Hello Jason , thankyou for messaging me!
It means alot that everyone is being really nice :)
I dont feel so alone anymore. Im getting abit stuck in my mind because on one side I want to find a doctor that will fix it, but on the other side, I'm not sure I'm brave enough to go through surgery... :(
But from my research I have heard its dangerous to leave them alone incase they bleed and my health has been rapidly getting worse recently so I suppose Ill have to try and find some courage ..
Its good that you found a doctor that listens to you ! I hope I have similar luck eventually, I will keep trying.
And thankyou for suggesting a way to deal with the headache pain ! Ive been wondering how to make that throbbing stop, I'll try the ice pack idea ,
Thankyou :)
Good luck with everything. Anything I can do to help just let me know :)
I know exactly how your feeling. My consultant is dragging his feet with regard treatment for my AVM in my arm.
I was admitted into hospital in jan with pos stroke, however they found no bleeding in my brain but I became weak in my left side and my speech went funny. They also found I’ve a hole in my heart and I strongly believe its all linked ie bleed from AVM that’s passed through my heart to my brain but the docs won’t listen.
I’ve made complaints as I’ve been off work since Jan and I want to go back but without some treatment I can’t.
I suffered lights flashing infront of my eyes and I feel light headed ( asthpugh everything is moving slower).
Dear Jessica,
I was searching the web in Australia of neurosurgeon that specialize in AVM.
Have you ever seen any physician in this group. Here is the hyperlink http://mqneurosurgery.com.au/index.php?page=our-team.
They are located in Melbourne..I must say it is nice to touch my mother's home land through you..Blessings luv. We are here for you. Find help.
Dave & Barbara Warren Oregon USA
Hi I really feel for you, my son 9 now, had a AVM last year, it's been a long road with many surgeries but his AVM hemeriaged, the Dr's didn't think he would pull thru, but from day 1 the Dr. talked to us gave us choices and explained everything to us...over an over... I truly think you need to have a Doctor that will explain to you and help you with the pain you feel. Our little boy has had soo many surgeries, he is my hero, he is brave and strong and that is what brought him thru all of this, he is weak on his right side but he is here w us due to GOD and the doctors. Find a Dr you are happy with, you shouldn't leave the office wondering.....
HI!
Sorry you have go trough this, but My friend it is a new Journey, you have to be strong. and be patient. It could be along journey or short but we have to leave with it. have faith my friend do not give up.
Hi Jessica,
I agree with what Ron had said. I think you need to find a Dr. who knows about AVMs and the effects that they can cause. I've been living with mine for a very long time, along with many other wonderfull people on this sight. Please feel free to read my profile. I sent you a "friend request" so you can feel free to email me at any time and I will be more than happy to help you in any way that I can. Living with this (the avm) is not an easy thing to do but, the more you know about it, the easier it does get.
I believe I can speak for everyone on here that - We are all here for you and don't hesitate to ask us or post anything you want to know. Yea.. You can even just vent, if you want to. Ha Ha
Ben
You mentioned that you haven't been told about any precautions you should take with having an AVM.
I'll tell you, what my doctors told me and I hope this helps you. I was told: Not to do anything that raises my blood pressure or my heart rate, don't do any activity (such as swimming) that puts the head below the heart level, Don't take any blood thinners - such as aspirin and very little to none alcohol. As that too can thin you blood. Also, be carefull of any caffeine intake - that can also raise your pulse rate and blood pressure.
One of the problems with avms are - the blood vessel walls are thinner than what a healthy blood vessel is and it lacks the corpusals that normal blood vessels have.. This is why we have to be careful of our blood pressure and blood thinners.
I know this sounds scary and it is. But, trust me. I have a lot of experience of living with mine (along with many others) and it does get easier.
I hope this is helpfull for you. :)
Ben
Damn Ben, I've broken every one of the things you've listed many times. I must be very lucky to never have had a bleed. I'll have to keep that stuff in mind in the future. Just please for the love of God don't put sex on that list. lol
Hey Jason E, I hate to say it but SEX already is one that list. think about it?? It raises your blood pressure in a few ways.
