The Right Decision

[Riane]

I just got off the phone with my GP.

He has sent in a requisition for a CT angiogram to follow up my brain bleed of June 17th. This is to be the first follow up after the CT scans I had while in hospital.

He has requested a CT angiogram "Circle of Willis" scan. That is the one where contrast dye is injected through IV, into the veins, then the CT scan conducted.

I asked (12 days ago) for a 4 vessel catheter CT angiogram - that is the one where the catheter is inserted through the artery in the groin then the contrast dye is injected into the arteries.

My GP feels that the risks are much greater with this procedure. I said that regardless of the increased risks, I would like the 4 vessel catheter procedure.

He has reluctantly agreed to see if he can book this one.

Have I made the right decision in pushing this?

I am having such a hard time making simple decisions these days, a decision like this one feels huge and overwhelming.

I am afraid that I'm p******** off my doctor (not a good thing) and if I do get the procedure I am requesting then I have to travel hours for it, and have to face the extra risks of the procedure itself.

On the other hand if I get the less invasive procedure (that my doctor admits doesn't take as close a look) and it comes back negative (as everyone is anticipating) I am afraid that I will still wonder if I do indeed have an aneurysm lurking in my head.

My husband suggested I post here, since everyone here is somewhat familiar with the procedures I'm talking about.

What would you do?

I'm so confused...

Riane

[Sandi K]

Hi Riane!

Decision making is tough in the early stages of recovery and I found that I was especially (having trouble finding the word) easy to convince or persuade. I'm still catching myself while doing my return to work, sometimes it's just easier to give in because I'm tired or second guessing myself. So be careful and make sure you choose what fits best for you.

I never thought to insist on anything. Mind you, I didn't find BTG as quickly as you did and I wasn't as informed. I also want to believe I have no aneurysm and the bleeding vessel was obliterated and no longer exists. I had a follow up CT scan - 3 or 4 weeks after I got home from hospital. My cerebral angiogram (through the groin) was while I was in hospital. The first CT scan was an hour after I arrived to hospital. Do you have your written reports and scans? You can ask for copies of everything, you have every right to. It might help to explain stuff. I'll send you what I have about mine.

Sandi K.

Xo.

[Surfer34]

Riane - I would say the catheter angiogram is the test you should get. However, there are risks involved. Therefore, I think you should research the risks of the test vs likely yield of information gleened from the test.

In repeat DSA of all angiogram negative patients the yield rate of finding an aneurysm is about 1- 20% depending on various factors. To make a long story short, perimesencephalic SAH has a yield of about 1% and "diffuse pattern" has a yield of about 15%.

The general risk of DSA for complications is 1.3 % but those numbers can be broken down into many many categories. The complications are "transient" meaning lasting less than 24 hours, "reversible" meaning between 24 hours and 3 days, and "permanent" meaning......forever, lol.

For me personally, factoring in my age and lack of cardiovascular disease I fit into a bracket of .3 % risk of complication and no risk of "permanent" complication. Based on that I decided the DSA test was less risk than the probability of finding an aneurysm. However, the doctors here made it almost impossible for me to get one so instead I had an MRA at 8 month follow up (besides my CT angio at 14 days).

There are many studies online about yield of repeat CT vs DSA and also many studies about risk of DSA.

Also remember that DSA subjects you to an enormous amount of radiation but personally I dont think its a problem.

As far as always wondering if you have an aneurysm, if your repeat DSA doesnt show an aneurysm that doesnt mean you dont have one. When reading the studies on repeat DSA you will see that many people who reveal aneurysms on repeat DSA were from 3rd and even 4th tests. (not to scare you, lol)

Im sure though that someone will come on and say statistics dont mean anything though

Edited August 9, 2011 by Surfer34

[Riane]

Surfer, what is DSA?

[Surfer34]

digital subtraction angiography = intraarterial catheter angiography = the test you already had and want to have again, lol

A few things I have learned from reading about CT and DSA - ct angiograms on the newest generation 64 slice machines are pretty darn accurate now. when compared to DSA for aneurysm detection they are roughly 100% for aneursms largers than 5mm and in the 90% for smaller ones. Even if you have ct as your follow up test you can be assured that your chances of having a missed aneurysm is about 1% or less.

New generation MRI machines are now generally considered equal to CT for aneurysm detection but once again they fall off for sensitivity for smaller aneuryms, under 3 mm. However, they are roughly thought to be in the 80% range for those small sizes.

Edited August 9, 2011 by Surfer34

[Sandi K]

I wonder if all my head problems are from too much exposure to radiation? ; )

Surfer, thanks for all this info. You explain it well. I sent Riane all my reports. When I first sent them to you (Surfer) it was mumbo jumbo. Now when I read them they make a bit more sense. I hope that means my brain is healing.

