Thank you for adding me in your group. On march 1 i have to go in for a clipping. My annie was found because i had an eye stroke. I feel like someone was looking out for me. Im in Massachusetts and there is no support groups in my area. I winder what im in for
Leah, one way you can access support groups is through the online community like ours. There are also four I found in Mass here https://www.bafound.org/support-groups/?states=MA. You may have to look at the other States closer to your home.
There’s also the Joe Niekro Foundation Support Group Locations | Joe Niekro Foundation
I hope your doctor gave you the run down on clipping and the rules you’ll have to follow before and after. The members here who have had craniotomies can help as I have never had a craniotomy so no clipping, just coils, more coils, coils with balloon assist and then finally a stent with more coils. With those four procedures and the angiograms that accompany them, I can provide suggestions for how to somewhat prepare for the before and after your craniotomy. It’s important to breathe deeply and slowly all the time.
The Before
I call this getting my House and house in order. House with the capital is attending to my spiritual beliefs, house is my home. I try to get all the heavy work done before, if you need help ask friends, family members, church members if you attend church. Never be afraid to ask for help. I usually do yard work if the season is correct, laundry, mopping, vacuum, clean the bathrooms, etc. I find it to be helpful because I concentrate on those things and not another procedure. We also do grocery shopping so I’m well stocked on easy things to fix for meals that BH won’t be home to do. Several times we’ve made large meals that we can freeze or separate into different types of meals and it makes it easier on BH. We have a couple of friends that sometimes brings over an easy dish to heat up. We also do the light housework. A time or two I have cleaned our car inside and out, because the hospital I go to is a 60 mile drive and it’s nice to be in a clean vehicle.
The After
Rest, hydrate, eat protein, hydrate some more. Your brain needs all three to heal and I can’t stress the importance of this enough. Follow all the rules your doctor will give you, they’re also extremely important. Make sure you can access the triage RNs associated with your doctor or you know how to access their NP or PA through the patient portal.
I’m hoping some of the members who have had craniotomies can come on and let your know more. Just remember to breathe and hydrate. And as @oct20 reminds us, don’t smoke and keep your blood pressure regulated she has a bunch more but those are the two I always forget…
I also placed this in the General category as not every member reads the welcomes. I apologize I didn’t catch it yesterday
All the best,
Moltroub
Leah, I just had my clipping done 3 weeks ago. Like you, I was feeling nervous and not fully prepared for what I was getting into (though how can you ever be prepared for something like this).
I agree with Moltroub completely! Before the surgery I spent ally time preparing my house. I cleaned and cleaned, bought a after surgery pillow (one that completely props you up), made sure I had lots of cozy comfortable things to wear. Wow, I can’t tell you how much having cozy pajamas have been comforting since surgery. All of getting the house ready was a really good distraction leading up to surgery.
The couple days leading up to surgery were really tough, but once I was in the hospital and signing in, waiting to get prepped, it started to feel real. My prep team was amazing and they must have given me a nice drug to calm down because I don’t even remember being rolled away. Very small memory of a room with lots of medical stuff in it, then the next thing I knew I was being woken up in the ICU surrounded by my family.
I was in a lot of pain from the position they had me in during surgery, but the pain went away after the first day or so. They will help you with pain control in the hospital, don’t hesitate to tell them EVERYTHING you are feeling. The nurses are so helpful!
My story, like everyone’s, is my own, so my experiences won’t be the same as yours, but my ultimate take away has been communication with your doctor’s and nurses is key…they will help you feel secure and heard during the process.
Pain management is necessary, but the most pain goes away after a week or so. I am experiencing some headaches and incision pain 3 weeks out, but the incision is really healing well and I think most pain is due to the fact they had to cut through a muscle in my temple.
I’m up and doing my daily activities. I’ve been walking a little every day since surgery. First few days it was just a couple minutes up, then after just a week I was walking half a mile. Today was the longest walk I’ve taken so far…1.5 miles!! The fresh air has helped me so much. I’m also able to now cook on my own!
First two weeks there were small wins like being able to dress myself and showering alone, but 3 weeks out I’m feeling very capable of doing things, though I am tired a lot. Just listen to your body and if it says rest, rest, if it says eat, eat. Lots of protein, water and rest, just like Moltroub said.
Good luck with your surgery!! Let me know if you have any questions, I’m happy to give more detail!
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Leah. I’m not sure what part of Massachusetts you are in, but there are a few groups here for survivors. In Boston a group began at MGH. It is virtual right now on the first Tuesday night of the month. The team that treated aneurysms at MGH moved to Beth Isreal and now they host a group. I think it happens on the first Wednesday of the month at noon or so. I think there is one down the cape too. Regardless, you are more than welcome at any meeting. I can speak for the MGH meeting that there are people who attend from all over the country. Maybe not consistently, but on occasion. So you can likely go to which ever group you want. You will undoubtedly make friends wherever you go. Good luck next month. Brian
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Thanks Brian ill have to catch a meeting next month. My clipping is Wednesday March 1. Really nervous. But im sure i got this.
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Huge help rhank you
@Leah
I wish you all the best for your upcountry surgery.
It’s normal to be nervous about it but I hope it will be a relief when it’s over. Please get back to our community when you feel ready for it, it’s a huge help for others going through the same situation.
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Hello, wish you luck and health. Could you please tell me size and location of your annie? Mine is 2 mm and doctors don’t hurry to do a surgery. Thank you
Hi Tamar mine is 3mm MCA its my choice to jave it fixed. I cant live knowing i have a time bomb that can go off at any time. Im quite anxious but i want to be here for mu family.
Surgery done on Wednesday march1 best team I could have asked for. ICU for 3 days not much pain just a lot of fatigue. The one thing I can advise is to listen to your body. Rest or just close your eyes and be calm. Still a little uneasy on my feet like dizzy but I’m sure that too will pass.
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@Leah
It’s good to hear from you again. I’m happy to hear that the surgery went well.
Take it slow and rest. I’m sure it is a relief that it is over.
Take care and remember that slow and steady wins the race.
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Wow you are brave to include the pictures. I can’t speak to what you are going through since I had a rupture. But there have been people that I met during the support group who had incidentally identified aneurysms clipped and their recovery out of hospital was quick, but you still need to remember that someone was in your brain messing around. That still take time to recover. Take it easy!
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Hi Leah,
Wow your incision looks really good, they did a great job! I’m incredibly impressed you were able to write an update after such a short period of time. I’d love to hear how you’re doing. Remember to take it one day at a time.
Yesterday marked 2 months since surgery for me. I think everything started to catch up to me after my 4th week. The last month has been up and down - lots of fatigue and days I can barely get out of bed, then days with lots of energy…I’m up to walking 3 miles! I think the hardest thing is knowing when to stop and say, it’s ok, you’ve done enough for the day.
I’ve had days where I’ve felt like I’m good, do lots of stuff and the next day I’m so exhausted I can’t move. I’m just trying to focus on staying active, eating well and not overdoing it. I hope this helps you in your recovery. All the best to you during your journey!
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I also have good days and bad days. I’m hoping to go back to work soon. But some days I’m so tiered how long does that last?
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It depends on which piece of string you use to measure it with!
Honestly, it seems completely variable 
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I have no idea either. My neurosurgeon said everyone’s recovery is different, but she told me before the surgery that I would be exhausted for a very long time.
I’m considering pushing back my FMLA by a couple weeks or a month.
I hope for both of us the good days start to outway the bad. I understand completely. I get so worried on the days I’m too exhausted to do anything. I can’t imagine going back to work feeling that way.
My fear as well. I am a teacher and Ivam trying to set things up the best I can beforehand.