Re: Newly Diagnosed

Hi All

So thankful this site exists in this new frightening place I find myself.

I am recently diagnosed with a 4cm, right posterior frontal AVM, suspected Grade 3, following a suspected bleed in Dec.

I went to A&E with the worst pain in the entire right side of my head following a work out with my PT, involving heavy weights. Never done weights before in my life until last year. I had been experiencing pressure in my head every time I did the weights (last 5 months) but was reassured by the PT this was normal and she upped the weights every session. If only I had known.

MRI showed signs of “haemorrhage in the right temporal parietal area corresponding with the AVM” but the Neuro said it’s hard to see the difference between the AVM and the bleed so he isn’t sure if I had one. I did have loss of full movement, weakness and stiffness in my left arm for about 4 weeks but thankfully this retuned to normal.

I am still waiting on my Angiogram. However, Neuro thinks my only option will be Gamma.

My main fear, amongst many, is the Angiogram will show things to be worse than the MRI. Has anyone had experience of this? I worry because the right side of my head still feels very uncomfortable with intermittent pain. Not to the extent of the pain that took me to A&E in the first place but not right.

Also, has anyone had success with Gamma on an AVM of such size?

Best wishes to you all

4 Likes

Hi there - I wanted you to know I read your post and am also new on this ride. I’m sorry I don’t have any advice specific to your situation but wanted to extend a hello. It can feel lonely and scary when nobody else in your real life can really relate to what’s going on and the emotions you feel.

1 Like

Welcome. I think you will find several folks here who have had gamma on similar sized AVMs. Mine was in left temporal, was a grade 2 and I had successful gamma knife. I had a bleed in May 2016, gamma in November 2016 and received the final angio February 2019.

The angio will be great to have completed and will give the full picture, and will be able to clarify the options. My angio didn’t show “worse”, it just showed all the details of the vessels involved. I was always nervous about the scans, but put it in perspective that more information is better and allowed me to reach a decision I was comfortable with. Take Care, John.

1 Like

Hi, I wish there was a way to put your mind at ease - but, unfortunately - well, this just happens

We’re about the same age, AVM’s are in different locations, etc.

But, mine just blew in July of 2020 - according to me neurological team, this was one of a few bleeds I have had throughout life - this being the worst

My AVM/dAVF was embolized 100% on the first shot. And, I’ve been doing well - for the most part, anxiety & restlessness are things I still constantly battle. Up until recently, in the last few weeks I’ve definitely felt off.

There are no easy answers, unfortunately

But, try to do your best physically/mentally. Here in the US getting into the hands of quality neuros is quite key - I can’t comment much on how it is where you’re at - our healthcare systems are quite different

Wish u the best!

2 Likes

Hey Kel,
Firstly, welcome to Ben’s Friends.
I can assure you, your fears, they are normal.
This neuro journey can be a very frightening place. It sure has been for me, with every twist and turn adding another level of stress to my pile, but I have to say, that’s pretty much normal. As for the views on the MRI, an MRI can show the differing structures in the brain and can define between cerebral spinal fluid and blood, but when it comes to defining blood flow from a bleed, especially a heavy bleed, this can be much more problematic. This can be why they wish to do the angio, to be able to physically see what is happening within the vessel and the exact location and type of avm.

Depending on the location can depend on the treatment options. I would suggest last thing you want is a craniotomy, where they remove a large piece of skull, to gain access, especially if the offending vessel is deep within the brain matter and not on the surface of the brain. I say this as I have had a craniotomy, and yes, they did deal with the issue. But in doing so the microfine neurocircuitries have been disturbed and unleashed a whole plethora of weird side effects. In my personal opinion, the less invasive the treatment the better and gamma is one of the least invasive options available.

“My main fear, amongst many, is the Angiogram will show things to be worse than the MRI…” I would strongly recommend you ‘try’ not to go down this path. The MRI has shown an issue, a collection of blood, an angio can help distinguish the exact location, type and treatment options. Trying to make any decision whilst only having 1/2 of the information is never a good idea. If you are anything like me, I went down all of the worst case scenarios, my mind was running at warp speed and it wasn’t good. I had to (eventually) accept I had to wait for the medicos. I can be a bit of a control freak and here I had to hand that control over to others and that was HARD. The reality was… I had no choice in the matter.

The ‘Acceptance’ of all of this is not a simple thing, not at all. We know this because we’ve all lived it too, so come talk to us.

Merl from the Modsupport Team

4 Likes

Hello, I had a grade 1 AVM no brain bleed but headaches so bad I had no idea how I could ever live with it. I chose gamma knife 4 mos ago and so far no real issues. I will have an MRI to see how it’s progressing at the 1 year mark. The diagnosis initially takes it’s toll on you emotionally. However the mind is amazing after some time you can live your life and wait to see if radiation works. If you believe in prayer it truly helps so much, connecting with family and friends that you trust. Sometimes I am
Afraid of how it will evolve, but for the most part I am
Enjoying life. I wish the best for your teenager and praying for a long healthy life.

@Kel1 Hello and welcome to the group so glad you found it!

I had my AVM/DAVF about 10 years ago at the age of 43 and prior to that I was working out with heavy weights since I was 16 . I am sorry your PT told you it was normal obviously not.
I am so sorry you had a bleed as well but so glad you got your movement back.

I get your fear about that when you have your angiogram that it might show things to be worse but it is the only true way to see what is really going on with our AVMs.

