Misread my scans!

[Daffodil]

Hi Scarlett,

I know the waiting and worrying is agonising , nothing we say can take the worry away for you but the fact they are listening and acting now is a good thing. Try to take each day as it comes. This phase will soon pass.

I have had most of my treatment as NHS but my employee health cover meant my post coiling angio was done privately but i dont think it raised my standard of care and I still couldn't choose exactly when I wanted it done, they have a long waitin list in london for their private care. Mine got cancelled twice as you have to accept that you can still get bumped if there is an emergency.

When i had my cerebral angiogram it was done with my consultant neurosurgeon on site but the procedure was performed by their consultant neurological radiographer. It was in the room where they also performed my emergency coiling and there's a significant number of people in the room with you. Basically the person who does the procedure has incredible levels of experience , my chap explained that you have to do 100s of coilings before they let you do the angiogram as the angio is more complex. As bluecat says it is absolutely the gold standard for investigation. Really amazing.

I think any neuro team in the country will do their utmost to look after you. Go where you will feel most comfortable

[Bluescat1]

Hi Harry,

The angiogram I'm having is the one where they feed the catheter up into the artery in the groin. I don't know what an MRA is? Is that what you had? Was a neurosurgeon present when you had yours? x

I had the one through the artery and it was performed by the neurosurgeon. I was given propofol to sedate me and I didn't feel a thing. MRA is Magnetic resonance angiography which is a fancy MRI that totaly missed my aneurysm. It didn't show up on that test but did on the MRI, Cat scan with dye and the angiogram.

Edited March 4, 2013 by Bluescat1
spelling

[Guest Scarlett]

Hi Scarlett,

I know the waiting and worrying is agonising , nothing we say can take the worry away for you but the fact they are listening and acting now is a good thing. Try to take each day as it comes. This phase will soon pass.

I have had most of my treatment as NHS but my employee health cover meant my post coiling angio was done privately but i dont think it raised my standard of care and I still couldn't choose exactly when I wanted it done, they have a long waitin list in london for their private care. Mine got cancelled twice as you have to accept that you can still get bumped if there is an emergency.

When i had my cerebral angiogram it was done with my consultant neurosurgeon on site but the procedure was performed by their consultant neurological radiographer. It was in the room where they also performed my emergency coiling and there's a significant number of people in the room with you. Basically the person who does the procedure has incredible levels of experience , my chap explained that you have to do 100s of coilings before they let you do the angiogram as the angio is more complex. As bluecat says it is absolutely the gold standard for investigation. Really amazing.

I think any neuro team in the country will do their utmost to look after you. Go where you will feel most comfortable

Thanks for posting Daffodil,

I just feel having no family and no support off my husband it's really difficult to make any decision. I want the best outcome because I have to care for my disabled son. Around here, because they have misread my scans in different Hospitals I worry. Although Lin-lin had her surgery in Cardiff and speaks highly of her experience there and is well now.

I also don't know which is best, the CT angiogram or the angiogram where they go into your groin.

I am seeing my GP on Friday,but it seems like an eternity. I worry about my son so much x

[Guest Scarlett]

I had the one through the artery and it was performed by the neurosurgeon. I was given propofol to sedate me and I didn't feel a thing. MRA is Magnetic resonance angiography which is a fancy MRI that totaly missed my aneurysm. It didn't show up on that test but did on the MRI, Cat scan with dye and the angiogram.

Thanks Harry. Here where I live they do the CT angiograms and yet in the Queens, they do the angiogram going into the groin. As the London Hospital has all the best equipment I think that should mean it's the best way if they don't use a CT scan.

I am just so confused right now. I suppose it won't be any quicker wherever I go. Time seems to be crawling by at a snails pace.x

[Guest Scarlett]

Ha! True. They don't call it labour for nothing!!

