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Hi I'm Claire and after a bit of advice pls :)


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hi claire

i understand how you feel you can pay for a private consultation i think its between £25-50 pounds as a one off but then you could ask him to treat you under the nhs but i think you would have to pay for any scans done i will answer some of your worries in a pm take care xx

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Hi Claire,

I am not surprised you don't know which way to turn :crazy:

It is crazy that the Dr in A&E just shooed (spelling?) you away after they realised you were being dealt with by another consultant... it's madness.

I sincerely hope you get some help and answers soon.

I feel for you having to go back to work because your sick pay was ending - that is exactly what happened to me :( I think I went back too early but everyone kept telling me 'I looked okay'! Clearly you are not okay and need some further investigation done. If they thought it was an aneurysm initially and you are displaying neurological symptoms that would indicate something is wrong then it seems logical that there is something that needs to be sorted.

Good luck

Kel x

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Hi everyone

Hope your all ok.

Just thought I'd give you a bit of an update.

I've got an appointment next Friday to see a Private Neurologist who I'm hoping will get me sorted. He's based in a Private hospital back where my parents live and also does NHS work. He's going to pull my hospital file from when I was admitted in 2010 to go through before and during the appointment to see if he can make any sense of what happened which is good news.

Just found out that actually when I had the MRI in 2010 4 weeks after being discharged, they actually did an MRV (MR Venogram) which is how they picked up what they thought was the aneurysm. The reason they did the MRV as part of the MRI was because they were looking for Venous Sinus Thrombosis. Still can't quite believe they picked that up and then the hospital where I am now didn't do the correct CT scan!! I tried to get information about what was actually done as part of the CT in Oct 2010 and also as part of the MRI I had in April and they wouldn't tell me, they seemed to clam up... makes you wonder doesnt it. The Neuro I'm seeing on Friday is going to try and get access to all of my CT and MRI images aswell.

What cracks me up is that the Immunologist has replied to my letter and got everything **** backwards so that just tells me he's either trying to fob me off or he doesn't really want to look into things. It says that the radiologist where I am now reported on my MRI scan from when I was admitted in 2010 when she didn't it was the radiologist back where my parents are from, he also said in the letter that there has never ever been any mention of vascular issues... Funny that, did he actually read my MRI report from 2010 when they did the MRV because they were concerned about Sinus Thrombosis and they found an aneurysm!! Absolute joke!!

Fingers crossed I'll start getting somewhere now.

Thanks again for all of your support its been really appreciated!!

Just also wondered if any of you have got any tips on how to approach the appointment on Friday and any specific questions I should be asking?

I'm paying £210 for the pleasure therefore I want to make sure I get my money's worth lol!!

Thanks again

Claire xxxxxx

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Hi Everyone

Hope your all doing well.

I saw the private neurologist today and he was lovely... he has ordered an MRA (MR angiogram) as doesn't feel that the aneurysm that was suspected in 2010 has been properly ruled out with the correct scans. He's already looked through the MRI and MRV images from 2010 when they detected the aneurysm or calcification and is going to request the CT images and also the images from my recent MRI to compare all of the scans with the MRA. I'm having to pay for the MRA privately aswell however I feel better doing that knowing he has suggested it without me having to say anything. He wants to get the results of the MRA and compare all of the images first to rule the aneurysm in or out and then see me again and take it from there.

So now I've just got to wait for the MRA however I think it will be done within the next week or so.

Is the MRA the best scan to have?

Many Thanks

Claire xxxxx

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Thanks to both of u for ur best wishes!!

The private scan clinic rang me today and I'm going in for the MR Angiogram next Wednesday, the radiologist hasn't requested contrast which concerns me but it's being done on the stronger 3 tesla scanner... Should I be concerned that contrast dye isn't being used??

Just worried about something being missed again as they were supposed to use contrast in 2010 on the CT scan but didn't!!

Thanks as always

Claire xxxxx

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Hi Claire,

I've had all of my MRA's without contrast dye, so don't worry. I believe that with the newer scanners and with technology moving forward, that MRA imaging now doesn't require the use of contrast dye to show up the blood vessels and arteries, so I suppose that the use of dye depends on which hospital you go to and how old their scanners are ... wishing you all the very best. xx

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Hi everyone

Hope ur all doing ok.

Had the mra yesterday and got another appt with the neuro on Tuesday hoping the report will be back by then!! I've got a cd with all the images on which I had a sneaky peak at last night and there is a bright spot on the left side of my head which they have done two further images of in a separate folder one of those images just shows the vessel with the bright spot which I thought was odd so just got to wait for Tuesday I guess!!

Lots of love

Claire xxx

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  • 1 month later...

Hi everyone

Hope your all doing ok!!

Had the results of my mra a few weeks ago and they didn't find an aneurysm good news!! They have said that the blood vessels on the left side of my brain are alot more dominant as the right sided ones are slightly under developed therefore more blood than normal is pumping thru the left side which they think is causing the neuro probs and the pulsatile tinnitus!! They have put me on beta blockers!!

