Our 17 year old daughter was experiencing headaches starting back in early May. They would come and go with some intensity. Her PCP recommended migraine medication, with no results. This led to her ordering a CT scan. The scan was done on 6/4 and it wasn’t good news. At first they didn’t know what the mass was until another CT scan with contrast was done. It was determined she has a large aneurysm. So we were referred to a neurosurgeon. The initial call with the one recommended was not great as we felt they weren’t taking it seriously enough (obviously very scared) so we got a second opinion. The new team had a televisit that day and explained the situation and was very informative. They ordered and Angiogram to be done on 6/10. Obviously the waiting was horrendous for her, and our, mental health. She woke up on 6/9 feeling very anxious and vomiting so we called 911. They took her to the hospital to make sure it wasn’t getting worse, we were scared as well. They admitted her since the test was already schedule for the next morning, that was somewhat reassuring. They conducted the Angiogram on the 10th. The news was not good. It was a very large, dissecting aneurysm of the Basilar artery. We thought there would be a course of action for the surgeon but he explained that he had not seen anything like this. His team was going to consult with others across the country to see if anyone has seen this before and what course of treatment they had taken. So, of course, we are now very, very scared. Our main Neurosurgeon came to the room and said that this is a very tough diagnosis. He told us that after the consultations, the best course of action was not to do surgery. He told us because of the size and location that any typical procedures (stent, coiling, or bypass) would be too dangerous. He also told us that this may have been something that she was born with, that grew over time and only came to light because of the headaches. He said that because she is having no other neurological issues, other than the migraines, that we need to treat the migraines for the headache relief and that we should keep a watch on the aneurysm. The other issue he spoke to us about is the fact that her body is trying to repair the tear in the artery by forming clots, which are also scary. So he prescribed a daily aspirin for that. He indicated that there was a less than 3% chance of rupture (not sure where they get these numbers exactly). So we came home last Friday and this is where we are. We have an appointment with a headache specialist in about two weeks and a follow up with the neurosurgeon next week. We did meet with a Neurosurgeon and her team before we left the hospital and they did start her on Atenolol for the migraines, which will also help to keep he BP low. The doctor indicated that many people live with aneurysm’s and that she should live a normal life, except to avoid heavy lifting, and don’t become a marathon runner. It’s all well and good to think that way, but for our daughter, and for us, this is very emotionally mentally taxing. I discovered this site and was hoping there was someone else going through this as well, that could be of help. At this point, we are heavily relying on our faith and lots and lots of prayers for healing. I hope this wasn’t too long and I am sure I missed something. Thanks for listening!
@Jimamymac
I wish I could I could ease your pain in any way, but I can’t. I don’t have the knowledge or experience to do so. I think you will get messages from other members in this group. Hopefully the follow up with the neurosurgeon will give you some hope, it sounds good that they consult with other experts. I just wanted you to know that you and your family are in my thoughts. In this group you will never be alone.
@Jimamymac I am so very sorry you are going through this! I have a son, and there is no worse feeling than when your baby is ill or in pain.
May I ask where you are located? There is a very famous neurosurgeon by the name of Robert Spetzler that used to do a procedure called Hypothermic Cardiac Standstill or sometimes referred to as Suspended Animation. He is now retired (2017) and was at Barrow Brain and Spine in Phoenix, AZ. I am not sure if his successor, Michael Lawton, has experience with this, but Barrow does have a second opinion program that you might want to pursue. Dr. Spetzler clipped my treacherous, thin walled aneurysm in 2016, and I truly believe if it were not for him, it may have ruptured during surgery (50% of this type do).
Your daughter’s aneurysm is in the posterior circulation at the base of her skull. I am going to attach a link to a medical documentary that has one of Spetzler’s cases in it (base of brain aneurysm). Hypothermic Cardiac Standstill was used on the young man in the documentary. It is a little dramatic on the narrating side, but nonetheless, informative. What I have read is that this technique is almost obsolete due to endovascular treatment, but it sounds like that is not an option for your daughter, so this is why I am sharing.
