I got a second opinion, not what i wanted to hear

[Surfer34]

So my original diagnosis in Sept was a Perimesencephalic Subarachnoid Hemorrhage. I had one CT scan with no contrast, one with contrast and a cebreal angiogram and then 3 weeks later another CT scan with contrast.

My neurosurgeon said everything was fine and I was good to go.

However, I sought a second opinion from Cedar Senai Hospital and the neurosurgon there said he wanted me to go for a second cerebral angiogram because he said my pattern was not a typical perimesencephalic pattern of blood distrbution.

I am very upset and now kinda scared.

Edited December 22, 2010 by Surfer34

[KelBel]

Hi Surfer

Sorry to hear that news. I can understand you are scared.

Do you know when you are due to go back for your next angio? It's certainly not the news you want this close to xmas but it is good that you sought a 2nd opinion and that they will be re-checking everything.

I do hope you don't have to wait too long to get your next appointment and that it all turns out good for you.

Kel x

[Lin-lin]

I am very sorry to hear that you are scared and upset. I hate the idea that you are feeling anxious.

The medical language used to describe to your condition is above my understanding and only a doctor (and a neuro doctor at that,) can properly explain things to you.

So that I am able to understand the situation fully, I am assuming that you do not live in the UK? I say this, because I am aware that Cedar Senai are a private company and I am not aware that they have hospitals in the UK.

The nature of a private company, unlike the National Health Service (NHS) here, is that they are essentially businesses. Their motive is to make money.

When I had my SAH, my family were anxious as to their own health and enquired as to whether they should have scans. They were told that the NHS could not fund the scans unless there were definite external symptoms that were necessary to investigate. There had to be more of a reason simply than their worry that something 'might be wrong.'

The doctor explained that if they wanted to pay for scans in the private sector, then the hospitals would certainly take the business, but the consideration my family needed to take on board is this. The brain can sometimes show patterns that are not necessarily life threatening; but of course, if we know they are there, we worry and might seek investigative work that may not be strictly necessary. Following from this my family did not pursue matters.

It is curious that two nerosurgeons have said different things. I wonder whether the second 'problem', showing abnormal blood distribution, is because you are recovering from a SAH. That is, your brain is still settling from the trauma of a SAH, so you may have an irregular pattern, but it may be a 'normal abnormality' for someone who has had a SAH. A few of us here have had scans showing 'normal abnormalities.' That means, patterns which are not normal for people generally, but 'normal' for a SAH patient.

Do Cedar Senai have your full medical records? It may be the case that your first neurosurgeon is aware of the problem the second doctor speaks of, but because the first doctor knows your full medical history, s/he may think it is not a problem that needs further work.

If I were in your shoes, I would revert back to the first doctor and explain the new findings and ask for an explanation. There may be a plausible explanation as to the different medical opinion and the first doctor may consider more investigations unnecessary.

You have to bear in mind, that if a hospital is working as a business, it is making money from appointments and scans. I am not saying in any way that they are acting unlawfully; but they can legitimately suggest that numerous things be investigated. (And invoice you!)

I used to work in a corporate environment as a lawyer. (Never again, I have seen the light!) But my bosses told me that if 'a client came in with one problem. Make sure they leave with five.' It's horrible, but it does go on.

I would ask you to bear this in mind and if I were you, I would revert back to your original doctor who has all your medical records and the advantage of having cared for you from the outset.

Take care hun,

Lynne xx

Edited December 23, 2010 by Lin-lin

[Surfer34]

Yeah I am going back to my original neurosurgon to get his opinion on the second opinion.

I really dont want to get a second cebreal angiogram but also now I am worried what the second test may show.

Its also surprising that the different doctors have different opinions and they are both supposed to be very good specialists.

I cant figure out how two doctors could disagree on something that appears to be pretty straight forward and easy to distinguish.

BTW - Lin, I live in California.

Edited December 23, 2010 by Surfer34

[tracy]

hi surfer

i had mySAH 29th june had ct, ct with dye and angiogram all were told to me to be clear, a normal scan. Then in aug had an MRI and MRI with dye which again they told me was clear. So go carry on with life dnt need to see me again. But in Oct was having hadaches again so went back in hospital for 3 days. CT scan and Lumbar Puncture done all clear again. Then Nov had MRI which now shows abnormalities in which numurous white spots have appeared at front lobes and a big white mass at back of brain. Apparently this could not have been on any of my scans in july,aug,and oct otherwise they would have seen it. So i have managed to get all these white areas within space of 2 months. Being told they dont know what they are only that it could be MS. How very bizarre, to have SAH is one thing but to suddenly find i might have MS is just damn bad luck.

must note that all my original scans were done at Oxford, whereas my last MRI was done at home here in Northampton. So hopefully northampton got something wrong.

Just try to keep positive thats what im doing.

Tracy S XXX

[Tina]

Hi Surfer...not surprised you are scared and upset. On the positive side it will not hurt to be checked out again, and i am sure all will be ok. Keep positive as Tracy says and try to relax. Easy to say i know. I agree with Lynne...i would go back to my original Consultant and ask them what they think. Wishing you all the best. Take care Tina xx

[Ann]

Hi there

Do you have a CD with the original images on them from your first CT scan? If so I suggest that you get a neuro radiologist to review it and give their opinion. The distribution of blood in perimesencephalic SAH is quite distinctive and if you had a CT done soon after it should show that pattern and will therefore give you a diagnosis. Having a CT now will not tell you what the distribution was soon after your SAH but obviously could show an aneurysm that was originally missed although I was told this is highly unlikely. Good luck in your follow up, do not be too worried until you have some facts.

[Surfer34]

Yes I have all of my images on CD and the written reports.

My diagnosis in the hospital was made by the neurosurgon there. Based on the blood distribution pattern and the absence of any source of bleeding by CT scans and cerebral angiogram he gave me the diagnosis of Perimesencephalic Subarachnoid Hemorrhage.

I then did my follow up appointment with another neurosurgon 3 weeks later and a follow up CT scan. That neurosurgon also gave me the diagnosis of Perimesencephalic.

I was told everything was fine and in 3 months I was free to go about every activity in life without any restrictions whatsoever and that NO follow up testing was needed.

However, Cedar Sinai Hospital has a program where their neurosurgons will review all films and reports and give a second opinion. I mailed everything in and waited 3 weeks their neurosurgon there called me and said my initial diagnosis was wrong and that I should get another cerebral angiogram test.

I am now going to UCLA medical center next week for another opinion and I assume they will order another cerebral angiogram.

My first one was kinda traumatic and I really dont want a second one.