Hi everyone I found this site today and it has been great reading everyones success stories. My daughters bleed was 15 months ago, she is amazing and doing great. I’m very confused about the follow up procedure. I asked my daughters neurologist to do another test on her to make sure she healed well and to ensure me she had no other week vesals as they said she must have been born with the one that bursted. Her neurologist said that a test would not be necessary and if she had did one a week before her bleed they would not have detected it. I’m terrified this may happen again I know how lucky I am that she survived. Why is she finished? Why are they not following up? I would think she would have a follow up at lest annually! Thank you, scared and confused
Blessings to you and your daughter, what an awful time you have had and I totally understand your anxiety, I would be exactly the same, I think like you that your daughter ought to have at least an annual check, and I don't know what he means that he would not be able to detect it, I had a burst aneurysm last February and they have been monitoring a second aneurysm by MRI which is to be coiled in May, was your daughter coiled or clipped that may make a difference but I think you should change your neurologist or at the very least get a second opinion.
Healing hugs and blessings to you both, Jill xxxxxxxx
She was clipped and had a check up every 3 months with neurology but the only did an EEG. When I asked for a MRI she said not to worry she had no other weak vessels at the time of surgery and she has the same chance of any “normal” person to have another one. That she was not at a higher risk because she already had one. But from reading others stories I see that many had a reacurance. I think I need to see another doctor. This frightens me very much she was lucky to have survived on rupture.
Hi Angela...I agree with Jim...I would want more of an explanation from Doctor and if not...perhaps a 2nd opinion...~ Cyber~prayers your way...Colleen
Thank you I have been calling all the best hospitals in manhattan today. I’m going to get her a second opinion., I needs a second opinion it does not make sence to me and I need to be at piece. Not taking any chances with her.
Hi Angela,
What a miraculous story! I give thanks to God that your daughter's treatment and recovery has gone so well. However, your anxiety over the doctor's casualness about your daughter's health is well understood. It's likely that the doctor does not have much experience with pediatric aneurysms but that is no excuse. I echo the recommendations of the others who have suggested getting a second opinion and some plain English explanations.
I had an aneurysm rupture when I was 19. The aneurysm that ruptured was described as a berry aneurysm and was thought to be congenital. There was a second aneurysm present at the time but it has not been operated on.
I had a miraculous recovery from the surgery and have had few problems since. However, I did develop two additional aneurysms that we have known about for 35 years. With the support of my doctors, I have elected not to have any treatment of these 3 aneurysms especially since for the first 20+ years, the only option was clipping.
Jeff Moore is a BAF member who's son was 9 years old when his aneurysm ruptured. Please look up his page on this site. As parents of children who have had aneurysms rupture, you're bound to have a lot more in common with each other than with some of us more mature folks. :-) I trust that Jeff will be willing to share with his experience and how he and his family are dealing with concerns similar to those you have expressed.
My God bless you and your family.
Carole
Thank you for your response, I just keep learning more and more and get very inspired by all the success stories. However the more I learn the more afraid I’m getting that she may develop more, feer in some sence is good it’s better than not knowing and ignoring the situation. I’m definitly going to find another Dr. And fight for my child. I myself am a service coordinator for people with developmental disabilities for 18 years but when it’s your child it’s different. I know that Jesus holds my daughter close as the holy spirit spoke to me through her the day of her ruptur telling me she was not leaving me. God is good and will show me the right path. May God continue to bless you and your family.
Hi Angela and welcome...you, your daughter, your family have been blessed...
How was your daughter's healing time, return to school, and normal activities?
Please know/note, I have no expertise...I am a survivor of coiling...and, will leave that here.
Pease ask the neuros why they are not doing more testing; ask if it relates to the level of radiation in whichever various scans (c)would be used (angios, CTA, MRAs). There is always more concern for children than adults for drugs, radiation, whatever w/their tiny growing bodies. It seems like, suggests, that a f/up would have been done after the surgery or before discharge to qualify status. And, ask when one will be done; i.e. 3, 5,10 years.
The constant three month f/ups, and your daughter's recovery, suggests her status has been well monitored from the intial treatment.
If the neuros have not viewed the pre and post treatment images to explain the location and the treatment success to you, ask them to. Also, if you do not have a card-to-carry; ask them for one, or similar, so that you always have a list in case of any future need from accident, injury, or illness...those things we also do not like to imagine, that can occur.
You can also secure her records, including CD/DVD of the angiograms/any other scans.
There was a group of Parents here; pray they are still active and you will have contact w/them.