I was so happy when i got the results as u can imagine it was a huge load off my shoulders!! I did however receive my medical records today from when I was admitted in 2010 before they thought they found an aneurysm and one thing is concerning me... Obviously I'm no doctor but on the lumbar puncture results it said red blood cells 10 so assuming that means there were red blood cells present in my spinal fluid which as far as I knew would only be present in the case of blood leaking into the spinal fluid!!

I had pretty much put everything to bed and have been getting on with things until today when i received that thru the post!! Just wondered if any of u who had a lumbar puncture are aware of what their results showed and can offer any advice??

Thanks as always

Claire xxxxx

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Congrats Claire...bet you are relieved .....a big Phew !!...lol

Keep getting better and better xx

All the Best for You

Love

WinB143 xxx Well Done You..... now no Stress !! xx be happy and relax

Sorry cannot help about vessels ..or Lumber...I was totally unaware I was ill...lol xxx

Edited by Winb143
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  • 4 months later...

Hi all

Hope your all doing ok.

Hope you don't mind me posting, just got a question and not sure if any of you can point me in the right direction.

I've had another opinion on my MRA scan and they also compared it to the original MRV scan from 2010, they have said that on both scans there is a subtle 0.2cm fusiform dilation of a distal branch of the left aica!! I know fusiform can be a type of aneurysm and I'm going to take the report to my gp tomorrow but has anyone got any ideas of what this could mean??

Cheers

Claire

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Hi all

Just thought I'd update on my post from yesterday, I saw my gp this evening who read the report and says it means I have a fusiform aneurysm in my left aica!! She's told me to ring my neuro in the morning and find out when my appt is... When I saw him in September he said he would see me in 3 mths!!

Don't really know how I feel to be honest, first of all lucky it's finally been picked up, then anger that it shouldn't have had to get to this as they should have sorted this two years ago, then upset, then absolute terror!!

Any advice would be much appreciated.xxxxx

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Hi Claire,

I don't know what a fusiform aneurysm is???? I haven't heard that term before. Hopefully you will get an appointment very soon & get some answers from them.

Try not to panic as it sounds like it is very small? Obviously, I am not an expert but do know there are others on here with small aneurysms which are regularly monitored rather than needing urgent intervention. Hopefully you will get the answers you need and things may not be as scary as you imagine - but I know it must be hard not to panic until you do get the full facts.

Good luck,

Michelle

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Hi Claire,

I can understand your emotions being all over the place when you learnt about the aneursym and I hope your appointment is soon so that you can get some reassurance regarding this.

I think (and it is only a think) - that fusiform refers to the shape of the aneursym:confused:

I know how the discovery of aneursyms can make you terrified, but after your appointment, you will hopefully become more knowledgeable and settled with the situation.

After I had my rupture, they discovered I had another aneursym and this has been monitored each year since it was discovered in November 2008. It is a fraction bigger than your own (3mm) and as it has not changed at all in those 4 years, I was told in October this year that they don't need to scan me again until 2015. I am therefore assuming that they expect it to have remained stable for a total of 7 years at least. Whilst all our cases are different, it does not necessarily have to mean that aneursyms equal imminent danger - or at least that's what I tell myself!

I wish you well at your appointment,

Sarah

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Hi Michelle and Sarah

Thanks for your messages you have out my mind at ease a bit!! I think I'm more angry at the moment than anything that they misdiagnosed it two years ago!!

I've called the neuros secretary this morning on the advice of my gp to be told that there is a bit of a backlog on review appts at the moment.... OF A FEW MONTHS!!! I explained everything to her and she is going to speak to him on Friday to ask if he wants to see me sooner!! Oh they frustrate me!!

Just got to wait I guess just winds me up that the only reason I've got to this point is down to me being resourceful and pushing because I knew something wasn't right!!

Your right as far as I can see a fusiform aneurysm is just a different shape one it's a dilation of the whole width of the vessel like a spindle so there's not a neck as opposed to a berry/saccular type!! Haven't a clue what that means in terms of treatment etc or what they will do with it but as you said it appears to be small at 2mm!!

Aaaaaaarrghhhhhhh.... Sorry just needed to get that out!!xxxxx

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  • 2 weeks later...

Hi Claire,

I'm glad everything is finally - if extremely slowly - being sorted out. You've been through a horrible ordeal and it does make you wonder why it sometimes takes so long to sort out/diagnose SAH. With mine, although i was diagnosed with the bleed straight away, it took a few scans over the week to find the aneurysm - and some of the Drs questioned why i was having further scans. Thank God i had a Consultant who erred on the side of caution and wanted to see what was there after some of the blood had drained off cos there was so much blood initially they couldn't see. Operated as soon as they got the results thankfully, and what a difference it made.

I'm 2 years on (today actually!!) and i still get the stabbing pains, occasional headaches, dizziness and some tingling. But, for me, some of the symptoms are caused by B12 deficiency - causes headaches, dizziness, tingling, irritability. The list goes on.... Always worth asking for a test, as its not a usual blood test. Made me feel so much better after i had the B12 injections, but can tell when i need a top up. Since I've only been diagnosed recently, am wondering if it was something to do with my SAH???

Hope you get some proper answers and solutions soon,

Take care

Juliette xxx

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