Hi Again Lin -lin,

Could I also ask you if you were taken directly to Cardiff Heath Hospital? I see on one post you were living in Skewen. Is that where you lived when you got taken into Hospital? I only ask because when I was taken ill a year back,I got rushed to Morriston Hospital and they were terrible! Thanks x

[Bluescat1]

Thanks Harry. Here where I live they do the CT angiograms and yet in the Queens, they do the angiogram going into the groin. As the London Hospital has all the best equipment I think that should mean it's the best way if they don't use a CT scan.

I am just so confused right now. I suppose it won't be any quicker wherever I go. Time seems to be crawling by at a snails pace.x

Scarlett,

You are getting the best test, this will help the surgeon determine the best course of treatment. Just to let you know I have 3 clips on my annie and I workout and run on the treadmill with no problem. However this will be up to your surgeon to determine what is best for your particular situation. I will say a prayer for you, you will get through this.

Harry

[Daffodil]

Scarlett, both angiograms scan you, it's just the method is different.

With the cerebral angio they tube you through the femoral artery and squirt the dye into the specific sections of the brain they want and are moving the scanners around your head as they do it. Its a bit like a rotating flower. You have to take a deep breath and keep very still when they release each burst of dye but the theatre is much more open. You're not in an enclosed space.

There's some very good threads on here that describe it if you search under angiogram. They helped me before I had mine. It's natural to be nervous.

I don't know about the other type, I suspect they inject the dye locally and wait for it to show up in the scan. A Friend has had this and they use the traditional scanning equipment where you are partly enclosed in a the scanner tunnel.

I hope you come to a decision quickly and your GP is sympathetic.

[Louise]

The neuro surgeon doesnt do those kind of things its normal someone else. Daff explaines it very well.

The MRA is with dye the MRI isnt as far as I've worked out think I have that written down in a booklet someplace.

[Gill C]

Scarlett I have had all 3 types scans, the CT scan showed nothing (done without the dye), the MRI only showed an anni on part of the scan & not on the other. I was told if you didn't have a bleed an anni would more than likely not show up on a CT scan but if you had had a bleed the blood would be seen on the scan. As your anni is larger than mine the same might not be true for you tho

Wessex Neuro did the angio with dye as soon as I got there. I am a big wuss & hated the MRI scans but I can honestly say the angio wasn't painful. Like the others say there are some flashing lights when they inject the dye & they should tell you which side of the brain they are looking at. I was more worried about how cold my feet were as the air con in there was cranked up to the max!!

The only point for me about the angio was that they had to press the entry site for a long time & in the end had to draw round the bruise to make sure i wasn't still bleeding out. When I was in Wessex I was the only person i spoke to that had had that so try not to worry too much.

My understanding is that the angio is more detailed because the dye is being injected into the blood vessels in the brain & the pics that they take give a 3d view of where your anni is & the size & shape of it. I was only ever scanned in the CT scanner after my op which was to check on any damage caused by vasospasms.

I also walked around with my anni for 6 weeks working & driving as usual(for the first week) until my vision became too blurred for me to get about safely.

If you need to know anything more you can always PM me any time xxx

[Bluescat1]

The neuro surgeon doesnt do those kind of things its normal someone else. Daff explaines it very well.

The MRA is with dye the MRI isnt as far as I've worked out think I have that written down in a booklet someplace.

My neurosurgeon did my angiogram under anesthesia, he threaded a catheter through my femoral artery up through my heart and into my brain. I have his bill for $7,000.00 to prove it. He also performed a second one during my surgery while he still had my head open to see if the clips were doing their job properly before he closed me up.

Edited March 5, 2013 by Bluescat1

[Guest Scarlett]

Scarlett,

You are getting the best test, this will help the surgeon determine the best course of treatment. Just to let you know I have 3 clips on my annie and I workout and run on the treadmill with no problem. However this will be up to your surgeon to determine what is best for your particular situation. I will say a prayer for you, you will get through this.

Harry

Thank you Harry. I had bad news today when I rang the Queens Hospital. They decided that because I did not have health insurance I couldn't have my angiogram there, because something could go wrong during the procedure and they said I may need surgery immediately or they may have to put a shunt in! They told me to wait until I get my NHS referral.

