Replies to This Discussion

Permalink Reply by Kim P. on August 20, 2010 at 10:33pm

Hi Chris,

I'm near Chicago, in Rockford now. Was born & raised in Chicago though. My AVM is also inoperable but it is not in my brain. It is at the base of my brain within my spinal cord down past C2. It may have gotten bigger since the last time I've seen a doctor or had any treatment. I've suffered many bleeds and the blood circulates with the cerebral spinal fluid to emcompass my brain. I'm not exactly like you, I think the rarity of the disease makes each of us unique.

Kim

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Permalink Reply by Michael B on August 21, 2010 at 10:10am

Hi Chris I live in Burbank on southwest side of Chicago.My avm was operable. It bled june 1 and was removed june 2 2010.Not exactly the same but still part of the family.

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Permalink Reply by Chris Safford on August 21, 2010 at 11:39am

Hi Kim: Yes, this disease is still rare, even thouogh newer technologies can detect it & it has become more common. At least that's what the docs at UIC tell me! What kind of deficits do you have related to your AVM? The base of your brain is a really heavy duty spot, it controls all of your functions. It's past C2? Wow, that's big! What about radiation for it? Like the proton beam??? How about that cyberknife I'm always hearing about at DuPage Hospital???? I went to Boston to get the proton beam, but it really didn't work, because mine is a venous malformation.
Who is your doctor affiliated with??? If affiliated with a University, then I don't know what to tell you. They have all of the latest techiniques!
Chris

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Permalink Reply by Kim P. on August 21, 2010 at 12:52pm

Chris,

I no longer have a physician as I have no health insurance, lost it with the job; although I have been fortunate enough to have a few neurosurgeons across the country review my case.

My hope is for the Cyber Knife, created by Dr. John Adler from Stanford. I have actually spoke with him and he is more than willing to help me with his expertise but since I am in Illinois and would need to cover the travel costs, the hospital charges in California then have follow-up care and probably more Cyber Knife treatments.... well you can see, it is out of financial reach. I know there is a Cyber Knife at the Cleveland Clinic too. The proton beam, Gamma Knife would have a very negative effect on my spinal cord and we don’t want that.

As for my deficits... I have weakness on my right side that varies depending on how overtaxed I am. I always seem to be overtaxed, as I never seem to have any energy. I care for my disabled Mother and you could say she also cares for me by allowing me the opportunity to lay down when I need to. Can't do that at a nine to five.

I also suffer from hyperacusis. Sound, any sound can be very debilitating to me. It is painful and if it is loud, sudden, and unexpected, it can take me to my knees. That's the newest development, since my last major bleed in 2000. I spend most of my time trying to come up with ways to avoid sound. I do all my grocery shopping in the wee hours of the morning or late in the evening and I never shop on weekends.

If I get too tired, overtaxed, I have problems with my speech. I just can't get the words to come out or if they do, they are the wrong ones.

The headaches. They can be excruciating and they are never ending. Some days they are at a 3 or 4 pain level, and I function. Other days they rise up in the 7, 8 or 9 range and I can't function. I've been having too many high days for the past year or so. Things are getting out of hand and I can't keep up with all I need to do. Mom is a real trooper and does what she can to help. In June of last year, I was walking across the room, having a very bad headache, and simply lost consciousness. I was taken to the hospital. I told the ER doctor about my condition and that a CT scan wasn’t going to show the AVM. He did one anyway and seemed to be pleased enough that I was responsive and stable and sent me home with some Tylenol 3’s. I’m still paying for that visit.

Yes, my AVM is in a precarious place. There are times that I can't regulate my body temperature and other times that my heart rate increases to a level that I think my heart is going to explode. I am no longer afraid of death from the AVM, what does scare me is the possible inability to breath because my brain will no longer be able to control that function and I of course fear paralysis.

You mentioned Boston. I love Boston; I also went there to have Dr. Ogilvy look over my case. Their consensus back then was the same as everyone else’s, too risky to attempt an intervention at that location. That was before the Cyber Knife. But, oh, the lovely memories I have of that town! I know it’s a city but it felt like a town to me, I loved it.

