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Hi my name is Scarlett


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Guest Scarlett

Hi ,

Sorry I was so happy when I discovered this site and eager for advice,that I didn't realise I should have posted here first. I have only recently been told I have an 8m carotid aneurysm and a cyst on my pituitary gland. I am still in shock and very afraid. I paid for an MRI at the Queens in London. I live in South Wales. I went there for a second opinion and discovered they had misread 3 MRI's ,one CT scan and one cardioid artery scan.

I am too afraid to have surgery in Cardiff and was wondering about the Walton in Liverpool after reading a post here tonight.I am not seeing any neurologist now and just feel totally alone with this on my mind constantly.x

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Hi Scarlett, welcome to BTG!

I'm sorry you are going through this horrible time of worry and anxiety. There are members here who have aneurysms who will come on and share their experiences. Some have their aneurysms monitored annually and some have had procedures done to avoid a bleed. The news must have been a shock for you, especially as you had been scanned and it was missed.

I had a brain bleed where the cause was not found and I've found great support from the warm and caring people here on BTG.

Sandi K.

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Hi Scarlett,

I, too, am sorry you are going through all this which is causing you a lot of anxiety. Would it be an idea to make an appointment with your GP to discuss your worries if you haven't done so already. I appreciate you feel your nearest hospital have let you down, but wondered what in particular made you ask about Liverpool with it being quite some distance from you. I personally wasn't treated there so am unable to make any comment, I think however that I would be happy to attend any hospital in the uk that specialize in neurosurgery. I am currently being monitored in Sheffield for an unruptured aneurysm, plus a wide neck on the one that ruptured which may or may not develop into another aneurysm, so I do appreciate to some extent how you feel.

I presume once you have decided on a hospital, then your gp would be able to refer you? I'm sure then you would hopefully start to feel a little more reassured about the situation.

Best wishes,

Sarah

Edited by kempse
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Guest Scarlett
Hi Scarlett, welcome to BTG!

I'm sorry you are going through this horrible time of worry and anxiety. There are members here who have aneurysms who will come on and share their experiences. Some have their aneurysms monitored annually and some have had procedures done to avoid a bleed. The news must have been a shock for you, especially as you had been scanned and it was missed.

I had a brain bleed where the cause was not found and I've found great support from the warm and caring people here on BTG.

Sandi K.

Hi Sandi,I'm waiting for the Walton Hospital in Liverpool to get back in touch with a price for both types of surgery. The clipping and coiling. I am hoping it won't be as high as the Queens Hospital quote. I am terrified,mainly because it's quite large and also because I have no Hospital date set for sugery x

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Guest Scarlett
Hi Scarlett,

I, too, am sorry you are going through all this which is causing you a lot of anxiety. Would it be an idea to make an appointment with your GP to discuss your worries if you haven't done so already. I appreciate you feel your nearest hospital have let you down, but wondered what in particular made you ask about Liverpool with it being quite some distance from you. I personally wasn't treated there so am unable to make any comment, I think however that I would be happy to attend any hospital in the uk that specialize in neurosurgery. I am currently being monitored in Sheffield for an unruptured aneurysm, plus a wide neck on the one that ruptured which may or may not develop into another aneurysm, so I do appreciate to some extent how you feel.

I presume once you have decided on a hospital, then your gp would be able to refer you? I'm sure then you would hopefully start to feel a little more reassured about the situation.

Best wishes,

Sarah

Hi Sarah,

The only Hospital near me which performs neurosurgery is Cardiff so I searched online and discovered the Queens in London and the Walton in Liverpool.It does not look as though funding will be approved on the NHS for me to have surgery elsewhere, so I have no option but to pay unless I chose to go Cardiff.

I am hoping the price will be more manageable in Liverpool and not £40.000 like the Queens! Yes, I will feel better when I have a time and place set up for the surgery,although I am dreading having the brain surgery x

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Hi again Scarlett,

I was just wondering if there is anyone reading this thread who has been treated at Cardiff and could give you some feedback on their experience. It seems to be a rather stressful situation to be in - have you spoken to PALS and told them of your concerns. I've no idea how the NHS funding is arranged, but it's obviously not as simple as your trust handing over the funds to another one? It seems so unfair that you have the added stress of the possible financing of it:frown:

I do hope you get something sorted soon for peace of mind - and trust you are having your blood pressure checked as you wait. Try not to worry too much about the actual surgery - I spent so much time getting myself in a state over it, but I've got through two brain ops now and you will get through yours too.

I hope you have got supportive family and friends around you too - either way, there is always BTG to turn to!

Keep in touch,

Sarah

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Hi Scarlett

I'm glad you found this site. I'm in the US, so don't know about the hospital situations there.

Just wanted to say hello and let you know you're not alone. We're all here to help one another get through these scary times (and funny ones too, later on!)

I hope you get some answers soon and you're able to get the surgery done in a timely manner! I can only imagine how you must feel at this time. I was unaware I had an aneurysm until it burst - a little over 3 yrs ago now. Mine was coiled.

Take care sweetie and come in here often and keep us posted on what's happening for you.

Carolyn

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Guest Scarlett
Aw sorry hun your having a time of it, I never had the luxury of choosing, agree with what the others are saying, but you should really speak with the GP & be monitored by a neuro...

take care

Hi Louise,

Hearing off others here, who have been through surgery helps so much. I will get an appointment with my GP for a chat. When I had my blood pressure checked three weeks ago, it was 130/70 which is high for me as it's usually really low but they said that it was ok.

I don't take salt or smoke so I don't know how to get it any lower. x

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Guest Scarlett
scarlett contact your mp and ask him why they wont transfer you will send another pm take care

Hi Paul,

I have contacted my MP. MEP and assembly members and they have written letters of support to the NHS board but it's having to wait for the next meeting and having them decide. I thought they may have telephoned the NHS board but it's just the secretary's I have spoken with as they are not available. My local MP is overseas. His next surgery isn't until the 8th of March. I will attend his surgery and see how he can help me x

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Guest Scarlett
Hi Scarlett

I'm glad you found this site. I'm in the US, so don't know about the hospital situations there.

Just wanted to say hello and let you know you're not alone. We're all here to help one another get through these scary times (and funny ones too, later on!)

I hope you get some answers soon and you're able to get the surgery done in a timely manner! I can only imagine how you must feel at this time. I was unaware I had an aneurysm until it burst - a little over 3 yrs ago now. Mine was coiled.

Take care sweetie and come in here often and keep us posted on what's happening for you.

Carolyn

Hi Carolyn,

It is so reassuring to read your post and everyone's here and hear how you all survived and how well you all are doing. The next step for me is is the angiogram. I hope I will be well enough afterwards to take a taxi and then a ten minute walk to the station for a three hour train journey home.

I am going to ask tomorrow if I pay for my angiogram and I am not well afterwards can they admit me to the NHS side of the Hospital in London.

Do you feel any tightness in your head or are you aware that the coil is there? x

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