Surgery day tomorrow (update)

Well I made it through​:upside_down_face: it is going better than I thought it would. My extemities still work, I can speak, I can remember, I can think etc so I call it a smashing success. I do have a bit of numbness/pins n needles by my chin/lower lip, and I did lose the abilty to focus my eyes for a bit which has drastically improved… I am also battling a ton of dizziness however we do not know if that is attributed to the surgery or the slew of medications I am currently on. I am on both dilantin and keppra for antiseizure meds, antibiotics, tylenol, dilaudid, prilosec, dexamethazone for brain swelling, and insulin for the blood sugar that is artifically raised by the dexamethazone. They placed 3 clips, additionally they placed titanium mesh in my head over the craniotomy location as my skull was a complication. The 2 hour surgery became a 5 and a half hour surgery because my skull is thicker than normal…the Dr.explained the issue to me before I went back. He couldnt use the typical jigsaw for the craniotomy, so they had to drill the entire skull plate out. Because of this issue they added the titanium mesh to alleviate what would have been some decent denting in my skull. Also extra grateful as he said the aneurysm was exceptionally thin and was ready to burst imminently. So thankfuly to have found it ahead of time and make it both to andtl through the surgery​:smiling_face_with_three_hearts::brown_heart: Dizziness or not I have already had my 1st walk up and dowm the hall.

@Abbycat70 you wanted an update
@Moltroub over here I placed the update.
@oct20

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Oh my gosh girl! You are doing wonderful! Thank you so much for the update! When Dr. Q-W warned me she may have to do a craniotomy, I thought she used a Dremel and asked if it was a corded, air or battery one :crazy_face::joy:

I did have to chuckle when you wrote you have a thick skull. Did your parents ever tell you that when you were a child and get a head bump? Mine certainly did🤣

Thanks again for the update!

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@Mnmandy
WOW!
Wonderful news!
Rest and follow the doctor’s orders. :heart_hands:

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I am so glad that everything went well! Yay!!
:+1:

Wow! Well, let us know you continue along. I have heard there is a lot of exhaustion. But. Yay for you!

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@Abbycat70 I have had problems sleeping actually. After coming to from the anesthesia I had basically a bout of anethesia induced sleep apnea. I don’t have sleep apnea as a rule, but started to stop breathing after the crossover from resting to actual sleeping and it would wake me up. Again and again. That eventually wore off however I still couldnt sleep we assume that to be from the decadron (steroid). Even with dilaudid I couldnt get over the insomnia until we added in some benadryl. The benedryl and dilaudid combo finally got me 4 hours of on/off sleep. Today we stepped down from dilaudid to tylenol 3 from my 8pm meds forward, so we will see how that does for allowing me sleep. I think we are also starting to wean the steroids. To be clear I have been exhausted…just not really successful in being able to sleep. That part is slowly coming back together.

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I think I get to go home either today or tomorrow! Things are going fairly well I feel. I mean obviously I am sore, tired, and swollen etc, but I have very little deficets from the surgery and I couldnt be happier about that. I am up walking around etc. So happy!

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I love it! As I have been told, I should not base my upcoming surgery around someone else’s experience, BUT it does my heart good to know 1) you are okay and feeling pretty good and 2) it is nice to hear such good news as it gives me hope that I may have a good outcome like you! :blush:

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Oh my gosh, who gets to sleep in ICU? The RNs are checking every 15 minutes and the BP is pumping up all the time not to mention all the machines. I bet once you’re home, you’ll be sleeping fine in a couple of days! I’m so happy you get to go home!

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@Moltroub
@Mnmandy
No it’s not possible to sleep in the ICU.

What’s your name?
How old are you?
What year is it?
Where are you?
Why are you here?
Who is the President?
Lift your right leg.
Lift your left leg.
Raise your right arm
Raise your left arm.
Squeeze my hands as hard as you can.
Smile.
Stick out your tongue while smiling.

Add to this all the beeping monitors and the sound from the other rooms.
I don’t know if they have a difference protocol for others, but this was my reality after I ruptured and had my vasospasm.

