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Post by lw on Oct 20, 2013 4:19:30 GMT -6
They do have a patient advocate (or PALS) office in the hospital but I think my best bet is probably to wait until Friday. I am just so grateful that it's my neurosurgeon who is reviewing the scan - even if I'd gone to A & E there's no way I would have got to see somebody of his calibre. I do have that in my favour and I just hope that he can help me with this. The headache is getting worse and the whole of my head/scalp is really tender. Even brushing my hair hurts.
I should really say that my first MRI scan wasn't at Charing Cross, it was at my local general hospital, and I am glad that I am no longer under them.
Pringleman, I would probably wait until after Christmas so as not to ruin your celebrations. Funnily enough, I had my operation on 22/12/08 and was in hospital all over the Christmas period that year. It was certainly a strange one!
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Post by funnywalk on Oct 21, 2013 4:51:36 GMT -6
Hi Pringleman! Love the avi... Here is my tip for coping with MRIs which are unbelievably horrible and intrusive: I think of myself as acting in a film about extra terrestrials. I am in their world as a volunteer, not abducted or against my will, and my task is to learn their language. All those weird sounds are actually the aliens having a conversation about me, they say things like 'oh you poor baby' or 'got some milk here, you can have it', but because they aren't too bright they have to repeat the same thing over and over. Some of the aliens are kind and some are fed up with their job and say 'I'm so sorry I cant help you' - repeated of course. The conversation changes, but basically they are not as clever as me! Last time I had an hour long MRI I was able to fall asleep - unbelievable with that volume of sound in my ears! Yes, I am mad, but sometimes it helps.
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Post by funnywalk on Oct 21, 2013 4:52:53 GMT -6
to LW = virtual hugs and love to you.
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Post by funnywalk on Oct 25, 2013 15:19:48 GMT -6
Hi LW, sending love and constant thoughts. xx FW
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Post by Leofwen on Oct 25, 2013 16:26:24 GMT -6
Hi LW
Thinking of you; let us know how you got on
Loads of hugs and support accross the ether
S xx
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Post by dolphintale on Oct 25, 2013 17:46:52 GMT -6
Thinking of you....
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Post by peaceandlove on Oct 26, 2013 3:11:29 GMT -6
Hye LW,
Want to tell you about myself. Was diagnosed with SCT in 2010 and made a surgery to resect it with no benefits and no damage (unqualified doctor). Last Christmas one of my "" Doctors "" propose me to make a brain MRI only for the possibility of having a brain tumor since I have one in my back. The results came + . I do have one in my Tectum midbrain. It is a tectal glioma. I understand from doctors that this area can not be operated. Once it grows it will make me loose seeing with my eyes, and possibility of Hydrocephalus which can be treated with a cerebrospinal fluid shunt to drain the CSF to reduce pressure which is creating pain. Till the moment I have no symptoms I thank god. To be honest with you, after I make research I found few people in the world are having this. It is more remarkable for children. I think once you are aged your body stop growing and this cyst or tumor will stop growing too and the factor of risk will be less but nothing is sure. I found gammaknife on youtube and I email them and they said that they can treat it. I wish that your MRI is clear. Wish u all the best luck. By the time I make the MRI I have had a pain in my head from the back near to my neck. By that time I was not sure whether this pain was coming from SCT or from the Brain Tumor(or cyst). Can SCT affect the head and neck and create pain in there. If someone knows please answer me.
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Post by funnywalk on Oct 26, 2013 3:57:14 GMT -6
Saturday morning. LW. you have been in my thoughts so much. I hope you will share with us whatever is happening to you. But if that is too hard, just know we are all sending love.
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Post by lw on Oct 26, 2013 9:17:05 GMT -6
Hi all,
It's good news and bad: I don't have a brain tumour, I have a problem with the artery that supplies blood to the head. As this isn't a case for the neurosurgeons (yippee, no more neuro ops) I am being referred to a vascular specialist for further investigation. My consultant has told me that I need to contact my GP asap for an ESR blood test, which I will do first thing on Monday. I'm obviously very pleased that I don't have a brain tumour, although I still have this nasty unresolved headache. Yesterday was quite an horrific day. I almost passed out at the hospital and had to walk around the place with a sick bowl. Gross.
I'd like to say a big thank you to everybody who has held me in their thoughts. I know there are many others on here finding their own situations tough. I guess we just have to keep on plodding on...
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Post by pringleman on Oct 31, 2013 7:38:42 GMT -6
Hi Lw, was very glad to see when I logged on on the weekend that you don't have a brain tumour. Sorry I did not reply but been having a rough patch myself. After encouraging other people to get out and ignore the symptoms I did myself and clearly over did it. Been a shocking week. Things are starting to have sensations again and feeling positive enough to share. Going to book an MRI tomorrow. Your advice is sound but I think things are moving too fast to ignore. It is scarey when your fingers do not want to behave - much worse than the legs even if it is only minor. But plodding on as you say.
And Funnywalk thanks for the MRI coping advice. Think the aliens who visit me must have bad stutters. K K K Ken! I think I did that I would laugh and then they would tell me to be still or we will have to start again. To fall asleep with the noise is amazing. Do you get earplugs there? They always want to stick them in my ears and get offended when I do not let them and insist on putting them in myself.
Love and light to you all.
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