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AVM Survivors Network

The Process of Diagnosis Takes a Long Time


#1

Hi, I’m Richard and I’m just getting told I’ve got an AVM. I’ve had headaches for years and last September asked my doc if I had wax in my ears cos my hearing seemed a bit dull, and when I laid down at night could kind of hear my heartbeat. No wax, so we parked any other concerns.

Over the winter, the “heartbeat” got louder and I started checking out articles on the Internet. Some were very unhelpful-- mostly people being told by their docs that there was nothing to do. Then I discovered pulsatile tinnitus and avms and fistulae and went straight to the doc. That was April. The doc referred me to ENT and my ENT consultant had a fascinating day when I was his last patient but also his “most interesting patient of the day” he was really animated and we had a good chat. “You’ve got a bruit” and “its an AVM” I didn’t flinch at either word, which we talked about too. Now I’m up for my first MRI on Monday.*

It’s really helpful to read people’s stories on this site, and most, if not all that I have read are people who’ve discovered their avm when it attacked. I’m in the pre-attack stage but nonetheless concerned about what this is all about and what might come.

I’ve read some very brave stories on here. This is a pretty hardy community of people. You should all be very proud.

If there are others in the site who started their avm journey not with an “attack” do share your experience please.

  • Note, I saw the ENT consultant about a month ago and he said he was going to refer me for an “urgent MRI”. It has taken a month and some chasing just to get to today.

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Unruptured AVM near cerebellum-pons-brain stem
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#2

Hi DickD,

I’m a fellow pre-attack AVM survivor. Since there were changes to this website all my profile info was lost. I won’t bore you with most of it now though. If you like I will another time.

My AVM was asymptomatic and discovered after a head-on collision. Going from 50 mph to 0 in a nano second, my face was smashed into the steering wheel and completely torn open from my right eye to the top of my head. Big mess! Head & brain trauma resulted. It was no fun at all. Once I was up and around I had a battery of tests. An MRI was performed. If you’re claustrophobic, you won’t like MRI’s. I’m not. But if you are you’re given a mild sedative to get you through.

The first doctors who reviewed the MRI images said all is fine and dandy. I wanted a second opinion for no other reason than piece of mind. I got one at Barrows Neurological Institute here in Phoenix, Arizona in the southwestern part of the U.S. They called me the next morning. The trajectory of my life was forever changed, just as yours and everyone else’s here, was.

An angiogram was ordered. Not knowing what the hell that is I went about it casually. I don’t know about now, but back then angiograms were excruciatingly painful. It confirmed the AVM in my posterior medial right parietal lobe. At the time I had been competing in Triathlons for five years and just qualified for the Ironman in Hawaii. My doctor, a cyclist, said I was lucky to have found it. It could have hemorrhaged during the open water swims and I would have sank. Or, worse, when driving and possibly injuring or killing others. It seemed there was much more bad news than good. Turns out I was wrong.

And in my ignorance and naïveté regarding matters of brain AVM’s, I’m honestly thinking, and said to my doctor, “it must be some pricey medicine to get rid of this thing, right?” Surgery never entered my mind. He responded, laughing a bit, “no, we have to go in and remove it.”

This was Fall of 1992. I was in my early 30s. Not much scares me. The prospect of brain surgery did, like I’ve never been scared before nor since. My surgeon put things in perspective though. He said, “this thing will hemorrhage one day. And if happens in your 70’s-80’s-90’s, you will wish you had surgery when you were young.” He continued and said “the long-term risks of doing nothing are far-and-away greater than the short term risks of surgery now.” I was much younger, in top physical condition, and overall in very good health. So it made perfect sense.

I had the surgery June of 1993. It sucked! And yours will too. Though the doctors said I should expect to be in the hospital a week or two, then rehab after for maybe a few weeks, that didn’t happen for me. I went under the knife early on a Thursday morning, woke up Saturday with what felt like the the combination of the worst hangover, headache, body aches, soreness, swelling, dizziness, vertigo X 1,000. But I went home Sunday! Only four days in the hospital. I was extraordinarily fortunate.

At the time my mother worked at this hospital in the records department and as a translator, for years after. She told me my “chart” was used often for the neurosurgical residents as a learning tool. Someone with my type of AVM at my age and in my physical condition, can heal quickly and get back to my former life.

