I am recovering great if I go off functioning like myself, however I have into a couple things that I am questioning. I am at day 6 post surgery and having increasing swelling. The temple area and side of my head by the staples is essentially a waterbed currently and the staples are weeping. It is increasing instead of decreasing amd I am not sure if this is fairly normal. I also have a servere arm ache as own my whole left arm for days…it is actually more painful than my head. I cannot fathom a reason why. It doesnt feel like nerve pain…more like a very deep growing pain type ache. I dont think I had any severe IV infiltration issues and it doesnt appear to be swollen, red, or hot…but it hurts like hell. Anyone else experience anything of the sort? Seems a little left field honestly. Taking a half of a T3 every 4 hours is not helping, but I am hanging in here.
What treatment/surgery did you receive?
I had a craniotomy interhemispheric complex aneurysm clipping. I went to the doctro qbout my arm today…I have a clot in my radial artery. At the hospital now looks like vascular surgery to repair it as dosing with blood thinners isnt high in the to do list after brain surgery. 3rd operation in 2 months. An angiogram/failed endoscopic coiling, the open craniotomy that ended up more complex than anticipated (2 hours turned info 5.5 because I have an excessively thick skull) and now vascular surgery to fix this complication…we are getting somewhere slowly…I think
You’ve been on a merry go round with this haven’t you? I’m glad they caught the clot, really glad. Did the doctor say anything about the increased weeping and swelling, or is it related to the blood clot?
I do like to call it being on an adventure:sweat_smile: It has been a very ever changing adventure, and miserable at times, however overall I feel BLESSED BEYOND MEASURE!. I cannot stress enough how strongly I feel that way even with the twists and turns of things at every corner! For a small recap and perspective…August of 21 we discovered the bugger incidentally. It was small, usualy they don’t grow etc so out of mind it went. Come February I started getting frequent headaches when I normally dont get them at all. They started out mild and short lasting, and racheted up slowly on frequency and duration. Come mid to end of February my headache was a basic constant albeit not super intense however I was getting a weird form of presyncope. Felt LITERALLY like someone was randomly constricting my carotid arteries (a heavy pressurized face and head feel followed by a head swim) this also racheted up and increased in intensity and frequency. (USUALLY aneurysms do NOT seem to cause this symptomology, however in my case thankfully it seems to have. My neuro and I theorize that it was literally force, torque/ changes to the blood flow in that area as it had to flow in and back out and divert differently than usual…in any case this alone while horrible feeling is what basically saved my life.) So on Mar 3rd I went in to the regular doctor at like 5 pm as I was getting it again as I was getting ready for work and at this point was a frequent issue that was starting to affect driving ability etc. So we had another scan and found it had grown 3.5MM since the 1st scan which I guess is a fairly fast growth rate. Referred to a neurological radiology interventionist, had a phone consult Wed to go over things and he deemed me a high rupture risk (HBP, family history, unstable growth, smoker, symptomatic, bad location with higher rupture risk, unusual placement in that bad location, irregular shape and extra blebs forming out of the original weak spot etc) and put me instantly on blood thinners and a preop to do a combined angiogram and coiling 2 days later on Friday. So a super fast flurry to get it taken care of. Went in on Friday, whole day was a disaster except for where it counted. He was intelligent enough to know when he was in there that coiling was NOT suited for mine and did not proceed with surgery. Too complex and wide necked and at a 3 way bifurcation point. So he called a specialist and had me set up for him to do the full clipping instead, however from that readjustment point my new surgeon was on sabbatical and so we ended up waiting for him to get back and get his schedule established again etc and none of us were comfortable with the long wait with the condition of the anuerysm. Also had a post angiogram complication with a minor pseudoaneurysm development. (Literally felt like saying to keep the word aneurysm to yourself, I was NOT happy to associate the word to myself a 2nd time:sweat_smile:) lots of activity restriction and nervous wait time. Went in for my presurgery consult on the April 19th, went in for the surgery May 10th. Had complications that took it from a 2 hour surgery to a 5.5 hour surgery because my skull is excessively thick barring the usual entry technique (couldn’t use the jigsaw at all, had to hand drill the entire craniotomy instead causing it to be more time consuming, more aggressive, and of course less routine/safe as you are kind of hand digging a trench depth wise and having to be careful throughout whereas usually a single burrhole is all that you need to manage depth wise and once you switch to the jigsaw the footplate lines up under the skull and allows a nice smooth cutting while protecting depth. So I ended up with 3 clips all of them wrapped? and a platinum mesh to counter the excessive skull deformity from the trench digging. I was done with surgery late at night on Wednesday and went home Saturday morning. ZERO deficits physical or cognitive! ZERO. Walking within 24 hours. Immediate conversational ability of the same likeness etc. I was a lil sensitive to light for a bit, and I do have some dizziness but that could be from the 80 meds I’m on. I have some excessive swelling and the pain has been awful at times (my fault really as I micro managed my pain med choice dumbly. 1/2 a T3 every 4 hours is NOT sufficient and I have no idea what I was thinking ) so sleep had been ROUGH especially with the steroid insomnia. The radial line during surgery combined with the longer than expected surgery time caused the clotting in my radial artery, however there is some residual flow happening still. We decided against surgery they are not comfortable full on clot busting it this soon after a major brain surgery to we are going slow and easy with aspirin therapy instead. A risk, but a much smaller one. I have my follow up today at 1030 and we will address the swelling and check the weepy staples. Overall its been complicated all along but I cannot stress enough how blessed overall. When he went in it was imminently ready to rupture…and other than pain and swelling and odd complications my outcome could not possibly be any better!