Well there it is a novella of my AVM.

Keep your chin up and your AVM silent.
Kim





Chris Safford said:

Hi Kim: Yes, this disease is still rare, even thouogh newer technologies can detect it & it has become more common. At least that's what the docs at UIC tell me! What kind of deficits do you have related to your AVM? The base of your brain is a really heavy duty spot, it controls all of your functions. It's past C2? Wow, that's big! What about radiation for it? Like the proton beam??? How about that cyberknife I'm always hearing about at DuPage Hospital???? I went to Boston to get the proton beam, but it really didn't work, because mine is a venous malformation.
Who is your doctor affiliated with??? If affiliated with a University, then I don't know what to tell you. They have all of the latest techiniques!
Chris

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Permalink Reply by Chris Safford on August 21, 2010 at 1:27pm

Chris Safford said:

Hi Kim: Yes, this disease is still rare, even thouogh newer technologies can detect it & it has become more common. At least that's what the docs at UIC tell me! What kind of deficits do you have related to your AVM? The base of your brain is a really heavy duty spot, it controls all of your functions. It's past C2? Wow, that's big! What about radiation for it? Like the proton beam??? How about that cyberknife I'm always hearing about at DuPage Hospital???? I went to Boston to get the proton beam, but it really didn't work, because mine is a venous malformation.
Who is your doctor affiliated with??? If affiliated with a University, then I don't know what to tell you. They have all of the latest techiniques!
Chris

• ▶ Reply

Permalink Reply by Chris Safford on August 21, 2010 at 1:27pm

Kim Palmer said:

Chris,

I no longer have a physician as I have no health insurance, lost it with the job; although I have been fortunate enough to have a few neurosurgeons across the country review my case.

My hope is for the Cyber Knife, created by Dr. John Adler from Stanford. I have actually spoke with him and he is more than willing to help me with his expertise but since I am in Illinois and would need to cover the travel costs, the hospital charges in California then have follow-up care and probably more Cyber Knife treatments.... well you can see, it is out of financial reach. I know there is a Cyber Knife at the Cleveland Clinic too. The proton beam, Gamma Knife would have a very negative effect on my spinal cord and we don’t want that.

As for my deficits... I have weakness on my right side that varies depending on how overtaxed I am. I always seem to be overtaxed, as I never seem to have any energy. I care for my disabled Mother and you could say she also cares for me by allowing me the opportunity to lay down when I need to. Can't do that at a nine to five.

I also suffer from hyperacusis. Sound, any sound can be very debilitating to me. It is painful and if it is loud, sudden, and unexpected, it can take me to my knees. That's the newest development, since my last major bleed in 2000. I spend most of my time trying to come up with ways to avoid sound. I do all my grocery shopping in the wee hours of the morning or late in the evening and I never shop on weekends.

If I get too tired, overtaxed, I have problems with my speech. I just can't get the words to come out or if they do, they are the wrong ones.

The headaches. They can be excruciating and they are never ending. Some days they are at a 3 or 4 pain level, and I function. Other days they rise up in the 7, 8 or 9 range and I can't function. I've been having too many high days for the past year or so. Things are getting out of hand and I can't keep up with all I need to do. Mom is a real trooper and does what she can to help. In June of last year, I was walking across the room, having a very bad headache, and simply lost consciousness. I was taken to the hospital. I told the ER doctor about my condition and that a CT scan wasn’t going to show the AVM. He did one anyway and seemed to be pleased enough that I was responsive and stable and sent me home with some Tylenol 3’s. I’m still paying for that visit.

Yes, my AVM is in a precarious place. There are times that I can't regulate my body temperature and other times that my heart rate increases to a level that I think my heart is going to explode. I am no longer afraid of death from the AVM, what does scare me is the possible inability to breath because my brain will no longer be able to control that function and I of course fear paralysis.

You mentioned Boston. I love Boston; I also went there to have Dr. Ogilvy look over my case. Their consensus back then was the same as everyone else’s, too risky to attempt an intervention at that location. That was before the Cyber Knife. But, oh, the lovely memories I have of that town! I know it’s a city but it felt like a town to me, I loved it.