Sadly my racing days ended primarily due to the neck injury from the initial accident. And it took nearly two years to fully recover from the surgery. But I have no permanent deficits other than a very slight “weakness” on my left side. By weakness I mean I got back roughly 97% of all my faculties on my left side. To better describe it, I write left-handed and I’m a drummer, and can only feel the 3% deficit when I write or play. Other than those, all is well.

Also, because I’m an active outdoors type, being much less active than before the accident and surgery was torture. But you learn to make adjustments. I went from Triathlons to mountain biking, rock climbing, hiking, and just about anything outdoors.

Just remember that recovery is like ten marathons, not a 100 meter sprint. And even though medical technologies and surgeons were very advanced back in 1993, they’re even better now!

Take comfort knowing there is good health and long active life after AVM. You’ll find thousands of us here to prove it.

Fear not DickD, you’re going to be just fine.

I believe there’s a chat feature here too. So whatever your preference. Feel free to reach out.

Hope this helps

p.s. the absolute worst part of the hospital portion of this ordeal, for me, was the foley catheter. It’s for your bladder. And I’ll just add, it doesn’t go through your ear :sweat_smile:


Brain Dural AV Fistula
This web site always give us negative posts (Especially for gamma knife)
#3

Thanks Bill,

I needed to hear that. I had a convo with a Doc recently and they were emphasizing the 1 yr mark as a key reference point in terms of recovery. I know about neuroplasticity, but he was less clear about that.
I have no problem with having to run a marathon to achieve a goal, but not knowing if you’re at the beginning, middle, or end of the marathon is complicated.


#4

Hi Dick. I’m Lulu and I’m in the UK. I have a large AVM of the Cerebellum and didn’t present with a bleed either. When I was 12 I started to get headaches which my doctor said were migraines. By 14 they were really painful and I had a CT scan. At the time all they could see was a fluid buildup in my head (ie Hydrocephalus). Roll on 10 years and I was offered an MRI which showed I had an AVM. It covers the normal escape route for CSF and is what causes the Hydrocephalus (which I have had a few times since. I also have a bruit but didn’t realise it wasn’t something everything had until I read about it on this site once!


#5

Hi Bill, Thanks for all your explanation. It helps to encourage me that there are some really good outcomes out there and I’m not alone.

The MRI was fine. I’m not sure what all the fuss is about. In my case, I had a periscope to be able to look straight forwards, yet that was showing me down the top of my body and to the guys in the control area doing the scan. Much less claustrophobic than looking at the inside of a plastic drum.

I’ve got to be patient now and wait for an appointment with the consultant to tell me what it showed. I’m not patient yet. I’ll have to learn.


#6

Hiya Dickd,
I am Amanda and I am also in the U.K. Like you I also found my avm incidentally through having a bruit back in October 2014. I was told it was tinnitus nothing you can do but deal with it (lovely).march 2015 I decided to see a different doc who straight away referred me for a MRI. I was diagnosed with my avm April 2015. Everything has moved so fast from then on, mine is a large avm right frontal temporal. In the past 18 months after numerous tests and appointments my nurosurgeon decided against open surgery stating the chances of him disabling or killing me (10%) is higher than the risk of having a bleed (1%) so he said I could leave it alone and monitor it or speak to the gamma knife team at barts hospital. I decided to go with gamma knife for the treatment of my avm which I had in two doses 6 months apart.i am now coming up to the 1 year mark from my first treatment and 4 months from my 2nd dose. I was told in May that it has shrunk by 10% so far!! I can say that so far I haven’t really suffered from any major side affects so I guess I am one of the lucky ones even though I know it is early days that is my story so far.


#7

Hi Amanda, thanks for chipping in. Through last winter I kept Googling people being told “tinnitus, put up with it” it was only when I found a cause myself, as I say, with more sinister undertones that I thought “right! NEED to go and see the doc”.

I completely agree with the need to balance surgical risk with likely improvement / undisturbed risk. It’s at the point those figures start to swap round noticeably that you need to act.

I don’t even know what I’ve got yet but my family history of my grandfather suggests HHT is possible, so that prospect of multiple issues is a concern.

Good luck with the next GK and keep us posted.


#8

Hey all I am new to this site my son has a small avm in brain they plan on doing radiation treatment he goes in for anagram on Thurs and then they decide when the radiation treatment will Begin


#9

Hey Pamm, first welcome to the site. Second, thanks for sharing your story. Third, I hope the angiogram went well. If there’s anything you want to talk about why people in a similar situation, start a thread and talk about what’s going on and what you want to know about. Good luck!


