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Newly Diagnosed

  • Sueslater
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1 month 1 week ago #1059 by Sueslater
Newly Diagnosed was created by Sueslater
Hi, everyone, I have stumbled across this forum and grateful to those who have set this up. I have had read a number of your stories and have found then to be courageous, inspirational and comforting at the same time.

In july 2019 I finally went to the doctors about the numberess I was experiencing in my feet. I had ignored this for months but the numbness starting spreading to my left leg and hip. I was also experiencing bladder difficulties. My doctor did blood tests and referred me to the neurologist. 5 months later I finally saw the neurologist, needless to say my numbness increased in the time I had to wait. The neurologist said I needed MRI scans and nerve conductivity testing. One month later (yesterday) I had my MRI scan at 10.00 am. by 18.00 I had a call from the neurologist explaining they now know the cause and that I have a spinal tumour and that it was treatable. I am now being referred urgently to a spinal specialist, and now waiting anxiously. My tumour will need to be removed by surgery it is in the thoracic region. My life has just been turned upside down, on one hand I am relieved that a diagnosis has been possible but now fearful of the surgery. Its going to be tough road ahead.

Sue

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1 month 1 week ago #1060 by louise@tycoch
Replied by louise@tycoch on topic Newly Diagnosed
Hi Sue, welcome to the SCTF. My name is Carolyn and I am the fundraising manager. I am also joint moderator at the moment to help Carole Levine out . Carole started the forum in the 1980’s.
Sue, I was saddened to hear your news but on the positive side it’s operable which is good news. Clearly you must be very shocked at the moment and still taking it all in.
I’m sorry that you have had such a long wait to see a neurologist. I’m afraid that’s not unusual but the ball appears to be rolling now and I think once you are seen by a Consultant Neurosurgeon and he or she is able to talk things through with you , you may be able to put things into perspective.
You say it’s in the thoracic region ? Do you know the name of the specific tumour that you have and the size ? This information should be on the MRI result and you are privy to that information if they haven’t told you as yet.
I am happy for you to contact me privately if you wish Sue , just let me know and I can send you my contact details .
Carolyn .

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1 month 1 week ago #1061 by Sueslater
Replied by Sueslater on topic Newly Diagnosed
Hi Carolyn,

Thank you so much for your reply. Things are moving quickly for me now and I am in the hospital and a decision will be made this afternoon on my case and whether they will operate this week. I have been told that the tumour is in the T11/T12 region and although not an emergency (yet!) is urgent and needs to come out.

Now that I have seen the MRI scan and spoken face to face with the neurologist/surgeon I am not as distraught as I was in the first 36 hours. They believe it is either a meningioma or a schwannoma, not sure of size, need to ask that question. I will, now that I can a bit more clear thinking ask for the exact type.

Bit of a rollercoaster couple of days but I am now calm, sitting with a cup of coffee, my laptop and headphones (lifesaver) in my own room in the hospital (not sure that will last so enjoying this while I can).

So glad this forum exists.

Thanks once again Carolyn

Sue

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1 month 1 week ago #1062 by louise@tycoch
Replied by louise@tycoch on topic Newly Diagnosed
Hi there Sue. Things do sound like they are going at a rate of nots, which is good. You sound like you are in a good Centre and I presume they are holding a MDT meeting ( multidisciplinary team) meeting to discuss your case and the fact it hasn’t been classed as a medical emergency is good . That gives them a chance to prep you well for surgery as I presume they will give you a course of steroids post surgery to reduce swelling, if they decide to operate sooner rather than later. I also have a little bit of inside knowledge as I was a nurse .
They originally thought my tumour was a shwannoma but it turned out to be a ependymoma. I’m glad your feeling a lot calmer. Yes, enjoy that side room while it last lol. After surgery you will be on a high dependency unit for a few days so try and relax as much as is possible in the circumstances.
Thinking of you .
Carolyn

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