disability....need pointers

[tenai98]

Here I am almost 5 months post op and I'm still suffering from wonky head and headaches...albeit not debilitating but annoying none the less....My neurosurgeon said to try to go back to work but not to drive when dizzy...so my GP said that not knowing when the wonky head attacks, that how can I return to work and not drive??? So here in Canada we have CPP disability...and my doc applied for me...I feel bad and somewhat upset and I love my job...Working with 16 yr olds is great...I have gained alot of perspective and respect from these teen learning to drive.  If I put any energy into any activity on a good head day, I suffer the next day.  I find that when I'm dizzy my balance is off....there is at times this heaviness in my head and it feels like it it pulling me forward when I walk and that even though my thinking capacity is ok, my head is in some sort of heaviness land....
I understand that it can be a long haul in fighting for disability...I would rather be working...but for those who have faught, can I please have some insigth into ur fight....pointers incase I have to appeal.  Many thanks in advance
Jo

[ppearl214]

Jo,

I wish I had an answer from a Canadian standpoint but I don't. But, I know Captn Deb went through the wringer to try to obtain disability (appeal processes, etc).  Although from an American standpoint, she may be able to give some "generic" helpful hints, regardless of which country. May be worth a shot.

I'm sorry you still aren't well and are pursuing this option.... but let's get you all set, as well.

Phyl

[Brendalu]

Jo,
I don't know what the guidelines are in Canada, but here in the US it is pretty tough hill to climb.  After filing and being denied once, I hired an attorney.  It cost me 25% of the back pay, but it was worth every penny.  Just before we were to go to court for the appeal, the admin judge reviewed the case and found in my favor.  The best advice I can give you in to document everything.  Keep a file of all of your doctor appointments, meds, and most importantly keep a journal.  Detail every headache, dizzy spell, off balance day, tiredness, depression, how you feel when you drive (I can no longer drive at night, I have a restricted license now).  Have others write letters and tell what you were like prior to the AN and now afterward.  If you have a rehabilitation department, sign up and ask for help trying to learn a new skill.  It takes time, patience and diligence to get through the system here, but it can and has been done by many of us.
There is a thread about disability and Social Security Disability somewhere on this forum and a lot of people have shared their journeys through the red tape.  It might help answer more of your questions.
Good luck.  I will keep you in my thoughts and prayers.
Brenda

[4cm in Pacific Northwest]

Canadian residing in the USA here- with experience on both sides of the border… butting in… (Hi Pearly Whites  - aka “Phyl” and Brenda- Lu)

Firstly know that there are many Americans who would love for a doctor to write them up for some “time off”, with disability pension, so they can take the much needed recovery time from their AN tumor treatment.

5 months post op you are right up there with many of us that had wonky head issues … and no doubt you probably really appreciate being able to get in an afternoon nap still. I think it was not until month 9 that I even attempted night driving.

I think you should just accept the CPP and be so thankful you live in a place where this exists and is available to you. I have read of so many threads where people, those residing in the USA, that go back to work WAY too soon as they have to. If they loose their work- they loose their medical insurance… and they so struggle with their jobs as they try to recover. This was not knee surgery but brain surgery- neurological things just take longer.

Know that Captain Deb has finally, after surgery, got a break from the headaches… but it took some time.

CCP is usually very good and I doubt you will have to appeal as this was after all “brain surgery”. They are not going to view you as one of an “abuser of the system”.

I suggest that you contact yardtick (Anne Marie)- she will be able to give you the scoop… as I know she has cut back work hours etc.

