Hi, I’m not sure if I’m posting this in the correct place but fingers crossed!
A quick update since I’ve joined here - cerebral angiogram August 2018 diagnosed DAVF Cognard IIa plus a smaller one close to my ear. Still constant pulsatile tinnitus, regular tinnitus in other ear, headache’s, neck pain, eye pain, fatigue, brain zaps and recently diagnosed with pressure behind the optic disc! Last Monday 24/9 I contacted my Consultant and decided to opt for embolisation, I’m really quite scared about having this but just feel I can’t go on with all these symptoms feeling so rubbish!
I woke up Wednesday 26/9 with a fullness feeling in my ear, my voice sounds really strange and I now have reduced hearing in that ear! Just wondering if anyone else has had this and if anyone has advice please. Awaiting appointment for eye hospital and have hearing check in two weeks time, when I will also see the neurologist. I’m really struggling and worrying something serious is happening so would appreciate your thoughts and advice on this, thanks x
Hi, I’m not sure if I’m posting this in the correct place but fingers crossed!
Hi,I also had fullness and decreased hearing in my left ear along with swooshing I had an angiogram which caused a stroke which they told me prior that that happens in one percent of people having them. I had a MRA prior to the angiogram and they found a dav malformation. I have recovered well from the stroke and had the embolization on May 21, 2018 at Mayo Clinic Dr. Lanzino. The I spent one night in ICU and returned home the next day. I went back for a follow up on August 21 a follow up. MRA was done and showed that the fistula was completely gone praise God. They said no follow up is needed.
Hello, your symptoms sound as if I was writing them! I was diagnosed with 3 dura brain fistulas (AVM) last Sept. I’ve had a successful brain embolization and open brain surgery at Mayo Clinic. After the open brain surgery I went home in 4 days. Don’t be afraid of the embolization-it’s done during the brain angiogram and you don’t feel it. Went home the next day instead of the same day because I was super nauseous-otherwise no problems. My ear still rings and I still have pressure behind my optic nerve that I take eye drops for but the headaches are gone. I even described the pain to my doctor that I got in my head as “zaps” just like you did! Good luck to you! Please update to let us know how you’re doing.
I went to Mayo and seen Dr Spetzler. He told me emolization and radiation are not an option. They cannot fix the avm because my main artery in my spine becomes an AVM. So there are no options for me sadly. I’ve seen 6 top Drs all over and each said there was no options. Now we can only manage the pain and the jerks my leg has. It looks like a seizure when my leg jerks but it is called a spinal spasm. My Dr did remove the blood clot and saved my life. But as for my AVMS…they cannot do anything. I had spinal surgery already after my stroke at 23…but they could only remove a few feeders connected to the 2 types of AVMS. Thank you so much for your support. I’m so glad your surgery helped you!! A blessing!! So nice to meet you!! Super Jen.
I’m sorry to hear the angiogram caused you a stroke, I was very worried about that too but glad that you have recovered well. Did you have glue or coils for your embolisation? I’m so happy your davf has complete gone, how long did it take for your symptoms to go after the operation?
You must be so relieved that it’s all been resolved, thank you for your message, take care x
Thanks for your message, it’s really reassuring that you had the same symptoms as I’m getting now and then after the operation, you’re well again. Why did you have to have open brain surgery and embolisation though? The consultant I’m seeing in U.K. has just said about embo for me. Did they say what had caused yours in the first place? Thanks again for commenting on here, it’s a lonely place having this davf as no one really understands what we are going through, thank goodness for social media and sites like this one! Look after yourself x
Hi! I had 3 AVM’s and the 1st one was able to be corrected by the glue embolization, but the 2nd one had retrograde blood flow which is bad and they couldn’t reach it safely with embolization so I had the open brain surgery. The 3rd one is in bone I guess and doesn’t pose a problem at this time. You are right about feeling lonely-when I was diagnosed I had never heard of this condition and knew of nobody else that had it. I had 2 beautiful granddaughters born last year when my AVM’s were discovered-it was a crazy year! Wishing you all the best!