My aneurysm was a bit of a mess with 24+ daughter sacs. We are both extremely blessed I think with the rarity of sacs on our aneurysms. I’m really happy you didn’t rupture and let us know how the appointment goes today. Best of luck!
Appt went great. Took out the staples. No scan needed for 2 years. No real followup needed since I am 100% neurologically whole. Just gonna work on slow dissolving this radial artery clot with aspirin therapy, and finish out basic recovery.
That’s fantastic news! Thanks for sharing.
You guys are all the best!! Its been great just to have a spot to vent, update, laugh, commisserate, celebrate etc etc with others who get it! Sleep has been an entire adventure for me since the surgery. 1st was the anesthesia induced sleep apnea that lasted 9 hours after waking. I was fine unless I actually nodded off and then I would quit breathing and it would instantly wake me back up. Once that wore itself down I was battling insomnia from the steroids (plus I was still in the hospital til Saturday and they dont leave you alone for any dang thing:melting_face:) I was doing the smallest dose of dilaudid for pain (.2) the 1st 2 days. Not even really enough to knock the edge off but i was trying to be conservative since I dont do pain meds well. It was never enough to get me semi comfortable. I finally took a benedryl along with my last dilaudid dose the final night of my stay (Sat night) to try to counter balance the steroids and managed a broken 2 hours of sleep for the 1st time since waking up Wed morning. So transitioning home I further restricted my meds and figured I would manage fine on 1/2 a T3 every 4-6 hours. Im just gonna go ahead and say that I was being an utterly blind moron:sweat_smile: Just didn’t touch the pain any, didn’t help me sleep any, and I have been miserable sleep/pain wise since surgery partially of my own doing. Additionally my arm was hurting with a deep bone ache type feel from shoulder to wrist (worse than the brain surgery pain) which prompted me to finally head to the doctor to check it out on Tuesday. Of course we found the radial artery clot, even still the pain was out of frame for that issue so they believe something may have gotten impinged in my shoulder area while working in my unconscious form etc. So at the hospital Tuesday night (a week later basically) I narrowly escaped vascular surgery AND finally conceded that pain wise I was not making it AT ALL. In that week I slept maybe a total of 6 broken hours. So they gave me .5 of dilaudid and sent me home with (3) 5 mg ocxcodones pills to get me through the night to my 1 week follow up with the neurosurgeon the next morning. Of course being basically FT delierious by this point. I get home, take one of the new pills as the dilaudid is mostly wore off AND my 1/2 of the T3 that was still grouped in my med box with all my new found colllection. It was maybe 230 and I slept brokenly for 4 hours until I had to get up for me appt. I wanted to share this so someone…somewhere whi may be like me and try to micromanage their pain meds down because they dont enjoy them hopefully doesnt make the same mistake. I pigeon holed myself into a dark corner of misery because I was stubborn and the body cannot properly recover without sleep if you cannot manage your pain. Happy to report I finally got a semi broken 6 hours last night!
Great advice! I did something insanely ignorant after I ruptured, I told the staff I didn’t want the morphine drip. I thought it was why I wasn’t processing and was giving me the headaches. They won’t give it back to you once it’s stopped and no amount of begging will get you back on it.
We absolutely need sleep to function. When I worked, I worked crazy hours. I would have 4 days of intake and be the on call back up (not bad) a day off and then the weekend shift started at 1600 hrs Friday and ended 0800 hours Monday. All paperwork had to be done by 0800 unless children were brought into custody or worse Sunday night, then we wouldn’t leave until the paperwork and all the staffing was done. Supposed to get a few days off but if stuff happened or there were mandatory meetings, we had to attend. Same with the 1600-0800 shift M-F. Sleep was a precious commodity. I started drinking chamomile tea before I went to bed, you might want to try it and see if it can help you. Don’t expect miracles, it may take several nights.
I understand that now you have learned by experience how to manage the pain. The fact is that it is better to take the painkillers on a regular schedule rather than to wait until you cannot stand the pain. It usually requires a larger dose or more potent medication to stop the pain when it has broken through. A smaller dose on a regular basis even if we don’t feel much pain is usually better.
You have certainly been through a lot! I hope that you recover get some rest and good sleep.
I will give chamomile tea a try! I am doing better with sleep, but I am still not getting nearly enough. A broken up 6 was a record though and felt so much better than the scraps I was getting beforehand. Never been so delerious in my life! I did however have more head pressure after I finally got those 6 hours…maybe just a coincidence, or maybe just from my head being in a more reclined position for longer. Either way yesterday was a heavy head pressure day that did lighten up a lil eventually. Ill take it!
You might want to try one of those wedge pillows as well, something to get your head in the 30 degree position. I learned that here! And as @oct20 says staying ahead of the pain is easier if you don’t wait so long, something I always seem to do. Learn your body’s “tells” so you know when it’s time to medicate. I recall my Neurologist telling me not to take an OTC more than three times a week due to them causing headaches if I took more. Don’t forget to keep hydrated and eat protein.
When it doubt, call the Doc! That’s my take on it, we all have our own experiences, but we also have different circumstances so call the doc! Good Luck and happy recovery!
Best of luck to you on the rest of your recovery ! Hope each day you feel better !!
Congratulations on “getting ‘er done”!
I had craniotomy on 4/27/23 and I am thankful everyday it’s been taken care of, I’m alive, and able to move forward in life. Mine aneurysms were familia as 2 other siblings are being observed right now. It could be both connective tissue and autoimmune as 1 sibling has MS.
You really went through some stuff and survived it! Go live your life and enjoy it more than ever!