Also know that there are support groups meetings, in your area, through the ANAC. (The Canadian equivalent to the ANA)
http://www.anac.ca/

The Ontario support groups are listed here
http://www.anac.ca/chapters.html

They also have a discussion forum that may be more able to answer questions specifically to CCP. (Although I do not think their pirate ship is as FUN as ours- as they do not have Captain Deb.   )

http://www.anac.ca/phpbb/index.php

Here is the actual ccp link I found for you
http://www.anac.ca/phpbb/viewtopic.php?t=26

Know that we love our Canadians that come onto the ANA forum … we have people from all over the world…

Sisterly Canadian Hugs to you up in the Northland there- from Oregon (a U of T grad)


DHM

[tenai98]

thank you DHM
I am a member of the ANAC...and i have been told the support group in Ottawa is not happenning....I have done my research prior and after surgery just in case.  The 5-6 weeks were good with low grade headaches the odd time...But since June 16 they have been almost daily at varying degrees and the same for the wonky head...Im just to young (50 next tues) to clam for CPP...one has to be 60 I believe.  I have yet to drive at night...I'm in bed at 9pm...Nor have I attempted to walk outside at night.  I plan on calling CPP disability evey month.  I\m told it can take up to four moth to become eligibl and then only after four months of being eligible do they start to pay...
Jo

[4cm in Pacific Northwest]

Here is the cpp direct website
http://www.hrsdc.gc.ca/eng/isp/cpp/cpptoc.shtml

I am so sorry about the headaches. HUGS!!!

I see you had the translab. You need to ask your physician as to how the craniotomy hole was closed and sealed. Later on-set headaches can be caused by muscle tissues growing into the titanium mesh causing aches.

You need to ask of your physician/surgeon:

•   Was fat used to seal the tumor?
•   Was the drill skull piece saved and replaced over the fat?
•   Was titanium mesh used?
•   How many titanium screws were used?
•   Was skull putty (calcium phosphate) used to seal the hole? (Heads up this is a question I asked when interviewing surgeons that did cause some controversy as there are those who swear by the putty and those who are adamantly against it)

For the patients who do have the muscle grow into the titanium mesh and complain of headaches, it is my understanding that having Botox injected into the muscles (where the incision was) has been helpful in relieving the headaches. I suggest you speak with your doctor about this to have clarified how the craniotomy hole was sealed up. (IN the USA we are handed the surgical notes at discharge and this is our information to own- Canada I am not sure is there yet) Know that these sorts of headaches are more typical of the retrosygmoid approach but I have heard of translab patients that have had this also.

DHM

[tenai98]

ok waiting for return call from neurosurgeon's office...post surgery transcript does not state what was or how the craniotomy was closed....so the nurse is going to ask him and call me back.   She thinks he uses the putty...so can DHM can u elaborate why there is controversy on the calcium phosphate??? Just curious...
JO

[yardtick]

Jo,

I'm collecting disability through work.  The insurance company is trying to rehabilitate me.  It is a painful battle.  I have been thinking about applying for CPP disability myself.

Anne Marie

[tenai98]

My GP wrote up a good report for the application....I submitted doc's report and application at same time, which I'm told is unusual as doctors tend to take their time in completing and returning the forms....I plan on calling them once a month as it can take as long as four months to become eligible...then from what i can read and understand on their website, it takes anther four months from eligilbility to start getting payments....my nerusurgeon to try and go back to work but then he also told me he was be facetious and not to drive when I'm dizzy...I have no control over the time frames when I become dizzy and or have the headaches....which are not debilitating, but none the less put me out of whack...
JO

[linny]

    Hi ,I'm not sure when you wrote this question,and I don't live in Canada, but I had my surgery in 2007 3cm left side  actually (2) because it was big and they were trying to save nerve damage. (IT didn't work. ) I am deaf in my left ear, I have facial paralyzes, cant see very good out of left eye (I do have a weight in it) My memory is not so good ( maybe that's old age  ) I am 57 this year.  And I get wonky head still.    I applied for SSD 3yrs ago and I just now got a letter saying I got accepted I too had to get an attorney. And yes ,have all documentation, my doctor wrote a letter for me (in which was very nice)and I believe it helped. I was a mail lady walking route, there was no way I could of handled that job the post office even put me on disability.     Now I stay at home, getting fat.    anyway good luck I hope Canada is faster.  At least were still alive.   Not sure which disability I should keep? Both about the same money.  Oh well I have had  worse things in my life. take care keep us posted.    LINNY

