What the heck is going on?

Hey guys,

I can't tell you how relieved/happy I am I found this website. Sorry if this is a long note, very first time I've used this website so not entirely sure what I'm doing ;)

I'm 32 and I live in S.Wales, UK. Almost exactly a year ago, I had what I thought was a stroke. Complete left sided weakness/numbness and speech problems.

I have continued to have these "episodes" over the last 12 months while attending many different hospital appointments for scans and bloods and lord knows what else I've had.

A few weeks ago, my GP called me as she had been following my case closely and told me that I had a right frontal AVM which explained all the different symptoms I was showing. But that is all the information I have had so far.

I was told to look on wikipedia for more information, which I did, and PANICKED.

I have been waiting for about a month now to be referred to the nearest hospital to have a consulation with neurology who, as I understand it, will do more tests and decide what treatment is most suitable for me..finally I have recieved an appointment for the 21st of this month, over a year after the AVM caused obvious symptoms.

My biggest concern is my two children....as a single parent with very little support around me it would be fantastic to know how others have coped, what effects this has had on their lives and really, any advise on what the heck am I supposed to do!!!! :D:D:D

I'm going to keep reading your stories now and hopefully maybe figure out how to respond to few and even meet a few great people too :)

Sarah, welcome to the site. You will find many great people here, rest assured. Once you've gone around the site some and read some of our stories, write down questions you might have. What will probably happen once you meet your neurologist is you'll have an MRI or an MRA. Then possibly an angiogram, which will tell the doctors exactly what they are dealing with. Depending on the location, size, etc. of the AVM they can establish which treatment options are best in your situation. I would recommend seeking more than one opinion. Make sure you find a doctor who is familiar with AVMs and treatments. Ask any questions you might have here on this site. 99% of the time, someone has been through it and can give you some answers. Good luck to you!!

Welcome, Sarah. Sorry to hear about your ongoing difficulties with delayed diagnosis and treatment. Not that it is any consolation, but many of us folks with brain AVMs suffered from various symptoms for months or even years before being diagnosed with an AVM. Unfortunately, most are discovered after dealing with major bleeds, strokes, and other events that take place and cause the AVM to be diagnosed after the fact, rather than before symptoms show themsevels. In my case, I dealt with major symptoms for several months before finally being sent in for an MRI. Even then, there was question as to what was being seen in the MRI. The first neurosurgeon that I saw was able to identify the AVM, but even after multiple MRIs, CT scans, and an angiogram, he was still convinced that the AVM was some malformed capillaries, there was no bleeding, and did not feel that any treatment aside from steroids and "sit and wait" were needed. Five years later and I found myself in the neuro ICU at the local hopital, having another angiogram and multiple neurosurgeons discussing surgery. It wasn't for another 7 months, another angiogram and more MRIs than I can count that I ended up having a craniotomy.

I guess what i am trying to say is that AVMs are still not one of the most common things to be discussed in the medical profession and many surgeons are afraid to touch them. That doesn't mean it can't be done, it just means that you have to find the right surgeon(s), do your homework (this site is a great place to start!) and ask questions of any and everyone you meet here.

My name is TIM,If you have surgery. You will be out of work for 6-9 weeks. You will need support for yor kids. It is hard on them cause they dont understaind. My girl is 13yrs old. Straight A student. her grades droped during my 4 months of surgerys. I also have pics of AVM,surgery and a couple others on wifes page (Christina Chabotte)

Oh wow, thank you all so much for the welcome's and the extra info...I guess you all already know how good it feels to find people in the same position as you, well that's where I'm at right now :D

I'm pretty sure that after next week I'll have more questions than I can possibly type but with a little help I think I'll find my answers.

After reading your comment Tim, I took the step of calling my local Social Services department...they are kind of a taboo for parents considering their usual roles but this time, with little outside help, I think both my children and I are going to need as much support as we can get and so far I've found them to be so helpful.

Thanks again everyone, I really look forward to getting to know as many of you as I can and as I travel through this little hiccup, hopefully I'll be able to give back a bit too :D

Hi Sarah,

Welcome to the site.............

Don't know your situation or how things work across the pond, but it might be time (if you haven't already) to make arrangement for your kids in the unlikely event that things don't work out. Here, if you are diagnosed with an AVM, you are most likely un-insurable for life insurance. So if you have any of that, be sure to hang onto it.

Now for the good news. Mostly likely your team will suggest a treatment option and you will grow to an old age with or without the AVM. As others have said, find an experienced team of DRs, get a 2nd option, and then pick what you think best.

I don't think you mentioned your kids ages, but I would get them involved so they know what's going on with Mommy. Age appropriate descriptions, of course.

We did some individual and family counseling on our journey through the AVM. AVM's are potentially life altering, and everyone around you will be affected. It really helped us and our kids.

My best wishes,

Ron, KS

Hi Sarah!

My avm was discovered 3 months after I gave birth to my daughter. That was about a year ago--so I am not too far removed from the whole experience. A lot depends on your avm--size, location, etc. There are several treatment options. I too panicked when I first got my diagnosis but I had Gamma Knife surgery 8 months ago and I am doing fine and waiting on the results! One of the worst parts was thinking about the future of my kids. But now after treatment I have such hope. Hang in there, listen to your docs, and don't be afraid to ask questions here on the site. It is a great resource since avms are relatively rare. By the way, I have been to Wales, do you live near Cardiff? What a beautiful country!

