Embolization and craniotomy resection and freaked out

Thank you for thinking about me.

1 Like

I’m so glad the first embo went well and that you are happy with your decision. It’s important to feel good about your medical team.
You’ve been on my mind. I just remember how hard the waiting is. We had some insurance issues and we on the way to the hospital we found out my surgery had been cancelled. Then we spent a week ironing it all out and getting a second surgery booked. Hard enough psyching yourself up once, but doing it a second time was really the icing on the cake.
Hopefully all goes as smoothly as possible for you

2 Likes

I’m so sorry that happened to you. I received correspondence from my insurance that the embos are covered but I haven’t heard about the surgery. I just always expect something will go wrong. Probably not the best way to go through life. Oh well. Thanks again for thinking of me.

1 Like

Hi Pam, Wishing you all the best for your embo tomorrow and the craniotomy the day after. Let us know how it goes.

2 Likes

Thinking of you Pam, wishing you the best over the best couple of days and look forward to hearing from you when you feel up to it. Take Care, John.

2 Likes

Thank you. I am also hoping all goes well. I’ll post as soon as I can.

This is Mark,the surgery went perfectly,it took about six hours.
Pam is in a lot of pain.

1 Like

I’m so grateful that others shared their experiences so that I had a better idea of what I might expect. Yes, right after surgery is the worse pain. If anyone has more to share I really appreciate the wisdom and experience.

1 Like

Great to hear from you Pam. Take Care, John.

1 Like

I’m glad it went well. I was exhausted and slept a lot. When it came to moving around I just kept slowly increasing what I was doing. The hardest part is taking it slow and listening to your body. You’ve got this!

3 Likes

Great to hear it all went well PamR.
I can only give +1, but +100 to this comment

Merl from the Moderator Support Team

1 Like

It’s a mess at New York Presbyterian Hospital. I’m trying to get discharged to catch my flight home. The ceiling over my Hospital bed has been leaking since yesterday and asbestos tiles just fell over my Hospital bed They put me in the hallway and I’ve been waiting for the neurological team to take the drain out of my head but the nurse has pages them numerous times. They don’t know what to do about the drain. WTF this is all true. I have videos and pictures.

Oh my gosh!

Hey, hope you get well soon and feel more comfortable, whatever the state of the hospital!

Well done for getting through successfully!

Very best wishes,

Richard

3 Likes

Hey Pam,
The state of the hospital doesn’t sound good BUT in all honesty, not your concern. Your concern now should be 100% on your recovery. Drains can be real difficult to manage depending on how far internally they go. If the are draining from within the arachnoid space (outside of the grey matter) they can be easier to manage. If they go all the way to the subarachnoid space (the very middle of the brain), that’s much more involved and each neuro will have their own opinion on how to deal with that.
I have had both types of these drains for differing surgeries. For the arachnoid, they removed the entire drain, for the subarachnoid they left the tubing within the grey matter in place and cut it off level with my skull.
This may sound easy/simple, but I know it’s not. But you have no control over any of this, from here it is all up to the medicos. All you can do is concentrate on your recovery and let the dr’s do their thing.

Merl from the Moderator Support Team

2 Likes

Oh no. I hope they got it all figured out and you got home safely

1 Like

Hi Pam,
So glad to hear your surgery went well.
It can take the nurses a few days to figure out what mix/types of pain medication will work for you. Everyone told me, don’t be brave, this is not the time, ask for more pain meds as soon as you feel the pain increasing.

2 Likes

Thank you all for your support. I’m home and glad to be here but not happy with the pain. I still don’t know who will remove the staples. My pcp said they can do it but really!

Hey Pam,
Yea, your pcp can remove the staples. They are superficial, outside of the skin, and not difficult to remove. The pain, ohh that can be a real B&%$#*@ to manage. But you’ve just had major, MAJOR surgery. DO NOT DO WHAT I DID. I pushed my self to return to work, I did not listen to my own body and pushed too hard, too soon and did myself more harm than good. Ahhh, don’t do that. Some people have come on here before and asked “How long until…?” And the answer is ??? Everybody is individual, some can recover unaffected in a relatively short time, some it takes a bit longer and then some can have lifelong after effects. DO NOT be trying to judge your own recovery by how someone else has recovered. Yours maybe shorter and that would be fantastic, but then yours could be longer and that can be a little difficult to accept. I’ve had the ‘joy’ (NOT) of this neurosurgical journey a few times. The first recovery was a challenge, but I recovered quite well. But with each surgery the recovery has been more and more difficult, with the last operation really knocking me badly. That was in 2013 and the dr’s haven’t allowed me to return to my former employment and I’ve been told I probably never will which has been really difficult to accept, but I really have no choice and this is a fact I hate.

Recovery is a marathon, not a sprint. Take the time you and your body needs, no matter how long that is. Listen to your body, it will tell you.

Merl from the Moderator Support Team

1 Like

Hey Pam, sorry to hear you are still in pain.
My family doctor also removed my staples. It was 2 weeks after my surgery. The nurses at discharge gave me a little cutting tool to give to my family doctor for this purpose.
Your family doctor is also the person to see to assist you with pain management.
As @ModSupport said, get lots of rest. Don’t have any expectations of yourself for the first few weeks at all.

2 Likes

Well having my pcp remove the staples did not go well so I’m on the train back to NYC. Ugggg I’m also feeling like an opioid seeker at this point.