I'm pretty new to all of this, but I just got out of the hospital and wanted to share my story..
So I came home from a gig on Sunday May 18th (I'm a keyboard player in a folk/bluegrass band) and experienced one of the worst headaches of my life.. at first I thought it was just a migraine, but when I woke up the next day, I noticed my left field of vision was blind. I went to a walk-in clinic and my condition was misdiagnosed as a retinal migraine.. so glad I did my research online (even though my friends were calling me a hypochondriac). A couple days later, I had another extreme headache and my vision got even worse.. I could barely focus on anything on my left side. So after doing some research about retinal migraines, I realized that the symptoms were only temporary, and there must be something more seriously wrong with me. But to be sure it wasn't eye problem, I visited an ophthalmologist and did an eye test. The doctor did some visual field testing and said "there's nothing wrong with your eyes, but you have to go the ER immediately". At this point I was pretty freaked out, so I walked to the nearest hospital (Toronto Western - which happens to have some of the best neurologists in Canada) and got tested for a stroke by many different doctors.. the scariest question I was asked was "has anyone in your family died young from a stroke?".. that did not put me at ease! Anyway, they did a CT Scan, MRI, and finally an Angiogram and discovered that I had a blackberry sized AVM in my right occipital lobe (that controls the left field of vision). It had ruptured only in one area, so they ended up doing another angiogram and embolized the area with glue. It was a terrifying week but I'm really glad the operation was successful and I'm back on my two feet again. I've had a dull headache ever since and my left field of vision is still somewhat blind, but when I hold out my two hands in front of me, I can kind of see my left hand now.. so I think my vision is slowly recuperating. I won't be able to drive anytime soon, but I usually get around by public transport anyway. I am supposed to go back later in June for a Gamma Knife operation.. so hopefully it all goes well!
I have a few questions...
What are the chances of a rebleed after the embolization? I was told to take it easy.. no strenuous activity etc. I haven't had any coffee, cigarettes or beer and I've been trying to eat healthy.
Are there any risks associated with the Gamma Knife treatment?
Has anyone had similar vision problems from an AVM and have found their vision healed over time?
James..I agree with you being told to take it easy...You have to let your brain heal.
As for your vision...did you see a NEURO ophthalmologist? If not, see a neuro-opthalmologist as they do the right tests and understand vision problems after having a bleed.
Hey! Wow you are so lucky they caught your AVM when they did. Mine was discovered at a really good time too. Usually they find them when your dead and they have ruptured.Your vision Is another story. I am not sure if it will come back the way it was before..My vision was affected in my left eye peripheral.So i know how it can be.After my Gamma knife surgery it took about a week for my eye's to open and stop being so sensitive.When i was having my Embolizations my sight wasnt really affected I just had killer head ache's. I doubt you will have a bleed because that is what the procedure is preventing.that is what the glue is for.
Hi James - after the embolization for my complex brain AVM/Fistula they said there was a very low risk of a bleed and taking it easy was the best option. So you are doing the right thing - stay positive it sounds like they caught it just in time
James, I'm glad you're re-cooperating and to address your visual concern, the odds are i n your favor and it could take up to a year or so so please be patient. Unfortunately for me, my visual is clear but out of synch. with each other. It's been almost three years for me and I don't expect a return to normalcy at this point. So, my wife and I were seeking new glasses for my wife and happen to be in a Costco store to seek Optical help for my wife and we happen to mention my conditon/symptons to him and surprisingly he mentioned that he could help me with this. He taught this subject at the local University Hospital...what luck. We made an appointment with him and after a couple of appointments with him my vision is manageable. I'm so happy about this and life is moving on for me. On a different subject ...I have had over 17 surgeries in my head (IVM...Intracranial Vascular Malformation)including exploratory, and I feel fortunate for being here. I suspect you to will experience success, just think positive and surround yourself with loving family and friends. Good luck to you and I will pray for you. Most importanly, you're not alone and this web-site will keep you abreast of the latest haapenings.
We share a similar story! I had a stroke in my right occipital lobe that knocked my vision out in both lower left quadrants. I too had an embolization with glue. It's been almost two years and a lot of my vision has come back. The first day people were missing large chunks of themselves, lol. (That whole 'follow my finger with your eyes' test? failed it big time! Um... what finger??? LOL) I agreed to go to the ER only after my 'headless' husband insisted. Hearing your spouse speak with no head makes for a good argument :) There is always a chance an AVM can come back but I believe it is low. I just had another follow-up angiogram with my neurosurgeon who happily released me. I will not need any further stroke care unless I present with new symptoms or headaches. The headaches are common btw. I was on meds to prevent them and now I only take them as I need to.
