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New here, 8mm brain anuerysm

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Old 06-28-2015, 09:02 AM   #1
BioBased
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Default New here, 8mm brain anuerysm

My aneurysm is in the Circle of Willis, between my eyes. It is 8mm with a 4mm opening. The doctor wanted to coil and stent it right away, but it scared me, because I was not given much information. I have since learned that coils can compact which requires a second operation, a stent can collect plaque causing a stroke and it is not a once and done procedure, because it requires follow up care with MRA's.

I would love to know if there was anything I could do proactively to help prevent a negative outcome, like strengthen my veins, clear the plaque from my arteries.

I would also love to know if there are tests that I could ask for that could help me feel more confident to have this surgery.

I have reflux dystrophy syndrome which was recently diagnosed. Dr Chopra said that people who have CRPS have fragile veins. I don't want to die on the operating table, because I did not make an informed decision.
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Old 07-11-2015, 07:34 AM   #2
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It's frightening when you receive news like this. How was it diagnosed, did you have an MRA, an angiogram, or both? My neurosurgeon calls the angiogram the 'gold standard'. Have you talked with your surgeon about further tests?

Coiling or stenting is certainly a less invasive option, but yes, there can be problems and, maybe, further surgeries. My aneurysm was 5mm when my doctor he decided to intervene. I know they aren't always able to 'get to' the aneurysm with 'clipping', and use coiling instead. I had the clipping and was pretty terrified! They were going to cut into my head and dig around! What helped me was my complete confidence in my surgeon. He chose to clip because it was accessible and permanent. I had a follow up angiogram to confirm everything was good.

You need to have time with your surgeon to get your questions answered. Where are you at with this? I see you posted awhile ago. There aren't alot of people in this section of the forum.
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Old 07-13-2015, 09:09 AM   #3
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Hi brain freeze,

Thank you for responding. My annie was diagnosed in March during an ER trip for a bad reaction to two antibiotics and agonizing pain in my foot and ankle, the latter was diagnosed in May as Complex Regional Pain Syndrome. I still am not sure why the ER doctor sent me for the first CT scan, quickly followed by a CT scan with contrast. Afterward I was ambulanced from that ER to one at a major hospital, but after waiting all night there with a port in my arm, because I was told I was being admitted, I was suddenly discharged. It was very bizarre, because once the Annie was found the issues which brought me to the ER were not handled. I was given crutches at discharge which I have used every day since, so I guess that was something.

I did see the top person who specializes in Annie's, but I felt there was something off. I cannot put my finger on it, but our meeting seemed strangely lacking in substantial information. I was very sick from the antibiotics and overwhelmed by pain in my foot, and I had no real information to allow me to research.

You are fortunate that your Annie was clipped, despite the invasiveness and the recovery. I call it "once and done."

The coiling has a 1/3 repeat rate. It requires monitoring and lifetime aspirin therapy when there is a stent.

Frankly I don't know where I am. Is a CT scan with contrast an angiogram? Is that another procedure?

The picture of my Annie that was given to me looks like there is another Annie. When I asked the doctor if I had a second annie he hedged. He said he would have to know which view I had.

I am considering getting a second opinion, but I frankly do not know where I would start.
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Old 07-13-2015, 10:13 AM   #4
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Biobased.
My suggestion to you is that you get a good neurologist, neurosurgeon and a interventional neurologist. Have input from these doctors.

Being diagnosed with a non reptured aneurysm is something one must take serious, and it needs attention. You should not delay this. In a way you are lucky that this was found incidentally. Sometimes, and very often actually, people do not know they have an aneurysm until it ruptures, and the survival rate is MUCH lower in this cases, depending how quickly one reach the hospital and get emergency surgery to stop the bleeding and repair the aneurysm.---So consider yourself lucky to have found this.

A ruptured aneurysm is a life thretening medical emergency.
( and there is no telling when it can rupture, and then causing a bleeding into your brain)
The symptoms of a ruptured aneurysm is an excruciating headache, the worst one has ever had. ( Many people die) if not treated very quickly.

The best practice of treating ( rule) of aneurysms, is that it should be repaired if it is 6 mm or grater. If it is less, sometimes neurologists decide to monitor the aneurysm closely with MRI and Cerebral Angiogram on a regular time intervals. They then look for enlargement of the size of the aneurysm.