EVERY…… 15……MINUTES…….

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True that! Being home is nice even if I do feel like a trainwreck. And all the weird head feels are interesting so far i get the creepy crawly sensation, sharp shooters, numbness, fullness, glug glugs, crunches…just a random slew of feels🤣 Its a tough recovery even when its a really good recovery, but I feel blessed that we caught it in time and very happy to have my cognitive functioning intact.

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@Mnmandy Congratulations, you’re on the other side now, but now comes the recovery. As I’ve to others 'This is a time to be kind to yourself and listen to your own body. It will give you signs when it’s had enough, you have to recognise those signs and look after you. Personally, I found the slower I took my recovery the ‘smother’ the journey. When I pushed it I had peaks of energy, but then dropped way down, into a trough of symptoms. Slow and steady is much easier.

.
@oct20 AND YOU LAUGH??? I get SO VERY annoyed. :rage: : :roll_eyes:
“If you do not p*^%$#%^ with that torch it’s gonna shine some light in places it ain’t never seen”
I’m like a bear with a sore head after. NASTY. No, SUPER NASTY. I can shred a carcass …just with my tongue.
A bright light in the eye is the very last thing I needed
I know they have to and I know what they looking for but I am not a nice patient (or so the wife tells me :roll_eyes:).
Add a headache sent from the gates of hell and my venom level skyrockets.
I’m better just left alone.

You rest in ICU, not sleep. The place is a hive of activity.

Merl from the Modsupport Team

I’ve been balancing pushing a lil and resting adequately. My main worry currently is my son decided to get sick sick, so I have him quarantined to his room, but I CANNOT even fathom coughing and sneezing right now, so thats a bit of stress. I’m puffy and my daughter says I remind her of megamind🤣 these steroids got me with a bit of insomnia and a little more irritability than my normal but overall doing ok. I am leaving warm lights on trying to slow adjust to my light sensitivity and sometimes too much input (movement, varying depth peceptions at once, etc) knock me a lil loopy, but overall Im tolerating it ok. Just super grateful for my cognitive functions and intact movements. Just working through all the many “little” things we usually take for granted. Feels like im floating through a ton of just off sensations🤣 Truly amazed though at how well the main things are going.

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@ModSupport
I apologize. I will remove it.
I actually agree it’s not funny at all. Maybe it’s my own way of processing things about the brain bleed. We get sleep deprived that’s for sure but it is for our own safety, the only way to check our cognitive and physical abilities.

Ohh no, no. I wasn’t criticising your post, not at all @oct20
We all have differing journeys and I think it all needs to be discussed and expressed in our own ways (so long as it’s not offensive). Some people can bounce back relatively unaffected, for others there can be lifelong issues. We need to hear the good, the bad and the ugly of it all. Prior I was given the ‘candy coated’ view and got the shock of my life when that didn’t actually occur.

I’ve required a few neurosurgeries and none of them have been the same in recovery. I think others need to hear ALL of those differing stories because my scenarios didn’t exactly go to plan, so rather than :rofl: I was more :rage: :tired_face: :grimacing: If others on this route only hear one story, mine, and think that’s the ‘normal’ outcome, they’d avoid it like the plague. The more holistic our individual experiences are the better overall view others can obtain.

But please do not be taking my post as being something you need to be apologising for, NEVER.
I am yet to hear of 2 patients having exactly the same experience on this journey. For some it can be like a peaceful Sunday drive, for others the rollercoaster from hell. Our members need to hear all of those experiences.

Merl from the Modsupport Team

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I’m odd because I laughed as it’s exactly what happened with my stay in “spa therapy where I didn’t even have to wipe my own arse”.

