Quantcast

AVM Survivors Network

Me and my AVM would like to say hello!

#1

Hi, my name is Patrick, and this is my story.
Exactly one month ago I had a bleeding of a cerebellar AVM while I was skiing. I am a pediatric neurologist and realized within seconds that the thunderclap headache, nausea and pain in the neck that I had were caused by an arachnoidal bleeding, and I was able to tell this to my teenage kids who were with me. I had a quick transfer to a top neurosurgical center, and had resection of the dural arteriovenous fistula the next day.
Today I am doing very well. I still have mild headache and meningism, my vision is not yet perfect, and still have some nausea. But I’m not complaining, and I realize that I was and am very lucky.
The fact that I am a pediatric neurologist helped in quickly recognizing the symptoms of the bleeding, and thus maybe influenced my outcome a bit. Nevertheless I have a big frustration that I never realized I had an AVM before it bled. I only had few bad headaches in my life, and I never had other “classical” symptoms of a cerebellar AVM. Though in the recent years I had some other symptoms that, in retrospect, could be related to the AVM, like pain in the neck and a full feeling in my ear at the side of the malformation.
Not a lot is known about early presenting symptoms of cerebellar AVM, and most of “us” present with bleeding. However being trough all this motivates me hard to do some research on this topic. I will have to think a bit how to organize this, but all ideas and suggestions are welcome.

9 Likes
#2

Patrick, a very warm welcome to the AVM community. Yes, you are lucky in so many ways, and you are also lucky to have found this wonderful community. AVM is our flagship community: it was founded by “Big Ben” (Ben Munoz) and, yes, his friends. It continues, to this day, to be one of the most active and supportive of our thirty communities. I think you’ll be interested in this.

We’re glad that you found us, even if we are sorry that you’ve come face-to-face with this new challenge in your life. It sounds, though, like you’re really “up” for it. We hope that you’ll be glad that you found us as well.

Seenie from Moderator Support

2 Likes
#3

Patrick!

Hello! It is great to have you with us and I hope we can all learn something from being a community together, though we should remember, I think, that this community is intended to be a peer-to-peer support community, not a research group!! I’m sure some will want to help but for some others, we’ve spent long enough being a medical curiosity, so we should tread carefully.

I have a right occipital dural AVF which I detected due to increasingly loud pulsatile tinnitus. It was embolised last April. I would say I regularly had headaches or neck aches for decades, though I don’t know if one is related to the other. I still have something of the neck aches – which might be too much collaborating on here on a computer tablet! And I think I’ve still got some residual issues with my AVF, including I think fullness of my left ear. I’m going to see the doc again in March.

I don’t think this site has any facilities on it which would help a survey, but we could certainly contribute to the formation of the questions in a survey, which you might then run on a different platform. We may need to check in with Ben as to his comfort about that stage.

For my observations whilst I’ve been a member of this community – about 16 months – I’ve noticed what feels like more than an average number of people push/used to push heavy weights in the gym. I’m sure that straining in one way or another can cause an AVM to become apparent.

So… welcome in. Please join and be part of the community and it may be interesting to gather any key facts regarding AVMs. You’ll notice that we have people with AVMs in almost any part of the body, not just cerebellar AVMs.

Best regards,

Richard

2 Likes
#4

Thank you for the warm welcome.

Of course, my presence here is as a patient. Being reduced from a healthy person to a helpless little creature crawling in the snow in a matter of seconds, was by far the most shocking experience I ever had in my life. The pain I had before and after surgery was so much more intense than I ever thought possible. I never before had fear of dying…

Research should be done in the correct way, both scientifically and ethical, not via a forum. Nevertheless, I’m convinced that a lot of valuable information is present in (the users of) this forum. Information that treating physicians don’t have time for, or are not interested in. Information that could lead to diagnosis before bleeding.
As DickD was suggesting, the formation of questions for a survey could be very interesting, but of course only if this is comfortable for everyone running this forum. All information on how to continue on this is welcome.