The NHS board meets this Thursday to decide if I can get the funding for my surgery at this Hospital because it's out of my area, but when I rang the NHS board today, they said they were waiting for something to be mailed to them but couldn't tell me what! Then said if it's not received there will be another meeting next week.

I have no idea whats happening and that is very unsettling x

[Guest Scarlett]

Scarlett, both angiograms scan you, it's just the method is different.

With the cerebral angio they tube you through the femoral artery and squirt the dye into the specific sections of the brain they want and are moving the scanners around your head as they do it. Its a bit like a rotating flower. You have to take a deep breath and keep very still when they release each burst of dye but the theatre is much more open. You're not in an enclosed space.

There's some very good threads on here that describe it if you search under angiogram. They helped me before I had mine. It's natural to be nervous.

I don't know about the other type, I suspect they inject the dye locally and wait for it to show up in the scan. A Friend has had this and they use the traditional scanning equipment where you are partly enclosed in a the scanner tunnel.

I hope you come to a decision quickly and your GP is sympathetic.

Thanks for explaining. I had more disappointment today and just feel I'm getting nowhere despite trying ever so hard.

I am seeing my GP on Friday but really don't know what to do now. I am hoping that the NHS board meeting will go ahead. I just want this to be all over with yet I have no angiogram or date for surgery and this worries me x

[Guest Scarlett]

The neuro surgeon doesnt do those kind of things its normal someone else. Daff explaines it very well.

The MRA is with dye the MRI isnt as far as I've worked out think I have that written down in a booklet someplace.

Thanks Louise,I seem to be getting nowhere. I don't know why the Hospital didn't tell me before now that I couldn't have my angiogram there. The consultants secretary even rang me last Thursday evening saying she would contact me with a date! x

[Guest Scarlett]

Scarlett I have had all 3 types scans, the CT scan showed nothing (done without the dye), the MRI only showed an anni on part of the scan & not on the other. I was told if you didn't have a bleed an anni would more than likely not show up on a CT scan but if you had had a bleed the blood would be seen on the scan. As your anni is larger than mine the same might not be true for you tho

Wessex Neuro did the angio with dye as soon as I got there. I am a big wuss & hated the MRI scans but I can honestly say the angio wasn't painful. Like the others say there are some flashing lights when they inject the dye & they should tell you which side of the brain they are looking at. I was more worried about how cold my feet were as the air con in there was cranked up to the max!!

The only point for me about the angio was that they had to press the entry site for a long time & in the end had to draw round the bruise to make sure i wasn't still bleeding out. When I was in Wessex I was the only person i spoke to that had had that so try not to worry too much.

My understanding is that the angio is more detailed because the dye is being injected into the blood vessels in the brain & the pics that they take give a 3d view of where your anni is & the size & shape of it. I was only ever scanned in the CT scanner after my op which was to check on any damage caused by vasospasms.

I also walked around with my anni for 6 weeks working & driving as usual(for the first week) until my vision became too blurred for me to get about safely.

If you need to know anything more you can always PM me any time xxx

Thank you Gill, Tonight I don't know what to think or do to be honest. The Queens don't want to know unless I get an NHS referral because I have no health insurance, but they knew that all along as I said I was self funding each call I made to them,to try to book the angiogram.

I have cried a lot today because it seems I have paid out quite a lot of money for the correct diagnosis £1020 for MRI + £550 for two consultations there. Two trips up to London during rush hour cost me a lot from Wales and now I am left hanging in mid air so to speak. Waiting for the NHS board either this week or next week to decide if they will fund my Op there. Which makes me so angry as if the Hospitals here had done their jobs correctly, I wouldn't be in this position, it would have been picked up much sooner x

[Bluescat1]

Thank you Harry. I had bad news today when I rang the Queens Hospital. They decided that because I did not have health insurance I couldn't have my angiogram there, because something could go wrong during the procedure and they said I may need surgery immediately or they may have to put a shunt in! They told me to wait until I get my NHS referral.

