...idk what to title this rant of mine

i'm like maybe 7 years out of treatment now. i had a medulloblastoma, surgery, radiation, and chemo for it. it basically killed off my pituitary gland and i have horribly low functioning hgh levels. iv taken the hgh shot, i'm on thyroid medication and my blood work was just tested. lately though, especially now that i'm back into my second year of college...my memory seems to be completely depleted.
i don't know if its just me but i can not go anywhere or do anything without having to write myself reminders to put something away, or go meet someone/go to class (let alone when classes start), i have to write new grocery lists every single day because i can never ever remember what i need when i go the day before.
my mom says she cant remember a lot of things without writing them down but this seems so serious to me. i called my parents today to tell them and basically broke down because its so aggravating along with the fact that i had so much other stuff to tell them that i had forgotten.
not only is my memory shot but my hearing is too. i have to literally yell every word i speak, and cant ever understand anything anyone says. i'm constantly the center of the "are you deaf or something?" joke which i basically reply 'ya' to. however every year i get my hearing tested, my high frequency hearing goes down (i can no longer hear what a cricket sounds like) and i tell the doctors who test my hearing about my problems, but they never do anything for me
im a really stubborn person when it comes to working out and talking about the things that iv been through, but i cant believe that all these problems i have are because of the treatment they gave me and they don't seem to try and help me/i cant do anything about it
its the most frustrating thing in the world and no one ever has answers for me, or when they do treat me like i'm a 6 year old. its my memory, my hearing, and my hgh, i'm never gonna get any of that back either...


  • 18 Comments sorted by Votes Date Added
  • sorry that you're not getting the help you need.
    i cant believe that all these problems i have are because of the treatment they gave me
    likely a combination of treatment and the disease itself. but believe it. nearly every survivor has some combination of late effects and some can be debilitating. I have memory and focus issues (not quite as bad as yours). there's really not a lot that can be done for the memory stuff except exercising your brain (brain puzzles help some) and using techniques like writing notes or using a voice recorder. I have to write myself notes. I cannot go to the store without a list, and I need to keep it on the fridge and update it as needed so I don't forget stuff at the store.

    have you looked into hearing aids? might be necessary since it does sound like you've got major loss.
  • my life is now based on post-its...haha...lime green ones so i don't forget where i put them and know when i see them that they have important stuff written on them. thats the easiest way for me to do things now i guess, but its hard like walking up to my door thinking "hmm i should check my email when i get in", and then literally as i get the door unlocked, forgetting what i had just 'mentally noted.'
    about the hearing...the doctors who tested my hearing said i could get one but it wouldn't do anything for me...they have never provided me with any sort of help or information regarding this...they just tell me to get a hearing aid when my hearing gets a little worse
  • I guess you're the one who really understands how bad your hearing is. I know that in my case, I don't know what I'd do if my hearing was significantly damaged. I am sensitive, especially to high-pitched sounds. It would drive me nuts to have reduced sensitivity in that range. I use it all the time to find problems with mechanical and electrical stuff. I remember walking into a music class in college (a piano class) and being driven out by a loud high-pitched screech that gave me a headache almost immediately. Nobody else was affected by it, and on later questioning, ONE person in a class of 20+ said they heard anything at all (a faint buzzing). I walked around the class and found the actual source of the sound, which was caused by a feedback loop in the sound system in the room.

    My sense of smell is equally sensitive. As a result, my house has to smell absolutely clean to me, and therefore nobody else notices. I also get a lot of enjoyment from smelling a variety of plants outside. Natural aromatherapy, if you will, and some of them are smells that most people don't even recognize.

    Of course, my eyesight is equally poor. And leukemia got into my retinas and made it worse. I was practically blind for almost a year.
  • wow, it seems that any kind of treatment just has a super effect on something as sensitive as hearing. it a shame that it impacts people so horribly but i guess its something we just have to take with stride and learn to live with. i did pick up a newspaper for the first time in a while today tho and found an advertisement for a specialty audiology and hearing care center that i'm hopefully go to somewhere in the near future and see if they can help me more than my doctors at the hospital can. so i just hope that ends up working out.

    my eyesight too became effected after my radiation treatment. it wasn't an immediate thing (maybe 9 years post treatment). but it weakened my muscles so i had double vision all the time, and of course no one knew what it was or caused by, and my radiologists and oncologist and optometrists all got into a big argument about it. thankfully tho they were able to correct it (only about 4 months ago) and i was finally able to get my license and can drive!

    its a real pain in the butt to deal with all the different after effects and issues treatment has caused, and its crazy how much our senses can be thrown off! i guess we just gotta find out what works for us and what doesn't. (im just hoping a new audiologist will be able to help)

    Hope all is well now :)
  • I hope I didn't give the impression that chemo affected my hearing. It didn't. my sense of hearing is a very important part of who I am and having reduced hearing would be terrible. My eyesight was really bad at first. Couldn't see 6 inches in front of my face...could not recognize faces (I had to recognize people by voice). It took several months for it to improve, but it eventually did as the chemo killed the leukemia that made its way into my retinas, and my retinas had time to heal on their own.