Hi Jessica. I live in Austin, Texas, which is about 175 miles south of Dallas. My daughter, Lizzie, was 17 when she was diagnosed with a giant avm (6.7cm) in her left posterior fassa (crossing over to the right posterior fassa.) This can be a tricky area to do surgery in as it is close to the brain stem. It was our family physician who sent her for an MRI because of some neurological symptoms she started having. BUT, her symptoms began with severe headaches and nausea, and the doctor assumed she had migraines (especially since her older sister suffers from migraines.) However, it was almost a year later when she started having dizziness and shaking eyes, which caused him to send her for an MRI. He called us to explain the basics of the avm, and to tell her not to use aspirin, ride roller coasters, etc. But then he immediately sent us to a prominent-in-Texas neurosurgeon in Dallas. He wasn't in the country that week, so we saw his partner. This doctor spent a lot of time explaining what the avm was and his recommendation for treatment. Even though her avm was extremely close to her brain stem, he felt that it was very likely to hemorrhage and that it should be removed as soon as possible. He said that, if she lived through it, she would probably be in a wheelchair for the rest of her life, but she would no longer be in danger of a hemorrhage, which could be even more damaging than the surgery. So we/she had some hard choices to make. We decided to travel to California to see a world renowned neurosurgeon and his team at Stanford Hospital, who specialize in giant avms. This surgeon also spent a good 2 hours examining her and explaining all her options and risks of each. Their recommendation was to do a multifaceted treatment of embolizations (putting glue in some of the vessels to cut off the blood supply to a large part of the avm, and then removal of the portion of the avm that was safe to remove without damaging her brain stem or making her disabled. Then they would use the cyberknife (like a gamma knife) to radiate the portion that was not safe to remove. BUT she would still be in danger of having a bleed until the radiation caused the vessels to swell up and die (up to 3 years.) (to be continued...)
(continued from above)
We went back to the Dallas surgeon to explain to him the Stanford approach and to ask him why we should choose his option instead. He admitted that the Stanford approach had a much better chance of leaving her undamaged, IF all went well and she didn't have a bleed in the 3 year time frame it would take for the avm to be obliterated. He also let us know that his partner felt that it was too risky for her to have surgery and that she would almost certainly die from it. He felt that they should do nothing until such time as she hemorrhaged, and then they would do what they could to help her survive that. We ultimately chose the Stanford approach. When we had questions and asked our GP (family physician,) he was very quick to let us know that this was not an area of expertise for him and to urge us to seek our answers from the neurosurgeons, who would know best.
So, my ultimate point is that, if your doctor does not take the time to thoroughly explain what is going on,and what all of your options are and what the risks to each approach are, you should definitely seek another doctor.
Also, I wanted to ask you, what type of doctor are you seeing? A general physician? Neurologist? Neurosurgeon? A neurologist who specializes in the brain should be able to help give you information regarding your headaches and seizures, as well as to come up with treatment plans. A good neurologist will also work closely with your neurosurgeon so that they are both on the same page.
I wish you the best of luck. You've already found some good luck by finding this group of awesome people. Even if we don't have all the answers for you, we have a lot of empathy and love and support to share with you and each other!
Cheers,
Kati
p.s. Sorry to say it, but sex is definitely out of the question! :-(
Jason and Miracle 1, I don't know which one of you made me laugh the hardest. Jason fearing he can't have sex any more Or... Miracle 1 for figuring it out. LOL
With respect to the 'no sex' question, I'd refer that to your AVM medical team.
When we were getting our discharge from Stanford following her crani, there was a long list of generic restrictions on the form. Number 5 was the biggie: Refrain from Sex.
Being the ever helpful husband, when Mary was going over the papers, she said 'any questions?"
Me: Yes, what about #5????
She laughed and said "I don't know why they put that on there. As soon as she feels like it, she can have sex."