The NHS board meets this Thursday to decide if I can get the funding for my surgery at this Hospital because it's out of my area, but when I rang the NHS board today, they said they were waiting for something to be mailed to them but couldn't tell me what! Then said if it's not received there will be another meeting next week.

I have no idea whats happening and that is very unsettling x

I had no idea you have private insurance, I though all of GB had NHS.I have insurance from my job, I retired from Verizon but my surgeon was not in the network so he was paid at 80% of the network negotiated fee. The hospital is in network so they were covered. I called the Doctors office in advance and told them the story. They said they would get back to me and they did 1 week later and said they would take my insurance. When all was said and done they sent me a bill for $17,000.00 and I sent them a letter saying they would accept my insurance. We wound up settling for $1200.00 the out of network deductible. My primary doctor recommended this neurosurgeon as he is one of the best in the USA. The Hospital was brand new and I was the first annie operated on.

Well it sounds like you have your share of red tape over there. Things will work out for you, just keep telling yourself the alternative is unacceptable. I know I am speaking for all on the board and we are all here to support you ,take care

Harry

[Guest Scarlett]

I had no idea you have private insurance, I though all of GB had NHS.I have insurance from my job, I retired from Verizon but my surgeon was not in the network so he was paid at 80% of the network negotiated fee. The hospital is in network so they were covered. I called the Doctors office in advance and told them the story. They said they would get back to me and they did 1 week later and said they would take my insurance. When all was said and done they sent me a bill for $17,000.00 and I sent them a letter saying they would accept my insurance. We wound up settling for $1200.00 the out of network deductible. My primary doctor recommended this neurosurgeon as he is one of the best in the USA. The Hospital was brand new and I was the first annie operated on.

Well it sounds like you have your share of red tape over there. Things will work out for you, just keep telling yourself the alternative is unacceptable. I know I am speaking for all on the board and we are all here to support you ,take care

Harry

Hi Harry,

Thank you for your support.

Yes, we all have NHS cover here, but where I live in the South, I am not allowed to choose my Hospital where I am treated. Because they misread my scans I have lost confidence in their care. If I lived in the North or anywhere England, I could choose which Hospital I would like my treatment at!

Tomorrow, the board has a meeting and if they choose to hear my case, they will decide if I can have funding for my treatment at London. I will know their decision by late afternoon. If not I have to wait another week until their next meeting!! Red tape, yes there's lot's and it's a nightmare

Despite my fears I just wish I was having the angiogram and surgery tomorrow.Every pain in my neck or head now sends me into a panic. I sent a text to my husband last night. He was working nights and I didn't feel well and was worried. Today he told me never to send him a text again but to go and tell my son if I felt ill.

I am seeing my Doctor Friday morning and will explain I have no support at home ,maybe when I have my surgery they could keep me in Hospital a little longer x

[Guest Scarlett]

Hi Harry,

Thank you for your support.

Yes, we all have NHS cover here, but where I live in the South, I am not allowed to choose my Hospital where I am treated. Because they misread my scans I have lost confidence in their care. If I lived in the North or anywhere England, I could choose which Hospital I would like my treatment at!

Tomorrow, the board has a meeting and if they choose to hear my case, they will decide if I can have funding for my treatment at London. I will know their decision by late afternoon. If not I have to wait another week until their next meeting!! Red tape, yes there's lot's and it's a nightmare

Despite my fears I just wish I was having the angiogram and surgery tomorrow.Every pain in my neck or head now sends me into a panic. I sent a text to my husband last night. He was working nights and I didn't feel well and was worried. Today he told me never to send him a text again but to go and tell my son if I felt ill.

I am seeing my Doctor Friday morning and will explain I have no support at home ,maybe when I have my surgery they could keep me in Hospital a little longer x

Just wondered it ok for me to walk my dog a few miles or should I just rest up until the surgery?

[Bluescat1]

Just wondered it ok for me to walk my dog a few miles or should I just rest up until the surgery?