We are glad you have found our community!
Kim
Thank you for your thoughts. Also, thank you for the information. We are in Northwest PA. She is being treated by the Neuro team at UPMC Presbyterian in Pittsburgh. According to many that we have spoken to, this team is one of the best in the country. I will watch the video and ask about this at her next appointment. Thanks again!
@Jimamymac it is not a procedure that many do globally…
Spetzler was actually on the cover of National Geographic. The folks at UPMC will know who he is.
@Jimamymac what agony you and yours must be going through, I couldn’t imagine. You or your daughter can send scans to other surgeons for opinions. I would ask your daughter’s team whom they consulted with so they’re not repeated if you chose this route. I’m in NC and our go to hospitals would be Duke, Chapel Hill and of course the one I go to WFBH. In GA there is Emory. Every state has at least one, I just can’t remember them all. France is also supposed to be very up to date with aneurysm all repair. Japan has the most aneurysms per capita than any other country I read a few times.
As for where the doctors get their statistics, that’s incredibly difficult to define, so ask. From what a quick look on the internet leads me to believe, the type of aneurysm and location your daughter has is very rare. I’m not a medical professional in any sense of the word. If a doctor says something, don’t nod your head in agreement if you don’t understand. Always ask and always be proactive.
It’s reassuring when specialists consult others, in my opinion. The simple fact that a specialist will scratch their head and ask others for help is a great sign. I have also heard UPMC is a top notch hospital. Perhaps the doctors are hoping something new will come about with all the research that continues.
Holding you and yours in my thoughts,
Moltroub
I am so very sorry for what you and your daughter are going through. I had an aneurysm and every day worry about my kids and I’m so sorry this is what you’re going through. I’m sorry I don’t have much advice. I am a native Pittsburgher (although I had my surgery in Vermont). I know Dr. Friedman is on the Brain Aneurysm Foundation board. I’m not sure if he is one of the people you’re in touch with but it seems like he would be a very good connection. We Run With You is an organization run by a woman named Kathy who had an aneurysm which sounds a bit like what your daughter has. You might want to reach out to her although her surgery was in CA. I’m just so sorry and will be thinking of you both!!
My wife had an aneurysm similar to what you described. In 2014 there was testing of the FRED system for large aneurysms. Almost 7 years have passed and apparently the FRED system has been thoroughly tested but I’m not sure if all neurosurgeons use it. I am not an expert in this area but I would suggest you do your own research regarding this technique. If a surgeon is not familiar with it and cannot give you reasons why it would not be useful for your daughter, I would suggest finding a neurosurgeon who can discuss it with you. It was a terrible time for both of us and we got the idea that neurosurgeons are somewhat territorial.
I also live in Pittsburgh and had an aneurysm on my brain stem. Unfortunately mine ruptured when I was 44 yo. They gave me a 1 percent chance to live but the doctors at Allegheny General Hospital saved my life. Dr. Ku performed two surgeries that had never been done before. I am 51 yo now. I cant say enough good things about these doctors at AHN. My aneurysm was considered extremely large and I should not be alive. They weren’t sure if I would walk, talk, eat etc again. I do everything. If you can, visit them. Dr Aziz assisted in my surgeries but he is no longer practicing. Dr. Ku was outstanding.
I am a 36 year survivor of a SAH of a thumbsize aneurism which Ruptured. I was 21.
I didn’t have this group to discuss my ups and downs and medical alternatives and info back then, so you are in the right place…and not alone.
I did learn several things back then though.
- The brain does phenomenal things we know nothing about.
- Youth is king…My right brain reassumed functions of the left brain.
- Get the best neurosurgeon.
