Any help is appreciated...

[tazmanforever]

I am a 37 year old man with a wife and four children to support.  In early 2000, I injured my back on the job and began seeing a Dr.  I was experiencing cluster headaches/migraines, had numbness and tingling in my extremities and had severe neck and back pain.
As the Dr. treated me, I never seemed to get better, so he sent me for an MRI of the brain.  They found a Giant Sub-Arachnoid Cyst in the posterior fossa of the brain about the size of a golfball.  It is attached to the Cerebellum and Occipital lobe and has caused a thinning at the rear of the skull.
The first step was to fenestrate the cyst in 2001.  After that, a VP shunt was placed in 2003 and removed in 2004 after they found that it was over-shunting.
After removal, the incision site began leaking Cerebral Spinal Fluid and I contracted Bacterial Meningitis.
The headaches, when severe enough, cause pseudo-seizures.  I have been on/off work continuously since 2000 because of the pain and increasing symptoms, (i.e.- Vision Impairment, numbness and tingling of extremities, constant pain in head)
My family has lost everything and I am beginning to feel like more of a burden than a help.
I have been on several medications that were supposed to help and am now on Percocet, Valium, Atavan and Promethazine and am awaiting a new referral to Stanford Medical Center.
The doctor's are all, obviously, having a difficult time in diagnosing me and I have to get back to work.
Most recently, over the past few weeks, my feet and ankles have begun swelling making it very difficult to walk.
Any help is appreciated.  I'm desperate at this point.

[tazmanforever]

Your help is greatly appreciated!

We did get rid of one of our vehicles last wee, (the only one we owed money on).  We cut back the cable, (got rid of premium channels package), cut hot water usage to a minimum, no more Starbucks every morning, etc...

One of our biggest challenges right now is that I have asked my wife to get a job to help wth the bills, (that was3 months ago), and, unfortunately, am meeting extreme resistance on the issue  She has been a stay-at-home Mom for pretty much our entire marriage and isn't taking having to work very well, but as I explained to her, there really is no alternative at this point.

At this point, I've got the belt pretty well tightened to where we may be late on a bill one month, but can pay it the following month and extra cash is a thing of the past.

[ggreg]

Just one other thing, then, about the amount of money from SSA being too small to support your family.  There are a couple programs on TV that help families overcome debt.  You don't have to be in debt to appreciate the advice offered on those things.  The main idea is, if you are approaching financial crisis, tighten up now.  Basically the TV shows are:  An advisor has the family increase incoming and/or reduce outgoing.  Nearly always there is debt that can be consolidated, reduced, or paid off.  They also begin a savings programme.  For example, some families will be leasing an extra car.  Advice is usually to get rid of that car.  Another example is to "pay yourself first," which is saving.

You may think you can't live on what SSA can give you, but one day that may be all you have, and then you will have no choice about the situation.  At least you've got a jump start, and one thing is for sure, if you do get well, God willing, it sure won't hurt to have prepared for the worst.

As for your health problems and endless complications, it might help to have a complete new workup done at a university hospital, just get a new set of eyes on this thing.  Also, find an organization with a support group online that does nothing but talk about subarachnoid cysts or something related to it, which might give you better insight and practical advice as you engage in your very serious battle on the health front.

[tazmanforever]

I really appreciate all that you had to say regarding my post.  I believe that one of my biggest fears is not returning to work and losing my income, insurance and job security.  I've gotten my report from the Social Security Administration and the maximum payout on Social Security is only $1893, hardly enough to support my family.

I have many fears associated with what's been going on, but I will begin checking into proceeding with your suggestions today.

Regards

[ggreg]

Dear Tazman,
I think you should get a lawyer and apply for Social Security Administration disability very quickly.   As for your diagnosis, you already have one.  You have complications from a subarachnoid cyst on the brain, which includes impaired vision, meningitis, seizures, and migraines, none of which will improve because of the insidious nature of your condition.  

If you have managed to retain your job from the beginning, but have taken lots of time off, that needs to be documented by your supervisor and provided to you.  Your prior medical records plus your upcoming records from Stanford, and all tests, surgery notes, and doctor visits for treatment of complications from the original brain condition, since 2000, need to be obtained and systematically organized in a file with tabs, and several very good copies of all of it needs to be made.  Some lawyers will not step in until after you have made the original claim, but there are legal consultants who do nothing but SSA diability, and you must find one who will do the entire thing from beginning to end, and they are paid by a percentage of what you will receive in disability payments.  In other words, it doesn't cost you anything.  By using such a consultant, you have a very good chance of obtaining Social Security benefits.

If you are at the moment not working, keep it that way.  The longer you have been out of work, the better your case looks, but your consultant or lawyer will advise you of this.

Some of the medications you are taking MAY be contributing to your swelling, but you should have the prescribing doctor examine you for that particular problem with walking, and make certain it is not from some other infection or failure in your body systems getting out of hand.

I took Ativan and Valium, they both cause "dry mouth," so you have to drink lots of water to keep yourself hydrated.  They CAN be replaced by Klonopin, which does not cause dry mouth as much, plus it will help with your seizures, but this drug is not as powerful as the ones you are on.  Therefore, you might also ask about the drug Lyrica, which helps with nerve pain, and the dose will have to be increased initially until you plateau at the level that gives you relief.  It does, however, cause swelling and numbness, but the relief is substantial both physically and mentally.

Try to meet head-on your feelings about being useless by realizing you are very sick, you are disabled significantly by your brain condition, and while the Stanford folks can get you somewhat more comfortable, you are not suddenly going to be able to do the things you used to do, and thus the sooner you accept this and make the adjustments necessary to live with your deficits, the happier you will be, both financially and in lifestyle.

I, too, lost everything.  I had to depend on family to help me.  This was very troublesome.  Because I did not have a lawyer or disability consultant work with me at the outset of my health problems, I lost my home.  Devastating.  Of course I have adapted, am still awaiting a second claim and appeal, and at least I managed to pay off everything I owe.  But it was at a high price and I still don't have benefits.  That's why I am going at this bit of advice from the point of view of making a claim to Social Security.  Get your ducks in a row for that process and you MUST get help with it, to keep from losing anything else you have.  

Assume worst-case scenario, accept you are very ill, and tap into THE government resource that you have paid into your entire life, because that's why the SSA was set up in the first place, to help disabled Americans continue to live reasonably well and not end up on the streets.
GG