I am not a doctor, but since they are not handling your case as urgent I don't see why not. I ran on my treadmill up until the day of my surgery. Exercise helps lower BP so in my case it was probably good. Pets are a very good stress reliever so that should help. The more you get back to your normal routine the better your mental outlook will be. Do you get to choose your surgeon or is it the next available? Here is hoping you get your approval tomorrow,fingers crossed

Harry

[goldfish.girl]

Hi Scarlett,

I'm starting to wonder if holding out for NHS funding at a hospital of your choice is prolonging your access to treatment, with all the funding meetings, red tape etc, etc?

I do understand your fears as I was transferred from my local A&E hospital after a CT scan showed the bleed to a Neuro hospital in Aberdeen. I had an angiogram there, was diagnosed with 2 annies, one bleeding & transferred again to a neuro unit in Edinburgh, where they discovered a 3rd annie when they carried out their own angiogram. This was operated on 3 months after my emergency coiling to treat the two that had been identified during the SAH & I do feel that if I had not been transferred to Edinburgh, the 3rd annie would be a silent time bomb in my head. However, if I was told tomorrow that I had another large annie & that hospital knew it was there from my scans, I'd be straight in there having it treated........

Locally, many surgeons are employed by the NHS but also do private operations in the same NHS hospital (for a hefty fee to top up their already considerable incomes and people that can't afford to pay wait even longer on NHS waiting lists, having no idea the specialist surgeon only works part-time as an NHS employee:shocked:) so, while I understand your lack of faith in your local hospital, they now have CONCRETE EVIDENCE of your condition and, let's face it - NO SURGEON wants to lose a patient or botch an operation - they have success scales too!!!!

Maybe instead of waiting for the best, you might consider the one who can see you quickest (possibly considered the best in 'private paying land' but also working for the NHS on certain days, in certain hospitals!)

I really don't wish to sound rude but if you are scared to even walk your dog you really should perhaps consider bog standard NHS hospitals if that would cut the bureacracy and get you treated quicker? I think someone already mentioned that even as a private patient, you can still be 'bumped' on the day if there is an emergency?

Michelle

[kempse]

I hope you get a favourable decision on the funding today Scarlett - good luck!

Sarah

[Louise]

Yeh! just go with it.

[Lin-lin]

Hi Scarlett

I’m sorry to learn that you are still stressed, particularly as your support at home is thin. This must be compounding problems. My heart goes out to you.

I think Michelle, (Goldfish Girl,) and Louise make a good point. I had thought myself that the issues with funding might be adding to what is already a very stressful situation for you. This is not to say that I am not compassionate about your situation, as are Michelle and Louise. I really feel for you that you are facing a big operation but have no faith in local doctors.

For my part, if an aneurysm was discovered in my brain; I would be going to Heath without hesitation. The care I received there was exemplary.

You will see from many of us here, that an initial misdiagnosis is common. It is not something that is unique to Heath.

Often, when confronted with problems, we need to decide what needs to be worried about first and foremost. I think treating the aneurysm as quickly as possible is the important thing. Also, if you are far away from home, will family / friends be able to visit you? What about the journey there and back?

My SAH happened two weeks after a weekend in London and I remember shuddering at the thought that it could have happened there; only because it would have been so much more difficult for people to support me and visit. Being nearer to home was important for my recuperation. (Although travelling from Llanelli to Cardiff every day was a big task for my parents – it was still do-able.)

When we are stressed, it can be difficult to hear views different to our own train of thought. I apologise if I am upsetting you here. It is not my intention.

I am simply brain-storming with you (excuse the pun!) If you think that my advice is not what you want to do, you will hear no more about it and I will throw my weight behind your decision and support you 100% But if we were friends in the real world, I would say the above over a cuppa, just for you to have an opportunity to think about an alternative. When we are stressed we can become fixated on a certain ‘solution’ but when we talk it through with others; we can sometimes find a different way.

I am not telling you what to do here. Just raising a different approach.

[Guest Scarlett]

Hi Scarlett,

I'm starting to wonder if holding out for NHS funding at a hospital of your choice is prolonging your access to treatment, with all the funding meetings, red tape etc, etc?

