Misread my scans!

[Guest Scarlett]

Hi,I had a brain and cervical MRI last November, which I paid for because I had been waiting almost a year. I received a letter saying I had had an ischemic stroke to the left caudate in 2006.That shocked me as I had received a letter in 2006, saying my scan was normal, I didn't feel right. I had been having balance problems, attacks inside my head,numbness,tingling and odd headaches.

I went for a second opinion to London's Queen Square Hospital.I paid for another brain and cervical spine MRI and discovered I have a carotid aneurysm 8mm and a cyst on my pituitary gland.I am terrified and can't understand how four different Hospitals here in Wales, where I have had three MRI scans, one CT scan and one carotid artery scan could have missed this.

I have been told I need to have a brain angiogram to determine what surgery will be best either the coiling or clipping procedure.I do not trust the Hospitals here to perform this operation. I am having pain in the side of my neck a lot this past month and headaches.

Is there anyone from Wales who have had this surgery? thanks Scarlett x

[Lin-lin]

Hi

Just read this post after replying to you in the 'Christmas drink' thread. I understand now why you wanted to know where I had my surgery.

I am sorry that your treatment in Wales has left you lacking in confidence in local hospitals.

If you wish to have an explanation as to how some hospitals missed your aneurysm / cyst; there is likely to be procedures in place so that you can put the question to the hospitals themselves. You could even attend upon your own GP for some guidance. There are some members of BTG who have medical backgrounds and experience in working in hospitals. They will be able to give you more specific guidance as to how you do this.

My treatment was at Heath and I have no complaints. If I had to return to them, I would definately feel in safe hands; but that said, I am not minimising your trepidation and understand your concern.

Could you not ask the next Consultant you see why the scans didn't pick up what the problem was, but the London Hospital did?

L

[goldfish.girl]

Hi Scarlett,

I can imagine what a huge shock this has been for you after previously being told that all was ok. I have had 3 anneurysms coiled and my young son has had surgery for a cyst (his was sub arachnoid not on pituitary gland like yours). Although it is hard and very scary for you right now, the positives are that these problems have been found before any major damage has been done & will now be treated. Hopefully things will start to move faster now that a diagnosis has been made and you will soon have a clearer idea of what will happen & when.

Sorry I can't help on hospitals in your area, I'm in Scotland, but hopefully Lin-Lins experience of her hospital treatment will be reassuring for you.

Good luck,

Michelle

[Gill C]

Hi Scarlett its amazing how many of us have had info missed or symptoms ignored.

When I first when to hospital I didn't have scans of any kind as I only had head/eye pain & no signs of a bleed at all. 10 days later my vision in my right eye started to go & I was given a CT scan which cameNeuro back clear. 17 days after that with my right eye completely closed I had an MRI scan which was very painful to my already sore head.

Eight days after the MRI I got a phone call to say they thought they had found something (an anyurism sp?) which could only be seen on part of the MRI scan.

The following day I was admitted to Wessex Neuro & they confirmed with an angio that I had a 5mm anni on my right posterior communicating artery. The day after that I was operated on & my anni was clipped.

I can only say that as my anni hadn't ruptured my symptoms weren't typical apart from the sudden pain & thinking my eye was going to burst. As the CT showed nothing (my anni hadn't ruptured) there seemed to be no urgency on the part of the hospital even though I was back to my GP lots in the six weeks before i was diagnosed & my GP friend kept saying because my right eye was so dilated it looked like a bleed. This was in actul fact due to the pressure of the anni on my 3rd nerve not a bleed.

I can totally understand your fears about trusting the place that misdiagnosed you & I was lucky in that the neuro centre wasn't in the same hospital I'd first been admitted to. Howver on saying that I trusted the neuro centre completely & still do. If there was anywhere else you could go for treatment depending on how you feel its worth considering. I would def take the surgeons advice in all matters as they've seen it all before. I would def explore all options open to you, I know of a few treated at Wessex & some treated at the John Radcliffe in Oxford which aren't majorly far from you (well not in comparison to London anywyay)

I hope you get a resolution that keeps you happy & confident in your treatment xxx

[Daffodil]

Queen square team have been my life savers so I'm glad they have helped you reach a diagnosis. Sorry it wasn't the news you hoped for , but it's good you know your next steps and very understandable to have nervousness.

I had my second angio in september(dont remember 1st time) and its not too bad. There's a few threads on here about it if you search angiogram.