Best regards,

Patrick

3 Likes
#5

Hi Patrick. So glad you are recovering relatively well since your bleed. My daughter had a cerebellar AVM rupture Jan. 5, 2017 at age 9 (nearly 10). It came as a complete surprise. Sudden pain while we were driving. Unconscious within 15 minutes and trouble breathing after EMS arrived. Intubated at closest hospital then immediately transferred to peds hospital, CT, surgery to resect all within 2.5 hours of rupture. We’re incredibly fortunate. Surgeon told us next day it’s only because of her youth and speedy medical attention that she survived. Her bleed was apparently massive. ICU 4 weeks, multiple infections, occluded EVD, 2 codes called, tracheostomy and Gtube. She didn’t speak for over 4 months. Didn’t fully emerge from coma for four months. Spent 5 months at inpatient rehab. 8 months in hospital all told. She is doing remarkably well all things considered. We get more and more of her back every day, but managing the physical, cognitive and emotional changes has been very hard for the whole family. Also have a 14 yr old son.

In retrospect we wonder if three things could have been related to the presence of her AVM.

  1. She suffered from strange spells of nausea as frequently as maybe 2-3 times per year from about age 5 on. Typically it would start around 3 or 4 am. Intense abdominal pain and nausea sometimes for hours. When she did vomit it was a very small amount. Then shortly thereafter (an hour or so) she’d feel perfectly fine. No pattern as to when it would occur but did happen twice shortly after flying.

  2. She had never learned to ride a bike despite trying quite hard. ? Vestibular problems, but no other balance issues.

  3. Intense dislike for roller coasters and other big, fast amusement park rides. Only a problem since age 9 because before that she didn’t try a “scary” ride. She actually only ever went on 2 and hated both experiences which were separated by about 4 months.

I’m so glad you want to research these AVMs.

1 Like
#6

Hi Patrick:
Welcome to the AVM-ers network. I’m elated that you want to do research on AVM’s and all that they entail. As a group we are more than willing to support and encourage you, I’m sure we wouldn’t hesitate to answer any questions you may have for us. There is a lot of very good information on this site. No 2 AVM’s are alike, but we all share some things in common. Wishing you all the best.

Sharon D…

#7

Patrick,
Welcome to the group! As a caregiver, and a healthcare worker myself, I think it will be interesting to get your perspective on AVM’s in general and your recovery in particular. Best wishes for a speedy and complete recovery.

1 Like
#8

Hi Patrick, I’m sorry to hear about your AVM, but glad to hear that you are on the mend. I had a similar situation. I had a DAVF bleed 2.5 years ago after running a 10k on July 4th. I had it coiled and so far, so good.

I went to my primary care provider complaining about a whooshing sound in my ear a few months prior to my bleed. In hindsight, I know that was a bruit, and was a warning sign that I had an AVM. The primary care provider shruged it off and said maybe it was tinnitus. I dont hold him at fault- I just understand that PCP’s aren’t trained to notice these things since they are so few and far between.

Second thing I wanted to mention- I am a skier also, and for 10 years prior to my bleed, had been getting terrible altitude sickness every time I went to Colorado. As soon as my AVM was fixed, no more altitude problems at all. I have no clue about why this happened, but just wanted to pass it along.

Good luck to you in a speedy and complete recovery,

Scott

#9

Hello Patrick. Sorry to hear about your AVM but Glad to hear your on the mend. I too had a bleed of the cerebellar AVM in late October 2016. Two weeks prior I had a blocked right ear and by the afternoon I started to go dizzy and my eyesight went blurry. I took myself off to the drs who said I had a middle ear infection and to rest. I was back to work 2 days later. Two weeks on I was coughing quite hard when I had the bleed. I had a massive headache and neck ache. I was also very sick several times. My drs told me it was vertigo so I took myself off to hospital where I was told I had a bleed in the cerebellum and was transferred to Plymouth. I was quite poorly with balance issues and sickness for about 10 days.

I was not operated on due to the location but was referred to Uclh London for Gamma Knife Radiation treatment. I went back to work January 2017 and had my radiation treatment in March 2017.

