after unruptured brain aneurysm surgery

[mikhtov]

I had a brain aneurysm surgery (clips) for an aneurysm in the right internal carotid and another in the communication artery, 4 years ago.

My surgery was done in the USA, and when I came back to France where I mostly live now, on March 2014, Doctors said I had a new aneurysm in the Pericallosal artery - but they were not sure.

In France, they don't want to do an RMA on me because, they say, their equipment is not compatible with the clips that were put in my arteries in the USA. You must know that in Europe, and France especially, they do mostly endovascular therapy and you find less and less doctors specialized in Brain aneurysm surgery, even for ruptured brain aneurysms.

Although the surgery seemed to have gone well, I never felt the same again. Nothing important shows physically although I aged 15 years since then, but my lifestyle has tremendously changed. I started to see things on a "dark side", hate everybody, lose my friends, refuse to go out and meet people, travel or anything I used to do very cheerfully.

I have headaches of course, but that is the least of my pains. It's the fatigue, the shortness of breath, the sleepless nights (like if I was on a permanent 12 hours jet lag), and pain in different parts of my body each day: allergies, asthma feel like, and all sorts of problems.

But I have been diagnosed a long time ago for fibromyalgia, and I am not sure if it is the brain surgery or the fibromyalgia that is responsible of my everyday and every night suffering.

I wonder though if the surgery didn't increase the fibromyalgia symptoms or made the crisis more severe, and almost permanent (before, I had pain and fatigue from fibro mostly when I had great stress).

Lately something new occurred: I have dizziness, my fatigue is making me feel like if I was disabled, which I am not really, not in the true sense of the word.

Moreover, for the last few weeks, I feel a strange dizziness, a fainting like sensation, and big physical pressure inside my head, my brain, my temples and ears. It’s like if my brain had a life on its own.

My ears are clogged as if a veil is covering my eardrums, far inside.

I have lost my appetite for good and healthy food which I used to cook my whole life, like steamed vegetables. Now I feel I want only junk food. I used to be very careful to keep my figure, but now I don't even care.

Because doctors in France don't want to give me an RMA as explained above, I am worried about these new symptoms, namely dizziness, clogging ears and pressure in my brain. CT SCAN alone, they said, is not sufficient to really analyze what is going on in my arteries and in my brain.

If you have any suggestion, please help. Thanks a lot

[Bonnieblyth]

Sorry to hear you are suffering. What about requesting a cerebral angiogram? More accurate than the usual scans. Google it, its worth suggesting to your doc.

Good luck x

[mikhtov in reply to Bonnieblyth]

Thank you. Yes, but they won't do it in france, for the same reason: it's like an RMA. Plus, to be truthful, I am afraid in france. Doctors are not what americans think they are. A lot of people die in hospitals and you can do nothing about it, because everything belongs to the government.

[lcd8]

HI. Really sorry to hear about your dreadful symptoms. It sounds to me like you urgently need an MRI scan and angiogram to find out exactly what is going on. MRI is much more detailed than CT and can show things that weren't apparent from the CT scan. I can understand if the French doctors don't want to do RMA. But you do need to find out what is going on now because your symptoms sounds pretty severe to me.

Unfortunately I have read many times on websites that brain surgery can have nasty effects such as causing fatigue. To make matters worse every case is different so its hard to compare one person against another. Also things like aneurysms and AVMs (which I have) can regrow unless they are removed entirely. I'm living with my AVM because I'm not confident that treatment won't make things worse for me. Good luck.

[mikhtov in reply to lcd8]

Thank you very much for your advice and feelings towards me. Yes, I waited a long time before I decided to do it. I didn't want to do it but living in France made me decide to do it in the USA. Most people in France are either dead or disabled for life when they do it in France, and I was afraid to have a rupture while being in France. Social medecine is far from perfect.

What about your AVM? I am not very familiar with it. I will make some research. Tell me about it. Is it like an aneurysm?

[lcd8 in reply to mikhtov]

Hi. Thanks for responding Mikhtov. My understanding is that an aneurysm is a weakness in the wall of a blood vessel. An AVM is a tangle of blood vessels carrying increased blood flow which can put pressure on those vessels. So yes they are very similar. But I'm no sure what causes an Aneurysm (if anything). AVMs develop in the womb and are therefore usually present at birth. I guess I ought to thank my lucky stars that mine didn't show itself until puberty. It has never ruptured but caused a secondary condition at that time and when they did an MRI they found the AVM. It is in a dodgy part of the brain though, embedded deep down. So they aren't confident they could get it without causing other deficits.

[malalatete]

Hi miktov

I have an inoperable aneurysm which was fitted with a flow diverter device last year. From the research I did into the various options I understood that in the States if any implants were used patients were usually given full details - a special information card - of exactly what that implant was, precisely so that they could have it checked.

I would suggest that you take that information (and get it from your original surgeon if you were not given it) and get your primary care doctor to write to a neurosurgical specialist consultant to ask them to clarify exactly what the position is in relation to [your specific implant - clip make, manufacturer, material, size, etc.] for MRI, and for angiogram and any reasons why such investigative scans may not be considered in your case. They may well be more specific if asked a direct question by another medic.

I'd be surprised if your (only 4 year old) clips were contraindicated in MRI and angiogram across the board in France - the fact that the preferred European treatment is endovascular means that there is a huge reliance on MRI and angiogram for post-treatment follow-up in people with aneurysms (I have to be angio'd every 2 years - for the rest of my life) and for that to be incompatible with having bits of metal in your head would make no sense at all. That's why being exact about the clip specification is so important.

As to your symptoms, yes, all common neurological manifestations. Fibro is of course now acknowledged as a neurological condition so the two things will interplay. It is always worth insisting on getting the right scans as peace of mind is important because stress, as you have noted, will make both fibro and acquired brain injury (which you have as a result of your surgery) much worse.

Hope this is helpful.