Hi !
I am a 53 years old man . I had some symtoms, as whoshing sound , in my right ear for 3 years a go but not any other symptoms.
Then I had to operate my heart and got two mechanical valves in May this year. After heart surgery I started having migrants attacks .
In september my AVM vas diagnosed in left temporo/ occipital lobe.
I have head aches, some days problem with balance.
My AVM is grade 1 and has low pressure.
Is there any connections between heart surgery and getting AVM ? Has anybody experienced such problems ?
What do you take for dizziness ? What do you take for head ache ? Can I just wait and not do any surgery ? What do you take for your anxiety ?
I am very grateful to find this forum. many thanks for your responds .
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Hi Itzo and welcome to the forum.
As far as I know, there is no direct relationship between heart surgery and AVMs. That is, heart surgery should not cause AVMs. From what my doctors have said (and Iām getting treated at Northwestern), they are congenital, meaning while youāre developing in the womb they show up. I myself have had no heart issues so maybe someone else can pitch in their experience. I donāt really get dizzy. I ocassionally get dizzy if I take my go-to headache medicine of choice (since the rest donāt work or make things works) butalbital if I donāt eat any food beforehand, but even that is rare.
It really depends on the case of whether you should do surgery. For example, if you are 73 years old and you have found out that you have an AVM, it might be better just to be under observation, since every year there is a 2-3% chance of rupture and, well, youāve basically lived out a long portion of your life with no issue. Someone like me on the other hand, who is 20, absolutely should do surgery, because the chance for me of rupture and experiencing deficits is nearly guarenteed by the time Iām middle aged. If you ask me, it might be best for you to consider some form of treatment (gamma ray, embo + resection). This is not something that is good to run away from. You still have some years to go and you donāt want to wake up one day and find out it has bled. Youāll be suffering more than if you had just treated the darn thing in the first place. This all said, this is really a topic to discuss with your doctor who can give you a better idea of the grand picture and the characteristics of your AVM (for example, deep ones can only really be treated by gamma ray; surface ones are better for removal). Removal is basically a golden standard. Thereās no way it can come back if it was resected properly (which is basically all the time).
I do not take anything for anxiety. That does not mean I do not get anxious. This worries me a lot sometimes and I am naturally an anxious person. But I have my parents to support me and Iāve gone through all 3 stages of my embolization just fine and Iām sure the same will happen with my resection (even though I am worried about surviving the hospital stay!). A good support system is a must I would say. I would normally suggest talking to a doctor about anxiety medication if youāve tried the regularly said methods, however anxiety medication can sometimes give headaches or other side effects so Iām not entirely sure that would be a good idea with this. Not to mention it could interfere with the AVM in some way as itās a brain medicine and no one knows truly how all the complex parts of the brain interact with each other. You could ask the doctor, but Iām not entirely sure you will get anxiety medication out of it. I personally would not take anxiety medication even if I did need it, due what I just said, so that also affects how I see the situation and what Iāll say to others.
I hope everything goes alright!
Hi Magnolia!
Thank you for your reply. I have done CT, angiographi and MIR since September ( everything takes such a time in Sweden) and I am stil waiting for my neurosurgens to give me a answer about what the therapy will be.
Besides dizziness and head aches , the waiting is killing me the docs are so slow here.
I work 100% as a dentist. I feel much better when I am at work but evenings is like a nightmare. I feel that I have difficulty to think , I have head ache in the back of the head and I feel groggy.
My fear is that I can get disability which can make me not be able to work.
Anyway it was nice to talk with someone and I pray for you And I am sure that youe will make it. You are so young and strong.
Best regards
Itzo
Hej Itzo! Iāve got pulsatile tinnitus like you, and dizziness and headaches. My avm is in my right occipital. @wales had an issue with her heart, which she believes is linked. See her story here Brain Dural AV Fistula
My story is here The Process of Diagnosis Takes a Long Time.
Iām just getting noticeably dizzy and for me the best fix is to reduce my heart rate / blood pressure. If I do lots of work, keep going, I end up with headaches and dizziness. If I take it easy, it seems better. Iāve been advised to not smoke, not drink alcohol and stop drinking coffee (i.e. avoid any stimulants).
Hope that helps,
Richard
Hi Richard! it was very interesting that you shared your story. I also noticed that as soon as I get stressed, I feel as if I will go blank in the head. I will be sluggish and unable to concentrate. Iāve had migraines since I was 15 years old but they became fewer and fewer with age. but after cardiac surgery where I got two mechanical valves became my migraines more often and mytinitus got higher. I personally believe that I had the AVM but when blood flow was better so began my AVM to grow and cause symptoms. I hope it goes well with your treatment and I thank you for your answers. Iāve been so stressed in my life but now with AVM diagnosis, I have been thinking about and have stayed up. I take one day at a time and try to enjoy every moment with my family. somehow the AVM has been a turning point in my liv.Thanks again and itās nice not to be alone.