Well there it is a novella of my AVM.

Keep your chin up and your AVM silent.
Kim





Chris Safford said:

Hi Kim: Yes, this disease is still rare, even thouogh newer technologies can detect it & it has become more common. At least that's what the docs at UIC tell me! What kind of deficits do you have related to your AVM? The base of your brain is a really heavy duty spot, it controls all of your functions. It's past C2? Wow, that's big! What about radiation for it? Like the proton beam??? How about that cyberknife I'm always hearing about at DuPage Hospital???? I went to Boston to get the proton beam, but it really didn't work, because mine is a venous malformation.
Who is your doctor affiliated with??? If affiliated with a University, then I don't know what to tell you. They have all of the latest techiniques!
Chris

• ▶ Reply

Permalink Reply by Chris Safford on August 21, 2010 at 1:45pm

Hi Kim: Do you know that what we have is a permanent disability?????
I hope you have a lot of medical records! Will the docs say that you are disabled????? Also, you could go to Public Aid & apply for the medicaid card. They will pay for treatment & your travel expenses, like the plane ticket, or give you something to partially cover that! When I had my proton beam in Boston, they paid $125 a ticket for me & both of my parents. The rules for public aid are less stringent than for social security. Your deficits from this certainly qualify you for both. You can apply online for both! I am assuming that you are not working & that this made you stop! I was on medicaid since 1982 & SSA since 1992, off & on. Medicaid stopped in 2000 when I was appealing my Social Security. I think I got the aid back that year, with my doctors help. I also think that there is some kind of dollar amount that you have to spend before you get medicaid. It is worth it to try & keep trying. Also, have you any mental health records? They come in handy too. Boy, I feel like I am the SSA, SSI & PA expert here! Everything you always wanted to know. When I get tired, I get that speech thing going on too! Sounds like I"'m drunk, or I say another word for the word that I want to say, or I can't think of the word offhand!
Anyway, I hope this helps! When I first applied for SDSA, they turned me down flat! I was too forlorn to try again right away. So I reapplyed in 1991 & got it in 1992. It was the shrink who got me. Second time, I had dirty hair & dressed in black & convienently forgot the word I was supposed to remember!
Good Luck!
Chris
PS let me know if you want my email address or phone number. I've got the full package on my phone! Always willing to prep & help out!

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Permalink Reply by Chris Safford on August 21, 2010 at 1:52pm

You are soooo lucky to get it out!
Thanks for replying to my disscussion!
Chris

Michael B said:

Hi Chris I live in Burbank on southwest side of Chicago.My avm was operable. It bled june 1 and was removed june 2 2010.Not exactly the same but still part of the family.

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Permalink Reply by Kim P. on August 21, 2010 at 2:22pm

Chris,

Thanks for the info. I'm probably not near as well versed on the topic as you are when it comes to SSI and disability, but since I care for my disabled Mother who is on SSI and I get help from the state to do so, I don't think they'll think I'm disabled enough to qualify. It's like the blind leading the blind with Mom and I. We've both got our limitations so we muster along as best we can to get done what needs getting done.

Yes, I have a slew of medical documentation, but it's from years ago as I simply ride out the bad days the best way I can and don't have a doctor.

Also, I am blessed to own my home, I heard that was a disqualifier right there. You've got to be destitute before they give out the medicaid card. My Mother has a myriad of medical conditions and I have done my share of trying to get through that red tape with medicaid for her. She lost her leg three years ago. For close to a year they refused to authorize payment for a wheelchair. Why? Because a doctor wrote that she would heal. Yes, the wound would heal, but she's not a frog, her leg still hasn't grown back.

So are far as not working, to the outside world I don't have a job, I don't work, but I do work in taking care of my Mother, and when she first lost her leg, it was a 24/7 job for over a year, she had so many infections and illnesses. Thank God she is stronger and healthier now days.

I'll see what I can check out online about it.

