At the first hearing she was turned down for two reasons both which we can now present and refute at the appeal hearing. The biggest hurdle was closing what SSD thought was a 4 year gap in her seeing a medical professional for her many migraines. We closed that gap to one year after reviewing our medical records. This can be a catch 22 when your Doctor tells you that you need "time to heal" and "the headaches will eventually go away," they never do. You can consider this what is called one's Peter Principal code for "I don't know, and I can't help you anymore so please go away." So who do you go to next? How long do you wait? How does a cognitively insulted patient whom is "healing" make such an important decision on next steps and also doesn't know the clock is ticking with SSD or any other legal entity?
I can safely say that in 1994 a patient was on their own, even at the best medical institutions. This also brings up a good point of getting all your medical records no matter how trivial, scan them and keep them all together in a safe place. Fortunately, my wife's current Neurologist obtained her previous Neurologist notes from his well known brain rehab hospital before they destroyed them and that help solve the time gap. The second point I can't reveal because that would uniquely identify her to SSD before her next hearing.
I had a giant (3 cm) aneurysm of the cavernous carotid artery which was diagnosed when I got double vision. It was fusiform and not in a place suitable for open surgery. After a balloon occlusion test (which in retrospect first caused memory and reading problems) I went on to have coils in the aneurysm and occlusion of the feeding carotid artery. I'm now 15 months post procedure. I have (had) an intellectual job which I tried to get back to, but failed on 2 attempts. My employment was terminated at about 12 months. To document some of my problems I saw a neuropsychologist in the 'Acquired Brain injury Service' who, after 5 hours of sophisticated tests was able to demonstrate 4 areas I had difficulty with that were essential for my job. She also confirmed the fatigue I was describing. This assessment has helped my application for an occupational Ill Health Pension. I was recently also assessed for a benefit and noted that the testing they do in the UK will only pick up severely impaired people, i.e. those with dementia, and is not appropriate for anyone with an acquired brain injury (where we look and sound normal, but our brains do not behave in the same way and we find previously 'normal' tasks difficult).
Yes, I am also in the early stages of SSD. My attorney just filed my claim. I understand it will likely be rejected automatically e first time it is submitted. I have been out of work since my ruptured aneurysm with SAH.
Ed, I understand completely where your wife is coming from in reference to the headaches. I have experienced daily headaches since the incident. I am being seen on a regular basis by neurologist who specializes in headaches. So far, we have not figured out the “recipe” to alleviate them. I hate headaches! They can be very debilitating. Terrible pain, inability to focus or even collect my thoughts and speak intelligently. Have tried so many remedies: analgesics like oxycodone, Tylenol and ibuprofen, several antihypertensives (although I did not have high BP until I began the med), several antieleptics (never experienced a seizure), etc. The next step they say will be Botox injections (31 individual injections every 3 months) to paralyze the likely offending muscles in the head and neck. I really don’t know how that will work since the neurosurgeon tells me the headaches are a result of the bleed from the SAH. The blood irritates nerve fibers and cause pain.
Thanks for reminding me of the importance of good documentation and obtaining a copy of my medical records. Will put that on my to-do list. Have a good week! =)
Teresa
A letter from your Neurologist is your best bet, along with your documentation. My first, 20 years ago was a SAH, however, no side effects then. They have told me about Botox, and I have talked with other and for regular migraines it seems to work. Do you have any other unruptured annies now, or was it just the one that ruptured? I have 3 other small one in between the clipped SAH and the coiled annie. The issue I face with Botox is.... Botox freezes the nerve cells in the area needed. If you have no other trouble areas - you are good to go. If any of my other 3 were to grow or rupture...the Botox would prevent advance notice, if any notice of that happening. I can't afford the Botox, and I don't have insurance, but I would really have to weigh the pros and cons of that one. Will you keep me posted if you have the treatments? This may be the only way I have a chance at having as normal a life as I can. I wish you the best...my hearins is Wednesday...if you have any disability questions,....I may be able to help!
Seems like you were so blessed to have a fusiform diagnosed /treated... to reach the natural god-given aneurysm...
It saddens to know how many have such difficulty getting thru the disability process...there is so much stress just from the aneurysm/treatment...when the food/rent monies are added it can be awesome...likely generates anxiety...likely needs more medcare...
I am so glad you had the neuropsych tests; after the two I noted; I did two more at two year intervals...likely will do another this year...In the first added test, I told the psychologist about my right body weakness and the tingling/falling asleep of my left hand own to left leg...(restless leg?) Somehow, testing qualified issues w/both sides... he did explain; but have no memory/idea of which tests... coming out of those tests I am fatigued...home to sleep...I want more info on the learning-to-long-term memory...which is so difficult...
Prayers for your results...please keep us posted...
Lynnette, thanks so much for the info! Yes, We are monitoring a smaller, ACOM annie. The one that ruptured is trying to recur and may have to be recoiled. I have an MRA scheduled in a few weeks and the doc will advise me. The info you mentioned (the Botox would prevent advance notice, if any notice of that happening), did not even cross my mind. I will mention to my neurosurgeon, who is monitoring me. I am also under the care of the neurologist who specializes in headache management. Just to “make sure the right hand knows what the left hand is doing,” so to speak.
Good luck with your hearing.
God Bless, right back at ya! We are both blessed!
Teresa