New Diagnosis, Waiting To See Neurosurgeon


If you feel we’ve diverted your “anyone feel the same?!!” thread, I’ll move part of this conversation out once you get some other folk chipping in. Otherwise I hope the things I’m discussing with @Allie007 are helping you, too :+1:t3:

Catch you tomorrow.

Hi @Allie007
Your fear is understandable. The unknown is scary. If I can give you one advice, it would be “stay away from doctor google “. There is so much information that you can find on google, but I am quite sure it won’t calm you down. I have a background in the healthcare system from a country in Europe ( no doctor) and I strongly believe that if something is urgent, you will be offered urgent care. The fact that it took you so long time to get the results is hopefully that it was “put in the non-urgent category” - I hope……
I recently had a follow up appointment with my neurosurgeon. This was six months after my previously ruptured aneurysm was mended for the second time and 12 months after my initial rupture. Both procedures were made with a so called minimal invasive procedure via the artery in the groin. The report I got was that the mending was successful, but I still have 1mm of the aneurysm filling with blood. My neurosurgeon told me not to worry about it, he advised me to live my life as normal as I can and he didn’t think it would need any more treatments in the future. I have come to peace with this.
It’s impossible to control things that are beyond our control. Perhaps you can figure out what kind of support system you have around you and your son. There can be other moments when you need someone to help. A nine year old is a child, but perhaps you can teach him how to get help, in general terms, without making him scared and not mention about this.
I wish you all the best and get back to us and chat whenever you want.
You can read about my story when you tap the “O” circle.


Welcome @Allie007 and @MelissaB! I will give both of you a proper welcome in the new place Mr. Richard so graciously put up for me. I’m really excited about it!

Having to wait for an appointment is nerve wracking and we seem to rush to Dr. Google. I want to echo @oct20, be very careful. Information often contradicts itself or becomes very confusing especially if we don’t understand their language. Stay with reputable sites, I usually stay with places like WebMD or NIH which is the US National Institute of Health. The UK has a similar agency, though I cannot recall the name this am. Canada also has one as does many other countries. Stay with studies that are recently done rather than older studies. In the medical world, knowledge is gained quickly and what held true even five years ago, may be obsolete now.

There are some things I can suggest for y’all’s upcoming appointments - make a list of your questions and go over them with the doctor. Take someone with you who takes good notes or ask if you can record them. They do know we are apprehensive with the unknowing. If you don’t understand what the doctor is saying, for goodness sake, don’t nod you head in agreement, tell the doctor they are speaking over your head. If you’re nodding yes, the doctor will assume you understand. It does no one any good if you get to your car and think or say “what the heck were they saying?”

Most of us haven’t a background in brain parts or functions. I would suggest that you both start there. The Circle of Willis is a good thing to know since most of our issues happen within the Circle of Willis.

I ruptured on a Thursday had my procedure the following morning and my Neurosurgeon was speaking at a seminar for Neurosurgeons in another state over the weekend, so I didn’t meet her properly until Monday. It was quite hilarious as I was trying to get up out of bed to stand at attention. I hadn’t been in the military for several decades. I was also saying “Officer on deck”, my poor RN had a time of it to keep me in the bed. The whole demeanor of NSICU changed when she came through the door. Found out later that she had been an officer in the same branch I was in and had just come from the military hospital I was born in. How’s that for coincidence?

First thing I told my neurosurgeon when she introduced herself and asked how I was doing, my reply was “I think my synapses are not crossing my corpus callosum correctly”. She confirmed my statement and inquired to how I knew. I had a professor who I dearly admired who taught that and “I’d rather have a bottle in front of me than a frontal lobotomy.” Though I had learned an enormous amount about the brain during my undergrad studies, I come nowhere near the knowledge of a neurosurgeon. She is my expert whom I trust completely.

For questions, I had some, BH had some different ones as did family and friends. I put all the questions down, initially I wrote them in a notepad and then started using my phone. We discovered it was easier for my neurosurgeon to be able to read the questions when I handed the phone over but we would have to stop her and say we didn’t know which question she was answering and to do it properly :joy:. We learned to have a copy so we could more easily follow her answers. I also learned BH can’t take a decent note. I’ve been her patient since Nov 2013 and now I send the questions before hand through my portal so she or her NP have more time and the appointment isn’t quite so long. Sometimes one of them will answer before the appointment which can lead to other questions.

Trust your surgeon’s experience and knowledge. They are still taking continuing education courses to keep their license and will have the current knowledge. Their expertise may be different then what some of our members say worked for them. Trust the surgeon’s experience. My veins and arteries are tortuous, it means squiggly, I’m very fortunate that my neurosurgeon is an expert with AVMs so it’s a non issue for her.