There will be excellent neuro facilities near you who can do this I'm sure but you need to have confidence in the team treating you. Spek to your GP and get a plan on where you want to be treated. It's important stuff so I'm sure they'll support you to go elsewhere if that's your wish.

Best wishes

[MaryB]

I am in the US. My SAH was missed the first time but it was read at I believe at the smaller hospital and later when I was not improving & transferred my neurosurgeon as he said STUDIED them and found it to be in a rare area of the brain. A stroke was picked up but they miss the SAH so I have no real idea other than the guy reading the results maybe just missed it. I find it inexcusable as well and make you lack trust but after I met my Neurosurgeon I was put right at ease.

Good Luck Mary

Ps I also read somewhere if scans are done too early they do not show a lot but that does not pertain to most of us!

[paul99]

hi scarlett

im sorry you have had such an experience hopefully things can be sorted now under the new regulations a patient can request treatment at a hospital of their choice, as you have now a certain result can you ask the surgeon at queens sq to take you under his wing under the nhs and resolve the problem,i know its far from home but you would be treated and resume your life , there are two ways to get answers from the hospital who treated you in wales, first through the pals system at the hospital or if you can find out who the clinical director at the hospital and write to him/her directly with a fourteen day deadline to make sure they dont sit on the complaint.

i must admit that queens sq is good as i did some of my training there and they certainly know their stuff one thing has crossed my mind is that queens sq may have done a different type of scan than a normal ct which is a quick scan and they may have covered more of an area than a normal scan as you do say that a section was of a mri nature .

i wish you well and hope you get some comfort that something has been found and the problem is resolved very soon take care

[Bluescat1]

My first test was an MRI that my doctor ordered to find the cause of vertigo that I was having and that is when my aneurysm was discovered. That radiologist suggested I get an MRA, I took it to the surgeon and he said I didn't have an aneurysm based on what they saw on the MRA. He recommended a Cat Scan with dye and that is when it showed up real well. Talk about an emotional roller coaster.

[Guest Scarlett]

Thanks for replying to my post. Here I am again in the early hours unable to sleep!I am so afraid this time bomb in my head will explode. I am so glad you had a good experience with the Heath Hospital.How long ago did you have your surgery and what was the consultants name?

Because I live in Wales,I have to ask the NHS board for permission to have my surgery in the Queens. I have paid to see the neurologist there and also the neurosurgeon but don't know if they will approve it or how long it will all take. So much stress!I feel so afraid because my aneurysm is quite large x

[Guest Scarlett]

Thanks Michelle for replying to my post.You have survived three aneurisms that's amazing and gives me hope!I'm so glad that your little boy is ok too. With me there is a family history of heart disease. My Father also had an aneurysm in his stomach and his sister died in her early twenties of a problem with her brain but it was back in the fifties so they didn't really know what the cause of her death was. They are still telling me there is no connection but I'm not so sure.

I do worry about having the brain angiogram and wonder if the CT angiogram is better. Which did you have?x

[Guest Scarlett]

Thanks for replying to me. I kind of feel all on my own, since my diagnosis at the Queens in London. The surgeon there said I needed to have an angiogram but that hasn't happened, because I don't want the surgery at any of my local Hospitals. It seems I have to wait a while to see if the NHS board agrees to me having surgery at London and I don't hold out much hope they will agree.

I worry my aneurysm will burst as it's 8mm and I'm terrified to go to sleep.My head feels strange when I lie down and I find it difficult to get to sleep.I am also experiencing dizziness when I turn over during the night.

I had loss of vision in both my eyes a few years back for over four hours and was terrified I had gone blind. I was told it was a migraine without a headache. I have had problems with blurred vision ever since,especially in my left eye.

Thanks for the names of those two Hospitals x

[Guest Scarlett]

Thanks for replying. I found them excellent at the Queens. I saw Dr Werring there who was lovely. I am hoping my NHS board will allow my Op there because I don't have health insurance and have no faith in my local Hospitals anymore.

I am concerned about the angiogram as there appears to be risk of a stroke, but it seems it has to be performed before they can decide which type of surgery is suitable.

