We may never know if he was born with it (47 years ago) or if it just came on later, but it sure is a bastard. He gets a lot of headaches from the pressure. They tried to do an angiogram today and got to two of the trouble making clusters, but the third one was so tightly coiled that they could not get the gel up there right; the catheter bent. Then in recovery they gave him Benadryl because he had an allergic reaction to the gel. The rest of the surgery will be conducted once the Kaiser docs finish consulting with the UCLA docs about how to proceed.
Right now he’s got more of a headache than before. He just wants to get it all over with and be done with it. And of course it’s rather disturbing for the rest of the fam too.
My brother was diagnosed with a rare form of epilepsy in about 1981 (when he was 17). He lived with it for many years - essentially he took Dilantin (sp) to control seizures and was not supposed to drink, smoke or otherwise “indulge”. At the time of his diagnosis, the doctors all agreed that his AVM was so deep in his brain that he had a much greater chance of dying on the operating table than he did of the thing itself.
Fast forward to 2 years ago. Richie was at a party in the Hamptons (he was a journalist and tended to hob nob with the glitterati…though he was not one himself). He was doing everything he shouldn’t have been doing. He had a seizure, and slipped into a coma. At the hospital they discovered that his AVM had finally burst, and he had extensive cranial bleeding.
He has been in the hospital or a rehab facility every since. The odd thing is that it has been SUCH a bonding experience for my family, which was pretty far-flung and not close in any way. Richie is recovering really well, though he will never get his memory back about many things. He may never walk again - but his sense of humor is as keen as ever. He actually tells people that he has always been an “aspiring indoorsman” and that this accident has allowed him to practice his passion (told you he is funny).
All that to say that you need to be very very careful with AVMs. Richie had a good (for him) outcome, but he lived with his own mortality hovering over him since he was 16. Listen to the doctors. He had wonderful success with Beth Israel in New York City (Dr. Sachs was his doctor - the same guy from the movie Awakenings). If you have any more specific questions, shoot me an email. I’m by no means his primary caretaker, but I can get good resources if you need them.
My experience is remote from working with peds. but I do remember a lot of successful AVM embolizations with glue. From your posted link you already know of this option and if they cannot get angiography gel into your brother’s AVM this may not be an option for him. Such a complex organ, the brain, and all of us are wired a little differently. It sounds like his docs are trying to determine all of his options. You didn’t say where he is the hospital, but has it been considered to transfer him to UCLA for the procedure? Might be something to consider and since he has been unable to have successful angiography where he is now a transfer might be doable if he wants.
Lots of tough decisions to help your brother sort through. Good luck.
I’ve cared for a number of patients with intercrainal A-VMs and berry aneurysms. (2nd site)
Both are most often congenital, meaning present at birth. Berry aneurysms are usually multipule, and may be familial. They are most likely to rupture without warning. I mention them, only because you mention more than one trouble area. The “coiling” as you describe, and the fact it hasn’t yet bled, makes it sound more like A-VM.
A lot of progress has been made over the last few years in diagnosis and treatment, and patient outcomes have improved accordingly.
The prognosis for A-VMs discovered before they rupture is, obviously, much better than those that bleed, so your brother has already increased his chances of complete recovery. That said, even those caught early, can have very serious complications.
The site, and the vessels feeding it can spasm, before or after clipping. (surgery) It can cause loss of circulation to a large part of the brain, leading to stroke or death, if not treated promptly. The risk diminishes fairly quickly, after successful clipping. There are medications that are able to reduce blood pressure specificly, in the brain, without affecting general circulation.
I won’t name specific drugs, because others have been developed since I last worked in a Neuro ICU.
If the doctor chooses surgery over embolization here’s a little of what you may see. Just so you won’t be too shocked by how he’ll look after surgery, I’ll describe some possibilities. He will come from surgery to the intensive care unit. Some hospitals have ICUs specific to Neurosurgery, but not all. You won’t be able to vist the minute he arrives, because there is a lot for the nursing staff to do in the first half hour, and ICU rooms, no matter how large are never big enough.
He will possibly, still be on a ventilator (breathing machine) connected to a large tube the anestheaologist placed, through his mouth or nose, iin the operating room to have complete control of your brother’s breathing. It will be taped to his face. His face may be swollen. They will shave his head where they went in. They may or may not shave his whole head. There will be a dressing over the site, and probably, a monitoring device coming out of the same area. It will give the doctor and nurses a continous read out of the pressure in his head. This is called an I (inter) C (crainial) P (pressure) monitor. It will stay in for a day or so, if no problems arise. He’ll have one or more IV’s to deliver fluid and medication, He may have an arterial monitor, giving a continous reading of blood pressure. He may also have a central venous monitor, called a Swan/Ganz monitor. This one does several things, but basicly it monitors the general circulation.
He probably won’t be awake, since most neurosurgeons prefer their patients recovered in ICU.
(The following is an unpaid advertisment for Nurses )
Every hospital has there own protocol for their patients, and every neurosurgeon has his own routine, so any of what I’ve described may be different. Don’t be afraid to ask questions. The nurses are your best resorce. They are on the front line. The surgeon will drop by a couple times a day, but nurses are there 24/7 they see any subtle changes. After the surgeon does what he does best, he just makes curtian calls, the nurses are the main show after that.
Good luck to you and to him. I hope I’ve made what you’re facing easier. I’ll check back, if you have specific question I might answer.
I think the Kaiser docs realized that some of this they just can’t do,so they are indeed sending him off to UCLA as soon as they get it together.
He did mention that they will be grafting some skin from somewhere on his body to put on his scalp.
His wife is a registered nurse and she is with him.
I thought that these things had been bleeding already, but I could be wrong on that. He never had any seizures or anything similar in his life. Just a truckload of headaches. Of course, he does not take aspirin or ibuprofen for them; we all know they could make it worse.
I believe the hospital he was in was Kaiser Sunset (?) in East L.A. It is a long commute there from the high desert, but they do not have the right facilities up there or in Fontana for him.
He was actually going to go to work! His reasoning was “well, I’m going to be achy anyway so I might as well not stay home and sit around…” But I think he reconsidered because he just emailed, and he can’t do that from work.
Well, it’s been two or three weeks now and the UCLA docs still have not called to schedule the completion of all this stuff! Sheesh. But at least some of the pressure is off, Bro is feeling better and working, and even made a pie the other night.
Well, sheesh…He just called today, 11/22, and said that UCLA has scheduled a consultation for Dec. 7. I really thought they’d finish the friggin’ procedure by now. I don’t know what’s taking so long.
Okay, they pushed it to Dec. 10 because freekin’ Kaiser had not authorized it or signed some damn thing, then they moved it to Dec. 9.
I tried telling him to get pushy for a change, but he doesn’t want to go there.
I would, but we’re very different. I’d be saying, “Hey…you’re making me wait weeks and weeks while you dick around with paperwork and in the meantime, I’ve got a frickin’ throbbing pulsating thing under my scalp!”
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