Hi all, I’m new to this site.
I’m just wondering has anyone Been thru surgery with no results?
I had metal clips put on the fistula in my head and came out of surgery
With no change.
Hi
I am fairly new myself to this site. I do have a fistula on my left side of my brain. I just had my first angiogram and emblo Jan 5th- The doctors at Stanford used glue and onyx. For me prior to the procedures I was hearing a whooshing sound, head pain and could not sleep much. Since the procedure I dont hear the whooshing and I can sleep 8hrs I still have the head pain but I am hopeful it will get better soon.
What are your symptoms? Also where is your fistula?
Angela
Mines on the left side. Prior to the operation I only heard the whoosing sound, I had the fistula clipped to block it off however I still continue to hear the whoosing sound and have now developed constant headaches and tiredness and terrible short term memory.
I’m back to the specialist this week so I’m hoping to get some more information as this noise drives me insane.
To be honest I didn’t realise that this was a big thing until I did some research and found this website with other people…it’s kinda nice to know it’s not just me though.
But I’m struggling to cope with the constant headaches n constant tiredness as I am also a working single mum to a toddler.
I’m sorry that I’m not real up to knowledge on the medical terms for it all too.
The whooshing sound is called a bruit. Very common with AVMs.
http://www.avmsurvivors.org/main/search/search?q=bruit
Hi Zoe
Welcome to the group - this group is a God send. I had no idea either and was so thankful to find this site and get answers.
Sounds to me like the clipped method did not work you should not be hearing the whooshing. The first question after my surgery from the doctors was - Do you hear anything? I know it is so nerve racking to have that whooshing sound. Head pain is normal after the surgery. I can not tell you how long as its only been three weeks for me. I am on gabapetin and the doctors also gave me pain meds but I am not taking them. I use gel ice packs on my head everyday. I am also tired and I can not imagine having to work and having a toddler! I hope you have some help!
Where are located? Maybe someone on the site can suggest a doctor. You should be seeing a doctor who specifically works on people with Fistulas or AVMs. Its rare what we have and even at Stanford they only see 20 people a year. So getting the correct doctor is essential. No worries about medical terms here - We are all here to support one another.
I am on medical leave until mid April. I did not even leave my house for the first two weeks. How long ago was your surgery? How long was the surgery?
Angela
I can’t remember exactly when I had the operation done, I remember the noise started back in July 2009. And the operation was September the following year I think.
Wow so yours is only a recent operation then? How are you feeling? Did your whoosing stop? After my op the site of incision on my head got all infected.
My ENT specialist told me that most people just live with the noise and that it wouldnt get any worse and I could live with it. However I’m starting to doubt him now as i feel worse and I tried to live with the noise but it’s impossible for me to concentrate on Uni studies and work.
I’m in QLD in Australia and live out bush so I have to travel 3 hours to my Specialist and I don’t know of any others.
I am so sorry to hear all this Zoe. Did your ENT do the surgery? If so that is very unusual. I did not have to have my head cut. My doctor was able to go into my brain via an artery in my groin and go all the way to my brain. The first part I was awake and its called an angiogram. They numb you. Then they put under and the next part is called embolism where the doctors try to block of the connections in my case they used medical glue and onyx. I had 30 connections on the artery side and one connection on the vein side. They were able to treat 29 out of 30 on the artery side. They could not reach the last one but I do know its bleeding but not a great deal and they hope it dies off. Right away when I was awake I noticed that I no longer heard the whooshing. The doctors want to do a follow up angiogram to make sure that there procedures held. This is normal even for an AVM.
Your doctor that is an ENT is not the type of doctor you should be seeing.
Many reg healthy people can hear the whooshing called bruit and it has nothing to do with a fistula.
You need to see a vasucular neuro or a Neuroradiologist
My doctor is Dr. Marks who did the work on me and if they needed to cut my skull it would of been Dr. Steinberg
Here is the link to Stanford where I have been treated just so you have a reference
http://strokecenter.stanford.edu/faculty.html
Also the first part the angiogram is essential in determining where your fistula is and also if its really a fistula or an AVM. Did they do angiogram before surgery?
I am feeling better each day but still really tired and lots of head pain, But I also had a stroke at 42 due to five blood clots last March and my head was hurting since then but since June my head pain changed and I think that is when the fistula started...but it wasnt until Oct that I was hearing the whooshing sound all the time so I mentioned it to my stroke doctor who thought it would be rare for me to have another rare thing but I did...but I pushed for more tests (MRI called MRA) which showed my blood was flowing in the wrong direction and Dr, Marks was confident that I did have a fistula and ordered the angiogram and he was shocked that I had so many connections. I also see a pain neuro that was suggested by my stroke doctor.
Is there a University hospital in that 3 hour area? If so I would make an appt to see the correct kind of neuro.
Sorry what is QLD? I dont know how you can concentrate at all with the whooshing . I felt like a Zombie getting no sleep and half the time I could not carry a conversation because I could not hear what people were saying over the sound in my head. Also getting an infection is quite common after brain surgery from what I read. But you should really be seen by a specialist neuro. It is quite serious what we have and you need the proper doctor. You should not haveto live with this as your ENT told you!
