I was diagnosed in 2015 and have done a lot of research since. I'm 56 and I discovered there is a lot you can do to help yourself. This condition is not widely known or how to treat it. Have you been told that it can cause blindness? You need to be followed by an opthamologist on a regular basis. Swelling at the base of the spine that presses on sciatic nerve? Short term memory issues? Really bad headache from the top of your head down the back of your neck?
I also have this condition and am chemical sencetive and have to us a diabetic called Methazolamide. 75mg . Look up John Hopkins medicine health library on line. it is Back East they have information on this condition and they are also doing a study. They say no shunt should be put in because they are wrapped with problems and requires usually multiple surgeries every couple of years. What are all your symptoms? Do you suffer short term memory issues?
I had my shunt put in last July 2017. Have had recent set backs. Before you descide to get a shunt and I’m sure you will. Please do not make the same mistake as I did. I don’t live near a big city where if I have a complication with my settings there is no one to fix it. Not even a ER. I would have to drive 6 hours away and even with insurance you still would have to pay and extreme amount in the ER or doctor visit to change or check the settings. They do not tell you that after you spend hundreds of thousand of dollars to get it done. And complications with the tube that extends in the stomach be sure it’s the right length so it doesn’t stab u from the inside. You are welcome to email me if you have questions with real honest answers . joanngomez.***@****
That's full of crap I have IIH had a shunt placed in my brain still having problems with the IIH also my lower back is broken in four spots not able to lift over 2) pounds stand for long periods of time or sit for long periods of time. And SSI denied me their reason was because I know how to cook. Well yeah doesn't everybody. I kinda have to know how to cook because I have kids.
I have been diagnosed about 1 year ago. It's very painful. My doctor only gave me meds to where I can't drink anything carbonated. 1 year later I'm worst than ever. My eyes hurt so bad. My head too. I'm afraid to drive and I drive clients with mental disabilities around to places. I can't afford to not work. I have 2 kids and a husband and he pays child support to 2 other children and we live from check to check just to survive. That's including getting foodstamps too. I make too much to get medicaid so insurance is hard to come by and when I do have it I can't afford it still with the copayments and the bills coming in. I just don't bother going anymore just to save more money for home. Sad I don't wish anyone with this.
I to have this awful disease and I also have the mixture of migrants with the headaches from the fluid pressure I'm already going blind and I don't wish this pain on no one and I'm sorry that you all have to go though this I know there as been times that I have cried and said I just couldn't handle the pain no more that I was dieing and have even said that something had to give I would be in so much pain god bless each and every one of you
I have pseudo tumor cerebri and I also have seizures and chronic migranes I was woundering how possible I would be to be able to get disability because my neurologist said due to my age he didn't want to concider me disabled.he said I was disabled my since im so young im not disabled.
i have been diagnosed with pseudo and my pressure from my first spinal tap was 50 and my second was 30 the meds don't do much and off top i have migraines that crash with with the pressure i've lost 23lbs in 4days because i couldn't eat anything and i'm still trying to force myself to eat now i can't go to work and i love my job i didn't know of such a thing called pseudo tumors but it'v very stressful to be honest from how much pain i feel from it i become very afraid at times like i'm going to die because my brain can't talk such pressure and my body can't take the pain like how do we deal with this?
I too suffer from the same condition. I have had it know for 4 year. I have more bad day than anything else. I have had 2 shunt placement. One got infected to bad my entired stomach was infected.. I was hospitalized for 3 weeks just to clear up the infection. My vision is becoming so bad. My head hurts severely everyday. Ihave lost 3 jobs behind my condition. I am going to start the process to apply for SSDI. Im only 36 years old. I don't want to be like this. I hate it. But I have to deal with it just like you. Good look to you....and me....
I have been on ss disability since 2002 for pseudo tumor cerebri. I am still on it as I still suffer from the condition. I have had four shunts and now suffer from several other neurological conditions, one of my most disabling one being neuropathy. When I was first diagnosed with PTC, my specialist told me that the condition would probably go away in a few years. I was diagnosed in 1998 and here it is 2013, 15 years and four shunts and 25 spinal taps later and now they believe that it will just continue to recur. Hope you received disability because this most certainly is a debilitating disease.
There is a specific example about this on the "disability secrets" website...that seems very helpful, especially if you have the debilitating headaches. I get headaches weekly and missed over 30 days of work last year in 10 months for doctors appointments and headaches/episodes of extreme pressure causing extreme eye/face pain. I am thinking of applying for disability because I was very close to losing my job as a teacher this year because of my absences. http://www.disabilitysecrets.com/resources/disability/if-you-cant-sustain-and-regularly-attend-full-
What was your outcome because I also have pseudo-tumor cerebri and I just applied for social security. I have migraines that are out of control and they are very painful. When I go to the emergency, they give me morphine to take the pain away.
Josh,
Sorry to hear about your medical problems. When applying for Social Security Disability get as much medical evidence as you possibly can. Getting on Social Security is not easy, I was placed on it once and am in the process of applying for it again, because my seizures are out of control. I will say this, do not be surprised if you are denied the first time around. Get ahold of an attorney that does Social Security cases to help improve your odds. You can write congressmen and state representatives and let them know about your plight. It does help, I've done it. Do not give up and keep collecting all the medical evidence you can.
Sorry you have this condition and I hope the shunt procedure brings you some relief. The way Social Security Disability works is, whatever symptoms you are experiencing that make it impossible for you to work, THAT's what they give you disability for. For example, with pseudotumor cerebri, since it is not listed as a specific condition like epilepsy is, you go to what your condition closest resembles in their lists, then the symptoms it would produce on which body system, which is often you'll wind up with a general loss of vision, as well as some other symptoms.
So, let's say this is the case, that your eyes have been acting up awful and you've been to an eye doc, he's measured your vision acuity, and it's less then 20/200 or something. Then the way you would apply is you go to the Social Security Disability government website (it's something like www.socialsecuritydisability.gov) and find their list of disabling conditions in the Blue Book online at their site, and you would file your disability papers not only by naming your condition, but also according to what group of disorders your condition best fits, and then how the symptoms are ruining the function of what part of your body.
Thus, you'd put you had the pseudotumor cerebri, explain how terrible it's been for you, date you stopped work and whatever else they want, but you'd also refer to it as, say, a brain tumor (that's the closest disabling condition to yours) that has increased intracranial pressure, and this has affected your senses (this is the body system affected), in particular your eyesight, and then you tell them what your measured limitations are and so forth (you should provide a doctor's recorded evaluation of what is wrong with you).
I hope this guides you a little bit on how to go about getting disability for the symptoms of your condition that prevent you from working. It's not as easy as just putting you have a particular problem and that's it. You have to help the SS people out and make sure you report it also according to their list of conditions, however it fits best (since there is not a specific section for pseudotumor cerebri). I've had to apply for disability for myself before, I vagulely remember their listing titles for conditions (neurological, brain, etc.)
and came up with the above "pretend" scenario, so as to give you a boost on how to approach this. Get the help of a former teacher, a librarian, a relative, perhaps even one of your docs, or a free legal clinic if there's one in your area.