#10

Update on progress… still waiting for an appointment to see the consultant to understand my MRI results but, separately, went to the eye clinic today and the doc has discharged me, which is great! He doesn’t agree with my optician that there is any sign of macular degeneration, and I’m happy with that outcome. One less factor towards possible HHT, which has got to cheer up any Saturday! Best wishes, all!


#11

I am about 7 months ahead of you in this journey in that I got answers January 2016 as to what was causing the bruit I was hearing predominately in my left ear. An angiogram showed 2 duravascular fistulas just above and behind my left ear. Since I had not experienced a bleed and there was normal blood flow I was presented with 2 options; leave things alone, cross my fingers and come back for a follow up in 2 years, or have a gamma knife treatment in an effort to slowly shrink the smaller fistula and embolization of the larger fistula. After much agonizing over the decision, conferring with another neurologist, and getting feedback on this site I decided to take the passive approach. For the most part I have been able to keep my concern at a minimal level and most days I do not think about the what ifs. The draw back is that pesky bruit. It is most noticeable at night, so I use a relaxation technique to calm my heartbeat and can usually slip off to sleep.
Since each situation is slightly different my approach may not be appropriate for you or anyone else, but I share to let folks know there can be options. For now this is the right choice for me. I’ll see what the future holds and make different choices if the situation warrants.
Good luck
Karen


#12

Thanks, Karen. I think waiting it out can be the right thing to do.

It’s kind of interesting to have a bruit. I find I can slow my heart rate down just because I can hear it but it is getting very noisy. It was the growing noise that made me start to check out the Internet all those months ago.

I think I need to know how big or complex a set of shunts or fistulae I’ve got, and decide from there, with expert advice. Thanks for sharing, and the very best of luck with yours!


Now dx as AVF, and angioplasty surgery upcoming
#13

Hello Dick thanks for accepting me and listening to me.OMG this has been very stressful i feel i have been taking on all my son’s responsbility due to the fact of his AVM and other issues he has had a seizure last yr on meds for that. HE worked for a call center but his last day of work was Sept 1 he has used up all of his FMLA time and is due to return to work on Oct 3 but mentally he isnt able to. They will do the radiation treatment on Oct 4th, has a behavioral health intake on the 5th and a cardiologist appt on the 6th of october. I am on disability for bi polar and stressful situations really arent good for me. I am in process of findin a new psych but problem is a lot of doctors are not takin on new patients or my insuracne found one have an appt on october 3. I have been dealing with my son’s AVM since 2013 when he went to the ER with severe bad headache and was at that time told about the AVM spent a week in ICU then he continued to smoke cigarettes against doctor advice he does smoke pot too.
I Have spent many hours filling out paperwork try to be his representative and getting things done which is taking a toll on me and yet I feel he is helpless when it comes time unless he feels mommy will take care of it all. I have to admit he has made some calls filed for food stamps and our welfare medical got approved for it. I have applied for SSI as well as SSD for him on Sept 5th he only worked one day in Sept 1, 2016. I paid approximately 1300 for him to live and paid his billls due to lack of income i am searching out other organizations to help assist as i have my 2 car payments etc and now having to take on his rent in October which they raised by 25 dollars. He get easily aggitated, cant focus or remember certain things, loss of interest in what he used to do, depressed, doesnt want to be around people, and the list goes on. I know this brain thing can not be easy on any of you all let alone 27 yr old male even more I am having to help him out financially due to i am basically his only parent and i want to be there for my son not have him on the streets. I am doing everything possible but I cant be putting myself in a financial hole or debt to help him out OMG the stress- we fight and cant communicate when i ask for his help like when i spent over 3 hours filling out SS paperwork etc he sat in chair across room and when i asked about employer etc got pissy and said to look on computer i have never worked on 2 computer screens nor do i know where is info is. He gave me the folder of tax info and i had to look thru it - its his lack of helping me out with these issues are frustrating and he feels i have abandonded him and told him that was a crock have always been there for him he uses my grandkids 6&8 saying that i feel for them well for goodness sakes they are kids and i had to call CPS on my daughter for using herion and the paternal grandparents legally adopted them i get them on the weekends. Yes they are VERY IMPORTANT to me as well as him but i told him i dont appreciate being treated like shit or his lack of helping me out as he knows i will not let him on the streets but SSD or SSI will not have an answer for 3- 6 months so therefore now at holiday time etc i have to come up and struggle with trying to get the bills paid luckily i live with BF and he pays the bills i buy groceries etc and other items. I just dont know what more to do or how to handle my son at this point. Yes he finally did stop smoking cigarrettes but now is vaporizing the pot and the first thing he did when we came home from anagram was took a few hits off the bong WTF is he thinkin obviously not as i planned on spending the night with him. I walked to the grocery store to buy a few items for him and his lack of appreciation was like a slap in the face i carried 5 bags of groceries to his apt he came down and got a few and then turned down all i had bought due to them not being healthy or made with genetically items dont know where this is coming from very rude to me and i was exhausted so i drove my 30 miles back home totally exhausted. I am so worried about him and trying to let go i just dont want to see my son dead i have 2 daughters who choose to not talk to me. One the 30 yr old hasnt seen me since she moved away from us in 2008 and no contact the 25 yr old recovering herion addict has a job and is in abusive relationship yet only calls me to borrow 10- 20 dollars or to pay her cell phone bill - I let her have it last month i am thru with her she doesnt see her kids so to say and is still hateful since i called CPS to have the kids removed i spend as much time whenever i can with them they are my life and i enjoy all the time and memories i get to make and experience with them. so with this thanks for listening to me go on and on etc. Any suggestions for financial help for him till and if he gets approved for SSD???. Feel free to post in the group so people can email back as i still new to this and dont check it all the time email is better way for me. What am i to expect after his radiation treatment next week? I had read one girl was really tired due to the seizuere meds and my son lives alone in fact his first seizure last yr happened outside his apt and he didnt he know it happened walked upstairs fell asleep when he awoke saw a text from friend then callled my nephew who took him to hospital then he had 2 more at hospital. so please prepare me thanks from Pamm in az