I am so glad I discovered this site. It helps to know others have experienced and survived what I have to go through in the near future x

[Guest Scarlett]

Thanks for replying. It is so awful that they can misread scans but I'm glad you are now ok. The neurologist I saw in my local Hospital in January, thought I was imagining my head pains and balance problems because all my scans were normal! I am glad I went for a second opinion and had my diagnosis. I have read online that coffee and chocolate should be avoided if you have a brain aneurysm as it can cause blood pressure to rise temporarily and cause it to rupture. I don't have high blood pressure it's 130/70 but I have avoided both the past week and so miss the chocolate. I don't know if its true but I' m so scared right now and to afraid to risk anything x

[Guest Scarlett]

Thanks for replying. I am not aware of any new regulations. Will they apply to me living in Wales? I didn't think I had a choice where I could be treated, I thought it only applied to people in England. The Queens said it would be ok at first for me to be treated there, then when I paid to see the surgeon she said it would have to be approved by my NHS board. It was an Mri scan at the Queens, the same as I had here in Wales but maybe their scanner is more up to date and the people reading them more qualified.They were very efficient and I felt in safe hands there.

I will try to contact pals as you suggest.I am so worried with every pain in my head now that I am becoming a nervous wreck!x

[Guest Scarlett]

Thanks for replying. I get really bad dizziness too but they told me it's not linked to my aneurysm.I have had problems with my balance for years but it's been getting worse these past few months.Have you had surgery or are they just monitoring you?

Since discovering I have an aneurysm just three weeks ago this Tuesday, my life has been turned upside down and because I don't know where I can be treated it makes things worse x

[goldfish.girl]

Hi Scarlett,

I'm sorry I can't answer your question about did I have a brain angiogram or a CT angiogram. I don't know what the difference is between then? I have had 4 (possibly 5) angios done. I don't remember all of them but I do know some used a dye, some didn't. Sorry I can't help more. Perhaps the dye was with the last MRI scan I had, I'm really sorry I just don't remember it all very clearly.

Hope you hear news of your treatment plan & place very soon. It is very worrying to sit about waiting & worrying. I think they will probably move fairly quickly now they know what the problem is.

Michelle

Edited February 25, 2013 by goldfish.girl

[paul99]

hi scarlett

please try not to get too worked up pop in to see your gp and ask him to do a refferal to queens as far as i know the ability to ask for treatment at a hospital of your choice is countrywide , but if you speak to your gp i beleive he will help you he should have the results from the hospital even though you went private i think he may push for you take care and i know its hard but try not to get worked up please take care

[Guest Scarlett]

Thanks for replying. With the brain angiogram you get an injection and they go in through an artery in your groin like when having a heart angiogram. With a CT angiogram scan, that doesn't happen, you just get an injection and are scanned. I just thought the first one sounded more risky. x

[Super Mario]

I have had several heart and brain angiograms and have never had a problem although as with anything there are risks which the doctors have to make you aware of.

[Guest Scarlett]

Thanks for replying.My GP does not know what address to send the letter of support to( as there are several NHS board addresses )to enable me to have the surgery in London. I have rang the local health board ( 2 hours on phone) and they have not received my neurologists letter or AM's letter! They put me through to another dept who hadn't received it either. I can't get hold of my neurologist secretary to find out what address it was posted to so another wasted day x

[Guest Scarlett]

Thanks for replying.Thats good to know you have had both types and are ok. Nothing was mentioned about the risks to me during the procedure, but yes, all procedures carry some risk. I just Wondered if going in through my artery in my groin,there may have been more of a risk with my aneurysm bursting. I hope to be able to discuss all my worries with neurosurgeon soon, if the board agrees to my surgery in London x

[Guest Scarlett]

Hi Lin-lin,

I hope you don't mind but could you give me details of the surgeon who performed your operation at Cardiff please? Also, when did you have your surgery and how long was the recovery period? I am worried about having a CT angiogram as it was just a year ago I had a brain CT scan. Quite a lot of radiation!

I can't see the funding coming through for the Queens after the phone conversations I have had today. I am going to phone the Walton in Liverpool tomorrow to inquire if they will accept me there as a patient, as I am from South Wales they may not. I am so worried as I don't know how long it is safe to wait for surgery to avoid my aneurysm from bursting at 8mm.

Thanks

Scarlett

x

[Lin-lin]

Hi Lin-lin,

I hope you don't mind but could you give me details of the surgeon who performed your operation at Cardiff please? Also, when did you have your surgery and how long was the recovery period? I am worried about having a CT angiogram as it was just a year ago I had a brain CT scan. Quite a lot of radiation!

I can't see the funding coming through for the Queens after the phone conversations I have had today. I am going to phone the Walton in Liverpool tomorrow to inquire if they will accept me there as a patient, as I am from South Wales they may not. I am so worried as I don't know how long it is safe to wait for surgery to avoid my aneurysm from bursting at 8mm.

Thanks

Scarlett

x

Sorry for the delay – only picking this post up now.

