Congratulations Eazy! Great news, AVM gone, now you can focus on recovery and put this whole thing behind you. Well done.
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Thats great news. Sounds like Dr.Baskaya did an excellent job.
Keep us posted with your recovery as time goes on =D
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Hi All! The craniotomy on Monday went as planned. It took about 8 hours and then they kept me sedated for about an additional 20 hours to keep my Bp really low. When I came to on tueaday afternoon and saw the date on the dry erase board in my icu room I thought they were playing a prank on me, not that they had kept me sedated 20 hours. My biggest risk for complications were Motor sensory deficits in my left foot. Luckily I seemed to have escaped that issue. Iāve been able to manage the incision pain/headache with Tylenol so far although neuro warned me pain may ramp up as Iām more active. I spent Monday - Wednesday nights in the neuro ICU. Stepped down on Thursday and was released on Friday around lunch time. They had me up and walking to the bathroom by Tuesday evening. They confirmed with an inter operative angiogram that they were able to get the entire AVM. It feels so good to be back home. Completely agree about intense hunger setting in now that Iām settled at home. Taking lots and lots of naps and sleeping about 10 hours per night. I was very active before (neuro had me walking 5-6 miles per day as pre hab), but definitely experiencing some intense fatigue. Just taking my time to recover and so thankful for thr skilled hands of my surgical team.
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I forgot about ārestā. Yes, catching up with yourself and allowing yourself plenty of rest is good. Well done!
Iām not sure what I would have thought of the date moving on more than I anticipated: I think your reaction that you were being pranked is a great one!
Keep on getting better! Very best wishes for a full recovery,
Richard
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Great to hear that all is going so well! Really fantastic results, now the secret will be is to take it easy and let the healing occur. Take Care, John.
Great news Jenifer, sounds like youāve come through very well. Be sure to rest up, Iām sure recovery will take some time and patience. All the best!
Jenifer,
Donāt feel guilty about napping, sleeping, resting. Your body craves it after neurosurgery. (Anesthesia is NOT rest!
) Iāve been post-op after neurosurgery and wish I hadnāt let others pressure me. āSounds like you are doing very well!
Hi Jenifer,
Glad everything went well. Did they embolize your avm prior to the surgery? How big was your avm and where was it located? Ill have to go back into the thread to find this info as you may have already mentioned it.
Keep us posted with your progress.
I hope you recover
Itās a marathon, not a race
Rest is super important, I did my best not to be in the computer and sleep as much as possible
Sleep was very painful the first 10 days
I had 50 staples in my head
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Hi Eazy,
I was curious how your recovery has been going and if you ran into any bumps along the way. Please share anything that you can.
Hope you are doing well.
My recovery has been going really well! I felt practically normal 2 weeks after surgery. My peripheral vision is improving over time and I donāt really notice the blind spot. There is a little subgaleal fluid (my head is squishy) near the incision site, but that is also reducing each day.
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Have you had to go back to see the neurosurgeon since you have been released?
I ask because I am contemplating on going to Dr.Baskaya (I live in Mass) if my insurance will cover it. My concern is once I am dismissed and head back to Mass, I wonāt be able to drive back to Wisconsin as it is a 20 hour drive.
What type of doctor visits have you had since your release form the hospital?
They make patients come back 2-3 weeks after surgery to get stitches removed and I have an MRI in about 2 months.
If you needed to you could probably get the same things done in Mass and have them send results back to UW hospital. The stitches are not complicated to remove and MRIs can be done anywhere. I had an MRI and angiogram at another hospital in Wisconsin and they sent those results to UW. That could be an option, but I am not totally sure.
The MRI is easy enough resolve. Its more so the stiches and any other complications that may arise. Not sure if another hospital or doctor here in MA would be willing to do that.
Are you on seizure meds currently? From my understanding its common to be put on them after surgery.
I was on seizure meds before and they will keep me on them until I get a clean 48 hour eeg in a few months.
If you arenāt on any right now they will probably give you some after.
Hello!
I just completed embolization and craniotomy two weeks ago in for an un-ruptured grade 3 AVM. I tried not to focus on the surgery beforehand and did my best to stay active; otherwise it was a little overwhelming. Surgery itself went very quickly and about a week after surgery I was feeling well enough to go home. I was surprised by how little things had changed for me. Iād occasionally note difficulty when choosing words, essentially picking one word and having difficulty forgetting it or changing to another word. But this has gotten easier over the last week. Iāve yet to start PT/OT/speech therapy but I want you to know that things can go really well after surgery. It is life changing and without a doubt my AVM would have ruptured if something hadnāt been done, but to be honest it doesnāt really feel like Iāve had surgery. I hope everything went well for you!
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Welcome, its great to hear all is going well for you following surgery! I had some word issues following my bleed, aphasia was the diagnosis, it has been fairly minimal lately. Iām able to know when it happening and choose another way to say things. It was interesting sometimes, the simplest things were difficult! Thanks for joining, and once again it is great to hear how well youāre doing. Take Care, John
Hi Vepic,
Glad things are going well! Could you tell us a bit about your avm? For example where it was located, how big it was, if you were experiencing any symptoms such as seizures, or other cognitive issues and lastly, where and who did your surgery?
Please keep us posted as time goes on. Peoples experiences post surgery help others like myself.
Hi All,
Just thought I would drop in an update. As you may recall, one year ago today, I had a craniotomy to remove my right-sided grade 2/3 AVM. I am happy (well, overjoyed really) to report that I have been doing really well. It took me about two months to get back my strength and energy levels. I donāt think they will ever be back to they were pre-bleed (november 2021) level, but overall Iām feeling really good and have been so lucky to have only minor lingering issues. I did have one minor setback in late October when they think i āmightā have had a small seizure. I was admitted for MRI, CT scan and EEG, all of which looked good and ruled out another bleed or stroke. At that time they also did another CT-A to confirm that my aneurysm was gone and that the AVM was fully gone. So that was all great news. I did have to go back on Keppra and will most likely have to stay on that forever. I did a 48-ambulatory EEG in January that showed some irregular brain activity in the locations of the AVM and the bleed so they want to be proactive about avoiding seizures. Luckily again, I have only minor side effects from Keppra (mainly fatigue, which I counteract with naps, a small cup of tea, good consistent sleep at night, lots of activity and no alcohol).
Iām now just trying to move on with life and not panic at every little twinge or headache. I asked my neurosurgery team how long it takes before I will feel comfortable that maybe the worst is past, and they said, maybe months, maybe years, maybe never. But they did tell me that they are here for me anytime I need them and that no twinge or headache is too small to bother them about.
I canāt say enough wonderful things about the care I have received at Georgetown University Hospital in Washington DC. I am lucky to live within just a few miles of this facility and their amazing neurosurgery group. Throughout this entire process they have been kind, compassionate, caring, attentive and I have always felt that they have my back. Theyāve even been there when I just needed someone to hold my hand for a few minutes before the craniotomy. When you think of neurosurgeons, you donāt necessarily think of them as touchy-feely doctors, but the GU team has been the absolute best.
I just wanted to say that this group has been such an amazing source of information, comfort, solidarity, and support for me and I really appreciate it. For a medical condition that is considered fairly rare, it has always been a constant source of comfort to know that you all are out there rooting for me and everyone else suffering from AVMs and that Iām not alone.
And now time for a celebratory dinner with my family. Thanks again for always being there!
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Thanks so much for the update, really good to hear! Enjoy the celebration! John