A Cerebral Angiogram is a procedure when the doctor insert a catheter into a large blood vessel in the groin, thread it up into your brain. There is injection of contrast dye. The procedure is monitored on a big screen. The pictures taken will help the doctor locate and measure the exact cite and seize of the aneurysm. This is done prior to the repair of the aneurysm.

I had an aneurysm noted on a MRI done due to visual disturbance and headache. They found a 6 mm aneurysm close to the optic nerve.
I decided to have this fixed right away, and had procedure done within a few days
I had it repaired by Endovascular embolization and stent placement.
Meaning I had coils placed inside the aneurysm, and a stent in the bloodvessel by the aneurysm.

This is the procedure that is being used much these days. What actually happens, is that the coils fills up the aneurysm, then as, time goes by, the body responds is that there will be growth of new endothelial cells filling up the aneurysm. The stent assist to close the opening into the aneurysm from the vessel.

I had to be monitored with new Cerebral Angiogram every 6 months for 1 year.
I was put on Aspirin 81 mg( small dose) and Plavix to prevent a cloth forming in the area .
Yes, the Aspirin treatment will be for life, but that is realy something that is a good prevention in general of both heart attack and stroke. The Plavix is usually for some months( until the aneurysm has stabilized and there is less chance of a cloth to form along the stent(causing a stroke). Some doctors gives this med for longer periods.
In my case, the Plavix was stopped after 6 months, and about a week after that I had a tiny little cloth forming, causing a small stroke. The Plavix was then restarted, and I will be on it for lifetime. My doctor and I decided on that.

So, I suggest you get some good neurologists. I would not leave an aneurysm untreated if you were so lucky as to find one.

Best of luck.

Last edited by Synnove; 07-14-2015 at 07:18 AM.
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Old 07-13-2015, 10:22 AM   #5
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Another thing I forgot to mention.
The other option of repair of aneurysm is clipping. This means surgery where the neurosurgeon opens up your skull, and put clipping, put a metal clip over the aneurysm. This is a open method. I would think the risks involved would depend a little bit on the location of the aneurysm.
You would have a longer recovery time.
Sometimes this is the method they choose if they can not reach the aneurysm via the endovascular method.

So, your doctors will have to explain the different methods, and all of you make a decision.
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Old 07-14-2015, 08:40 AM   #6
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Bio based, where are you at with this? I'm hoping you're making progress. Until you get things taken care of, that will be ALL you think about. Very stressful. People do travel to find the best care. Are you located near a respected large medical center?
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Old 07-14-2015, 10:12 AM   #7
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Hi Biobased,
This sounds like a very scary situation for you and I hope you can get to a doctor soon to get the information you need to proceed.

Am I right that your only head images were two CTs? You might want to talk to a doctor about an MRA. This is done in the MRI machine and can show what's going on with your arteries. It might give you and your doctor some good information before you proceed to more invasive procedures. I'm just guessing here, you would have to speak to a doctor. I just know I was given a MRI and MRA for a sudden, severe headache. They were both done at the same time and took about 40 minutes total. In my case, these two tests were enough for my doctor to rule out aneurysm and brain bleeding. Of course, your case is quite different from mine because you already know "annie" is there.

Do you have someone to go to your appointments with you? Discuss all your questions with this special someone, write them down, and tell them that their job is to make sure everything gets answered to your satisfaction. Sometimes I feel better when someone else asks questions on my behalf and it's nice to have someone to talk to after the visit to help you absorb and understand everything that was discussed.

I hope you find a good team of doctors SOON so you can learn more and decide on a course of treatment. Good luck with everything!
Cheryl
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Old 07-15-2015, 10:01 AM   #8
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Quote:
Originally Posted by brainfreeze View Post
Bio based, where are you at with this? I'm hoping you're making progress. Until you get things taken care of, that will be ALL you think about. Very stressful. People do travel to find the best care. Are you located near a respected large medical center?
I am in the Boston area. Basically I am doing nothing, because I do not know what to do.
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Old 07-16-2015, 03:45 PM   #9
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Do you have a primary care doctor? He or she should be able to see you right away and steer you in the right direction. I don't mean to sound pushy, but I think it would be better to do something than to do nothing.

Good luck, Cheryl
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Old 07-17-2015, 09:50 PM   #10
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I agree, you need to seek help now. I'm sure there's a number of good hospitals in the Boston area. News like that is hard to get, you've probably been absorbing it, now it's time to take some action. Good luck to you and keep us up to date.
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