So I wouldn't just assume from what you read here that it's either OK or Not OK, get some good medical advice.
Take care,
Ron, KS
Thats honesty Ron! Yup, its worth a talk with your doctor. I mean its kind of a big deal. Best of luck to you Jessica. :J
I think if it feels wrong, something is wrong. The sensation you have that comes from your chest to the bk of your head sounds like it is blood flowing from your heart through your carotid arteries (in your neck) and to your brain. If there is an interruption in blood flow anywhere you may feel pain.
Hi Jessica :O)
I had my surgery back on July 28, 2005, so it has been a while. I still remember everything leading up to to the surgery quite vividly... The diifficulty the nurses had starting the IV, the Stealth MRI, talking to my family and the doctors in the pre-op room, but as soon as the medications hit, everything went blank.
I only remember little pieces of what happened in the hospital after the surgery. I remember having blood drawn a few times while I lay there with my eyes unable to focus. I remember one of the nurosurgeons sitting at the foot of my bed and asking me to say "No ifs, ands or buts" amd him being completely shocked when I said it. I remember one of the nurses walking me through the hall and asking me to read the signs she was pointing at (even though I was very confused by the questions she was asking and couldn't focus on the signs if I tried).
It took me a couple of weeks to be able to focus my vision without seeing double. I was having a very hard time remembering names, my short-term memory was horrible, I was having bad nightmares, I couldn't figure out simple things like how to turn on the TV. But pretty much everything came back within month. Some things are still not the same as they were before the surgery... For example, my AVM was so close to my optic nerve that I ended p lsing exactly half of my field of vision in both eyes (hemianopsia), still have a hard time with names of people that I have not known for most of my life, and other little nuissance things.
I had several blood tests prior to my surgery, but mostly to track the medications that I was taking to prevent seizures.
As for talking, well, it's different for everyone. In my case, I don't remember the situation but I have been told that I was able to speak rather clearly immediately following the surgery, but developed a clot that caused a minor stroke and they had to open my back up again to remove it. As the swelling increased, my speech got worse, but as I mentioned before, my speech, memory, balance and everything improved significantly when the swelling went down. By contrast, I know someone who had surgery to remove a tumor from her frontal lobe and aside from being tired and uncofortable, she was absolutely fine almost right after she got back to the recovery room.
Jessica, this is obviously very hard on you, I am really sorry. If you can gather your strength: go back to your doctor and insist that something is wrong. You clearly know your body. If he won't listen, find another doctor who will. I know that its hard to advocate for yourself when you are not feeling well. Is there someone close to you who can help? My daughter, about your age, was ignored by her GP, and others in the system, despite experiencing confusion and severe headaches for more than three months. She was even sent home from Emergency after complaining of 24-hour headaches and projectile vomiting. Eventually she was just too weak to fight a system that kept suggesting she was suffering from 'stress' headaches. Even though she was an adult, I felt I had to step in and get her referred to a neurologist. That appointment didn't go well either: she said my daughter didn't look like someone with a neurological disorder. However I insisted, I mean noisily insisted, that she send her for a CT scan - just to get rid of me. She reluctantly sent us over to the hospital and within 10 minutes they admitted my daughter. They saw the mass and remnants of a previous bleed and diagnosed her as suffering from severe hydrocephalus, which explained all her symptoms. The neurologist was extremely apologetic: said the surgeon would be stunned to see someone with such a large mass and so many complex symptoms looking so healthy. I hate to think what would have happened if my daughter had not had someone in her corner who knew her well and was certain she was very sick. Please push as hard as you can and insist they take you seriously. Sending all good wishes....
Vicki, Your daughter was very lucky to have you in her corner. Thank you for sharing your story. You are an inspiration to follow. :)
I've been mis-diagnosed more times than I can count and I too, had to push to get some tests done. Then I was finally sent to the right doctor. I think that's a good idea for Jessica to take someone with her to her dr.'s app't. I had my sister go with me and she spoke on my behalf when I couldn't.
Ben