Angela
Thanks so much for all your information there Angela.
Yes my doctor did an angiogram before my operation to see what was going on and then it was my choice to choose between what u described or the cut head opperation my doctor told me that there was a chance of stroke with the angiogram treatment that’s why I chose the other option.
Wow that’s great that they got 29 out of the 30 in you I hope your bleeding stops soon then too.
I can’t even imagine what it must be like to have had stroke,
I’m only 20 and I have been lucky enough not to have any bleeds or strokes due to this but my other symptoms have been worsening since Christmas.
Oh sorry, QLD is a state in Australia…your from overseas somewhere right? I’m from Australia.
I might look into finding another doc. My ENT works closely with a neurosurgeon but it’s the ENt that I have my appointments with my ENT and the neurosurgeon he works so closely with were the ones who did my operation.
Hello Zoe
I live in Northern California in the states. We are lucky and have a few teaching hospitals that we can choose from for these malformations. So they only did one angiogram? Did they do a follow up angiogram to make sure that the work they did stayed? normally there is a follow up angiogram between 2 and 6 months.
The stroke sucked big time. I had been having what I thought were migraines and then I flew to another state and got massive head pain but was stupid and did not go to the doctor. Then when I flew home I felt like a headache but it was a rough flight. I woke up the next day with what I thought a massive migraine. I went to work and would loose time like hours and not know where the time was...I was having seiZures
Anyway my husband was working in another state and when I picked him up at the airport he thought I was drunk...Which he knows I dont drink and drive but he was upset cause I was over an hour late picking him up. I started to throw up and again he thought I was really drunk and I went to bed. I woke up early the next am was throwing up and he still thought I was drunk...( he feels very bad) then he got up to feed our cats and he heard a big crash I recall feeling weird and trying to stand up some how I did and then fell and could not get up. He rushed me to the hospital nearby and they called Stanford which sent a doctor. The doctors first thought I had a brain tumor then an aggressive cancer that kills you in 48 hours. So they transferred me to Stanford and the next day they were prepping me for deep brain surgery and that is when they found the blood clots. Its called cerebral venous sinus thrombosis and its 3 in million so they dont see it often and many times people die. Once they started to give me blood thinners I woke up but I thought I was in Maui and I could not recall where I lived! My doctors have been great. My husband had to quit his job to take care of me. I still have weakness on my left leg. When I had the stroke 3 major veins collapsed. Two came back but one on the left side the left transverse sigmod is gone so what I think happened is the body tried to fix it by creating this fistula. So I hope it does not keep trying to fix it.
Did you have a head injury before you started hearing the whooshing?
From what Dr. Marks told us that it is really an art to fixing these things and you want someone who has some experience. I asked Dr, Marks if he had ever had a patient have a stroke or facial paralysis or death while he worked on them and he said no. Also a few people on this site had work done by him and they all raved about him.
It is not a good sign that your symptoms are worsening and you should seek another doctor. You are young and should not have to suffer
Did you have a head injury before you started hearing the whooshing?
Angela
Oh my goodness Angela that is terrible. Have seizures all settled down for you now? That would have all been so scary.
No they never did any follow up scans or angiograms which now seems odd when I think about it. I had some head trauma when I was about 9 but the symptoms only started when I was 17. I feel bad for complaining about my few small issues now compared to what you have been thru. I really had no idea there was other people out there with these AVMs and I had no idea it was anything bad cuz my doctor made it seem like it was fine till I did some research.
Yes thankfully no seizures. I am on meds and my health is improving. It was scary but I was out of it and it was worse for my husband and my family. I was out of it for about two months and then started to improve. The doctors were all shocked how quickly my body/brain was healing. They said that head trauma can cause the fistulas and AVM's - or we can be born with it and the head trauma or giving birth can cause them. Do not feel bad. I feel bad for you. Your issues are not small. You are mother and working and going to school. I can not imagine. And your doctor should not make it seem like a light issue. If the doctors do not get all the fistula or AVM it can continue to grow and be a problem that is why the doctors normally follow up with another angiogram. Many people here have had lots of them. Did you fly a great deal when you were a teenager or go to high altitudes? Like skiing?
Are you seeing the ENT or the neuro this week? I would ask them why they did not follow up with an angiogram since that is the standard. Do not tell them you have been on the internet instead tell them your cousin or a family friend is a neuro in the United states and that you have been talking to that person.
I’m glad the meds seem to be helping you Angela.
I’m seeing the ENT this week he will probably only send me for more tests I’m assuming.
No I have never done any flying or skiing or anything at high altitudes.
I will add that question to my list I have many questions to get answers to this week.
Thanks Angela.
Zoe
It is so strange that you have to see the ENT. You are the first person I have heard that has to see an ENT. You really do need a follow up angiogram from what I understand the MRI/MRA's hardly ever show anything. Here on this site I learned the angiogram is the gold standard to make sure the solution is still working and your symptoms tell us that there is something going on. Maybe he can get you to a neuro that you can speak to if he wont order an angiogram. I would ask the doctors about flying and what restrictions like drinking alcohol etc you should have - please keep us updated and let us know if you have any more questions
Angela