Two weeks + on from the craniotomy

A little more than 2 weeks on from the craniotomy and my husband is very much on the mend. He’s driving, been working some from home and we’ve even been out to eat a few times- anyplace he can get away with wearing his enormo Orioles cap- his only cap big enough to cover most of the healing scar. He looks like, in his words “like he got into a fight with a lawnmower”. Speaking of which- no mowing for him for a few more weeks - so I had to do that last night. I videotaped him the day before he went in for surgery starting the lawnmower so I could remember how to do it. Yes, when he had all those plastic dots glued to his face from the prep MRI. :wink:



They did the op in an operating theatre of which there are only 2 others like it in the whole country. It has an angio, ekg and CAT scan set up right in the room, so they’re sure they got all of “it” out. Paul still has a bit of his stuttering and word finding difficulty from the bleed six months ago, but not enough to really interfere with life much at all (or even his job, thank goodness). His written communication is absolutely fine. His doctor said she “saw the damage as she was rummaging around in there”. Well, she didn’t say “rummaging around”, but I’ve just been using that phrase for effect. It will, as most of you probably know, take many more months, even years, if at all completely, that this will heal, but I am hopefully his speech will improve. For now, he just kind of speaks like my friend’s husband Brian, who had no brain damage, he just stutters a bit. :wink: (or Colin Firth in the “King’s Speech”- nothing wrong with Colin!! :wink: ).



The week of the op had the extra added stress of an interesting plot twist right out of “ER” or “House”. On the day after the op, Paul’s mum, who had flown over from the UK, and I decided we’d have a lovely sit down lunch at a restaurant nearby (Blue Hill Tavern- http://www.bluehilltavern.com/ ) If anyone ends up at Hopkins Bayview- absolutely delicious!!. Anyway, we come back, and Paul is still tuckered out, mostly just sleeping and still in the NCCU (although he was set to move to a regular neuro room later that day). Mum and I hang round for about an hour and decide to go to let him rest on his own. We stop in the gift shop for her to buy cards to send to her “friends that don’t do email”, and then stop briefly at the Post Office to get stamps for the cards, for the UK.



I come out from 2 minutes in the Post Office, and mum is totally disorientated- doesn’t know why she’s there “did we just come from Paul’s flat?” she asks, where she is exactly or anything. It doesn’t register immediately that there would be another brain event, in his family, the day after Paul’s surgery! She tells me to drive home and I start quizzing her, and her memory starts coming back in fits and starts. We call one of her sisters in the UK and she’s better- but still can’t remember the Prime Minister’s name (like us not remembering Obama!). Hrm… we call her GP, who was closed by then of course, and the after hours doc won’t call the US. (She had been given some Valium before the flight over for anxiety about flying and the op, but she hadn’t taken any for 2 days at this point). Then I call my GP who advises “get her to an ER immediately”. Ugh! What do I do!!! With Paul in Bayview and the nearest ER over near my house, I was stuck, so I call Paul’s extremely cool NCCU nurse Dawn. Like a trusted friend- well one that’s a neuro nurse, she tells me “bring her here- the ER is busy not swamped, and if it’s a neuro thing and she’s admitted. I know there are beds available on this floor”.





So that’s what I do… during rush hour no less- through the tunnel with traffic a bit backed up, I’m thinking she’s having a stroke. Scary stuff. She’s admitted and they do : CAT SCAN, MRI and then another CAT Scan before they move her to a room, for one night- just down the hall from Paul.



Turns out what she has is a cerebral cavernoma, which bled a tiny bit probably 2-3 weeks prior. The residue was what was causing the electrical impulses in her brain to sort of misfire- a type of seizure. So they put her on keppra- which most of you are familiar with, and she’ll probably be on that the rest of her life. The type and location of her cavernoma is not considered life-threatening and they feel surgery is not necessary. We sent her back to the UK with all her reports and films, etc. She followed up with her GP, who is then sending her to a neuro over there- it’s the NHS, so… maybe in 6 weeks they’ll see her. :wink: Anyway, she was released the next day. She had some mini episodes in the ER, witnessed by 2 doctors and a nurse, before they gave her the keppra and it was indeed scary (for us- for her- well, she said “I feel perfectly fine, I just can’t remember a few things”.



