope I can keep myself from laughing...

Anyway, I was so angry when I got home I was ready to kick down a shed or something.  Luckily a cooler head prevailed and to find out my therapy-of-choice that day - CLICK HERE

The next day - AFTER that therapy (walks & garage visit), I was calm and up-beat and was going to do some garden work.  But first I needed to change a light bulb in the garage.  I got up the ladder, reached over my head and *snap*  just that fast the right side of my head, neck and arm when dead-fish numb.  Oh for the love of God!

It took me beating on it for a couple of minutes to get feeling back in it.  So much for optimistic and upbeat.  Hello total fear again.

The same thing had happened a week ago.  I thought it was an anomaly.  Crap.  I sat and fumed and thought:  I could go inside, rock and angst - or - stay outside (near 80s now), steer, and angst.   I chose the latter.  At least something would get done.  So I mowed the front an side lawns for a couple hours.

Friday the weather turned - really high winds and an 1/4" of rain.

Which froze last night.   We went from a high of 80 Thursday to 29 this morning.

And, at this very moment,  SNOW.

Honestly, like the weather, I just don't know which way to jump anymore.  I guess the only thing I can be thankful for is that at least I still CAN jump.

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I know these health posts are mostly unread, but keeping this problem to myself does me no good, spirit-wise (alone with no family support) or info-wise (clueless medicos).  I'm hoping one day someone with similar symptoms/diagnosis may stumble upon them and offer help or direction.  Until then, please don't stop reading the blog.  It's not all gloom and doom here at the Sanctuary.  Honest!

17 comments:

  1. I'm only sorry I CAN'T help you. What a b@#$%.
    I hope you find the answers you need. It sure won't come from the medical establishment. They NEED you to have chronic problems. That's what keeps them in business.
    Good luck

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  2. I'm so sorry I can't help you either. Your frustration comes through loud and clear in your post. It is so hard to find a good doctor who doesn't just treat you like a case number, and who actually listens to your ideas and concerns. It's a bitch to get sick.

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  3. No sweetie, your health posts are NOT unread. Your friends read them, and we care. I just wish one of us knew what to suggest that could make some difference for you because reading above gives me the same sort of feeling of helplessness that I think you must have. With such dipsh!t doctors who are afraid that the patient might actually know something they don't I'm not surprised you are angry and frustrated - where else to turn? Oprah?

    In England we now have the right to get an appointment at any hospital in the country which means access to centres of excellence (although waiting lists are long). I don't really understand the medical system in your country, so I don't know how you get to someone who knows what the hell they are doing.

    Changing the subject - your weather - sheesh, your poor plants won't know what to do with themselves. Bedtime this side of the Pond, huggles, J. x

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  4. What is DDD? I can't stand bad doctors and recently had a run-in with a dr who decided to ignore the advice of a specialist, not approve a necessary test for insurance purposes and stick us with a huge bill. I was furious. Prayers that your next visit is more helpful than the last.

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  5. Sorry to hear about your bad health. Not sure what DDD is. But, if numbness can be improved upon by some strenghtening exercises I`d go for dancing and yoga. I used to have problems with disc prolaps inthe spine some years ago and started to do bellydancing. Gentle all over exercise did the trick and after 2 years my back was even strong enough for me to perform some breath taking back bends. I went on to teaching the dance and to perforing in restaurants for a while. Then asthma struck and I had to give up on this type of dancing. Not sure if this info might help you to take care of your problems yourself. Sometimes you have to forego all medical expertese to find your own way of dealing with health problems. I did and I`m still not suffering anymore back problems. For that I`m now greatful. The asthma is a different story, but I`m coping with that too.

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    1. I'll second Sarina's suggestion to find a yoga class.

      Although I am not going to the weekly sessions at present I still try to do some yoga practise every day and find it's making a huge difference to my mobility and 'over-use pain'.

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    2. Sarina & Hobbit - Only surgery can remove pinching/painful bone spurs, alas. As for my flexibility - even the neurologist was impressed by my full range of motion as well as my posture and abdominal muscle tone. I exercise/stretch every day - have done most of my life. I'm glad yoga is working for you, Hobbit. You DO tend to overdo, y'know. And Sarina, I'm sorry that the asthma is limiting you. I know how you love to dance!

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  6. Kris, I can offer no advice beyond going to one of the world-famous clinics like Mayo but I do sympathize with you deeply. I would scare me to death to go numb like that. Can you figure out what kind of exercise brings it on.....like stretching or whatever and try to avoid those situations? Surely you will eventually find someone who can help you.

    Our weather has been crazy up and down here too. We have been hovering near freezing each morning and this morning it was 51°. I see next week is still going to be about 10 degrees below normal for us.

