Please help I’m so scared
I had another coiling to a second aneurysm in my brain.
After the surgery my surgeon stated I have a residual aneurysm. I assumed I had a third aneurysm but that’s not the case I been doing research and it states that one coiled aneurysm was not occluded correctly. And I decided to contact my neurosurgeon to ask what exactly is this and his nurse states that one of my aneurysms is filling up with blood and they are just going to monitor it for a year
So if it’s filling up can it rupture ? Am I more at risk of dying ?
I’m scared please help any help helps thanks
Please help I’m so scared
Oh, Nettie, I am so sorry they didn’t give you enough information to know what this means. The nurse’s response was inadequate. Size is very important in assessing an aneurysm’s rupture. Many tiny ones are monitored, because the risk of intervention exceeds the risk of monitoring. Given how stressed you are, please make an appointment with a different neurosurgeon, get copies of you records (the hospital is required to give them to you) and a copy of the postop scan that showed the residual problem. The second neurosurgeon will explain what it means and give you an idea of what he/she would do in a case like yours. No one can reassure you that it is nothing to be concerned about without seeing those. Your first surgeon seems to be a poor communicator, which isn’t unusual among surgeons, but it is completely unacceptable that they didn’t thoroughly explain your situation and allow you to get answers to all of your questions.
Thank you so much for your response it means a lot to me yes I am looking for a new neurosurgeon I’ve had the same neurosurgeon since my first aneurysm in 2014 I just feel as if they’re scared to tell me the truth but I do appreciate you and I’m looking for a new neurosurgeon from what I understand is that He is the best in Florida but he’s extremely always busy for me I am concerned I’m very concerned and stressed out not knowing if the ticking time bomb is Going to explode in my brain it’s so scary not knowing the unknown
Sorry that was suppose to say the best neurosurgeon in Florida
I worry about how stressed you are. Some neurosurgeons will consult long distance to look at your records using telemedicine. They do it at UCLA and many other programs, I would guess. Here’s a place to start. http://neurosurgery.ucla.edu/telemedicine . I don’t want to think of you waiting for an appointment with a local surgeon, if it’s a long wait.
All the neurosurgeons I guess are super busy and in rush . I saw mine may be less then for a minute and sometimes I am not sure I saw him they dessapear fast . Before looking for second opinion ( which of course you can always do ) I would ask more information at your first place . Call or come to the office , explain the administrator the situation , that you weren’t given enough information at your last visit , they should provide you reports where you can read more … or may be they can schedule an assistant who will explain more what’s going on .
Thank you so much I actually called my surgeon and his nurse said she will let him know I have many concerns and she states for me to wait patiently and stay off google. But I’m insisting to get it recoiled. ASAP
It sounds like issue is that your NeuroSurgeon did not adequately explain what an residual aneurysm is and that the nurse’s explanation is also inadequate. I have been in the same shoes in my prior consultation post surgery for ruptured aneurysm. The nurse is partially correct in staying off Google. The majority of survivors do not have medical nor Life Science backgrounds. Also, citations or even this forum will skew toward complications/issues. Survivor with no issues will most likely not come to BAFsupport, other online groups, or live support groups. However, you have the right to exercise patient’s rights. I would just tell the nurse that her explanation is not adequate and you want to schedule an appointment with your NeuroSurgeon to explain "what is residual aneurysm as it relates to your case’?, what are the risks of complications or rupture? Does the location matter in the risks for residual aneurysm? What is the size/shape of residual aneurysm? What are the pros/risks of 2nd procedure to recoil? I had something similar where the nurse provided inadequate information. So, I just told her that I would like have an appointment to speak with my doctor directly. I would seek a second opinion only if the NeuroSurgeon office is completely unhelpful as your trust between your NeuroSurgeon and you is very important.
Nettie, I totally agree with gk and your RN. Be patient. You’re already googling it, so I’m not going to say close the barn door as the horse is already out. Remember we are just regular folks in the same community pool. The new year has started for universities and our surgeons are pretty busy with getting caseloads going if they’re at a teaching hospital. My multilobed Aneurysm has issues, it’s been coiled 3 times. I really don’t dwell on it. I don’t want to live a life in fear. Out of sight out of mind. My favorite thing my doctor told me is I can do anything I want, if it gives me a headache, I should chose to stop lol.