I am 56 years old and had no symptoms or headaches before, I was totally shocked as I am a fit healthy person. I am due my 1 year mri scan in March and hope it is closing. I feel great, I’m back at the gym and fitter than ever. I feel very lucky and wish you a speedy return to full health.

#10

Thank you for all the reactions. I will try to put all the information in a questionnaire that I will post later for a review.

@AllieG: It seems that your daughter is a big fighter, I hope all the best for her!
Regarding the symptoms you were mentioning, it is interesting that my wife always thought of me as clumsy, and just between us, I think she is right.
The strange spells of nausea are remarkable, especially the timing in the early morning, as this could be related to increased intracranial pressure. Were these spells connected to headache? When it got better, was she still laying in the bed, or sitting (as sitting would decrease the pressure)?

@Bojo: I will be making a presentation of my experience to increase awareness with health care provides. I’ll be happy to come by and tell my story when I am in the neighborhood (just give me a few more months to recover completely first : ).

@Scott: I hope your AVM will never again cause you any trouble. I agree that increasing awareness with PCP is very important, as most of the symptoms (as the bruit) might seem innocent, but in fact this is a clinically easy to recognize symptom of a serious disease.
As the daughter of AllieG, you seemed to have problems related to altitude or decreased air pressure. Could you give some more details as to the nature of this altitude sickness? Was it nausea, vomiting, headache or something else?

@Gillebeen: I’m happy to hear that after such an intensive period you feel completely healthy again.
Do I understand correct that your GP did not recognize you had the bleeding after you had sudden and severe headache and neck ache while coughing? Increasing awareness is really important… When you had the blocked right ear, did you have any pain moving your neck or opening your mouth? Did the GP look in the ear and see the middle ear infection?
I had several episodes of a full ear, as I remember always starting at night. Several doctors looked in my ears, and never anyone saw any sign of infection.

Apart from the full ear and the neck ache (that I though was caused by my completely unhealthy working position), I had a few other things before I had the bleed. I had at least one episode with severe headache, nausea, neck ache and vomiting. It got better after a few hours, and the next day was completely gone. However when I had my bleed, I clearly recognized the character of that pain, only at that time it was at least 20 times worse.
On my body I have multiple small vascular malformations, cherry angioma as they are called. It’s a familial thing. Typically these are regarded as benign, but it would be interesting to know if somebody else has these.

Thank you for all the comments. I have good hopes that we can close some gaps in the medical knowledge with the help of this community. I know I asked some questions, and of course there is no obligation to answer these if you would feel uncomfortable about that.

All the best for everybody.

Patrick

#11

Patrick! I can see your analytical skills coming out here! All reads good!

One other thought that occurs to me about my AVM is that it was initially detected (by me) as pulsatile tinnitus but when I saw my PCP, she asked if I could hear it in both ears. I answered “yes” actually, and I think she took that as tinnitus rather than pulsatile tinnitus as she said she was less worried by my hearing it in both ears than in just the one.

However, when I was referred to an ENT consultant, he used a stethoscope to plot for a bruit over my head and found the bruit in the right occipital area. He ordered an MRI which, as well as DAVF right occip., indicated diminution or thrombus in my right transverse sinus. Thus, I think the pulse was sounding into both TVSs, driven partly by the constriction.

I took 4 months to be seen by the ENT as a result of a less urgent initial referral.

…mentioned in case useful.

Richard

#12

Hi and welcome,
I had a cerebellum avm that bleed last May. My brain stem herniated they told my husband that they had little hope for me. I proved them wrong. I have primary progressive ms. I don’t know what might be from the ms and what might be from the avm.
I’ve always gotten car sick even when driving.
I’ve never been able to do most rides in an amusement park.
I’ve never had spacial awareness.
My sences have always been hyper.
Looking back it makes sense because of were my avm was located.
They did surgery to remove the rest of it because they said that they couldn’t do more damage than was already done.
They have no idea why I’ve recovered to where I am but I’m relearning what I can. My dominate side has even switched. I’m now left handed, even my dominate eye switched which is hard on me because I had surgery and have implants that make me have mono vision, now the wrong eyes are trying to see the wrong thing.
They also said that they were amazed I survived having 3 children with how big my avm was.
If you want any info feel free to contact me.
I’d like to donate my body to science after I die but I’m not healthy enough. That doesn’t make sense to me.