Rebecca

Hi Sarah,

I'm in the same situation with you. I have a son 12 years old and I'm a single parent too. I'm really afraid of leaving him alone. So, I can understand you well.

As Trish say you should find a neurosurgeon who is good at AVMs and start the treatment as soon as possible.

Then the only thing we do is praying. I believe we will be play with our grandchildren someday.. :)

Take care

Right now they have me at the sit and wait, I am very scared! Next week I am going to have a EMG done and my Aunt, who is a RN is going with me. I got a lot of confusing information like you did and I want answers! Even if that means I have to go out of Amarillo to get them! I am taking a pack of steroids, still have headaches, pain in knee, numbess in toes and foot. Drop things all the time and tremor... alot! Glad to have found this site! THanks!

Jake M said:

Welcome, Sarah. Sorry to hear about your ongoing difficulties with delayed diagnosis and treatment. Not that it is any consolation, but many of us folks with brain AVMs suffered from various symptoms for months or even years before being diagnosed with an AVM. Unfortunately, most are discovered after dealing with major bleeds, strokes, and other events that take place and cause the AVM to be diagnosed after the fact, rather than before symptoms show themsevels. In my case, I dealt with major symptoms for several months before finally being sent in for an MRI. Even then, there was question as to what was being seen in the MRI. The first neurosurgeon that I saw was able to identify the AVM, but even after multiple MRIs, CT scans, and an angiogram, he was still convinced that the AVM was some malformed capillaries, there was no bleeding, and did not feel that any treatment aside from steroids and "sit and wait" were needed. Five years later and I found myself in the neuro ICU at the local hopital, having another angiogram and multiple neurosurgeons discussing surgery. It wasn't for another 7 months, another angiogram and more MRIs than I can count that I ended up having a craniotomy.

I guess what i am trying to say is that AVMs are still not one of the most common things to be discussed in the medical profession and many surgeons are afraid to touch them. That doesn't mean it can't be done, it just means that you have to find the right surgeon(s), do your homework (this site is a great place to start!) and ask questions of any and everyone you meet here.

Hi Sarah~

It is scary to know you have an AVM and have to make a choice on what to do about it. I was not given a choice and in some ways am glad I didn't have to make the choice. I was suffering from a really bad headache one day and the next day I just couldn't take it anymore. I had my 11 year old daughter call 911 and was taken to the hospital. None of which I remember, I had an AVM in my left frontal lobe that ruptured and was bleeding that is why I was suffering from the awful headache the day prior. They had to keep me heavily sedated for a week for the swelling to come down and I had surgery to remove the damaged area and weeks of rehabilitation. I am now as normal as can be. I do get tried easy and can sometimes get a little dizzy but nothing compared to what it was like when I first start physical therapy. I am now back in school and driving and just need to get an exercise routine going and I will be AWESOME. Don't be scared, get as much information as you can and make an educated decision. You want to avoid it rupturing because that could cause more damage. Good luck and let me know if you have any questions.

Stephanie

Hi Sarah,

LOL - I don't know why, but for some reason I didn't see that there were already replies to your post Sarah. So anything I've said has probably already been said, but oh well... ;-)

So glad you've found this site, and also so glad you've finally been diagnosed and are on your way to being able to deal with what has been going on for so long. I know that must be both a relief and yet be throwing a lot of confusion into the mix as well.

You seem to have a very upbeat, positive attitude about learning about your condition and staying positive will help you so much in the long run. It's perfectly natural to be freaked out, especially when we first find out we have these things. I'd be a little concerned about someone who wasn't!

You said your GP made the DX of AVM, but didn't say what, if any, tests were conducted that made her come to this diagnosis. I presume you've had an MRI at least? When you have your appointment with the neurologist s/he will likely want you to have an MRI if you haven't already, and maybe even want another one even if you have. The 'gold standard', or the usually definitive test for diagnosing AVM, the exact location and other information about it is called an angiogram. My guess is that you will have an angiogram at some point - either early on, or at least before any kind of treatment is carried out.

From there, depending on the location, size, etc. of your AVM your neuro doc will decide what, if any, treatment is appropriate for you. Treatment could be resection, which is to surgically remove the AVM, clipping, embolization which is to 'fill' the AVM with a material such as coils, onyx glue, other types of glue, or alcohol (you can ask Shalon abut alcohol embo), or, it may be determined that the AVM isn't treatable, or sometimes the doctors decide it's best to leave it alone for a while, the 'wait and see' approach. Personally, if any treatment option is available, I'm not comfortable with my AVM not being treated at all. But I've had a bleed, too, and I don't want to have another one.

The information you'll be learning regarding AVM can definitely be scary. But if you look at it as if you're arming yourself by having the information you'll be so much better prepared to deal with whatever path this takes you on. This is a rare condition, but fortunately there are many more doctors and hospitals treating this now. Just make sure you're seen by someone who has as much experience in diagnosing and treating AVMs as possible. You may have to do some research to find someone appropriate where you live, and this site is a good place to start. Most likely there will be someone here who can help out with almost any question or situation you may have - after all, we've all been there where you are now, essentially at the beginning, and have had, and will always have, questions ourselves.

I'm sorry I don't really have advice about dealing with this condition and your children, as I don't have any. But there are many folks here who can help with that, I'm sure.

Keep learning, try not to let the information get to you, and know that now that you know what's been causing your problems you're well on your way to being able to have something done about it. Stay positive, lean on us here when you need us, keep coming back and please, let us know how you're doing and what happens with your neuro appt. on the 21st.

Tori