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Old 01-22-2007, 06:56 PM   #1
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Brain Aneurysm

A doctor told my daughter she is lucky to be alive. She had an MRI, maybe even an MRA four years ago and was told this. He said she has a brain aneurysm. I just now have found this out, and I'm devastated. I'm hoping this doctor was wrong. The doctor wanted to operate on my daughter but she didn't feel comfortable with doing this.

I need to get her in to be checked by another doctor; I had no idea she has been living with this terrible information for now close to four years.

I wasn't aware that surgery could be done on a brain anerysm. I feel so bad I don't know what to do for her. I would take it myself if I could so she doesn't have to go through this.

My daughter was diagnosed with cerebal palsy when she was an infant, and I'm wondering if the brain aneruysm could be from that? She has always had problems with her left hand and foot. She is blind in one eye. She already has so many problems, this latest bit of information is more than I can take. She is unable to drive due to her disability; she has had a hard life having to deal with all of her disabilities. I'm not sure what to do now with this latest information.

In reviewing medical records from when she was a teenager, it states they didn't believe she had an aneurysm, was this caused by the cerebal palsy, or do you believe something else. I just want this doctor to be wrong, I can't take much more.

Thank you for any information you can send to me.

 
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Old 01-24-2007, 07:57 AM   #2
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Re: Brain Aneurysm

sorry i couldn't get to this til today.i just needed to ask,and please do not be offended,but just what IS your daughters mental status.i mean is she capable of making these types of decisions on her own?i know some CP patients just simply can't.i am really suprised that this doc didn't push much harder for treatment of this.telling a patient she is lucky to be alive then doing absolutley nothing to actually minimize the very high risks with just having any aneurysm inside the brain just doen't seem right to me at all.i know the ultimate choice is up to the patient but i am wondering if she really really understands the risks here in not actually treating this in some way to minimize the risk of sudden rupture.it is really,in most situations much less risky to actually have these coiled or clipped then it would be to just monitor and pray to god that they do not rupture.

if this was actually four years ago,chances are her aneurysm has become more dangerous since then,this i am pretty sure about since there really isn't any way to stop the continued enlargement of it.the aneurysm will just keep getting hit over and over again til that arterial wall just completly gives and ruptures.at that point,it becomes a life and death type of situation with possible irreversable damage done to the brain.its really not a good situation at all.

she really should have had something done four years ago.i really don't think she was made fully aware or possibly not capable of that level of awareness?i can't say since i don't know her mental staus,but that doc didn't really bring home to her i don;t think,of all the huge risks involved here in just not treating the aneurysm in some way.when you get told that you are "lucky to be alive' well something needed to be done four years ago.i was scared senseless when ifound out about mine and knew i HAD to do something or i would worry myself crazy about the possible rupture.it was a huge relief when i was lying there post coiling.at least i knew the risk of a ruptue would be eventually minumized after the first 24 hours post coiling.

i would very highly recomend getting her to a good neurosurgeon who can do another follow up MRA and see how much this thing has actually grown over four years.she will need to obtain the other films from wherever she had this done and also the actual rad report.they will need this to compare it to four years ago.just make sure to advocate for her on this and she really really needs to be made aware of the huge risks she is taking here by not choosing to do anything.i just don't think she really knows how bad this can get or she would have had something done four years ago.but she does need your help here and that new MRA as soon as possible.get her in to see that old doc she saw four years ago,since she is an established patient,she will just be able to get in to see him much much sooner than if you started her with a brand new neurosurgeon.but this needs attention soon.

i wish you lots of luck with this and hope she will opt to have something done.these really are sooo very unpredictable with regards to any sort of actual bleed or full rupture.please keep me posted on how things are going with your daughter.take care,marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Last edited by feelbad; 01-24-2007 at 08:00 AM. Reason: can't spell!

 
Old 01-24-2007, 11:15 AM   #3
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Re: Brain Aneurysm

Hi Marcia, Thanks so much for writing back to me.

I just unfortunately found out about this from my daughter, she was out of contact with me for four years. I didn't even know where she was at. She told me she got so scared over what was told to her, and felt the doctor was just trying to make money from her medi-cal insurance. She told me she worries about this constantly. I can't believe she has let this go this long. She was afraid to be operated on, and I don't know what procedure the doctor wanted to do.

The doctor who told her this lives far away from where my daughter lives now so she really can't go back to him. I am planning on ordering the reports immediately so I can take her to a doctor here to get their opinion.

I'm curious about this coil procedure you had done? From the little bit of reading I've done, I see there are about 30% of of cases where this can be done and it's much less invasive. I hope my daughter can have this procedure instead of the other. Let me know what you know about this, and how everything is done. Thank you so much, I'm so worried I don't know what to do. I can't believe she has let this go. If she had been speaking to me I would have made sure she got something done. Her mental status sometimes doesn't seem rational to me. I asked her why she did this and she claimed her and I didn't get along. I can't get over that attitude because we had normal mother/daughter stuff, but nothing to make her do that. She did it one other time to me, she just takes off and runs away, which has devastated me. She keeps in contact with her father and grandmother, but they aren't concerned about this current problem and never bothered to be kind enough to me to even let me know my daughter was alive. Unfortunately she doesn't seem to see who really cares and who doesn't. So that is a description of her mental status. She never completed paperwork needed to keep her medi-cal, and I just went through a lot to get it back for her. Her father never bothered to do anything, he has insurance and that's all that matters to him. Her father and grandmother have encouraged her to not have anything to do with me, I'm scared she'll do it again to please them. She is very easily brainwashed, it's very sad.