Prayers you will get the answers and comfort that will be right for you,
Pat
Oh Angela,
I am sooo sorry that your young daughter as well as you had to go through this. My opinion is if you feel that YOU need a second opinion then you should get one as soon as possible!!! We all know first hand that knowledge is being prepared...My heart goes out to your daughter & you...Do everything you feel is best for her!
xx
Kimberley
I wish you and your daughter well. It is a terrible thing to have had and it doesn't seem right if it (specially one rupturing) happens to someone as young as your daughter. If you have all these questions unanswered from her neurologist/doctor/IR, maybe get a second opinion and see if what they say match your current physicians if only for your peace of mind. May I ask how big your daughter's aneurysm was and does your family have a history of aneurysms? I am no expert but from my readings annies clipped are more "final" and lasting than coiling, etc and hence follow-up is not as often. Once again, just for reassurance, please get a second opinion. I would be worried too if I were in the same position. I am worried now that having had an aneurysm, my kids might have inherited this weakness in the blood vessel. So you are feeling what comes natural to a mother - scared of the unknown. All the best to you and your daughter. My prayers goes out to you both...
Hi cris thank you for your support and the link I am definitly going to have a second opinion and this time I will be very prepared with a bunch of questions. Her sergion said she had a 6mm bleed not sure if that ment the size of her Annie didn’t know anything about size till I came across this site a couple days ago. He also said the clip was not going anywhere his actual words were it will be there long after she is. There seem to be a history of problems on her dads side, her grandmother passed away in her 50’s from a stroke (not a brain stroke) and her great grandfather and great uncle had died from brain cancer. My daughters Annie was sent out to pathology to rule out a tumor and thank God it came back negative. She is amazing and has very little deficiencies since her rupture. She does reciece speach, physical therapy and occupational therapy but I think that will end soon as well as she is really not in the need for it anymore. Of corse I will take these devices for as long as they are offered to her. The hospital did say that her father and I both should get checked and nether of us have yet. All our time and energy was used on her with no concerns to ourselves however that will be done soon as well.
Hi Angela,
Yes, one step at a time. I read all things I needed to read before my procedure so in a way I was not totally in the dark about it. All these happened to you without warning so things get clearer and clearer as you go along. Very good idea to arm yourself with questions when you go to the (new) doctor. Anything that worries you, make sure you ask. Your daughter survived and from the sound of it, she is heading in the right direction then you can start thinking about having yourselves checked. You didn't mention if you have other children. If so, they should also be checked. Like I said, one step at a time. Things do get better. All the best.
Angela,
I'm so sorry you had to join this sight, but glad you found us. I was lucky - both of mine were unruptured. Clipping is considered permanent - I heard they used to say you never have to get follow up for those, but I think that is changing. If your daughter did not have a complete MRA after the clipping, I definitely would demand that to make sure there aren't any others. I am glad you are looking for a 2nd opinion - I find it strange that the neurologist said they would not have detected her annie prior to the bleed. Has she also seen her neurosurgeon?
Let us know how it goes - I am so glad your daughter is recovering well - I can't imagine the scare ya'll went through. I took my daughter to 4 different neurologists trying to get an answer and treatment for her horrible migraines when she was a teenager and it took almost 2 years and going for a 2 hour drive to a major hospital in Boston before we finally got an answer. Sometimes it just takes perseverance as a parent to find just the right doctor and I know the frustration (and doubly for you since it could be life threatening).
My prayers to your daughter and her loving parents,
Sherri
She is my only child and her father and I are going to be checked. It runs in his family but I’ll be checked as well.
Her neurosurgeon also told me it was permanent but I want her checked anyway. Not taking any chances. Not having a MRA after surgery does not make sense to me.
I had a pipeline stent but had my actual follow-up MRA was 3 months after my procedure. I also had mini-strokes a few days after my procedure so a CT scan was done immediately (which showed I did have a stroke) and so they can check if the annie is doing fine which it was. I may be wrong but maybe the surgery itself will have given the doctors a clear picture of what is happening in her brain and maybe they do not want it disturbed so soon. They need to tell you though why the non-followup. There are some doctors who just assume we are like them and we know everything and not treat us as human beings - i.e. mothers who are worried and they simply think that you should just trust them and put up with it. On the other side, there are surely a great many of wonderful doctors out there so I hope you find one.
My husband is coming up on a year surviving and has his CAT scan scheduled 2 weeks before his appt. with nero Dr. This seems off to me. My husband had one at 6 months and one coming up and the Dr. said once a yr. for 3 yrs them every 3 years if all is well after that.
Thanks Karen, that makes sense. Not sure if it’s because she is so young but I will find out from a second opinion