I was back to work full time 5 months later and I drive. I still have small lower left quadrant blind spots and I believe I've healed as much as I will. I have residual problems with contrast and depth of field. My stroke was the size of a large gumball plus I bled under the brain lining itself, so I took a bigger hit than you did. Take it from me: do not over do anything. Give your eyes a break. I do photography and my first weekend out of the hospital (1 day in ICU) and I was at a car show in 95 degree heat for four hours taking pictures - then home on the computer uploading and editing. Man, I had some serious optical stuff going on! Too much too soon. Rest, and enjoy life, and it will come in time. :) Cheryl
Hey! My experience was similar to yours. I was at the gym and I had a bad headache. I went home to sleep it off. The next day, the headache persisted (it was duller). So I went to an Urgent Care clinic. They performed the routine stroke exams and I passed all (the only symptom I had was a headache). She said it was probably nothing but if it continued to go to the ER. So 2 or 3 days later the headache persisted, so I went to the ER. Unfortunately for me it seems the Dr. who saw me was a novice. She said I didnt have anything. I asked her about CT and she said that wouldnt help; said if my headache continued for 1 week to go get an MRI. My headache went away and I never had the MRI. 3 years later I had a severe stroke.
Anyway, to answer your questions: 1. in http://thejns.org/doi/abs/10.3171/jns.1996.85.1.0019@col.4 it says that " The hemorrhage rate for partially embolized AVMs was 3% per year".
2. in http://www.thegreenjournal.com/article/S0167-8140(97)00060-1/abstract?cc=y?cc=y it says that " The risk of complications following radiosurgical treatment of AVM is dependent on the clinical history, AVM location and whether the patient has received radiation earlier." I do remember though that I was told that after a hemorraghe the probability for another hemorraghe increases, so, in my case at least,I was told that it was best to have radiosurgery than not because the risks of another hemorraghe were greater than the risks of complications due to radiosurgery.
3. I have not had vision problems due to the AVM; but I HAVE had problems with my motor skills. Hemorrhage affects are often more severe post-hemorrage. In my case, the first two months I could not even feel my right arm or leg. Now, I have recovered significantly, but not completely. I can move my arm but not my ankle. I cannot write with my right arm. But there are other people that recover completetly. What I am trying to say is: give it 1 or 2 years...then you will have a baseline of your hemorrage deficits. And of course you can always keep on doing what your doctors/therapists recommend for optimum results. Recovery speed and reach varies considerably from person to person; no two persons have the same experience. So never lose hope and keep on doing what your doctors tell you!
BTW, a special disclaimer, I am neither a doctor nor a therapist, so even though I can tell you MY particular experience, it is always best to ask those questions to your doctor and to your therapists, as they know your EXACT case as opposed to averages etc.
Thanks so much for the advice and the kind words guys! You've really put me at ease. Cheryl, I did the visual field testing and my issue is in the lower left as well.. glad to hear that you were able to get back to driving. I'm scheduled for rehabilitation appointments so I can get my license approved again.. not that I really drive at the moment, but I definitely would like to in the future. I also work as a server in a pretty busy restaurant.. so it's going to take some getting used to and hopefully I won't bump into anyone and drop any plates! They are giving me lots of time off.. my gamma knife is operation is scheduled for June 26th so hopefully I can get back to work soon after that. In the mean time I have a lot of free time to work on personal projects like making music so there is a silver lining to all of this!
I got to sleep in a proper bed at home for the first time since my hospital stay last night.. so nice to be able to roll around without fear of having a cable ripped out of my vein!
Hey James, hope this finds you doing well. My AVM ruptured out if the blue in an inoperable place. They said embo could leave me paralyzed so not really an option. Had the radio therapy and was told it would die and shrink within a year. 10 years later and nothing has changed, except my Dr. said the blood was starting to flow back through the spot that ruptured. They don’t seem to concerned so I figure they know what they are doing. As for my eyesight, after it occurred, I had to wear an eye patch for awhile because I had a lot of double vision. That finally cleared up by the vision in my left eye is very blurry, to the point that things 5ft away are just blobs. It does to appear to have gotten worse in the past few years though. Now my right is getting a little worse so I probably will need glasses soon. Not looking forward to it, but I’m not getting any younger either. Of course the good thing is that I AM getting older and get to see the top side of the ground. Take it easy, I still try not to get excited or angry or anything like that since mine has not changed and I am not sure what will happen or when. Have a great stress less and wonderful dat.
Hi James. My AVM was also in my right occipital (and parietal) lobes. I had a massive bleed 6 years ago. I had a series of embolizations followed by a craniotomy to remove all of the AVM. I lost most of my vision to the left in both eyes. 6 years later and it has not returned so I'm not expecting that it will. I do have prism glasses that help me read but my depth perception is still pretty bad. I don't expect I'll drive again either but I manage with lots of help. Best of luck with your procedure.