In my case my angiogram did show mine was worse but still mostly treatable with embolism. I am treated at Stanford by the head of stroke and neuro radiology - And my DAVF looks like a spider with 30 legs and I actually thought maybe I had a spider in my head and was freaking out. The drs were excited cause of course they were telling the students blah blah medical talk how it was more complex and I am like help is that a spider in my head???

The second time I was prepared for my spider DAVF and by some miracle my body had sealed some on its own! The rest we are just watching cause it could paralyze me. I had 5 blood clots in my brain prior to the DAVF and was in a coma and was paralyzed so I still have some weakness but got my movement back.

This group is wonderful and its hard for other people to understand because we look ok. Each person is different I am allergic to the dye so I get really sick post angio and I constantly have pain where my avm/davf is located. My sleep pattern totally is off since my first stroke. I did have a second stroke after my first angio/embolism

I also see the head of pain neuro at Stanford. I am also headed back to Stanford PT because I have had two bad falls in the last month but thats more due to my stroke leg.

Hang in there we are here for you
Hugs from California
Angela

2 Likes

Hi all, I would like to thank each of you for taking time to respond to me, I really appreciate it. Looks like I may be having my Angiogram next week. I worry how I will stay still during the procedure, my body shakes when I am nervous and I do feel very nervous about it all! Best wishes to you all.

3 Likes

I’m not very good with these things either. I am quite “vasovagal” which means I can faint at the most ridiculous things. I had one angiogram where I was fine and one where I went faint part way through. They asked me if was ok, stopped while I felt better and then carried on. The main difference I felt between them was that in the first one, the doc was busy talking to me, keeping me distracted; on the second one the doc simply focussed on what he was doing. It was that lack of distraction for me that left me vulnerable.

Talk to them about how you are. They might give you a slight sedative if it helps you be relaxed.

It’s a perfectly gettable-throughable experience. For me, the only bit that actually hurt was when it is all finished and the doc presses down hard on the wound while it closes. That does hurt but it isn’t something you’ve never done before: it doesn’t hurt any more than someone pressing down hard on a wound. Plus, you’ve had a local anaesthetic in the right place.

The key thing is to talk to them about how you are: what you’re bothered about and I’m sure they will adjust to fit in with getting you through nicely.

2 Likes

When all this stuff happened to me I trembled uncontrollably many times. It’s all so new we are just afraid. It’ll be ok. If I can make it anyone can. The embolizations we’re terrifying but when all said and done not that bad. They put me to sleep. It was just getting to the hospital!! I’m having an angiogram next Friday too. I feel pretty calm. It’s my fourth one. But the other 3 I was asleep. I don’t let myself think about it. I have to have it. I had a craineotomy about 10 weeks ago so I need the angiogram to check to see if they got all the AVM. It’s all hard to go thru. We can help u tho. It’s nice to have u here…

5 Likes

Hi @kel1

Firstly, welcome to the family and sorry to hear about your recent diagnosis… like yourself I had headaches after weight training and after a CT it was discovered I had an AVM on my right frontal lobe… I suffered a bleed 1 month later and had to have surgery to remove it while I was still waiting for my consultation date to discuss my newly found AVM.

Angio’s are actually a good thing as they are the golden standard when dealing with what is there and how big it is etc so I would say get it done and let the medical experts determine the best method in dealing with your particular AVM… as you can appreciate we are all different and I’m sure others here can offer their personal experiences with gamma etc… God bless!

2 Likes

First of all… I would like to welcome you here… your not alone…

My AVM on the left side of in my brain behind my eye is not quite as big as yours but close… I was put on an experamental operation to try and shrink AVM in hard areas… 30th person to have this done 3 years ago here in Canada… my Avm was almost 3.4cm at max but relaxed to 2.8cm after a sezure… the experamental gamma knife operation with doctors going up my gron with cameras into my brain with springs and glue if needed… this all sounds soo scary when its first put before you… and i know there was no convincing me anyone knew anything happening to me…but i found this site…I was wrong… i might not say much on here… but it helped me huge… my last MRI showed the gamma knife shrunk my AVM down to 1.8cm i use to have sezures every couple weeks then every month… now im around every 8 months… they just extended the exparement on me for another 3 years to help dictors learn the best way help people like us… I came here for support today… as I am confused… but reading others and us all trying to help eachother removes abit of that stress… even if your quiet like me… will help… strength i send you and your family… you got this… even tho you might not think so now… in time it gets better…

John Paul
Canada

1 Like

Hi Debbie

Thanks for responding to me, much appreciated.
Did your Angiogram show they got all of your AVM?
I hope so.

Best wishes

Hi Bishop

Many thanks for your welcome message.

I am so pleased your treatment is working and the AVM is shrinking. Hopefully within the next 3 years it will be obliterated.

Wish you the very best outcome on this difficult journey.

Best wishes

Hi Adrian

Thanks for your welcome message.

I am sorry you suffered a bleed. I hope you have made a good recovery. Great news your AVM was successfully removed, so happy for you and all your loved ones.

Do you think the weights contributed to your bleed?
I think weight training/straining is a big factor in causing bleeds/ruptures. This is my worry. Although I haven’t done this now since December, I can’t help but think the 6 months I did it for, the intense feelings I had in my head during these sessions with the final terrible head pain in December can only be of detriment to my AVM. It’s got to have weakened it surely, and now I have to hope it holds out for 4 years for my Gamma to work!!!

Best wishes