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I need some answers ... can you help?  Actions...
Posted: by BSP on Wed. 12 Sep., 2012 at 11:42:24 PM
I have never had a problem with the Ontario medical system, until now.  Once you need a specialist you are up the creek.

2 1/2 years ago my daughter (who is now only 39) started having troubles with her back.  Her doctor told her to rest and it would get better ... it didn't.  He waited 1 year to send her to a specialist ... then of course was the 9 month wait to see the specialist.  By now she had severed neuropathic pain.  She was too far gone for them to do any surgery, so now she has been referred to a pain management specialist.  That was in April.  She is still waiting.  As she waits the pain gets worse.  She has been bedridden for two years.  Because of the disks in her back she is unable to sit, so either has to stand or lay down.  While she waits she is getting progressively worse.  The pain is worse.  She is depressed.  She lays in bed crying in pain.

Anyone been through something similar?  Do you have any ideas what we can do to move the process along??  Our one thought is to take her to ER and leave her there, but that will be an ordeal for her.

She keeps saying she doesn't want to live in pain anymore.  Today she asked me to put her out of her misery!  I am so angry, frustrated, sad ... I just don't know what to do.

Any ideas???

If I was rich I would fly her to the Mayo Clinic, but I am not a rich woman.

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wow...  Actions...
Posted: by sue_43 on Thu. 13 Sep., 2012 at 12:20:21 AM
In reply to: BSP "I need some answers ... can you help?"
so sorry she has to deal with this.   if i were her Id go straight to the ER....maybe they can at least guide you to a dr that CARES.  dont know where abouts in ontario u are..but i would not be treated like that here.   The fact that your dr waited one YEAR to even Do something is all the more reason to find ANOTHER DR!

good luck

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I think  Actions...
Posted: by RubyStar on Thu. 13 Sep., 2012 at 1:27:02 AM
In reply to: BSP "I need some answers ... can you help?"
the answer is to get second, third, fourth opinion. Go to a clinic, emergency or whatever it takes, no one should have to wait that long but it seems to be common unfortunately.

It seems we have to be our own advocates, doesn't matter where you live. 

You can never do a kindness to soon because you never know how soon it will be too late. -Ralph Waldo Emerson

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I'd make  Actions...
Posted: by Sayso on Thu. 13 Sep., 2012 at 8:44:55 AM
In reply to: BSP "I need some answers ... can you help?"

sure that three things have been done. One, make sure an x-ray is taken. My SIL died thinking that she had back pain when she had cancer, so make sure that your daughter gets an x-ray. Two, get another doctor's opinion. Three, if the x-ray is clear and the second doctor says the same as the first, go to a chiropractor. Keep in mind that traditional doctors push pills and surgery and need to learn a lot about back pain.





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We've done it all ...  Actions...
Posted: by BSP on Thu. 13 Sep., 2012 at 9:51:03 AM
In reply to: Sayso "I'd make"
She has CT Scans, MRI's, Ultrasounds.  We have had a second opinion who agreed with the first neurosurgeon.  There is nothing they can do.  She is being sent to a pain management specialist ... but its the wait.  It's been 6 months already!!  How does a person keep waiting when they are in such horrible pain??  I need to know how we can move the system along more quickly.  One thought is taking her to the ER (1 hour away at the specializing hospital), and leaving her there.  Walking out until they agree to get her into the specialist NOW!!!  This would be a horrible ordeal for her.

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What  Actions...
Posted: by Sayso on Thu. 13 Sep., 2012 at 11:05:33 AM
In reply to: BSP "We've done it all ..."

happened when you went to the chiropractor?

Have you tried acupuncture? 

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so sorry....  Actions...
Posted: by Anne Hathaway on Thu. 13 Sep., 2012 at 3:17:36 PM
In reply to: Sayso "What"
Is she currently on pain medication and if so, is it giving her any relief?   If she is on pain medication, can the dosage be increased?   

Anne Hathaway
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...  Actions...
Posted: by dreamer16 on Mon. 17 Sep., 2012 at 3:27:48 PM
In reply to: BSP "I need some answers ... can you help?"
I understand your dd's frustration with all of this.

I too have back pain, and mine is permanent.  I also had a doctor who did nothing for quite awhile, and that's what led to mine becoming a permanent condition, at least, according to the specialists who I did see much later.

Obviously I don't know the exact details of your daughter's condition, but I too have herniated disks (three), as well as degenerative disk disease, and I still have this.  These are only two of many problems that I do have with my back.  Nothing can be done about this that the other problems won't undo any treatments done on this.  So, I just have to live with this.

My doctor did do me one huge favour in the beginning, and for that I'll be forever grateful, although I wasn't at that time, and that was that he kept up on all of the newest treatments and research, and realized that bed rest was the worst thing one could do for a damaged back.  He forced me to walk for half an hour three times a day.  This was unbelievably painful.  So much so that I often had to take someone with me, because I'd collapse in pain midway at times and need a strong shoulder to support me until I could bear to stand again.  But I did what he said and gradually I was able to walk again.  The pain remained for years, and I've always had to alternate activities -- standing, sitting, lying, walking, etc. -- but at least I could remain fairly active.  I, like your daughter, cannot sit on a chair at a desk or a table for more than 20 minutes before I experience extreme pain, but I can do other things now besides remain in bed.  I am typing now on a laptop on my couch with my legs extended.  That's the only way that I can do this.  I've found ways to work around this. 