Anyway, big relief that it’s controllable with meds and that it’s not age related dementia or anything. Their cases were quite interesting in that both are random congenital cerebral vascular abnormalites. The docs said they’ll be studying them academically this year.



So she was released on the Friday and Paul was released the next day. Having to tell Paul that morning about his mum was pretty sucky, but when her prognosis was not all that “scary” and they were sending her home that day it was fine- if just a bit surreal her coming down to visit him in his room in her hospital gown and all. :wink:



Anyway, both mum and son came home and were comepletely on the mend. Paul is bored now, I can tell. I think he’ll be glad to go back to work in about 10 days. Mum’s travel insurance insisted she be escorted back on the plane by a UK doctor- a lovely retired anethesioligist from Bristol named Robin. They even bumped her up to business class. Hopefully her bills at Hopkins will be paid easily without much “back and forth” (they have all of her records at this point). Only downside for her is not being able to drive for probably a few months. She lives in a village so she may feel a bit isolated- but there’s a grocer and such in the village so at least she’s not “stranded”.



So… ready to get on with life for all of us, I think. I’ll be happy to put the very sucky several months of this year well behind us. We’re tentatively planning on another trip back across the pond at Christmas, which is something to look forward to. Thanks everyone here for your concern and interest, and best of luck to you all as your navigate your own journeys to recovery.

Wow…you have had quite an adventure lately. There is a cavernoma sub-group on here if you have any questions about your mother-in-law. Thank you for keeping us posted!

Thanks, any idea where I find it? It’s not listed in the lower left of my homepage?

www.avmsurvivors.org/group/cavernousmalformationsupportnetwork
Just click on the link!

thanks!

Beth, glad both husband and his mother are on the mend. I’m sure it was a very stressful time for you. If your husband needs another O’s hat, let me know. I’ve got one that my husband doesn’t wear. Camden Yards is the happiest place on Earth, not Disney World :slight_smile:

@Trish- LOL- he’d rather actually wear his Essex cricket cap(not that he’s all that into cricket, he’s just from Essex, UK) , but it covers less of the scar. :wink:

Hmmm…can’t say I’ve got an Essex cricket cap. Just a bunch of Cal Ripken, Jr. memororablilia. I grew up in MD and I do miss Camden Yards.

Yep, it’s a great place to see a ballgame indeed. :slight_smile: It would be even nicer if the team was a bit better these days. :wink:

Beth, I’m so happy to hear that things went great with your husband! Congratulations!

Hi Beth, what an incredible story about Paul and his mother. I hope they both do well. I can maybe give some insight to some of Paul’s speech issues. After my surgery for an AVF in my tentorial dura I had trouble recognizing acquaintances and recalling nouns. It was a bit embarrassing, but I soon learned that if I explained briefly people were very patient and forgiving. I suspected the Dilantin was as much at fault as anything else, but that is just a hunch. I stopped taking it at about 5 months post-op and a number of things cleared up. I apparently got a bit toxic on the Dilantin and it affected my fingernails, skin, and caused swelling at the root of the optic nerve in my left eye. The retina started to delaminate and they had to laser it back into place. I was left with a permanent blind spot in that eye, but the other one compensates beautifully. I tell you all of this in order to assure you and Paul that recovery is slow, but it will happen. All my other visual problems disappeared. My skin and fingernails cleared up, and my ability to recall nouns got back to normal. Be patient, both of you, and be good to one another. I wish you both the best and Paul a speedy, thorough recovery.

FB

Glad to hear Paul and his mum are doing better. May they continue to do well and that you all will have great Christmas in a few months.

Take care,
Debbie

wow you guys have had a tough couple of months, glad they are both on the mend.

Kia Kaha Taiki (stay strong, take care)

DM