My AVM was found incidentally in January 2018 when I had symptoms that I thought was a pulled muscle in my neck and back with severe headache. After several CT and MRIs I met with a neurosurgeon and he performed an angiogram. It resulted that I have a 6cm AVM on my right temporal lobe. I am 62 years old and lucky (I guess) that I never had problems. My doctor told me that I was experiencing symptoms earlier in life but blew it off that is was stress or I was tired. He stated it was very big and complicated but was confident he could treat it with 4 maybe 5 surgeries. I have been reading everything I can and was grateful to find this site in February. Not sure why I haven’t joined until now, maybe wishing it was a bad dream and I would wake up. I have been experiencing such strange sensations and with the neck and head pain and at this point I think I am welcoming anything that will give me relief. This community has at least put everything into perspective for me and all I can do is pray for a good outcome. I have the 1st of the embo tomorrow. I am hopeful I can get through this with no or limited deficits, but still scared.
Don’t stress, be positive and you’ll be fine, everything will work out, just take it easy and let them do there thing, we’re all pulling for you, keep us posted and take care,
I had a brain fistula and 3 unruptured aneurisms in my right frontal lobe. I had just one embolization in September of 2014 and its worked so far. The only complications I experienced is the embolic material is now moving around. But I’m sure you will get through it. Medical technology today makes the embolizations we have safer then ever. Good luck.
It’s great to have you join us and I hope the op has gone well. Hope to hear from you in a few days.
Very best wishes
The surgery went well. I am still feeling weird from the anethesia. They were able to get 25%. Three more procedures. Just want to sleep. I am hopeful this thing will be cured. Will keep in touch through the process.
Nice !! This is great news, your right on track, just rest,sleep, take it easy and give yourself a chance to heal, so glad to hear it went well for you, take care,
Thanks so much. The headaches have started so just trying to manage them. I am praying for all those folks that have it so much worse than I do. I am such an active person (we raise cattle) that it is so hard not to want to go out and do chores. Thank goodness I have a husband that is completely understanding and won’t let me do anything. My biggest challenge is keeping blood pressure down. I have a follow up with surgeon on May 10th, so if it does not get better will give him a call. Just hanging in there til the next round.
I think you’re doing brilliantly! My AVM was tiny compared to yours, though I had a decent area of reflux flow going on, reaching out to the outside of my skull! I think I stayed on the paracetamol (can’t remember the US name for paracetamol) for about 2 weeks post embo, so perfectly ok for you to be in a similar situation. Im sure embolization is less invasive than a craniotomy but I’m equally sure it takes a while to feel better.
Very best wishes to you!
Today is a very bad day. Headaches with the feeling my scalp is burning and sore. I am on Fioricet but it only last about 3 hours. Can’t take but every six so try to make it through til I can take another dose. I have a follow up on May 10th but not sure I can wait that long. The first few days after the embo was rough but then I had three good days. Now I feel like I took several steps backwards. I have three more embos and I hope they are better than this one. Trying to stay positive.
Hi Cowgirl, Firstly welcome to the AVM family and sorry to hear about your story, however please stay positive because there are many many many success stories here and many of us who have gone through these hard times in our lives.
Please keep us posted here and if you have any questions please do not hesitate to post here as it is a great place for support or general perspectives and experiences with ppl and their AVM stories… God bless!
I am scheduled for my second embolization tomorrow. I actually have felt great the last three weeks. It has been nearly 2 months since the first embolization and I actually have been feeling pretty great. Been mowing the lawns, doing farm chores, and even helped my husband with the first hay cutting. Will keep everyone posted. Wish me luck! God is great.
I hope all gos well today wishing you the best. Take Care, John.
Very best wishes!
Well I am home. Feel good considering. The surgeon said there were sections pretty hard to get at, but he was able to shut down another 20%. I have a post surgery followup on 5 July. Because he felt I was in good shape, he is already scheduling the 3rd phase of this journey. Now it’s lots of rest to get ready for the next phase. He is very optimistic he can get the rest in just 2 more procedures, which is fantastic considering it was 6 cm at the start. Him and his surgery staff were fabulous. I did have another eye opener. There were several people on my floor that had suffered stokes and the pain and confusion saturated the the hallways. I wanted to console each one of them. I pray I don’t have a bleed. Thanks for your kind words of encouragement. will get you posted.
Thanks John. This kind of encouragement gives me the courage to stay positive through all of this.
Your AVM was detected with the angiogram and not with the MRI or CT?
In my case, the angio was the ultimate detection tool. Many, many drs, specialists, CT scans and MRIs resulted in vague diagnoses. With the angio the dr said “we know what is wrong”. I waited so long to hear those words! Waiting times were torturous. When my AVM bled and I started to crash my husband bullied his way into taking me to see a top neurosurgeon. He got me in 2 days later and saved my life. Squeaky wheel and all that…
I’m in a similar situation. I’ve been struggling DAILY with extreme vertigo, tinnitus, pulsating tinnitus, headaches, and extreme fatigue. I’ve had 2 MRI’s that show a small vascular malformation in the cerebellum, but all the doctors I’ve been to say it’s clinically insignificant and an incidental finding. I’ve been dealing with this for 10 months and still don’t have a diagnosis and it seems like it’s gerring worse. I’ve been passed around from doctor to doctor and still don’t have any answers. It took me 8 months to get a neurology appointment which is next week (finally!). I asked my primary care doctor if he could order an angiogram and he didn’t see the need. It’s so frustrating…I sit and wait. It would be really comforting to talk to a doctor that didn’t just shrug their shoulders and say “I don’t know” or pass me off to somebody else because they don’t know OR worse, treat me like I’m faking it because they don’t know. I tried to get into Barrows in Phoenix, but I can’t get anywhere with them. (I’m in Washington State, so Arizona would be a ways to go, but worth it if I could get in). They got my referral 2 months ago and I can’t get beyond the receptionist telling me that the doctor has reviewed my file and I should be getting a call from scheduling. It hasn’t happened, I can’t get into the right specialists in my area and I’m not getting any better. As I mentioned, I’m really frustrated! WOW…that was quite a rant! I’m sure I’m not alone in my quest for answers and good medical care for these unique issues.
You got that right…“these unique issues”. My neurosurgeon says he is trying to educate drs to recognize avm symptoms as most drs will never see this condition during a 40 year career span. I am also diabetic and there are so many resources available for diabetes through education, counseling, subsidized equipment etc. I confronted my GP the other day with “my diabetes likely won’t kill me but this AVM event could, and you know where I get support for my issues? Through a website from other sufferers…how pitiful is that?” He was a bit taken aback but agreed about the lack of help out there. It took me 5 years to get a proper diagnosis. That should never have happened. It is not a journey for the weak.
I agree about being on a neurosurgery ward… we are very lucky to learn what this is all about before having surgery or having a bleed. It is surely dreadful not to know what’s happened and wakeup to find yourself in trouble.
Hats off to everyone who’s had a bleed and got through it.
Well done for getting through your embo. I’m sure it gets tougher as you do each one but I hope you get on ok.
Lots of love,