My consultant was Mr Nannapeneni and he has a good reputation. My cousin is a doctor and he holds Mr Nannapaneni in high regard. I am told that he had a good reputation within the profession. My surgery was in November 2009.

An acquaintance of mine at Headway, (a charity run for people with brain injuries,) has also received care from this Consultant and again, I have heard only good things.

In terms of how long was my recovery period; those of us who have had a SAH will find that difficult to answer. I must clarify at the outset that our situations are different and so our recoveries will be too. (No two recoveries are identical anyway.) My aneurysm burst and so I received an emergency life-saving operation. I was coiled. The bleed caused damage and so my recovery must be considered on that basis. Had I been treated before the aneurysm burst, I think it is reasonable for me to think that I would have recovered better. My main ongoing issue is fatigue.

That said, I had a baby in August 2012!! Nannapeneni said that I could have a natural birth and the coil would withstand the pushing. (The coil fared better than me however! I was exhausted!)

I was in hospital for five weeks after the SAH because I suffered hydrocephalus. This was a complication of the SAH, NOT the surgery. Apparently some people who have a SAH, will develop hydrocephalus.

I’ve had quite a fair bit of radiation too, but it is a question of balance. Considering what I had been through with the SAH, radiation was not my main worry.

I don't know if you find any of this reassuring, but I hope it goes some way to allowing you to seive through your concerns.

[Bluescat1]

Thanks for replying. I get really bad dizziness too but they told me it's not linked to my aneurysm.I have had problems with my balance for years but it's been getting worse these past few months.Have you had surgery or are they just monitoring you?

Since discovering I have an aneurysm just three weeks ago this Tuesday, my life has been turned upside down and because I don't know where I can be treated it makes things worse x

was not connected to my aneurysm but was the results of calcium deposits moving around my inner ear. I went through the period that you are describing now until they recommended clipping to fix my problem. I now have 3 clips on my MCA, and I am watching my BP and cholesterol. The good news is the surgeon did another angiogram before he closed my head and said that he obtained the best possible outcome. Good luck with your aneurysm

[Guest Scarlett]

Sorry for the delay – only picking this post up now.

My consultant was Mr Nannapeneni and he has a good reputation. My cousin is a doctor and he holds Mr Nannapaneni in high regard. I am told that he had a good reputation within the profession. My surgery was in November 2009.

An acquaintance of mine at Headway, (a charity run for people with brain injuries,) has also received care from this Consultant and again, I have heard only good things.

In terms of how long was my recovery period; those of us who have had a SAH will find that difficult to answer. I must clarify at the outset that our situations are different and so our recoveries will be too. (No two recoveries are identical anyway.) My aneurysm burst and so I received an emergency life-saving operation. I was coiled. The bleed caused damage and so my recovery must be considered on that basis. Had I been treated before the aneurysm burst, I think it is reasonable for me to think that I would have recovered better. My main ongoing issue is fatigue.

That said, I had a baby in August 2012!! Nannapeneni said that I could have a natural birth and the coil would withstand the pushing. (The coil fared better than me however! I was exhausted!)

I was in hospital for five weeks after the SAH because I suffered hydrocephalus. This was a complication of the SAH, NOT the surgery. Apparently some people who have a SAH, will develop hydrocephalus.

I’ve had quite a fair bit of radiation too, but it is a question of balance. Considering what I had been through with the SAH, radiation was not my main worry.

I don't know if you find any of this reassuring, but I hope it goes some way to allowing you to seive through your concerns.

Hi Lin-lin

I feel a lot better after reading your post, thank you so much. I haven't been able to settle at all. I have missed both Corrie and Enders for a couple of weeks now! I just can't concentrate on anything, I have had this on my mind constantly. I haven't even been shopping which I love. Just been living in fear all the time. The night time being the worst. I am turning into a hypochondriac,every pain or twinge in my head sends a panic through my body. I have stopped my 3 daily coffees and eating chocolate as they both temporarily push up blood pressure and I was told I need to make sure this don't happen.

I am hoping to get my angiogram arranged tomorrow. Because I went private and the issue with the funding, this has been delayed. I rang the Walton Hospital in Liverpool and the lady I spoke with was really lovely but she asked if my aneurysm was benign,that made me worry a lot.

It's wonderful to hear you have since had a baby. I am amazed you were able to have a natural birth,I actually thought after having a coil or clip, you would have to change your life totally. No going to the gym or exercising or even going to work but if you are able to give birth,you can do anything. I fee so much better,thanks x

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