    It didn't get back to exactly where it was pre-treatment, but at least eyesight can be "fixed". I plan to get LASIK within a couple of years.
  • Have you looked into ASL? A few basic signs could be learned to enhance speech so so others could put emphasis on some words that could easily be lost or not heard, plus it's nice to be able to hold a conversation with someone when it's either really loud or everyone is supposed to be quiet.

    I've also found using a smart phone app really helpful in remembering stuff. My phone has a good calendar that I program everything into and I use the voice recorder to record to do lists each day that way I can listen to it whenever I need to.
  • that's great that your eyesight reverted back to 'normal' again, Iv known lots of people and friends of mine who have had LASIK and its worked wonders for them. I have nearsightedness (not from treatment or the tumor) but what I do have as a result of radiation is severe incorrect able double vision, I'd be able to have LASIK for my nearsightedness and would get it done if I wouldnt have to wear glasses anymore, but I basically have to wear glasses for the rest of my life because of the prism lenses that I have to wear to correct my weakened eye muscle

    on another note, no Iv never heard of that (asl), my dad had mentioned to me a while ago that I should try something do I can maybe watch them speak to understand them more but Iv never really done anythig but talk to audioligists. I did look into a hearing aid tho and because I'm not 18 anymore, insurance will not cover one. it'd be more than amazing to actually be able to hear correctly again. and the notebook app on my iPhone has become my life, I basically put every single thing I have to do into a new note and just make a new one day by day, my calendar as well has become completely full of tasks I have to accomplish and things to do, even if it's a simple task like set your alarm before sleeping, I'll basically set an alarm for it so I actually remember and do so!
  • caligal;7288 said:

    I did look into a hearing aid tho and because I'm not 18 anymore, insurance will not cover one.

    wtf? that seems strange
  • well a few days ago, i talked with my audiologists and insurance and i get 0$ towards a hearing aid...i can still buy one and get one, but with 0% help from insurance. since im not 18 anymore, im not covered...
  • hmmmm, you should have coverage under your parents until you're 24 now, IIRC (if you are a student, I think is the stipulation). I think that part of the health care legislation has gone into effect already. Is your insurance company saying that your coverage is reduced? That seems really shady. Times like this, it's worth knowing the policy forwards and backwards. If you're under your parents' plan still, I can understand why you wouldn't know this. But whoever is paying for the policy should.
  • see i am a student, but for everything like dental and optical to regular doctors office visits i'm still under my parents plan. all the insurance company said was that since i am not 18, im not covered for a hearing aid (0% covered.) i do need to look into this more and probably have my parents research a little more for me too.
  • that's very strange and shady. But nobody ever accused insurance companies of NOT being shady. We all have to fight tooth and nail with them to get them to cover what they're supposed to cover according to the plan we pay for.

    I think there needs to be a watchdog group that can enforce fines on insurance for hassling customers. I think most people who HAVE insurance pay more than they have to because the hospitals AND insurance companies count on customers not knowing every detail of their plan, and not fighting it. My parents are dealing with some aspects of that now.
  • well said! im not usually the one to have to deal with insurance (its usually my mom or dad) but soon ill have to, but like this hearing aid thing they told me is ridiculous and maybe if i raise hell with 'em about it ill be able to get some where. its really unbelievable how shady they really are for the last 5 years or so, they haven't paid for my mri's or hearing tests or other expensive things that are mandatory post treatment but they don't believe are, so fights and phone calls have gone on for days with the insurance and doctors offices about them. i guess corruption lies where help is sometimes most needed?
  • caligal;7316 said:
    i guess corruption lies where help is sometimes most needed?
    I think that's true. So long as insurance companies are able to dictate the way doctors practice medicine, there will be problems.