Riane, it's a lot to take in. Especially when your head hurts and you are so tired!

Sandi K.

[Surfer34]

sandi - i have wondered before about what effects the radiation has on our brains. from what i have read it should have no effect in the short terms (0-10 years) but long term it will increase the risk of brain cancer, albiet a small increase.

riane - i hope you understand that my opinion on which test to have is just an opinion based strictly on which test is better for detecting occult aneurysms.

your doctor knows your condition and whatever choice they make you should put the most emphasis on that.

there is much disagreement among doctors on follow up testing for angiogram negative patients. i sought 5 opinions for my case and 3 doctors said ct angio is best and 2 doctors said dsa is best.

in america the policy varies from hospital to hospital and from doctor to doctor and patient to patient.

[Winb143]

Riane Sandi and Surfer,

Whatever choice you make Riane ..good luck...Me I'd go for the painless,quickest and easiest lol xx

Sandi hiya hope your head feels better xxx

Surfer you are Brain of Britain....xx

Good luck all. ..shall I sing..no I'll hurt Sandi's head x

Love

WinB143

[Riane]

Thanks Surfer and Sandi for your information, Thanks Win for your good wishes.

I did more research last night (gawds I'm getting tired of research...never thought I'd say it before...I used to love it)

I found a very useful article on the American Heart and Stroke Foundation website which discusses a study done rating the different follow ups in the case of NASAH. On closer inspection I am concerned about the potential serious side effects of the catheter angio, and the study indicates that there really is very little difference in results.

Soooo, cap in hand I must write a note to my doctor, serve up myself some humble pie and apologize for my little freak-out yesterday. I will also cut some flowers from the garden for him. Too bad the raspberries are done for the season,otherwise I'd have brought him a nice basket of fresh ones. Hmmm, maybe I'll bake him something.

Seriously, making decisions is so over my head these days. I have trouble deciding which clothes to choose to wear in a day.

On a side note, Sandi, I did find some mention of the effects of the radiation from the catheter scan (they use 2-3 times more dye in that one) on subsequent brain function. I can't remember if it was in the study linked to above, or if it was a different one. I don't think it is far fetched to think there may be some residual brain function difficulties as a result of the invasive tests.

Thanks again for your feedback my NA (North American) fellow PMSAHers. What a trip, eh?

As Win says, I'm off to do the more painless, quickest and easiest route. Ahhh, the easy button, there it is!

[ericy]

Thanks Surfer and Sandi for your information, Thanks Win for your good wishes.

I did more research last night (gawds I'm getting tired of research...never thought I'd say it before...I used to love it)

I found a very useful article on the American Heart and Stroke Foundation website which discusses a study done rating the different follow ups in the case of NASAH. On closer inspection I am concerned about the potential serious side effects of the catheter angio, and the study indicates that there really is very little difference in results.

Soooo, cap in hand I must write a note to my doctor, serve up myself some humble pie and apologize for my little freak-out yesterday. I will also cut some flowers from the garden for him. Too bad the raspberries are done for the season,otherwise I'd have brought him a nice basket of fresh ones. Hmmm, maybe I'll bake him something.

Seriously, making decisions is so over my head these days. I have trouble deciding which clothes to choose to wear in a day.

On a side note, Sandi, I did find some mention of the effects of the radiation from the catheter scan (they use 2-3 times more dye in that one) on subsequent brain function. I can't remember if it was in the study linked to above, or if it was a different one. I don't think it is far fetched to think there may be some residual brain function difficulties as a result of the invasive tests.

Thanks again for your feedback my NA (North American) fellow PMSAHers. What a trip, eh?

As Win says, I'm off to do the more painless, quickest and easiest route. Ahhh, the easy button, there it is!

Riane:

For what it is worth, I had 2 catheter angiograms (one while in the hospital and one as a follow up) in addition to CT angiography while in the hospital. I think, in my case, that they decided to do the catheter due to the first CT angiography being negative. My bleed showed up on MRI/MRV. In retrospect, they found it on the initial CT scan (regular w/ angiography) from the Emergency Room when they looked at it again. I have no side effects, that I know of, from the tests thus far. Getting back to work has caused some relatively constant, low grade HA for me, but I am trying to stay hydrated. We've discussed our mutually crazy schedules before.... God bless you, and keep us informed.

Eric

[Skippy]

Hi Riane

At the end of the day you have to do what is best for you. If you've weighed up the risks and decide on the catheter to put your mind at rest, then thats the way to go. I had a ruptured aneursym of 3mm and an unruptured of 1mm - both picked up by the MRA/MRI scanner and subsequently had both coiled. Technology will also vary from country to country and from hospital to hospital within each country.