#13

Hi Patrick I have an unruptured AVM near my Cerebellopontine angle. For 2-3 months at a time a couple times a year, I’d have sudden sharp pains at the top of my head folliwed then an electrical shock traveling down across my right eye to my upper cheek.

This is thought to be due to my AVM being wrapped around my 5th nerve. It would trigger involuntarily, but also when I shampooed my hair or even by touching my upper lip with my finger. It was weird.

Anyway prior to diagnosis with an MRI and Angiogram my PCP felt it was only trigeminal neuralgia and have me a carbamezipine prescription. I chose pain over a cloudy brain and did not take the prescription. 3-4 years later I discovered I had an AVM. I had gamma knife 13 months ago and it appears to be shrinking.

#14

Hi Patrick
I have those cherry angioma’s as well, I did wonder whether they were some sort of vascular problem but I haven’t delved into it. I hope your recovery is going well.

#15

Sounds like a MIRACLE to me, Patrick!

#16

The hole in my head 'n I greet you! I am celebrating 29 yrs 'n 3 days since my 2nd 'n last deep brain AVM’s bleed! Mine was located in the Hypothalamus, and was successfully treated in Stockholm, Sweden with Gamman knife steriotactic radiosurgery. I suffered a temporary left sided paralysis which still haunts me in the form of Dystonia in my left hand 'n foot. I am continuing to receive Botox injections into both offending limbs! But I am eternally grateful that I am able to walk, albeit uncomfortably. I was treated for petit mal epilepsy for years by a Neurologist in Johannesburg, South Africa where I’m from originally (now living in Wales, UK). He did a contrast CT scan & after my first of 2 bleeds my mom took the original scans to my Neurosurgeon who confirmed it was visible on the original scan by the Neurologist said “Only if you know to look for it!”
Because of the sheer size of my AVM I was unable to receive the full 30 min dose of gamma knife but only 10 mins 'n personally believe it was thru sheer faith 'n prayer that my AVM was eradicated!! I was pronounced AVM free in 1996, first bleed was Sept '89, then the “biggy” in Jan '90.
I had an MRI done in 2003 'n the Neurology team in England told me the space the AVM had occupied was now empty! This is why I call it the hole in my head! lol I used to devour thick Stephen King novels b4 my bleeds 'n despite specs I find it difficult to concentrate on reading for long periods of time! My eyes did the opposite of squint 'n one of my eyes still likes to go “walkabout”! lol

I hope your symptoms fade away to a distant memory in years to come.

All the best with your research.

Cheryl - AVM survivor in Pembrokeshire, Wales, UK

2 Likes
#17

Hi Cheryl,
I find it fascinating that you have been diagnosed with a form of dystonia as well. I developed cervical dystonia, and through some testing, my primary care dr found out that I had an avm in my brain stem. I’m curious to know how many other people have been diagnosed with a dystonia of some sort, and who have an avm :thinking:? Perhaps we are in the minority?
PS- Does anyone know how Partrick is doing?

#18

I was the one who realised I had dystonia after watching a programme years ago on tv here in UK about a guy with dystonia in his neck. Sadly he could not get botox treatment as it works better on localised parts of the body, like my left hand 'n foot. I pushed to see a neurologist to confirm my diagnosis 'n it’s how I managed to get on disability benefits! I’m off for more Botox on the 7th, thankfully. It’s fascinating to me that I can use my left hand to type, without lookign at the keyboard without it seizing up…but can’t hold a mug in it! :frowning:

#19

Chester, PatrickV should automatically get a copy of the new posts on this thread (as should you). This system also allows us to tag a member by using @PatrickV. So now, theoretically, he should get an extra notification, assuming he hasn’t changed his preferences from the default.

Seenie

#20

2 phase of coil embolization has been done. But still AVM continues. After the 2nd phase of embolization(july 2017) I have not consulted the doctor. I did not take any medicine. I need help

Something else: looking for ayurvedic treatment