If I remain in bed for too long, my body 'seizes' up and I experience intense overall pain, the type that your daughter is likely experiencing, only a million times worse in her case.  I can't begin to imagine what she is experiencing.  I live in fear of being hospitalized with a fractured body, since this would require what your daughter is currently experiencing, and I don't think that I could ever bear that type of pain for days on end.

I honestly don't know how your daughter's problem will be resolved at this point.  Any movement would put in her into extreme pain, but remaining there would intensify this pain.  Only a specialist would be able to solve this puzzle, in a way that would work best for your daughter.

Unfortunately our health care system isn't the best at times, but at least it is there for us.  That's how I try to look at this.  It took me more than ten years to see some resolution to all of my health problems, but I'm gradually getting there.  I'll never be completely healthy and whole, but I am finding that I'm gradually becoming more pain free and whole than before.  I know that I'll always have to live with pain, but there is a big difference between horrific pain and just having pain, as your daughter well knows.  And sometimes we just have to accept that.

All the best to your daughter.  And I'm sorry that I haven't been able to offer anything of real value to you.  :-( 

"Why fit in when you were born to stand out?"  Dr. Seuss

 "Your beliefs don't make you a better person, your behaviour does."  (unknown)

"If everyone is thinking alike, then somebody isn't thinking."  George S. Patton

The poster formerly known as Writer Mom (stolen from Prince)  

edited Mon. 17 Sep., 2012 @ 3:30:42 PM by dreamer16
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I am so sorry that your daughter is going through so much pain  Actions...
Posted: by Rosetapestry on Wed. 26 Sep., 2012 at 9:44:53 AM
In reply to: BSP "I need some answers ... can you help?"
the only thing I can think of is to phone the pain clinic and let them know of her worsening condition and if she could be put on a waiting list for cancellations. 

I was due to have a total hip replacement done and they booked me for May 22 1014!! I am almost bedridden from the pain. The doctor said he would put me on a cancellation list and I just got a call the other day and my new surgery date is Oct 25 of this year!! One month away!!!!I was so happy I cried!
I know pain now from the problems with this hip....but honestly your daughter's pain sounds much more intense. I can barely stand it, I don't know how she is.  I sure hope your daughter gets taken care of soon at the pain clinic. 


"Gratitude unlocks the fullness of life" (Melody Beattie)

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I have back pain issues  Actions...
Posted: by Simply_Trying on Wed. 26 Sep., 2012 at 2:43:16 PM
In reply to: BSP "I need some answers ... can you help?"
and while my doctor was of the old school of standing or laying down only, he did refer me to a physiotherapist and a massage therapist that were awesome at what they did.  The best advice I was given was to go to the pool (YMCA) and walk in the water .  This allowed for surrounding muscles to become stronger and support my back.  It was a long process but eventually I was able to do more then just walk arround in the water.   At times I have flare ups and I know that those are from period of getting lazy and not moving...

Go confidently in the direction of your dreams. Live the life you have imagined.
Henry David Thoreau

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definitely  Actions...
Posted: by RubyStar on Wed. 26 Sep., 2012 at 4:39:45 PM
In reply to: Simply_Trying "I have back pain issues"
being in the pool is great for your back & all your joints. I've been swimming since a very young age, was born with back problems & swimming was recommended (by the Dr.) to my parents for me. Our local pool runs a gentle joints class for people that have mobility/arthritis issues. 

Now that I'm getting older I sure appreciate the advise the Dr. gave to my parents! 

You can never do a kindness to soon because you never know how soon it will be too late. -Ralph Waldo Emerson

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No pain medications  Actions...
Posted: by Fanster on Thu. 27 Sep., 2012 at 1:44:46 PM
In reply to: BSP "I need some answers ... can you help?"

I'm so sorry to hear about your daughters pain.  You didn't mention anything about pain medications.  Didn't the doctor prescibe anything for the pain while she is waiting for her appointment? If things are that bad, I would get her to the hospital emergency dept. and demand that someone help her, and don't leave until they do!


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My daughter has been on  Actions...
Posted: by BSP on Fri. 26 Oct., 2012 at 5:24:25 PM
In reply to: Fanster "No pain medications"
all kinds of pain medications, but none have really touched the pain.  Hopefully this new one will help her!!

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The Good News is ...  Actions...
Posted: by BSP on Thu. 25 Oct., 2012 at 11:33:21 PM
In reply to: BSP "I need some answers ... can you help?"
my daughter's family doctor, after seeing how she is deteriorating, decided to call the specialist and ask for him to see her asap.  I didn't know that, and a few days after he called I took it upon myself to write to the doctor (registered letter), and appeal to him to see her right away.  She was seen within the week.  He has started her on a brand new medication which I hope will help.  There is also the option of having an intravenous medication (I think lidocaine) that will last several weeks.  He says she will always have pain, but he feels she can get her quality of life back.  She will also be seeing a pain psychiatrist, which I am thankful for.  Hopefully that person can help her overcome the depression.  I think I said before that she has become her disease - it encompasses her entire life.  Thanks everyone for you suggestions and opinions.

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