The first thing I thought of that neither of us mentioned is to follow the light. I’m with Merl on the light - why do all the medical staff carry little led pen lights? Why can’t they carry regular pen lights? Are they trying to see through our skull? One RN tried the bulkier older style but the batteries gave out and though it felt much better, I think they trashed it. Some residents go way to fast whilst others and the RNs are more considerate and slow it down ten notches. I had to go to the ER where I had my surgery once instead of the local hospital and I must’ve said I didn’t want anyone blessing me with the dang led light because the wonderful Resident there told me she wasn’t going to bless me about ten minutes later and she didn’t. I didn’t realize I was speaking really, really loud when I said I didn’t want to be blessed with the dang led flashlight and I asked her how she knew. She looked me straight in the eye and said “It’s in your chart - do not bless with led flashlight on the first page in big bold red letters so she did the Star of David :rofl:. Then they had to move me to a nice quiet, dark room because some poor woman was screaming and moaning in pan in the stall next to me. She had a lot of medical staff in the little cubicle separated by curtains and one guy kept bumping into me which sent my headache even higher. I said some inappropriate things, no cussing, just inappropriate and he got really mad telling me she had been in a motorcycle accident and broke her pelvis in multiple places. The dark, quiet room was a blessing and when I was finished with the MRI/A we were walking out and the guy over the ER came out and gave me a big hug saying I would be okay. He must’ve called my Neurosurgeon and she worked me in two days later. (I failed all the neurological tests @oct20 mentioned and a few more) I asked her about the not blessing me with the led pen light and she busted out laughing, said no it’s not in my chart. I really thought it was.:crazy_face::rofl:

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@ModSupport
Thank you, I’m glad you straightened it out . It was a misunderstanding from my part.
I don’t remember much from my 12 days in the ICU, only a few memories, but this assessment is hard to forget. I remember more from the last days when the vasospasm was taken care of.
My husband and my daughter has told me ( they were the only ones who were allowed to visit me, as we were in the worst pandemic time) they told me that I was joking and talking to the nurses, asked about their shifts, the nurse/ patient ratio, how long the shifts were etc. etc. I tried to check my own monitors as I thought I could do it myself…of course I couldn’t.
I told my daughter that I was glad that I didn’t live in the ancient times where Egyptians drilled a hole in the skull to get the bad things out like headaches and seizures. Little did I realize that I already had a hole drilled in my head and a drain to release the hydrocephalus.
My husband told the staff that I was feeling like I was among peers, having worked in hospitals for over 30 years as a registered nurse and certified nurse midwife in a country overseas. The environment was so familiar to me. But at the same time, I didn’t start to understand the severity of the brain bleed until I got home and I slowly began to put the pieces together.
I had one more surgery six months later when I got my stent and more coils. I’m now 2 1/2 years from the rupture and I am almost back to my old self, I just need some more sleep in certain situations.
Life is good :blush:

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I don’t know about that… …my wording could be better :rofl: Sometimes I know what I want to say, but it comes out all wrong. I try to correct it, only to make it worse. I knew a stroke patient who had the perfect line “A closed mouth gathers no stones”. I can say the wrong thing at the wrong time without even trying. I’ll often type something, leave it for an hour, come back and re-read it to see if I’ve worded it all right. Even then, it’s not always right. Tsk.

Being in a familiar environment with familiar faces would certainly be an advantage. For me it was all foreign and not my favourite place. You say they drilled a hole to drain the hydrocephalus. Did they insert a shunt or a plastic tube?

Merl from the Modsupport Team

@ModSupport
they inserted a tube to release the pressure from the hydrocephalus, I didn’t need a shunt and I am thankful for that.
I guess the environment felt familiar to me, having worked in a hospital my entire career. I remember when I got my stent inserted after six months that I was talking to the night nurse. I said “ when I moved to the USA I thought it would be interesting to see what the health care system looks like from the inside. And look at me now! The night nurse said “ you have to be careful what you wish for “ then we both laughed. It was weird knowing that I had brain surgery just some hours earlier and now I’m laughing and talking with the nurse.
That was definitely a better experience than when it ruptured.
Sometimes it’s easy to misunderstand when we communicate, especially for me when english is my second language.
Have a great summer :blush:

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English is my only language and I still stuff it up :rofl:

I’m in Australia, so we’re just hitting winter and I’m so thankful the summer is over. The heat (95F+) knocks me something terrible. When it’s cold I can wrap up and get warm. When it’s hot I can strip off, it’s still HOT.

Merl from the Modsupport Team

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