Thanks so much,
Kim

Chris Safford said:

Hi Kim: Do you know that what we have is a permanent disability?????
I hope you have a lot of medical records! Will the docs say that you are disabled????? Also, you could go to Public Aid & apply for the medicaid card. They will pay for treatment & your travel expenses, like the plane ticket, or give you something to partially cover that! When I had my proton beam in Boston, they paid $125 a ticket for me & both of my parents. The rules for public aid are less stringent than for social security. Your deficits from this certainly qualify you for both. You can apply online for both! I am assuming that you are not working & that this made you stop! I was on medicaid since 1982 & SSA since 1992, off & on. Medicaid stopped in 2000 when I was appealing my Social Security. I think I got the aid back that year, with my doctors help. I also think that there is some kind of dollar amount that you have to spend before you get medicaid. It is worth it to try & keep trying. Also, have you any mental health records? They come in handy too. Boy, I feel like I am the SSA, SSI & PA expert here! Everything you always wanted to know. When I get tired, I get that speech thing going on too! Sounds like I"'m drunk, or I say another word for the word that I want to say, or I can't think of the word offhand!
Anyway, I hope this helps! When I first applied for SDSA, they turned me down flat! I was too forlorn to try again right away. So I reapplyed in 1991 & got it in 1992. It was the shrink who got me. Second time, I had dirty hair & dressed in black & convienently forgot the word I was supposed to remember!
Good Luck!
Chris
PS let me know if you want my email address or phone number. I've got the full package on my phone! Always willing to prep & help out!

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Permalink Reply by Kim P. on August 21, 2010 at 2:33pm

Just an added note: I have had to learn a lot of nursing things to take care of my Mom. And I have had to push myself to exhaustion taking care of her. Would I be able to do that for another human beaing? I don't think I could. How is it then that I have done so for my Mom? Love. It gives us the strength to do what otherwise would be impossible or highly unlikely.

I don't think bureaucrats can understand that.

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Permalink Reply by Chris Safford on August 22, 2010 at 7:45pm

Kim: I know about bureaucratic red tape. I know about the medical terminology. I started as an EMT-P in 1978. Then went to Associate's degree nursing school, until I was discriminated against & dropped out. Then I went for medical assistant school, which was waaaay beneath me as far as knowledge, I could have taught the classes! Do you have any brothers or sisters who could help you take care of mom. It seems like us disabled people always get handed the responsibility of taking care of loved ones. My sisters could give a shit!@ They are no help & my sister Norene's kid is the biggest exploiter of my parents, learned from her mother & her f--k'd up boyfriend, who ruined my parent's other house, that I am supposed to move into. I am biding my time & collecting whatever info comes my way & then I will report them to the elder abuse hotline for criminal damage to property & exploitation of elderly people. Hoo Boy, are they in foir a surprise! Soon, they will be sampling all that Cook County's finest inn can offer to those 2 special people who will be behind bars!!!! My niece will be arrested along with her destructive boyfriend! My parents are too nice to call the police on them, as a matter of fact, my dad went along with the jerk!
Anyway, there is too much to write in here & I really shouldn't get myuself so stressed out about this, but I feel that I have to. Don't you think thqat my sister should come in with me on this??? It's HER daughter who did this!
Enough is enough! Chris

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Permalink Reply by Chris Safford on October 5, 2010 at 12:12pm

Kim: I was just re-reading this & had another thought. You can own your own home & qualify for medicaid. If you arfe not receiving an income or getting any monetary value from your mom or other place, it would probably help on the appl;ication. On the application, it asks if you rent or own. You could put what your mortgage is in that spot. Also, maybe if when you go to the hosapital, you could talk to a social worker. In 1982, when I had to go to the hospital & didn't have any insurance, the social worker helped me to get madicaid. That was way back when it was really hard to get anything. Now with the new health care reform bill, it is easier to get medicaid. As far as soc. sec., you could ask medicare if you coiuld get a caregiver for your mom, to help with the heavy things that you do for her. Any little thought helps. Right now, I am having a hard time, as my nephew assaulted me last tuesday. He went back to heroin & was having a withdrawal. He hurt me, but didn't mean it. Here I am, tring to get him into a rehab, my parents think that I'm ok. I hit my head on a brick wall & the cemnent floor in the patio. Because I can walk & talk they think I'm ok, even though I spent all of Tuesday night into wednesday in the emergency room!

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