Friday 4 February 2022

This week my Word of the Week is: Results! #WotW

This week my Word of the Week is:

Results

Two weeks ago in my word of the week blog post, Unknown I said I was being silly for worrying about Ellie's MRI scan. The scan was just routine before she got fitted for a hearing aid and it wasn't expected to show much. I was wrong. We thought on Wednesday it was a quick chat with the consultant at hospital and then Ellie would be getting fitted for her hearing aid. That didn't happen, there wasn't much mention of the hearing aid. It turns out the doctor wanted to give us the results of her MRI scan. 

The MRI shows that Ellie has had some small bleeds on her brain. (They're old one's). The doctor couldn't tell us when from but as she hasn't suffered any major head trauma it's hard to say when. The doctor asked if she had ever banged her head badly and we couldn't think of one instance which would have caused something like that. Over the years she has bumped her head but nothing that has even caused a bump, lump or bruise. Things like bumping heads with her sister, crawling into things or heading a football. We are being sent to a neurosurgeon to shed some light on it.

I asked if the bleeds could have had anything to do with her heart (She had open heart surgery to fix a hole in her heart when she was 18 months old and now has leaky valves.) He didn't know anything about her heart issues despite having her notes in front of him in paper form and on the computer. He said it could be but that is up to the neurosurgeon to decide.

We haven't had the best luck with the doctors in Scunthorpe and the doctor that we saw wasn't the greatest, he was another stand in, was about 80 years old and just mumbled. He was there to tell us facts, using words we didn't understand and nothing else. He was reluctant to answer any of our questions as he wasn't an expert on the brain which now I've thought about it makes sense he didn't want to say anything wrong, worry us or provide us with wrong information.

The nurse again was amazing and explained everything the best she could. She did tell us not to worry about the word neurosurgeon because that's just what the brain specialist is called, it doesn't mean Ellie needs more surgery or that it is anything serious. She also made sure that as well as marking the neurosurgeon appointment as urgent the hearing aid appointment is too just to take some of the stress off us. 

I am really kicking myself at the moment. For years just after Ellie had her heart surgery the hearing doctors wanted her to have a MRI just to aid their research if I had let them do it then we wouldn't be sat here now stressing. I don't think it would have changed anything but it's still frustrating. Even after the MRI scan we are still unsure what has caused Ellie's hearing loss, they are still putting it down to bad luck and bad genes. 

Now we wait for an appointment with the brain person and the appointment to get her hearing aid fitted. I'm not going to lie and say I'm OK but I am feeling better and more positive than I was on Wednesday. I think it's the worst hospital appointment we've ever had and that includes the one's where we were told that my girls had heart defects and needed surgery but at least then there was a plan and we knew what we were dealing with, at the moment we are still in the dark. Ellie is fine though, she is fit and well and again she is taking it all in her stride.

I hope you've all had a good week?

Word of the Week linky

12 comments :

  1. There is nothing worse than not getting the results you were hoping for and still being in the dark about things. Hope it all works out for you soon.

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  2. I'm sorry to hear about your unexpected results, that must be very scary for you all :( I hope that the next appointments come through soon, take care of yourself xx

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  3. I understand how very worrying this is for you. It's horrible when you go to hospital for one thing and end up leaving with the results of something else. When my first bleeds were found I was having an MRI for something else. Mine were old too, I wasn't bleeding at the time. The neurologist just gave me another MRI 6 months later and my brain issues had gone. (Some may disagree, lol) xx

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  4. Oh boy that is stressful! My oldest son had to have an MRI and his neurologist was on vacation and unable to give us results for weeks so his primary care called and told us he'd get the results... well that poor doctor had to call me at home at 5:30 on a Friday night and break the news that there was something on the MRI and it was not a clean scan BUT since that was not his field he couldn't tell us more than that. I could tell he felt so bad for making me a wreck over the weekend when he really thought it was going to be a clean easy reading. The not knowing was awful. I hope you get some answers soon but I completely agree with you that the important thing to focus on right now is that your daughter is healthy and happy and fine.

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  5. Oh my goodness, what a worry for you. I can totally understand why you would be worried, but glad you are feeling better about it now. I hope both of Ellie's appointments come through quickly and you can get some answers. x

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  6. Oh no, I can imagine how awful you must feel. It's always scary when you find out there's something sinister you knew nothing about, especially as a parent, as you feel you've let your child down somehow. I honestly don't think having the MRI all that time ago would have shown up the problem, so don't feel bad about that. Fingers crossed you get reassuring answers at your next appointment. Glad to hear Ellie's chilled out about it all. Sending hugs xxx

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  7. Sorry to hear that those weren't the results you wanted to hear. I wish you wouldn't blame yourself though. Sometimes that's life and things happen. I am glad that Ellie is well, despite everything. Hoping you have a lovely week coming up.

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  8. That must have been very scary. Made worse by the fact you couldn't get proper answers. Hopefully the next time you can get all the facts and info you need xxxx

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  9. Sending hugs. You must have been so scared. Hopefully it's nothing serious and can be treated.

    #MMBC

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  10. Oh wow, this sounds so difficult for both you and Ellie! I'm really sorry the doctor worried you so much but so glad the nurse was so reassuring. I know a neurosurgeon does more than operate on the brain, he'll likely know more about how to interpret these MRI results than a general neurologist. I'm praying if that's okay.

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  11. I'm sorry that it was such a tough appointment for you all and that the results of the MRI have been so worrying. It doesn't help when you have to wait for some kind of answers = as you say, the doctor may have just been wary of giving the wrong information, although it does sound like the nurse was helpful at least. Glad that Ellie is fine and hope that the neurosurgeon appointment comes through quickly so you can start getting some answers. Big hugs to you all x #WotW

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  12. So sorry to read that Ellie got results that you really weren't expecting. It does sound like you are getting the correct follow up appointment. I hope both appointments come quickly for you so that you can get some answers #WotW

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