James, my 22 year old son had Gamma Knife treatment at Toronto Western a week ago. He has a small AVM (1 cm d) in the medulla area of his brainstem that ruptured. When it ruptured 6 months ago he had some torturous deficits (couldn't stand, swallow, speak, double vision). Six months later he has recovered most functions. His balance gets a little off when he is tired and he is still getting speech therapy, but his voice has mostly recovered. I am not a doctor but what I have learned about Gamma Knife is that the smaller the AVM, chances are the smaller the dose of radiation, the less chances of radiation effects. My son was sick during the first day, and had some nausea for 2 days (that could have been from the head frame and pins) and is not experiencing any after effects now. Sometimes the radiation can cause problems down the road. The fact that the AVM is small is probably good news for you. They consider my sons AVM to be very treatable because it is small. I would say be sure to see the right doctors regarding your vision. Having youth on your side is probably a big factor in recovery. Ask all the questions that you can think of. They have a Vascular Malformation Study Group through Toronto Western so those doctors are up to date on how to treat AVMs. Good luck with everything!
All of my support to you James. I also have my avm on my right side. Mine has not rupture. My neurosurgeon recommends that my avm not be touch bacause I run a high risk of my avm bleeding. I have not experience any vision problems but have had many migrane headaches. Wish you the best.
Hi James, welcome to the site and sorry to hear you are going through this very terrifying and confusing time. I had an AVM in the same spot which ruptured 5 years ago. I had mine removed by emergency craniotomy but the stroke also took ALL my left peripheral vision. The narcissist doctors told me it would never come back and I believed them. DON"T believe them! They say if it doesn't come back in 3 months it never will. I wish my rehabilitation had focused on retraining my brain to get the vision back because you can retrain your brain to see again. My visual cortex was not damaged but the transmitter that carries messages from eyes to brain was damaged. I'm not sure how it all works but I believe there is still hope for you. I took part in a study similar to Novavision and it did work to help me regain my left peripheral in both upper and lower quadrants but the central is still my problem. If I was in America I would have gone straight to novasiion. http://www.novavision.com/ If I had started earlier I'm sure I would have gotten it all back. Keep doing eye exercises to retrain your brain. I also did Nintendo DS sight training. the vision I have is 20/20. their brain training is good too. Stay positive and focused - excuse the pun ;-) - anything is possible. just believe and try. Good luck to you xo Caroline
Hi James, You were lucky in so many ways! Good thing that Ophthalmologist sent you to the ER when he did to prevent additional bleeding. Embolization prevents that AVM from re-bleeding. As for your visual field loss, I can only say that, in most cases, it's a permanent loss. A neuro-ophthalmologist might be able to offer some visual training to help.
In my case, 7 years ago I had a bleed when my a-symptomatic, unknown and very large AVM on my left occipital lobe hemorraghed. I has kept on blood pressure & anti-seizure meds, had to be at home resting (with constant supervision). I had 2 treatments of Onxy embolozation followed by surgery to remove the AVM. Following the embolization & especially after brain surgery, I had a lot of headaches. I was weaned of the meds eventually & slowly resumed my activities. I regained only a little of my vision loss but have learned to adapt. My many years of being an Optometric Assistant have helped me to rejoice about what I CAN see rather than be sad about what I cannot see.
My son AVM was in same location and he has the same deficit in his visual field. Your vision will be better after edema (edema is normal after embolization) but will not be 100% normal. This is the minimum cost, you and my son had to pay for treatment.
About rebleeding, you have to do angiogram after 6 months. If AVM is 100% occluded, it will never bleeded.
i had a similar avm. i had three bleeds over ten days- that felt like awful headaches and nausea and vomiting too. I was also misdiagnosed but 1.5 years later i had a 4th bleed and ended up in the ER- that's when the scans revealed a bleed and the angio revealed an AVM. i had three embolizations over a year (two reduced the size). this was followed by radiation. it is good that you are trying to be of optimal health.
there are risks of course with radiation, as with most things in life medically.
it seems like your doctors are suggesting a combo treatment method.
i think you can heal fully post radiation.
chances of another bleed are definitely there as long as the AVM is not totally (completely) obliterated.
i waited 20 months between radiation and check-up which revealed a 100% cure.
there was the risk--but i guess with each day, the radiation is working and reducing the size of the lesion. all the best. stay informed and take it easy. you will be cured soon.
Best wishes with your recovery James! We are here to support you. Mine has not ruptured, but all neurosurgeons I consulted with suggested to have a surgery, so I will have one next week. Mine is in the left occipital lobe, so any procedure could affect the right side of my vision. Doctors told that it might happen that it could improve overtime; I think that everything depends on the specific location and how the surgery goes.
Good luck!
Thanks for the comment. I'm in Canada so I'm not sure what the availability of this nova vision program is.. but that Nintendo DS sight training sounds fun! Which game/program did you use?
It seems like my vision is slowly getting better on my left side.. or maybe I'm just adapting to it. I still can't see anything in my lower left quadrant.. but I think my peripheral vision has expanded a bit since my first big headache.. if I hold out my two hands I can very faintly see the finger tips on my left hand.. before I couldn't see anything! so hopefully it will keep getting better in time!