You may have members suggest a specific doctor, but that specialist might be in a different state or even country. Remember we become very loyal to the surgeons we see. It is probably not feasible to travel a great distance either because of finances or the pandemic and then the follow ups.

Don’t be surprised if your specialist recommends watching rather than a procedure. I know you want to take that little bugger and have it fixed, but not all aneurysms rupture. Luckily most don’t is what I’ve read. Performing a procedure is based on that specific specialist’s knowledge of what works for them at their hospital. It also has to do with location and type of aneurysm. (There are more than the three you will most likely read about) So those are good questions to ask. Please don’t second guess them because of what you’ve read here or when you do internet searches as I know you will or probably already have.

When doing research, learn to question the statistics. If the website, article or study doesn’t explain how they arrived at their numbers, ignore them would be my advise. A good study will tell you the size of the group and explain how they arrived at their numbers, if whatever you read doesn’t, it’s just a guess and not fact for that article, study, etc. The larger the group being studied, the more significant (or reliable) the theory is for that specific issue. We are rare so that relates to smaller groups. We have to take what we find and understand it may not relate exactly to us, our specialist or the institution at which we are seen.

@Allie007 when we have young children, our concern heightens with all the what if’s. Please make a plan for a carer you trust to watch your son should you have to have a procedure which may mean an overnight stay if they do an angiogram. CTs, MRIs and MRAs become familiar to all of us here and are basically an in and out same day image. Hopefully you have parents, relatives, or dear friend that you trust implicitly with what I see as the most important thing in one’s life after one’s self. I believe @DickD is spot on with teaching him what to do if an emergency should happen. I imagine he is very aware of the stress you’re feeling, young people are much more intelligent and intuitive than big people give credit. They also ah e big ears, so any conversation on the phone or with someone that comes into your home, he is probably hearing. I would suggest he know how to call the emergency services in your area. For the States, it’s 911, but my ignorance for other countries could overflow wikipedia, so I don’t know the emergency services number in your area. Also see if there’s a neighbor he can go to say if the home is on fire. It’s a question I often asked young people when I worked with families…”What do you do if there’s a fire?” The proper answer would be get out of the residence and then call 911 and then mum. You would not believe how many teenagers would say they’d call their mum first with younger children knowing better what they should do. In the States, if a residence has a landline, even if non active, it can still be used to contact emergency services, it’s a Federal requirement here. Again, my ignorance amazes me and I don’t know UK rules. I often assisted families in getting a phone just to plug in the defunct line. We have thrift stores where they can be found for a minimal amount.

Another thing that I would encourage everyone to do is have a will or trust set up. Go see an attorney, is it barrister in the UK? For us older folks, an elder law attorney covers us the best. The only thing I know that’s a certainty from the day we are born, is we don’t live forever. After all, we could get hit by a Mac truck. Which almost happened to us during an ice storm. A will should never be an after thought, we all need one to protect our children, our spouse or significant other, and our investments. Dying intestate (without a will) in the US can be a nightmare. Have a Durable Power of Attorney that can make decisions on your behalf and give a copy to the hospital you will have any procedures. My last update was completed the day of my third procedure. There was a lot of unknowns for that procedure and my attorney was able to get it to the Clerk of Courts and call us whilst en route to the hospital! If something went wrong the hospital had a legal document on who could make decisions that followed my wishes. If I recall correctly, it also lists my wishes on medical issues. I don’t know why people are hesitant in having one, it’s the best way I know of to protect ourselves and our family.

Again welcome @Allie007 and @MelissaB , I look forward to your interaction with our group!


Ooh. I thought I did long posts!!

Full thought dump there! My thoughts are principally that the trouble with Dr Google is that she is very undiscerning and just as apt to diagnose (find you articles) that are relevant as those that are not. Equally, she finds really rare things as readily as the more normal. So she is to be avoided for diagnoses in my view.

We all know actually she diagnosed me perfectly but she has a very worrying way of doing so and if it isn’t helping you, just avoid it.

It was @oct20 who suggested that @Allie007’s son might be perfectly ok at calling for help if it is needed. I agree. I think the only concern I expect you have is that you don’t really want to worry him with all of this. It’s undoubtedly safer for you if you decide you can talk to him about not being well but I completely understand the balance of setting him up to help you but also making sure it doesn’t worry him. I don’t know the right balance there: it’s for you to judge.

One of the things I’ll do today is ask my son how he felt when I was ill. He was older – 13 – at the time. I think that so long as he saw me being ok, he was ok. As an older teenager, I forbid him to look up my condition!! I’m not sure if he did as I asked or not. I have always been open with him but I am also sure I didn’t share my gravest concerns with him.

I’m thoroughly encouraged by @Moltroub saying that not all aneurysms are treated: this is much the same as with AVMs. Sometimes this is the case that the AVM isn’t considered a risk; more often it is that treatment carries risks of big impacts that are almost guaranteed to leave you unwell, so there’s a balance to strike.