Are you referring to the healthcare system in Sweden? Yeah, it supports everyone but the downside is the time. Is there anyway you could get an appointment with a neurologist? They donāt do surgery and they were the ones that gave me medicine. I should also say that the 7 day steroid pack methylpredisone (I believe thatās what itās called) also strongly helped me, but it was a temporary thing. Did it thrice w over the course of about three months. But really you wonāt know what medicines respond well with you until you try them, so make sure to tell the doctors that if one doesnāt work you would like to call them asap to try something else.
Hej Itzo, itās best not to worry about what could happen. I think we could all worry about crossing the road and not dare go out, so put aside any worry. However, if I get any sudden new symptoms, f.eks. vomiting, migraine, anything severe & debilitating, Iām to go to the emergency department.
Richard
you are right. health care is free here for $ 300, but the queues are long. I have contact with a neurosurgon but he must analyze the test results first. I hope they contact me as soon as possible. thanks anyway
It is true .I have been recommended the same. I will wait and see what the test results show. I have always struggled in my life and will continue to do the same. I was born on the 60 ha ha !!
Itzo, Hi.
Did you just have the AVM? My MRI also found a possible thrombus. You can definitely get a thrombosis from a major operation.
Richard
I truly wish you all the best!
Thanks , you too.
I got my major symptoms 4 month after heart surgery. My AVM is approx. 3 cm. Because my whoshing sound that I had 2 years before , I think that I had my AVM long time a go.
The whooshing is called pulsatile tinnitus, probably avm related. Your post operation changes could be avm related or to do with a thrombosis, or increased blood pressure, or anything (I am not a doctor!)
I suppose if youāve had a poor blood flow before your heart operation, the presence of the avm or any weakness there could have been hidden. Getting a more normal blood pressure might then lead on to the avms dilating and giving you problems. So, yes, they may well be long standing but the change in blood pressure could cause them to become apparent.
Just working through logic, nothing to do with medicine. Hope this helps,
Richard
Itzo,
From what I understand thru my AVM experience, I thought we are just born with our AVMās? I was born with my AVM. I did not know I had it until I was 18 years old when I had my first grand mal seizure. Unfortunely, year by year, my seizures got worse and worse every year. (My AVM was a 5, so it was very large) When I was 29 years old, I HAD to do some thing, ASAP, and I was SO READY to get my AVM fixed the best way I could. (I was getting grand mul seizures twice a month and migrane headaches almost constantly.) Dr. Robert Spetzler/Barrow Neurological Institute (sp?) did my surgerIES and warned me that strokes were a risk with mine. I am not sure if he is still doing those now. Altogether, I suffered 2 strokes during 7 brain surgeries! I lost a lot because of it all, but year by year after it all, it got better and better and better. This is now my gorgeous ā2nd Lifeā. Good luck to your future, Itzo, and brain surgeries, NOW, is some much more advance than it was when I did it!
Lisa
Hi Itzo!!
Welcome! I have not had any heart surgery but I , like you have an AVM in my left occipital lobe. Two of them actuallyā¦ very deep. They are Grade 4. Iām 48 and have been healthy all my life until I had a grand mal seizure while driving this March of 2016 and drove into cars head on, thank the Good Lord everyone ended up ok. They couldnāt find anything at the hospital I went to for the car accident. I hemorrhaged 10 days later. When I had the rupture, I went to a much more advanced hospital, and I truly believe God held on to me.
I was born with it they tell me, so I guess I made it a good while before having symptoms. I now am numb on my right side and lose words occasionally. I have headaches everyday, but I only take ibuprofen for now. The headaches are always worse in the afternoon due to stimulation, light, noise , etc. Sometimes you just have to go and rest.
I had my last embolization 8-26-16, and I am about as functional as I could expect after having my brain go through all that. My AVMs are too deep and eloquent to do anything more with, but thatās ok, I feel like they have reduced the risk of another bleed enough that I can live with it God Willing.
I was on anxiety Meds before the bleed so they have left that alone so as not to change much.
My best advice is always count your blessings, listen to your body/mind and donāt feel guilty if you need a rest. The brain gets exhausted after trauma. I wish you the very best and will keep you in my prayersā¦keep smilingāļøGod Bless
-Lorna