Thank you so very much that’s a great way to look at life out of sight out of mind. I am going to try that as well as I scheduled an appointment with my surgeon which they only have availability in Nov my surgeon is busy with many surgeries. I am comfortable with him touching my brain he stated it’s his brain lol. I just feel as if he was to busy to get in to full detail about my residual aneurysm. Which was not fair to me and it has me here on this sight looking for answers which I’m great for everyone’s advise. I can’t no longer live in fear of death I have to focus on living.
From the bottom of my heart thank you and all supporters for helping me with these issues I have.
Thank you so much I actually scheduled an appt which they gave me an appt in Nov. I’m going to write all your questions down which were all great questions plus more so I Can Be ready to ask him-about all my concerns. If I feel no better after this appt I will need help to find another surgeon in Florida where I reside. My family all are worried that this may take me into a deep depression like I did when I first found out I had these aneurysm issues. It’s not fair to them so I have to make sure I ask all the right questions that can bring me peace and a place where I feel comfortable-and not panic or get depressed.
I appreciate all you supporting words once again thank you. May God continue to bless us all.
Good luck. There are lot of breathing techniques to calm anxiety. Walks in nature especially by the ocean is also calming. Hang out with positive people. And always count your blessing. We on this online board are wishing the best outcome for you.
Nettie, I agree with 2Fight! We must continue to find joy in each day. My cousin lives in FL and sends me the most beautiful sunrises or sunsets. Control what is in your ability to control, leave the rest for others. And breathe
Yes Florida has beautiful sunsets and sunrises I have to appreciate what’s in my path and stop worrying so much. Again thank you am. Your support.
Dont mess around… Go to the BEST. Johns Hopkins. My Aneurysm is GONE. Justin Caplan put a stent in. Its gone and the vessel is completely healed.
Nettie, I had a burst back in 2017 as well, in which it was coiled. 3 months later i went back to place a stent in front of 2 other ones I had…since, I have had at least 4 angiograms to monitor. I was told that overtime a coil can get packed (filled with blood) and this was normal and they would just replace it …luckily that hasn’t happened, but this was the importance of the angiogram to closely monitor the annies. I was also told in time a stent could move. I guess it depends on the blood flow in your brain. I am not sure when your burst was or what your follow ups are, but I am hoping the same as mine. The procedure is on one day, and they go through the leg…so its just a few days of recovery (at home) after. My thought is we will always be somewhat “at risk” but with close monitoring, we decrease our chances. If this does not sound similar to what you are going through or what you been told, as others suggested, I would go somewhere else because I can tell you, that although no one looks forward to an angiogram, I AM left assured for many months after each one. Wishing you well.
Oh my thank you
Thank you for sharing your story you are a blessing.
II have two Annie’s coiled neither one has burst and now one of them is being called a residual Annie which to my understanding it’s filling with blood.
Is John Hopkins in Fl?
Did your Annie rupture with having it coiled or prior to the rupture ?
First, all aneurysms are different. I’m replying because I also had a residual aneurysm after my coils compacted. Mine was coiled after a rupture so maybe different from yours. I did the watch and wait on the residual for 4 yrs. After the 3rd yr, I switched to a new neurosurgeon because my initial doctor was also a bad communicator and I just never fully trusted him. My new neurosurgeon recommended treatment and I was given the choice of a stent or clipping. I chose the clipping and had that done almost 2 yrs ago. I chose the clipping because I never felt completely secure during the watch and wait and hated the ongoing follow up scans that stents require any my new doctor recommended clipping as best for my situation. But treatment options depend on many things like location, size, etc. What’s best for one maybe not for another. I highly recommend getting 2nd opinions or even more if needed. You need to do whatever it takes to make you secure with your life so you can get on with living it. I found my peace and I hope you will too. Don’t stop until you feel safe again. And a good doctor will have no objections to 2nd opinions.
I appreciate you so much thank you so much I will look into this as well
Thank you for sharing your concerns of a residual anie. I too have a residual aneurysm and did not know my Dr’s were watching any growth. It is a scary thing to think we may have to go through another surgery, but have faith and know you are not alone! :0) These can form around the aneurysm area but the monitoring is better than never knowing at all. I had 2 coiled anies in 2010 and a clapped anie in 2012 when they saw the residual. It is important to know our bodies and signs so we can make ASAP decisions. Time is key when these little bubbles leak or pop. Take it one day at a time pal! Keeping you in my prayers.