Personally I would go for the test that would give the clearest picture of the brain and all its anomalies regardless of statistics and providing the personal risks weren't too high.

Good luck and have everything crossed that you get the test you want and that the results are good.

[Surfer34]

Thanks Surfer and Sandi for your information, Thanks Win for your good wishes.

I did more research last night (gawds I'm getting tired of research...never thought I'd say it before...I used to love it)

I found a very useful article on the American Heart and Stroke Foundation website which discusses a study done rating the different follow ups in the case of NASAH. On closer inspection I am concerned about the potential serious side effects of the catheter angio, and the study indicates that there really is very little difference in results.

Soooo, cap in hand I must write a note to my doctor, serve up myself some humble pie and apologize for my little freak-out yesterday. I will also cut some flowers from the garden for him. Too bad the raspberries are done for the season,otherwise I'd have brought him a nice basket of fresh ones. Hmmm, maybe I'll bake him something.

hey riane, the study you linked to wasnt for repeat testing, it was for initial testing in the acute phase (while in hospital).

one thing i did was to look at my scans and read my reports to determine if i had a true perimesencephalic pattern of hemorrhage. the definition has changed a bit over the years and with different doctors. i had 4 doctors say i had perimesencephalic and one doctor say it wasnt the typical pattern.

if its NOT perimesencephalic then the number of aneurysms revealed on repeat DSA is high, some studies showing over 20%.

[Riane]

I don't know what to think!

I thought I had it figured out...where did that easy button go?

I'm overwhelmed again by what feels like an enormous decision with enormous implications.

I feel like I'm supposed to put the pieces together and try to come up with a decision, when the pieces dont' even make sense to me.

I haven't seen the original report or photos from the first CT scan.

What i have is the report from the 2nd CT scan, where they say:

"A small amount of subarachnoid hemorrhage is again noted in the interpeduncular cistern and has not appreciably changed, but is less well-assessed on the current study. Not gross parenchymal mass lesion or infarct is seen. There is no shift or herniation. There is no hydrocephalus."

The 3rd scan (a catheter CT) says:

"No aneurysm or vascular malformation is seen. No dural fistula is identified."

Last week's report from the Neurosurgeon says:

"She underwent conventional catheter angiography and CT angio, both of which did not show an aneurysm. I reviewed her CT from June 17, 2011 which shows some blood anterior to the midbrain which is consistent with 'perimesencephalic hemorrhage', a benign entity. Headaches may persist for weeks or months, but there is no specific treatment. All that I would suggest is a follow-up CT angio of the Circle of Willis either at (local hospitals named). in the very unlikely event this shows an aneurysm, I would refer her to one of the vascular neurosurgeons in Vancouver, otherwise her headaches will hopefully resolve with time."

Based on the above recommendation my doctor booked me for a CT angio, rather than a catheter proceedure.

Of course, instead of trying to put the pieces together and come up with my own decision, I could always turn it over to the doctors and go with what they think.

The problem with that is I have never been very good with that. It's not their life they are dealing with, it's mine. They are dealing with stats. I am dealing with my head and my mortality.

I just dont' know what to do...

[Surfer34]

I have learned that doctors dont always make the decision based on whats best for YOU. They have guideliness often based on cost. A CT angiogram here in America costs about $450 and a DSA costs about $3,500. If someone else if paying the bill then they are going to suggest a CT angio.

There are a few reasons why an initial DSA would fail to reveal an aneurysm. Some of those reasns are vasospam, technical error, hematoma, or very small aneurysm or interpreter error.

My doctor told me that the reason why they didnt repeat my DSA was because I had no vasospam, I didnt rebleed in the hospital and I had no loss of conscious or seizures (in addition to having a perimesecephalic pattern of bleeding).

I would sit down with your doctor and raise all of thse questions and see what his answer is.

neurosurgons have alot more experience and knowledge than we do. but at the end of the day its our bodies and life and not theirs.

[goldfish.girl]

Hi Riane,

Is there a SAH support worker near you or a specialist nurse at the hospital who you could talk this through with? My experience has been that they will give you the best advice in your personal circumstances. There is a specialist SAH co-ordinator nurse at the hospital where I was operated on (unfortunately it is 200 miles away) but she does seem to be up to date on the latest info & had my notes to hand. I felt very reassured after speaking to her last week and she is able to communicate with the neuro surgeon far more easily than a GP could as they work closely together.

It really would be best to speak to a medic who specialises in this field and is familiar with your personal history before making an informed decision.

Best wishes,

Michelle x

[Riane]

I just found this article (from the local hospital that does the CT angio) about a review of the findings of one of the radiologists there.