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  7. Thanks you so much for your visit and comments, everyone. You don't know how much they cheer and support me, especially when doctors are so uncaring. This whole thing wouldn't be as terrifying if I thought there was a doctor worried about me, researching for answers and keeping me advised. But no.

    Glenda - just standing still or sitting down can bring it on - it's really not activity related. I can usually exercise, work, move with no symptoms (or at least I discount them). It's when I try to REST that things go south. And usually something always goes numb at night when I sleep.... that's the most scary to wake up to.

    Sue & Allison - Doctors cover for doctors, insurance companies restrict access, and BigPharm see us as cash cows. And, let us not forget the impending medical apocalypse that is Obamacare. I only hope this is sorted out before THAT!

    Hobbit - I am developing an aversion to ANY doctor now and distrust is very high. The forums I read are FILLED with similar souls with the same callous doctors and no relief.

    Tammy & Sarina - DDD stands for Degenerative Disc Disease where the discs in the spine (usually cervical & lumbar) degrade, lose mass, compress and allow the vertebrae (which by now have spurs) impinge on nerves and veins. Pinched nerves probably cause the frequent numbness (though not according to neuros).

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  8. I have known some people to need a kind of fusing operation to be applied, to fuse two vertibres of the spine. I guess that`s what your doctor also was talking about. I`m sorry to hear about your degenerating disease. Unfortunately, even in our far advanced stages of medicine sometimes there is no known cure for certain conditions. Not a comforting news when you are on the suffering end, I`m sure. My asthma is something I contracted from a virus, and now I must live with it for the rest of my life, regulary taking my inhalers and nasal sprays to control the condition, in the knowledge that this will not get any better over years, but could get worse as I get older. I try the best I can to live as healthy as possible whilst also having to battle the onset of arthritis in elbow and knee joints. My dancing days are over for good, but I shall not give up living until I can no longer move or take a breath, hoping that this will be still far ahead in the future. I wish you all the best for the future as we both seem to be in the same boat now, trying desperately to hang on for dear life itself. Keep strong and do your own research. You might well find a glimps of hope through different aproaches. Good luck and keep smiling!

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    1. Wish I could hug you, Sarina, for this encouraging comment. Like you, I'd be okay working with the cards I've been dealt - but I've yet to see just what the heck the cards ARE! As for the healthy living/eating - you've seen my Kitchen page. I'm all for whole foods and healthy living. Thanks for the luck. :-D

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  9. Just another idea to throw into the melting pot. My boss who suffers with back pains had bought himself a clever exercise contraption that allows him to tip himself upside down for minutes at a time, thus eleviating the pressure caused to his spine and lower back. He stayes suspended like this for upto 15 minutes at a time, then usually feels much relieve from his symptoms afterwards. I have no idea what he calls this exercise contraption, but it seems to help his condition greatly. There are some helpful devises out there, so it`s just a matter of finding out and trying different aproaches. Don`t give up on life.

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    1. Me? Give up? No way. While my lumbar region is tender, it's the cervical spine that is (my assumption) my big problem. I've seen those upside down devices. Since the SIZE of my discs is the problem (deflated, degraded), there is really nothing to 'stretch out'. But I imagine hanging like a bat would be an interesting experience. Good for him for finding some relief. :-D

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  10. My friend Bert (who delivers the pony poo) has the bone spurs condition and last year had one removed that was growing inwards and pushing directly into his spinal cord. It was a complete success although such surgery is not without significant risk.

    Is the DDD in your neck connected to the ankle problems you told me about?

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    1. No, my ankle degeneration is due to an accident in the late 80s when I had no insurance and didn't realize I'd torn 2 of the 3 ligaments that hold the bones in alignment (since I didn't have surgery, they withered away). Now there is a lot of bone-on-bone action there and it's really starting to limit me. Man, my warranty sure didn't go as long as I thought it would.

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  11. Kris - Can't find an e-amil address to drop you a line, so I'll post here LOL

    I've been thinking of you and your numbness. And I have a question for you. Do you take statins - cholesterol medication?

    The reason I ask is because our GP from town put us on statins about 3 years ago. Everything went fine for 2.5 years, and then suddenly, about 10 months ago, I developed what the GP called "trigger finger" - basically I couldn't bend my finger without it popping out of it's socket. Not really painful, but very inconvenient. Then my knee, elbow and shoulder became extremely sore - I could hardly use them. I went to see local doctor, in order to get x-rays for arthritis, and RMan mentioned the statins. I had the x-rays - inconclusive - and we went onto a statin substitute called RyChol that she suggested. Kris - within a month ALL my aches and pains went away - and I can even use my "trigger finger" hand again!

    I've googled statins (e.g. http://www.statinanswers.com/effects.htm )- and I see that they can also cause numbness...

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    1. Thanks, Dani. I've shot you an email....

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