Hello to everyone whoever supported me and gave me the best advice,
I have been home for 17 days now and have had a remarkable recovery. I have not lost any vision and I can walk and lift up to 25 lbs now. I have had the best care from Harborview in Seattle and the best nuerosurgeon. I see him on the 9th for a MRI and ct exam and then hopefully adjust my restrictions. I probably will be on the anti-seizure pills for six months and really hope that I never have one again. I’ve had a lot of support and I really appreciate everyone who kept me going. I quit taking my pain meds officially today and seeing how that goes. I switched to Advil.
For details for those who are curious:
I’m 27 and had an AVM on my left occipital lobe (back left of head) and before it I had 4 embolizations (one took two mornings because of minor complications) and 2 angiograms (the last one was after surgery when I was sedated to confirm removal of the avm).
I’ll be honest, embolizations didn’t get easier for me because one took two days and so I couldn’t move for almost 24 hours but I don’t know if that is rare or not. And recovery from each was 7-9 days for me. Make sure your doctor gives you lots of pain meds
I had very bad headaches my first embolization and no more oxycodone. The second one, I was prepared. Your leg hurts, specifically groin when you move it but it should be completely manageable with meds.
As for my final recovery, I was in the hospital for 7 days and started walking by my 3rd day. The pain is pretty bad if you don’t ask for help managing it. Its hard to sleep… But you can figure out which position suits you. My neck was stiff from surgery and sleeping so I have physical therapy which is really helping. Get a medicine week thing to help you keep track of meds, it helps. Try to increase your walking to help with recovering. If you have an embolization before the surgery, you won’t feel pain in your leg at all for me anyway. I had some minor visual issues for the first week out of the hospital but it went away quickly and then I had some headaches but minor ones and the best thing to do is try to sleep and take pain meds. I rarely get those anymore. I haven’t slept on my back yet but I still have pain to the touch on my right side of my head. I think that will be better in a couple days.
So try to keep positive and family support helped the most for me. I could not have done it without my mother there. Pick a neurosurgeon with a good reputation and believe he/she will take care of you every step. Look forward to not having to worry about strokes anymore!
Also I have those visual issues after my embolizations due to the location of my avm I think. It was basically a blurry line in my vision that moved. The colors I saw before my seizure. Just be aware it was temporary and goes away when I calmed down from stress. Also my mom bought a blood pressure cuff because managing it below 120 was important to my doctor. Luckily I had good bp anyway 110-115 normally and resting was 103-105. They cost less than $100
Thank you! Your guidance and support meant a lot to me. Man how time flies… Even though I’m still recovering but much faster than I imagined. Cheers to healthy lives!!! God bless to you too and keep in touch
Hey Chelsea, my craniotomy was done on 13th nov 2015.(after GK in 2003 that seem to be failed).
In recovery mode now and feeling great!
Congratulation for being AVM free and sharing the news .
It’s great they got it out. Every case is different but I haven't had any seizures since undergoing craniotomy back in 2013 to remove occluded AVM in left parietooccipital region. Actually after surgery my need for anticonvulsants decreased. By two months post op I was able to go off all meds for my VEEG study without triggering any seizures which was very encouraging. By the end of six months I was off all meds and as I mentioned have been seizure free ever since. I did lose some vision but not much. Now I sometimes need to wear glasses to read very small print but that’s true for a lot of people my age, even those without a history of AVM. I initially had some right side weakness and have had to do therapy. I was on a walker for a few months and a cane for a couple months. I would have probably done best with a good solid strong year of physical therapy however because of insurance limitations I’ve had to do it in stops and starts and what could have been accomplished in 6 months to a year of good, intense, consistent therapy I’ve had to space out over time but in any case despite this obstacle I’m almost back to normal and up to full speed. In any case all of this was pretty good considering the AVM I had was considered inoperable and doctors told me if they removed it I would be left with paralysis on my dominant side as well as possibly lose an unacceptable amount of vision. Harborview is where I had my first angiogram and met the surgeon who would later wind up becoming my surgeon at Swedish after he transferred there to run their neuro department.
Congratulations Chelsea! Back in 2003, my AVM required 3 embolizations prior to my Craniotomy. I’ve lost “some” of my peripheral vision, however, it’s very managable and not a problem. I still have problems with my short term memory though Congrats again on the success of your surgery and now being AVM free! You seem pretty young and I think that helps alot in your recovery! I was 43 when mine burst… best of luck to you!
So you must be AVM free too? That’s awesome! Thank you for the nice words. Each day gets better, even the bad says. I hope you have a speedy recovery take care
Wow that is just what I needed to hear today. I’m so glad you were able to go off the meds successfully. I don’t want to live in fear but it crossed my mind when I read some stores. Also sorry about your vision loss but really glad it’s minor and I wear glasses since I was a kid haha just normally it’s contacts. I’m glad to hear you pulled through your recovery of a walker ect. Omg inoperable? You are such an inspiration! I feel so blessed to live here and have the best care. I’m so glad you managed to have surgery and got rid of your avm! Yay! Thank you for sharing your heartfelt story. I really appreciate it and hope you have a happy life
Thank you very much I’m sorry about your vision and memory but you seem to have the right attitude and I’m glad it was a minor vision loss. Technology is so different now but yes I believe my age has helped me immensely and that I have a guardian angel on my shoulder.maybe my dad. I hope you are doing well now and thank you for sharing. Take care and God bless
omg Chelsea I'm so happy for you!!! really!! CONGRATULATION! I'm almost crying for this awsome news!! I have an AVM in your same area of the brain, mine in 4cm big and doctors say I will be free from AVM when I'm 27 (now I'm 23). This will take so long because they prefer to treat me with cyberknife. Hope your life is better now, YOU'RE FREE!!!!!!!!!!!!! <3
and thank you for all the support
Congrats again on the success of your surgery and now being AVM free! You seem pretty young and I think that helps alot in your recovery! I was 43 when mine burst… best of luck to you!
and thank you for sharing. Take care and God bless