Dear Jen, so sorry to hear about your AVM treatment options. You certainly have been thru a lot! I’ve read a lot about Dr Spetzler and he sounds like he was a very knowledgeable neurosurgeon and you were seen by one of the best. I will be thinking of you and hope that your symptoms can be managed and someday technology is discovered that can fix your AVM. Take care and know you are not alone!
Everything you describe is DAVF related as far as I know, including the ear fullness. So… getting the embolization feels like the right thing to do.
I reckon embolization is a cinch. If I can do it, anyone can. Honestly.
Let us know when you’re going in and ask us anything you like.
Very best wishes,
Hi Jen, just reading all you’ve been through and it makes me feel a bit of a wuss, you really are a fighter …I admire your determination! Stay strong, take care x
Thanks Richard, I’ll let you know when I have a date, been told there’s not much of a wait, but it is the NHS after all so I’m not getting my hopes up just yet!
Hope you’re staying well, look after yourself x
I’m doing pretty well, thank you! Summer has somehow run off but it was pretty good in some ways this year, wasn’t it?
That’s good news, I hope you continue to stay well. It was a really lovely summer wasn’t it, still been warm here this week, although a bit dull today.
I’m actually feeling a bit weird this morning as my PT has suddenly just stopped last night, not sure if that’s a good or bad sign I’m just enjoying the quiet! x
I had most of the same symptoms. Had my embolization in May at Cleveland Clinic. Went home the next day. Recovered well and returned to normal life in 4 weeks.
I had a concussion in late July though, which complicates things. I’m still recovering from that.
I forgot to add, my fistula was complex in the sense that there was cortical reflux, it was dangerous.
Choose the right place, don’t let just anyone do it, and you’ll be fine.
I’m glad all went well for you, it’s reassuring that these symptoms are probably just related to the davf, the sooner it’s operated on the better! We don’t really have a choice on who does the embolisation here in U.K. so I’m hoping my specialist is up there with the best.
Sorry to hear you suffered concussion, was it related at all to the op? x
No, I returned to mountain biking. Had a crash and suffered a concussion.
Thank you. Yes it has been a lovely summer, if rather dry.
I’m changing my approach. I’m going to assume that even though my head still feels a bit weird (but, actually less than it used to, so maybe I am getting used to the different pressures and it really does take ages to get used to) and I’ve got a loud pulse that I feel I can feel when my head is on the pillow, and I had a bit of vertigo back in August, I’m going to just assume these are residual effects rather than indicative that my DAVF still has a leak somewhere because getting answers either requires me to chase every single step with the hospital or just takes ages.
I’m still waiting for the results of my scans in May and June. I called the neuro’s secretary at the end of September and she said that he has had the results since the end of August but hasn’t done anything about them – no letter to me or my GP saying “all clear” for example. So I asked her to chivvy the letter along.
I almost want to see how long things take when you don’t push every step of the way.
But I’m doing pretty well and, as I say, I’m going to just go with the positive mindset. I think even though you have got some bothersome symptoms, maintaining a relatively positive mindset might help. Insofar as you’ve not had any treatment yet, you need to definitely pay attention to any changes, especially if significant, but otherwise staying positive is important, I think.
Very best wishes
Thats a relief that is wasn’t related! Hope you continue to stay well x
I relate entirely to all your symptoms I have a davf 11a. plus I have an aneurysm pcom I last saw my consultant in May,and he said at the meeting with rest of the team it was decided to leave it alone, I was just to contact him at Liverpool,if my symptoms got worse or the pulsatile tinnitus stopped,because he. Said the risks are too great, I mean how bad do they have to be when you feel so bad 24/7. can’t afford private healthcare so no choice
Hi, thanks for your message, it’s crazy isn’t it, I just had a conversation with my neurologist who says the symptoms I’m feeling are not related to the fistula and that the only reason they will do the operation is if the PT gets unbearable! I’m just at a loss, obviously I don’t want to have major brain surgery if I don’t need it but I really can’t go on feeling like this Where abouts in U.K. are you? x