Hello Becky, my AVM was in the left temporal & posterior frontal lobes and I had some visual problems, however, with rehab for a while, the visual problems got better. I think most things just have to take time to heal. I hope all goes well for you, so all the best with your surgery, you are in my thoughts and prayers, Lesley.
I wrote something similar when I first found out about mine and was contemplating the Craniotomy. I have my AVM in my Right occipital lobe as well, and my BIGGEST fear was losing that peripheral vision. Since then my surgeon has told me that the risk of neurological Deficit form the cranotomy is about 2%. That is pretty darn good if you ask me. My AVM is unrupptured as well so that adds to the % of problems going down. After my angio, I noticed some vision changes and such, but that is supposedly common. I have my 2 procedures (embo and cramiotomy) next month the 21st and 22, so I will be sure to let you know. Just know that you are not alone and I was in your same place being afraid and wondering just a month or so ago
Read the story I have on my personal page. I had both a stroke immediately following my craniotomy and a loss of peripheral vision on my right side.
Hi Becky, be strong and positive, i had my op, 3 days after my bleed/stoke, i was broken and in tears, yet deep within me, i felt positive and knew all would be ok. What the medical specialists can do is magic!! i do still have trouble judging as i walk through a door and may may walk into it with my left shoulder but it gets better all the time and gradually you dont even realise how much progress you are making, it all becomes so natural.Mine was on my right, hence my left side, my surgery was only supposed to be 6 hours but ended up being 9 and i stll dont know why. they did remove my avm and repaired vessels. then its just time, positivity and support, all the best!
Hey Becky. My AVM was in my right parietal/occipital lobe. Like Ninibeth, I had a massive bleed. Docs had to let my brain recover a little (2 weeks in induced coma) then had angio., embos. and finally crani. I did lose most of the vision in my left eye, but I believe it is a result of the bleed and not the surgery. I can’t comment so much on recovery as mine was very different since I did have a bleed. The best of luck to you Becky and know that we are all here for you!
Becky, my experience was sudden and swift. A dilated left eye with a severe headache led me to see my ophthalmologist (who saw me the same day because of the the description I gave to his assistant). My doctor examined me to find that the dilated eye was not at issue, and he wanted me to have an MRI immediately. Obviously he sensed another issue and was careful not to scare me, but wanted me to know the urgency just the same.
After many attempts to get me in to have an MRI, Dr. Fishman (my ophthalmologist) paved the way, and talked me into going to Stanford Emergency. It was there, through many tests, including a spinal tap, that an MRI was performed (after being admitted to the hospital) and the AVM was found. I can’t believe that I was living with an AVM for almost 61 years before discovery. The neuro-radiology team at Stanford was the best in the diagnostic and angiogram performance department. However, after much research (West Coast and East Coast), my craniotomy was performed by Dr. Michael Lawton, MD, neurosurgeon at UCSF.
Dr. Lawton was referred to me by seven (7) different resources, and after meeting with him, it was clear why. He is absolutely phenomenal! The surgery was done without first having the gluing procedure (sorry haven forgotten the proper name of the procedure) … which Dr. Lawton felt in my case was not necessary. He felt he could remove the AVM without a bleed … and indeed he did.
One would not have even known I had a long incision by the way he trimmed/shaved the area to be opened up … amazing job. The pictures are awesome … to see the before and after.
Anyway, the surgery was a great success. I was in ICU for two days and on the neuro patients ward for one day. I did have visual blurriness which dissipated after a couple of months. I recommend having visual field testing done before the surgery and again a month or two after the surgery.
It was one month from finding the AVM to taking it out. That had to do with the fact that I wanted it taken care of stat … I wasn’t obnoxious about it, but all knew I wasn’t sitting around waiting either. It has been one year and two and a half months since my surgery. I was back at work part time in two and a half weeks … way too soon I might add!! That is another story.
I was blessed with great support, a fabulous doctor and medical support, a patient husband, sister and friends … not to mention a wonderful therapist!
If you haven’t already set this up, I highly recommend that you have an advocate with you at all doctor appointments/pre-op/hospital stay, etc. The advocate can be a family member, friend, medical professional (other than the ones attending to you), etc. There is way too much going on from the time of AVM discovery to recovery to go through this without support with you/around you 24-7. I truly believe the support I had/have is what got me through with relative ease. Having someone take notes for you during appointments, holding your hand (so-to-speak) or holding you up, laughing, etc. is really important.
Finding out what to expect after the surgery … one month after, three months after, six months after, etc. is also important to discuss with your doctor(s). Six month after my surgery I started having skull pain that increased to the point that my surgeon had to refer me to a neurologist and pain specialist. The issue was fairly quickly diagnosed … having to do with severed nerves and regeneration … and dealt with successfully, but had I known that the issue is fairly common and what to do if it did occur, would have eased some stress.
Ingredients for my success: Top medical professionals, second and third opinions (or as many as you need to feel you are on the right track), advocacy 24/7, patience of those around you, don’t stop asking questions and pursue until you get answers, if you feel something isn’t right stay on it (trust your gut).
There is a lot more detail to my story of course, but in brainstorming fashion, the above captures the essence.
I wish you strength, tons of love and support all around you during this time and in recovery. Best wishes, Sharon
P.S. The dilated eye had nothing to do with my AVM by the way … it got me to go to the doctor but there is no connection to the occipital lobe … Divine intervention is my guess.