She has been holding down a full time job now for 3 years, so she can be capable in someways. The running away part to me isn't rational, but the grandmother and father tell her it is.

 
Old 01-25-2007, 07:18 AM   #4
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Re: Brain Aneurysm

so sorry to hear of your circumstances with your daughter,really.it is sad. despite the fact that she has held down a job for years,she still sounds ,from what you have described,in need of a bit of guardianship,at least to some degree.if she failed to get in the needed paperwork just to keep her insurance,she may need some help in coordinating her health care.my son has bi polar and also suffered a brain injury,and has a liver transplant.i am the one who coordinates his healthcare and takes care of his disabilty stuff.his decision making capabilities are not up to par due to the brain injury(brain bleed from trauma into his frontal lobe,the executive decision making area) but he appears pretty normal in every other way,so i know how you feel.she does require some level of oversight.her decision not to go ahead with some form of treatment just because she was scared,well,in this type of a situation and given what the doc told her,i really don't think she is capable really of truely having her best possible interest at heart here,do you know what i mean?

you seriously need to step in just to make sure she is making the right and best choices for herself.you also may not be aware of other things going on with her as well just stemming from the fact that you have not actually had any real contact wioth her for four years.she most definitely needs to have the aneurysm re evaluated to see what is going on and also get ahold of those old records too.they will need to be able to compare the old vs new info on the growth and formation of the aneurysm.

as far as i know right now,the only two options availiable to treat aneurysm are the clipping,where they go into the brain(this was last on my list of favorites)and place a surgical clip,they kind of slide it over the neck of the aneurysm to seal it off from the blood supply.the other is the coiling,which is a much much less invasive procedure where they go into the femoral artery in the groin(which is where they also would do an angiogram which she will probably need to have to get the best detail of the aneurysm for possible treatment)with these long 'wires" they are made from platnum,and they slowly snake these up to the brain and then into the actual aneurysm and keep doing this until it is pretty much "filled'?these little wires are kind of cool in how they do their thing in there.once the coil enters the aneurysm,they release it and it just starts coiling up inside the aneurysm like a little snake.its similar to what a brillo pad would kind of look like once it is filled up?this 'filling up' actually almost immediately starts creating little clots in the aneurysm wich will eventually just take it out of the blood supply.

i just had my one year follow up angio in nov and my aneurysm looks good and i was told it was 'well assimilated' into the brain now.which means it actually just fades into the background now upon dye being entered into the arterial structures,which in essence means it is out of the arteial structures now and is sealed off.this is what they shoot for so i am happy with that.

but any actual procedure or surgery being able to be done all depends on what type of aneurysm they are dealing with.the aneurysm itself has to have whats called a 'neck'?kind of like a half filled balloon would look?if it is a 'bubble type' these procedures would not realistically be options.it all depends on what they would see on an angio before they could really tell for sure what options she would have.but if she was talked to about possible treatment four years ago,hopefully this aneurysm still has an actual neck left in it.if it gets too big and ends up in that bubble type state,there may not be any options ehre for her but to monitor.this was the scariest part for me as at the beginning,before the angio was done,i was told that mine was not clippable or coilable.but the angio looked a bit different and my interventional radiologist is one of the top ones here in MN.he is the IR other IRs call in to trouble shoot any big vascular problems.so i knew i was in the best hands possible.

you just really need to get her to a neurosurgeon,not a neurologist,a neurosurgeon only,and see what the options are and what it is you are really dealing with here.you also really need to assess her overall status as far as decision making.is she making good well thought out choices for herself?you know what i mean?from what you have mentioned here,i really have some doubts about that,but i don't know her at all.when she was faced with a life or death decision which quite honestly,i do think most people would have gone ahead and done just because of the huge risk factors in not doing so,she failed to follow thru on this becasue she was too scared of the surgery.i was terrified to have this done myself,but i was much much more terrified of the consequences if i left it alone and it ruptured.once a rupture takes place,you are dealing with a whole other ballgame here.

hopefully she will listen to what you have to say and tell her you wouldn't let her do anything that was a bad choice,sometimes we just have to confront our fears as to not do so would cause much worse ones,ya know?hopefully you will be able to get more solid info soon as to what is actually going on up there.i do wish you lots of luck with this and hopefully she will consent if this is found coilable.it isn't as bad as it sounds,really.i had it done on a monday morning and then spent the rest of the day in the ICU,just for monitoring as the first 24 hours certain things can happen if they are going to happen.and was sent home the very next morning.i really was amazed at this,considering what would have been involved with a clipping.The clipping IS a major brain surgery unfortunetly.

please keep me posted,K?if you have any other questions just holler.Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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