I do understand your fears as I was transferred from my local A&E hospital after a CT scan showed the bleed to a Neuro hospital in Aberdeen. I had an angiogram there, was diagnosed with 2 annies, one bleeding & transferred again to a neuro unit in Edinburgh, where they discovered a 3rd annie when they carried out their own angiogram. This was operated on 3 months after my emergency coiling to treat the two that had been identified during the SAH & I do feel that if I had not been transferred to Edinburgh, the 3rd annie would be a silent time bomb in my head. However, if I was told tomorrow that I had another large annie & that hospital knew it was there from my scans, I'd be straight in there having it treated........

Locally, many surgeons are employed by the NHS but also do private operations in the same NHS hospital (for a hefty fee to top up their already considerable incomes and people that can't afford to pay wait even longer on NHS waiting lists, having no idea the specialist surgeon only works part-time as an NHS employee:shocked:) so, while I understand your lack of faith in your local hospital, they now have CONCRETE EVIDENCE of your condition and, let's face it - NO SURGEON wants to lose a patient or botch an operation - they have success scales too!!!!

Maybe instead of waiting for the best, you might consider the one who can see you quickest (possibly considered the best in 'private paying land' but also working for the NHS on certain days, in certain hospitals!)

I really don't wish to sound rude but if you are scared to even walk your dog you really should perhaps consider bog standard NHS hospitals if that would cut the bureacracy and get you treated quicker? I think someone already mentioned that even as a private patient, you can still be 'bumped' on the day if there is an emergency?

Michelle

Hi Michelle,

You know I have been thinking that myself, maybe I am risking my life by waiting. Today I will have the NHS board decision so will pop back later and thanks x

[Guest Scarlett]

Yeh! just go with it.

Hi Louise,I have been thinking that too and I don't feel good. I'm seeing Doctor in the morning x

[Guest Scarlett]

Hi Scarlett

I’m sorry to learn that you are still stressed, particularly as your support at home is thin. This must be compounding problems. My heart goes out to you.

I think Michelle, (Goldfish Girl,) and Louise make a good point. I had thought myself that the issues with funding might be adding to what is already a very stressful situation for you. This is not to say that I am not compassionate about your situation, as are Michelle and Louise. I really feel for you that you are facing a big operation but have no faith in local doctors.

For my part, if an aneurysm was discovered in my brain; I would be going to Heath without hesitation. The care I received there was exemplary.

You will see from many of us here, that an initial misdiagnosis is common. It is not something that is unique to Heath.

Often, when confronted with problems, we need to decide what needs to be worried about first and foremost. I think treating the aneurysm as quickly as possible is the important thing. Also, if you are far away from home, will family / friends be able to visit you? What about the journey there and back?

My SAH happened two weeks after a weekend in London and I remember shuddering at the thought that it could have happened there; only because it would have been so much more difficult for people to support me and visit. Being nearer to home was important for my recuperation. (Although travelling from Llanelli to Cardiff every day was a big task for my parents – it was still do-able.)

When we are stressed, it can be difficult to hear views different to our own train of thought. I apologise if I am upsetting you here. It is not my intention.

I am simply brain-storming with you (excuse the pun!) If you think that my advice is not what you want to do, you will hear no more about it and I will throw my weight behind your decision and support you 100% But if we were friends in the real world, I would say the above over a cuppa, just for you to have an opportunity to think about an alternative. When we are stressed we can become fixated on a certain ‘solution’ but when we talk it through with others; we can sometimes find a different way.

I am not telling you what to do here. Just raising a different approach.

Hi Lin-lin,

I have been wondering about this myself,if I am doing the right thing by waiting. It's just apart from misreading my scans, I read in the paper about the MP's husband who died at the Heath. His wife said he died like a battery hen! She said he did not have an oxygen mask to fit him and died of pneumonia that he caught at the Hospital. She said the nurses did not care for him. This caused me further worry.

I know with no support from my husband and taking care of my disabled son I can't carry on like this for much longer.

Thanks x