    the doctors are afraid of being sued and they pay high malpractice insurance rates, so they order tests that may not necessarily be necessary to CYA. but then the health insurance companies try to say that tests are not necessary (even when they are) and refuse to cover them. that is a nice paradox. My plan covered MRI's, but we had something like a $250 copay for each one. That gets expensive when you're monitoring brain lesions.
  • I can relate to alot of what your talking about.
    This is from a previous post I made:
    "I was diagnosis with a malignant (cancer) brain tumor in May of 2000, shortly before my 14 b-day. I had to go to Arnold Palmer Childrens Hospital because there were, and probably still are, very few pediatric nuerosurgeons in the United States. I live in Ormond Beach, Florida and this Hospital is in Orlando, Florida which is about 1 hour away. I had it removed a day after I was diagnosed and ended up lying in a hospital bed in a coma-like state for my 14th b-day. I was in the hospital in that coma-like state for 6 weeks after the surgery and then I was moved into a rehabiltaion home for another 7 weeks. I had physical, occupational, and speech therapy while there. I couldn't talk for 7 1/2 weeks after the surgery. Of course, I didn't get speech therapy for the first 1 1/2 weeks at the rehab center because I couldn't talk. I went through 6 1/2 weeks of radiation and 52 weeks of chemo thearpy on top of that, which was loads of fun (sarcasm). It was hard because the tumor was on my brain stem and severely affected my balance and the coordiation in my left hand. I also went through tons of physical and occupational thearpy after I came back home and have improved my balance and coordination immensely, though it's not where it was pre-surgery. I made it through all that and then 11 years later, the doctors discovered another brain tumor . I had it removed in January of 2012 and luckly it wasn't malignant, so I didn't have to have to get chemo thearpy or radiation again. It was also right beneath my skull, lying on my brain and it wasn't in a crictcal area like the first one was.It was near my left temporal lobe which is pretty much where the top of the ear touches your head if you flatten it with your hand. But, it's still brain surgery no matter how you roll the dice . Remember, I was 14 at the time this happend so I was in the 8th grade and thus it had an enormous impact on my socialization. I was homeschooled for 9th and 10th grade and went back to public school for 11th and 12th. I had friends in highschool b/c some of the kids that went to middle school with me also went to the same highscool that I attended. But the problem was I had no real close friends and I tended to isolate myself from other people when I wasn't in school because I felt so different. Then after I graduated from highschool, it became worse. I didn't know very many people at the college I attended and the isolation got worse. I got my AA and decided I had enough of school. Needless to say the isolation got even worse and then I found out I had another brain tumor, after 11 years tumor free. I had surgery to remove it in January of 2012. It wasn't cancer, so I didn't have to go through chemo or radiation. It wasn't in a critcal part of my brain either, so I didn't have any side effects from the surgery. A month and a half later I fell into a deep bout of depression b/c of all the isolation I had been putting myself through and from bottling up all my feelings from the surgery in 2000 and 2012. It's better now, but I still have days when I get down. "
    I can difinetly relate to the frequent forgetfulness. I'm always forgetting where I put my glasses and stuff like that. And to add to that I also had dimished hearing with the bouns of a constant ringing in both my ears. I could probably benefit from hearing aids , but I'm stubborn. My hearing only seems to be a major problem when there are a lot of people talking at once. Not to say I don't say "Huh" or "What" when talking to someone face to face with is really annoying to me. The radiation to the head, neck, and spine impaired my pitutary gland significantly. I had to go on GHG when I was a teenager, but I am able to get along without it now because I have reached my peak growth and I produce enough of it naturally to maintain a feeling physical wellness, mental wellness is another story LMAO!!!. My thyroid was totally impaired by the radiation, so I have to take Levoxyl to produce Thyroid artifically. The radiation also left my partially bald probably cause it killed some of my hair follicles, but that insignificant compared to the other crap.
  • 1 year ago my memory was my weakest spot. My coworkers got pissed with me for forgetting simple things. I did some memory exercises that helped a lot. Would you like to know what they are?
  • Oh post cancer brain, how I loathe you! It is a struggle, I write it all down now. Sticky notes are my friend for sure.
  • Jim Strieter;7408 said:
    1 year ago my memory was my weakest spot. My coworkers got pissed with me for forgetting simple things. I did some memory exercises that helped a lot. Would you like to know what they are?

    ya wow that would be great if they helped you out! iv been having a slightly easier time now, but just because of the fact that i carry my iphone with me everywhere that has a calendar filled up hour by hour of my day!!! i'm in college and my general ed huge lecture hall classes and tests are a struggle for me, especially when it comes to test taking and chapters and chapters worth of memorization. i try and tell people about it and explain myself but all i get is a "thats BS" response, they have never seen my desk calendar and my reminders and notes list and calendar in my phone, and my post-it lists on my wall in my dorm room!