Pamm


#14

Hey Pamm, I’m sorry! I’ve left it so long to write back. I’m afraid I don’t know the answers to most of your questions, as I live in the UK and as you might imagine we have a very different tax and social structure.

Can I suggest you start a thread on such things in the general posts section or see what conversations you can find that touch upon benefits, etc.


#15

How do start my own thread my son Freaked out today for his radiation treatment and got outta car says don’t understand what is going on inside his brain we had to reschedule am doin all


#16

Pamm. You use the New Topic button within the relevant Forum. See here http://www.avmsurvivors.org/t/getting-started-on-discourse/14832

Click on the Forums tab at the top, choose what appears to be the best / most relevant Category, listed down the left hand side of that page then you should find a New Topic button within that category.

Very best wishes to you and your son. None of this is easy, I’m sure he won’t 100% accept what is happening to him, and depending on what effects his impairment has, may really struggle. But we’re in a supportive community here and if you ask as best you can for help, I hope there’ll be a few people who have been through similar stuff and can lend an ear or some practical help, ideas or support.


#17

Update on progress… finally got to talk to the consultant’s PA this afternoon. She now gets what an AVM is about and is raising hell for me.

Interestingly, when my MRI appointment finally got made, I got very stressed on the day of the appointment, up to an hour or two before the appointment, when I started to feel OK about it. Having got the PA moving my case forwards this afternoon, I’ve gone back into stress again… :worried:


#18

Couple of updates… consultant’secretary failed to ring today, 2 months after seeing him, so gotta chase her tomorrow.

Had some very tiny headache lines in my head last night, like little bits of lightning going off in my head, like a little electric shock back of head and on top of my head. Can also feel a strong pulse on the back of my head.

Great support from you guys, though! :heart:

DickD


Unruptured AVM near cerebellum-pons-brain stem
#19

Today’s update… chased my MRI on Wed and it had still not been reported on by the radiographer. Made an official complaint about 11am; had a phone call from the hospital at 2:30 from the consultant’s secretary to say she had my MRI. (Surprise, surprise!)

Appointment today set for early Nov to understand next steps.

This is slow going! I’m sure consistent with others’ experience. It’s good to have this site to understand about AVMS and chat with you guys to wade through all this. Many thanks.


#20

So sorry to hear about the obstacle course you are running: it’s hard enough, dealing with a serious medical issue without having to chase and remind people of what they ought to be doing. It is great, though, isn’t it to have others who have experienced some of what is happening to you now.

All the best to you

Seenie from Moderator Support