Discussing my issues IS hard & difficult

Do Tues 25 is our first radiation treatment what can I expect from that I know it can take a few yrs to shrink will have to ask the doctor the size of it.i just we could communicate better than we do he my son knows I am here for him …I just hate seeing him depressed etc. I pray for him to become a decent young man he is my son.

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well son was to have his photon raditaion on tues this past week but had to reschedule due to medical insuraance they need an authorization OMG frustation they could have called us in advance so not sure but am learning lots thru u all on this site so thanks very much take care and keep in touch ok thanks for all your advice and just listening to me too

Pamm

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God bless Pam, that’s why we are here for each other, we all gotta stick
together, im having insurance issues also, add that to everything else
and yeah, overwhelming, how old is he ?? Also concerned about you and
your well being, thank you for reply, always here for you when needed,
take care. POSITIVE !!

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My son is 27 yrs old we r in Tucson az where r u at u gave had this for 27 yrs right and still fighting SSD keep it up good luck to u too thx for the support

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I’m in Topock az,. Up by havasu, I made mistake of turning down SSI post
surgery , now that I really need it there’s saying , no way, you went the
27yrs didn’t you?? O. and the same old, you look ok, so I was about
your son’s age when I had a grand mal and surgery, long before gamma
knife, going to hospital tomorrow for angiogram, MRI with dye injection,
I have developed a lump under scalp on top of skull at point of
surgery,that’s why I’m going in, this is the latest issue, It really
baffles me that the doc orders what they need and insurance company
actually makes the call,. I guess that’s why they call it PRACTICING
medicine, take care, hang in there,

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You can try some relaxing sounds you might consider his octave I can’t handle some Hipas ourselves or watching TV is all racket to me I can listen to the Stereo all day long as long it is what I can understand try some candles around the house

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K thanks for suggesting that he doesn’t listen to what most 27 yrs old listen to he doesn’t what tv mainly you tube but will suggest to him thx

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Sorry for the late reply but I’m happy to hear that!! You’re welcome!!

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So he had radiation treatment on Tues Wed he was hospitalized for low blood sugar as well as a psychotic breakdown my bf don’t want him at the house afraid he will od like his late wife back in 2000 she was a nurse who OD on oxycodone. Any suggestions ???

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Hiya there

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I find that because you look fine people don’t think there is anything wrong with you.

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Hello all, my friend gave me this website to release and tell my issues an it helped him.
They informed me wigh my AVM when i was 16 yrs old back in 2006 when it bled
Now i got some of the sypmtoms i got before
When i went on so mwny rollar coasters things that gave me pressure. Apparently they saw that my avm grew and i need another either gama knife angiogram. The drs. Gave me pills to take until my opeation comes pille called Keppra.but now i feel so depressed and it feels like the worl is not real and everything is not the same. I want to know if someone is going through what i’m going. Pls help :frowning:

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There are many of us feeling the same way as you do. I am on the same medication and have to go to work and act as normal as possible. It is very hard but getting out and doing things is good for your mental state. Believe me when I get home I crash. We are here for you try to stay positive.

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Reem,

Welcome to the site. As Kell says, there are lots of people here who’ve been through the same mill as you. Having an AVM can be a tough, tough thing but if we stand together, we can be stronger and help each other through.

Whenever you need, just tell us what’s going on – feel free to start a new +Topic of your own – and the plan is that we are here to support each other.

Very best wishes,

Richard

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Hello, thank you so much for your amazing support! It made my day!!

Regards,
Reem

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Hi kell! Thanks for the reply :heart: yes omg me too i go to work like nothing is wrong but thank god work has been so supportive.
I can’t wait till i get my gamaknife done and hopefully be the same and better again.

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I worry about my son as well. So far he just has the headaches but I worry about him living alone.

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My son too lives alone he is almost 28 luckily my nephew doesn’t live too far from him he had radiation treatment for his avm in Nov 2016 but was smoking toouch medical marijuana that he got to take his seizure meds and had seizure was transferred to hospital was there for a week first they thought his kidney were shutting down luckily he pulled thru thank god but as a parent we will always worry bout our children despite their ages

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Yes and that is very frustrating

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Hi Skippy I’m sorry to hear how you feel but I too feel the same. Family, Friends and Co-Workers all glaze over when I tell them I have a spinal AVM. They never heard of AVM period, they don’t ask any questions or comment after I finish explaining what is it and they change the subject or brush it off like oh so you weren’t having any demyelination?? And I’m like yes I am. And then I give up. I tried to have my husband read about it online but he doesn’t say much either. So I understand how you feel. This website is very helpful to feel like you have someone. I hope you find the understanding you are looking for in your life not online. I hope I do too. :slightly_smiling_face: Stay positive.

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