- The waiting is the hardest part. Time takes time
- It was harder on my family than it was for me…
- Crying is OK…I always felt better…Then laughed.
stay strong
11 years ago I too had a dissecting aneurysm (can’t remember exactly which artery, but at the base of my skull) but I was unaware of it until it ruptured. Thankfully, I landed at the Cleveland Clinic where they stented it endoscopically. They said it was a risky procedure but there were no alternatives at the time. The care I received at the Cleveland Clinic was phenomenal; I don’t have the adjectives to describe it fully. If there’s any way you can swing it, I highly recommend you come up here for a second opinion (it’s only 2-1/2 hours from you). The doc who performed the stenting is no longer there, but Dr. Rasmussen, in the cerebrovascular center, is my neurosurgeon, who clipped a second aneurysm they found, and installed a shunt some months later. The Clinic’s motto is ‘Patients First’ and that’s truly what they do; they’re extremely thorough and adept at all the latest techniques, and have all the latest equipment. I can’t recommend them enough. Dissecting aneurysms are rare, so be sure you’re talking to someone who has experience with them. It’s a very scary time, I know, and I feel for you! Please keep us posted.
I am so thankful for all of the information that all of you have provided. We have a follow visit with the Neurosurgeon this afternoon. All of this information will be helpful for us to use and also for additional follow up. Will keep everyone posted.
@Jimamymac best of luck to you and please keep us posted!! Sending love and light to you, your daughter, and your family. 
I strongly recommend you do your own research and get second (or more) opinions. The fact anyone said they’ve never seen this before tells me they aren’t well-versed in rare situations. You need a surgeon who is. I visited two and still ended up in AZ with a Barrow surgeon (I live in WA). No one in my state could use the PED (Pipeline Embolization Device) in anything but the carotid artery (my large 23mm annie was in my basilar also). In AZ they could use the PED and had lots of experience with it. That was 9 years ago. It was my only hope with the size and location. It didn’t work exactly as planned but they got it stabilized and I’m doing well. I wish you and your daughter all the best!
@Jimamymac I hope the appointment went well for you and yours yesterday, questions answered and some relief from the stress.
All the best,
Moltroub
Agree 100 percent with what your adivice is. I, too, have one in mid-basilar. Do your own research and find the best neurosurgeon you can for endovascular neurosurgery - Be willing to get on a plane or drive cross-country for a second opinion. Agree that if you dr. has never seen a case like yours, you do not want them handling your case.
HI @Sarah_D,
Felipe Albuquerque is awesome (I read he took care of you) and has taken care of several of my friends as well as my favorite little girl, Chloe, who has a Vein of Galen Malformation (VOGM). Louis Kim trained under Robert Spetzler and is actually in the medical documentary I posted earlier on this thread! He was a chief resident at the time. Spetzler saved my life and will forevermore be my hero. I love my new NS but I do miss “Spetz”. 
Hi Jimamymac,
I know that feeling… I was diagnosed with an ACOM and they keep telling me it is better to watch it… they think is more dangerous to operate than to do watch it. It is a battle of everyday. my good vibes to you and you do have some support here. since I started in this group I have been feeling very supported. also I feel that I am not the only one dealing with this difficult situation. I do get headaches, and dizziness, but I do alot of medication that helps. I hope this helps. You are not alone!!
Dr Albuquerque was amazing! Still love Dr Kim too. Thanks for sharing about them!
Hi, I am from Bethlehem, Pennsylvania and six years ago on July 21,I went to a wonderful surgeon up at NYU Langone to perform my surgery-his name is Dr. Howard Riina. I had a pica aneurysm that was misdiagnosed by three neurologist and three neurosurgeons here in the Lehigh Valley. When it was finally diagnosed, I was told it was in a very rare location and my options were limited. I was also told I could just live with it, or have open skull surgery but risk losing my ability to swallow. I inquired about the stent procedure and was told I was not a candidate. I like many others sent my information to Barrows in Arizona, but also up to Dr. Riina. I had a phone consult with him, went up and met with him, and chose him to do my surgery. He was able to place the stent, however it was not without a few complications. But I was able to recover with therapy for about nine months after, and I’m about 95% now. He was the only one that gave me any hope, and I’m so thankful I chose him over my other options!
Best of luck. Keep us posted how things progress.