However, there are wonderful ways of treating AVMs (and I think aneurysms) via catheter embolisation or pipeline stent types of things which are much less invasive than open surgery and (I think) much less worrying. So I encourage you not to second-guess what might happen, what might need to be done and just wait for the neurosurgeon to see you and talk you through what they can see and what their thoughts are.

As always, hope that something I say helps.


1 Like

“The whole demeanor of NSICU changed when she came through the door”
That’s my experience too . The neurosurgeons and Interventional Neuroradiology doctors are the captains of the ship. When I was laying in my bed waiting for my follow up angiogram, everyone had come to my bed, introduced themselves,asked all the necessary questions, we were ready. When my Neuroradiology doctor had said good morning to me, he used two words. “Let’s go” Wow, things went fast after that. :laughing:

1 Like

Thanks for the great info! I’m a nurse so that’s helpful, but I specialize in oncology so I don’t know anything about the brain, other than the normal functions I learned in school a long time ago. I am prepared, probably expecting, to hear we will be taking the watch and wait approach, however, I can’t imagine going long term with my symptoms. I am hoping someone here has had something similar and can give advice. With this constant headache, eye pressure, and increased tinnitus I can’t focus on anything, I have to medicate to go to sleep no matter how tired I am, and am not enjoying anything. I still have to work (I’m single) but fortunately, I work on the IT side of healthcare now, and it’s from home, so I can take lots of breaks but I’m not getting everything done I need to because I just can’t focus.


With my DAVF getting worse over time, I found sleeping with more pillows stopped my head getting more pressured or more dizzy than lying relatively flat. It’s not the ideal way to sleep but if it helps, it’s worth me mentioning…

1 Like

Maybe the maxillary sinuses can explain some of your symptoms? I’m only speculating. To my knowledge there are not always symptoms of an aneurysm, but I can be wrong. For me personally I had zero symptoms before the morning it ruptured, and when I asked my doctor how long did I have it, he said no one really knows, but it could be decades. I hope you get answers soon.


Hi Melissa, how does it work in the States with you taking sick leave of you needed to?
I’m a supply (substitute) teacher so I basically dont earn any money if I don’t work. I can get sick pay but its only about £92 per week.’re ok today xx

@ Moltroub

Thank you for the welcome and very wise words and much appreciated.
My son knows to call 999 and my mum, but I haven’t told him anything is wrong with me yet, I don’t want to until I get a proper diagnosis. I imagine he’s got an idea something is wrong as he’s been home with me this week with a jippy tum and I’ve been back and forth to the doctors a fair bit this week.
I sorted a will a few years ago xx

1 Like

I don’t know you need to. Maybe all you need to do is have a conversation along the lines of “You’re old enough now for us to help look after each other…” and cover things like the obvious (if I hurt myself…) and the less obvious (can’t stand up, not making sense…) and unlocking the front door. Whatever you can do to improve your comfort that you’d get good attention if you needed it will help you relax a bit.



Thats a heck of a journey you’ve been on.
Chatted with a friend of my dad’s today who is a newly retired GP. He waa trying to play things down and telling me not to worry. Said the anni was incidental and so small it would probably never affect me and just to make sure my BP stays down as thats the only risk I have as I don’t smoke, no one else in the family has one etc.

1 Like


The scans showed my sinuses were normal. It did also show what’s likely a Rathke’s Cleft Cyst on my pituitary, but I’m not seeing where that would cause my symptoms either (but maybe it does).


My job has a good disability plan, but I haven’t been there long enough to qualify for it yet. Soon, though, thankfully.


It does sound like the radiographer who wrote your report “tiny aneurysm…” it’s trying to downplay the aneurysm. I’m not sure it’s to worry about. The bit to understand in my mind is the atherosclerosis, especially whether that is driving the aneurysm.

Thanks for the tip! Laying down doesn’t seem to make mine worse but it gets slightly worse as the day goes on. I’ll try it to see if I get any relief, though!

1 Like


Thank you so much. Did it take long for you to try to be normal? I only found out last week so I’m still scared to do anything. Even though my scan was 6 months ago and I’ve carried on as normal as I didn’t know my results till last week, I’ve been terrified to do anything…go to the shops, go for a walk, even taking a bath.

An AVM pumps arterial pressure blood straight into a vein (which are not made for it) so I was getting inflated veins all over the back of my head once a second, even outside my cranium. I think that is why I found lying down worse – because the veins would inflate more – so it might be different for you if everything is in a stronger, less flexible artery. But hey, worth trying.

I had this letter off the neurosurgeon today…

1 Like

That letter is really quite encouraging. There’s nothing there to suggest you’re in urgent need at all. You should mostly relax and just go through the ultrasound and see what comes from that.



I hope so :crossed_fingers: