Recovery after CM surgery

Discussions about the illness, treatments, doctors, etc.

Re: Recovery after CM surgery

Postby coolbreeze_ca » Sun Apr 01, 2012 9:10 pm

Elizabeth, thanks for understanding. Yes, I would keep on doing intensive rehab for an year at least.

Are you talking about short term or long term disability (social security ?) ? Am on short term disability currently and in california, one can get max. of 1 year ss disability. But after 1 year, I need to decide if I can survive on my own. Probably, I can work but may not be able to drive.
My current job is very hectic and involves long hours (at least 55-60 hrs/week). If I decide to get a new job, is there a disability quota in private companies ?
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Re: Recovery after CM surgery

Postby Elizabeth » Sun Apr 01, 2012 9:54 pm

I don't understand your question about disability quota, but I was suggesting long term disability in terms of ssi, unless you have private LTD insurance. SSI is a racket but if you qualify it could make your life easier. Worrying about finances and recovery is overwhelming. My sitution has been fortunate in that we had saved a bunch of money prior to my surgery....never imagining we would need to use ALL of it. We were glad it was there when my surgery did not go as planned. My husband took off most of a year to help me. He ownes his own bussiness...so we are broke now....but I am much improved....and I think our extreme commitment to my recovery was beneficial and totally worth the expense. In my mind...money comes and goes. As long as we have enough to survive its fine with me. I also had a long term disability insurance from my former employer...a huge blessing...since SSI is such a mess. Anyway, my advise..commit to your recovery and try to get enough $ to get by. SSI takes forever so apply now. They declined me 3times. I totally understand not being able to manage your former difficult job. I'm an RN and think it is very unlikely I will be able to manage that stressful hard, long hour job again. We'll see in time. Best wishes.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Recovery after CM surgery

Postby Libby » Mon Apr 02, 2012 12:03 am

Coolbreeze, you have a substantial job, I would assume. Do they not include benefits and disability?
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Mon Apr 02, 2012 4:12 am

yes, my short term disability is done by state plus my employer. The long term disability kicks off after one year and unfortunately, I joined this employer just 9 months back. My calculation was, I would be down for 6 months
(a few months here and there) but I never considered more than 1 year. So, am okay for a year but after that
need to rethink about everything. I would go back to my employer and try to work something out.
My question was, if I am looking for a new job, will they consider my disability as special case ? Or it depends on employer to employer ? I would find more about SSI disability.
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Re: Recovery after CM surgery

Postby adelle » Wed Apr 04, 2012 2:18 pm

Coolbreeze, you may also qualify for SSDI, which is a more substantial amount than SSI. It depends on how long you have worked during a period of years, which depends on your age. It is a federal benefit administered through the Social Security Administration. When you are able to go back to work, they give you a trial period in which you can draw benefits and work at the same time, to ensure that you can do it. SSDI is hard to qualify for based on the particular disability, but it might be an option and is worth looking at.
One brainstem CA removed by Dr. Spetzler on 9/28/10. 2 CA's remain on the right frontal lobe but have not caused any problems that I know of.
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Thu Apr 05, 2012 1:21 am

Adelle, thanks a lot for the suggestion. Do you know how much is processing time ?
I have done job for 13 continuous years. Am not sure, if that is enough but would look into it.

Elizabeth, do you know how much is SSI processing time ?

Maybe, I would try for both and see.
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Re: Recovery after CM surgery

Postby Elizabeth » Thu Apr 05, 2012 2:14 am

I didn't even know there was a difference between SSI and SSDI. My former employer required me to apply in order to qualify for the private LTD coverage. It would seem what I've been dealing with is actually SSDI. I think they're processed by the same people Social Security. It's a complete racket and its been forever since they made me apply....still no answer, except I've been denied 3 times. I just went for my second hearing. Waiting for an answer again. Really, apply now....and be ready to wait forever. Good luck!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Recovery after CM surgery

Postby adelle » Thu Apr 05, 2012 2:59 pm

13 years of work is plenty. SSDI brings in more and is not dependent on family income. And, yes, they are processed by the same people. Sometimes the process moves much more quickly if the physicians give the right info. It all depends on the level of your deficits, but also on what the docs say about them. Apply soon. If you apply more than a year after the disability begins, you lose early months of benefits, but if you apply right away, that protects your filing date. Then if you are approved later, you get back benefits, although those could be affected by your company disability. Best to apply!
One brainstem CA removed by Dr. Spetzler on 9/28/10. 2 CA's remain on the right frontal lobe but have not caused any problems that I know of.
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Thu Apr 05, 2012 3:36 pm

Did any of you use representation or applied personally ? I read somewhere that early representation helps in dealing with red tape but I am wondering if they charge reasonably.
I also was reading about SSDI ticket system which gets you in contact with employment agencies which help you getting job that is suitable. That would be great.
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Re: Recovery after CM surgery

Postby markkara » Thu Apr 05, 2012 8:21 pm

I have also applied for SSDI and SSI (didn't qualify for SSDI, probably will for SSI, but still waiting to hear back about that). It generally takes 3 to 6 months to get a decision on your first application. Less than 1/3 of applications for SSDI and SSI are approved the first time, so be prepared to re-apply or appeal if your application is denied.

The laws and regulations for SSDI and SSI are complex and it can be difficult and time-consuming to gather enough information to guide you efficiently in the application process.

Coolbreeze, I think I read that you are an engineer, so you will probably want detailed factual information as well as the valuable personal stories and advice available here on the Alliance forum.

There are quite a few books and guides available regarding SSDI and SSI. Some that I have found useful in my own process so far are these books:

Getting Social Security Disability, Your 9 Step Individual Action Plan

How To Get SSI And Social Security Disability, An Insider's Step By Step Guide

Nolo's Guide To Social Security Disability, Getting And Keeping Your Benefits


These are available on Amazon and elsewhere.

The application approval process depends on your doctors, therapists, etc. supplying the required information to the Social Security Administration in a form that makes sense to the the Administration.

You will want to be working with doctors etc. who are willing and able to write letters for you that are highly favorable to your application and which supply all required medical information. Not all doctors fit that description.

I hope this information helps.

Mark
Last edited by markkara on Thu Apr 05, 2012 8:24 pm, edited 1 time in total.
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