I was trying to find out if they had the 64 slice scanner and found the above article.

Then I called the hospital, they do have the 64 slice scanner and a different doctor is working (and reading the scans) next week. (appointment is set for Monday).

All this angst isn't good for me head...

[Riane]

Hi Michelle,

I wish there was such a thing. Really, it's like the Wild West here on the North American frontier. I can't believe what I read about what you folks have in the way of support and facilities over there. It sounds wonderful. Like an imperfect system that actually cares.

Unfortunately there is no such thing as a SAH worker (not that I've ever heard of, Sandi? have you heard of one?) over here. It really is patient follow what your doctor says, or try to educate yourself.

Surfer, thanks for your feedback. I really do value your perspectives. I also share a lot of them. Doctors (and insurers) deal with stats. Patients deal with their own lives.

Unfortunately, I think my doctor is a bit fed up with seeing me. While he believes that I dont' need the CT angio, he has agreed to send me down to Victoria for it. He told me he would order whatever test I want. I have asked many questions of him and he has answered them to the best of his ability (he does have experience in Neurology and with SAH). I've taken a whole lot more of his time than I've been allotted for appointments. I have put so many questions to him and I believe (I may be wrong) that he is growing a bit tired of my questions.

I think I'm now gonna give "the office" the rest of the day off. Step away from the computer, go out into the garden and get some perspective here....

[Surfer34]

tell your doctor that if he is sick of seeing you then thats all the more reason to rule out an aneurysm, he'll never have to see you again

[goldfish.girl]

Riane, I am sure your doctor is not fed up with you, it may be a case of you asking questions he cannot answer (professional pride dented?) Having initial experience of brain injury or SAH doesn't make anyone an expert on the aftermath.....

A doctor recently told my son son not to worry about 'mum'. She has been fixed and she is fine now!!! Yes the annis are coiled and stable but that is only the beginning (my poor boy even looked skeptical - he lives with the aftermath on a daily basis....)

Which ever follow up you choose, perhaps you could speak to the consultant first, or raise your concerns with his/her secretary/appointment booker? The consultant is duty bound to give you up to date advice & current statistics concerning problems with either procedure. I have had 3 (maybe 4?) angios through an artery in my groin since my bleed, all have gone well, although admittedly not pleasant experiences, and 2 wks ago an MRI (with and without dye). There are risks with any procedure but you will have to weigh these up against peace of mind. I can only say that with the angios, I had a running commentary & instant result,a long with a fascinating view of what is inside my head!! the MRI took 2 long, stressful weeks and a lot of telephone chasing to find out the result and was also not pleasant as I am very claustrophobic. Personally, I felt more reassured by the angios as I feel they had a more invasive view of what is going on but that is my own personal opinion and won't suit everyone. The upside is that all have proved 'stable' and I can now finally relax that the head pains, fatigue, diziness are not signs of anything sinister about to happen but just a result of the brain injury. It's taken 3 years to get to this point but maybe you will be able to get there sooner if more test show no anni that may play up again. I really hope so....

Michelle xxx

[Sandi K]

I don't know of an SAH support worker here but what a good idea that is! Maybe if we had aneurysms or surgery or longer stays in hospital we would have had access to more resources but I don't think so.

In my first session with the psychologist today I spoke a bit about how angry I still am at being sent home without really knowing what happened and the seriousness of it. She wasn't surprised that I wasn't told anything or offered more than I have been.

Riane, I admire your ability to stay focused on the research and your determination to get to the root of the problem.

Sandi K. Xo

[KelBel]

I have never heard of an SAH Support worker!? That would have been a huge help!

Although I did speak to nurses on the Brain & Spine Foundation helpline who helped with my questions and fears, it would have been even better to have access to a qualified SAH Support worker who would have my notes and details in front of them, and know about my particular case.

Care varies so much around the country as well as around the world.

I also feel as though my Dr's have had enough of me...

[goldfish.girl]

Kel, the lady who worked with me is from Momentum (a head injury organisation) I called her an SAH support worker as I'm not sure if non UK members would have heard of Momentum. Her proper title is 'acquired brain injury support worker'. She probably didn't have access to my medical records but is highly experienced in supporting people to recover and adjust after SAH. The hospital has a specialist nurse who would have access to medical records and can answer any questions I have.

Sorry if I've confused you.

Michelle x

[SarahLou]

I had my surgery at the Wessex Neurological Centre at Southampton General Hospital and had a nurse specialist who you could contact at any time, and I did,many times. She has been totally brilliant. I thought all neuro centres would have this support??

The Wessex is organising a support group meeting as of September.

To be totally honest I don't know how I would have coped without the nurse specialist, Lesley is a true star.

SarahLou Xx