My son had an AVM removed from his left occipital lobe. We discovered his AVM when he experienced a massive bleed, and lost his peripheral vision at that time. The recovery from the surgery was swifter than I expected. I expected his skull to hurt more than it did. The biggest post-op complaint from his was that his incision itched (and still does a year later). He also had neck and upper back pain from not being able to put pressure on the back on his head for over a month. He was out of the hospital in a week (5 days in PICU, 2 days in the regular ward), and back to school in 6 weeks. He was back to regular physical activities iin 3 months. As far as we can tell, the surgery didn’t create any new problems, and all of his on-going issues are from the bleed. There was short term irratibility, memory issues, and frustration.
hi becky i had a crani in june this year to remove the avm located in my right lobe. i suffered a haemhorrage during the crani which was thankfully controlled however it was this haem that gave me left sided weakness. i am now at a rehab hospital learning to use my left arm, hand, leg again. i will soon be discharged but it has been frustrating. i also have some loss of vision in my left eye.
i really hope your surgery goes well becky and wish you all the very best.
Ok As I replied here about…well back in September I was having an Embo and Craniotomy in my Right Occipital lobe. I am a week home from surgery and I would be glad to tell you ALL about it.
I won’t go into much detail about the embo as it seems you are just getting the craniotomy. It went very well, TOTALLY different then I expected. I was in the hospital the night before because I had the embo the day before, and after that one I felt like run over dog poo. But they took me down to surgery, there were about a million Doctors in the OR, just EVERYWHERE ( I also had mine at a teaching hospital so yeah) but there were a lot of equipment in the room and it was very overwhelming. As they put some meds in my IV for some reason probably my bad veins it hurt and I freaked and started to cry. One of the many anesthesiologists hushed everyone in the room until the room went quiet. She told me not to cry that I was surrounded by professionals and they would do everything in their power to make sure I was alright. Then they put the mask over my face and out I went. They say it feels like 3 minuets, but for me I actually felt a passage of time. I woke up, I had some trouble seeing, but it was mostly all the drugs they gave me. I was VERY loopy. But I remember most everything. I was talking sitting up joking and perky. There was no bandages or anything like that, just 25 staples in the back of my head. It didn’t really hurt at that time. I got some dinner and again even though I was having some trouble seeing fully I could identify what I was eating it was like…seeing cut out silliouetes of things, but still knowing what they are. And I could read just fine. I had dinner, talked with my family, and slept. SO right after the actual craniotomy I felt great. Not so much a day or 2 later but that was more the nurses. I got out on a Monday ( the surgery was on a Friday) and went home
There were some things that no one warned me about that I will tell you. #1 lights. If you have lights on dimmer switches make sure they are ALL turned down and that you have a good pair of sunglasses, cause you WILL be wearing sunglasses in the house. Make sure your room has good curtains and change the brightness on your TV and computer. Otherwise it will give you massively bad headaches. #2 noise, have your friends and family start practicing talking in a whisper to get in the habit, cause a lot of noise is also very difficult to deal with. The last thing is just being cranky. You brain will be swollen, and you may be a little confused and have some vision problems, but just remember you JUST had brain surgery no one will say anything mean to you, so just try your best. I have noticed that my left upper proriferal vision has been effected like they said and that does scare me, at this point we do not know if it is temporary. I get my staples out next week. I am SO glad I redound this thread so I could hopefully help you out with your journey.
Just as a side note. Mine did NOT bleed. I found it by accident, so my embo and Craniotomy was planned and we had no complications. Just letting you know.
My AVM was in my right occipital lobe. It was removed in 1996. I lost vision on my left side. (Yours must be in your left occipital lobe). Other than loss of vision, the only other problem I’ve had is seizures, which I have to take medication for. Good luck!
Sounds exactly like mine was, Becky. I had the surgery on May 19th and he used the glue and completed about 65% of the gluing. I was, or will, go back for the rest when I can get my courage up but actually the only problem I have had since then is the periperal vision in the right eye. otherwise, I was out of the hospital in 3 days and have not had any problems since. I had this done in the Upstte University Hospital in Syracuse N.Y.
It’ll be fine and I wish you a God speed on getting yours done soon.
I recently had a craniotomy for an AVM in my left occipital lobe. Because of the fact that it had bled and the size and me being symptomatic they recommended it because it is the only way to guarantee that the AVM would be removed without the risk of rebleeding. Basically prior to my surgery I had a hemorrhagic stroke because the AVM bled and I was symptomatic with my peripheral vision gone which eventually returned as the swelling went down and the blood was reabsorbed. I went ahead and had the craniotomy and I feel amazing (I am a relatively young person) ... my symptoms that I had prior to the surgery are gone, my vision is fine and I was seizure free post-operative. The thought of surgery was very unnerving but I decided to go ahead and do it and I am glad the doctors said this was my best option and I don't regret my decision to have had the surgery! There are risks and complications to everything in life and if I can offer you one piece of advice if that is what doctors are recommending listen to them as they know what they are doing and talking about! They do have to shave your hair but the way I looked at it was I shaved my hair prior to the surgery and donated it to cancer for wigs to be made for patients undergoing chemotherapy. I thought it is only hair and it grows back and this way I was able to control what my hair looked like in the end versus having a surgeon shave a chunk of hair and leaving some ... this way your hair doesn't have long patches with a completely shaved patch.
I wish you the best of luck and a speedy recovery!
My then-10-year-old daughter lost her vision center-to-the-right in both eyes at age 10 as a result of her surgery. Today, 15 years later, she's going back in for surgery soon for a small AVM that has cropped up (or was left behind) since.
Her vision loss has not been hard for her to adapt to. She bumps into things on her right from time to time, but she takes that in stride. She drives as part of her job, and has a terrific driving record. Reads, writes just fine.