[Mei Mei]

I had my surgery in January and was a High School teacher like you.   I suffered from headaches and became SSD as a result of the surgery.  I applied for disability through the school system and the State and was approved in March.   I was denied by Social Security just last week and hired a lawyer yesterday.   She told me the Social Security process is a long slow process.   I don't know if this information helps.  Our American and Canadian systems are so different and the paperwork so difficult to go through that it is best to have a lawyer to help you through it.   Take care of yourself, those high school students can be taxing on your AN head!
Mei Mei

[Captain Deb]

It was almost 5 1/2 years after my surgery that I finally got my disability and boy was it a fight. I was flat turned down twice before I could even get a hearing.  At my hearing the court-appointed doctor didn't show up and didn't send a replacement.  It took the judge 16 months to make a decision--I thought I'd be hearing within 2 weeks but she sat on the case for 16 months.  I had a migraine during the hearing, of course, and it was obvious to anyone that I had serious problems.  Meanwhile--with my whopping $5000 deductible I still could not afford access to the pain clinic for nerve blocks (at $2400 a pop) or pursue my doc's recommendation of Botox (at $1000 a pop.)  My lawyer finally just starting writing scathing letters to the judge.  She finally approved me but managed to screw me out of 2/3 of my back settlement because I showed income after my surgery by continuing to sell art which I had produced before I became disabled.  My lawyer wanted me to appeal this but I said enough is enough! The whole thing just about sent me over the edge with anxiety, but I'm glad I pursued it.  My disability payment is really small--$500 a month--because of my husband's income but the access to purchase Medicare and Medicare part D has protected his retirement.

There are certain states in which it is easier to get disability than others because of people trying to defraud the gov't and North Carolina is one of the difficult ones.  My insurance paid well for my initial surgery, but as far as aftercare for a debilitating painful condition, when I did the math, I would have been almost better off not even having coverage, my premiums were so high for the amount of coverage I got.  People who are self-employed pay out the wazoo for health insurance--so much for "free enterprise!"  Sorry to make this a rant against the current US system!

Don't know how it works in Canada, but my advice is to gather every medical document you can get your hands on, keep a symptom journal, and start getting those docs to write letters for you.  In the US, you cannot even apply until you have been disabled for a year.

Good luck to all considering going this route!

Capt Deb

[Jim Scott]

Deb ~

I'm truly sorry to learn that you had such an unpleasant experience with attempting to obtain Social Security disability benefits, which you clearly deserved to receive.  Unfortunately, your experience, while a bit worse than some, is not atypical.  This is why I fear that when the government bureaucracy is in complete control of our health care system - scheduled for 2014 - obtaining needed medical services will be a lot more difficult than it is, today.  Although in too many cases, private health care insurers are more concerned about pleasing their stockholders than their policyholders, I believe that having an army of unaccountable government bureaucrats in charge of who gets what medical service (and when they get it) will be a disaster for many of us.  I hope I'm wrong and that all the rosy promises politicians made about the new health care law turn out to be accurate - but forgive me if I'm just a tad skeptical about politician's promises.

Now, back to our regularly scheduled program.

Jim

[Rc Moser]

If I was going to apply I would get an lawyer! hate to say it but SS and big insurance denie all first time claims, they know 60% won't try again or get lawyer. IMO also think women can get SS claims easier than men.

[tenai98]

well when I dound out the amount I was going to get, that more then enough of an incensive to work hard to get back to work....I gave myself extra time to recover and it did wonders...I'll be back to work a yr this month (on holidays til end of sept) and I'm enjoying it more than ever...I've said it before and I"ll say it again, working with 16 yr olds is great.  They really are great kids.
JO