Prayer & Best Wishes Diary, June

Thank you Richard, I will report on wednesday. I get my embolisation tuesday in the early morning, it will take 2-4 hours, followed by 1 day ICU … For me, being a doc for myself, its twice difficult standing on the other side now… but anyway it will help me to understand my patients even better in the future…

Volker,

So long as they understand you want to know the detail, I’m sure you’ll get on fine. I do think you’ll need to rest more than you are planning. Despite being relatively low impact way of having an operation, I think you’ll find you need rest.

Best wishes

Richard

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My son Mikey had a successful resection of a cerebellar AVM on June 13th. Prayers needed for full recovery and return to full function. So far, he’s on track. Thank you. And prayers and best wishes for all suffering from AVM.

NEVER give up :+1::four_leaf_clover::grin:

My father drew the same cartoon a number of years ago. He may well have used the one above as inspiration.

See here

All,

Do we know any folk up for a procedure in July? June has been a bit big.

It doesn’t need to be me that creates the July diary – anyone could do it. The little bit of magic is to edit the first entry in the thread each time someone is announced, so whoever creates the thread needs to own it for the month. The moderators always have edit ability, so if a non-moderator starts the thread, you don’t have to be on your own, the Mods can help keep it current.

I would also say there are others who are often in my mind and I expect often in yours. We can add these folk, too, like I did this month.

Any volunteers to start a July thread? Just create one.

… and not forgetting we are not yet at the end of June. Keep thinking about the folk left this month!

Cheers,

Richard

@dottore Been there, done that! It’s not comfortable, is it? but it’s not the worst thing in the world, either.

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Hallo from ICU, 10 hours past embolisation. I feel fine, no pain, no neurological issues, no dizzyness, no fatigue. Tinnitus is gone for 95%, the doctor says it is good, we have to wait for the vessels to reorganise. MR-Angio for control is tomorrow, then also I leave ICU. Saturday I leave hospital, monday to work (perhaps a little more rest than usual, no sports for 6 weeks). General anaesthesia for 3hours incl. arterial blood pressure and urine catheter was also ok. Complaints at the moment: still infusion and arterial bp, staying in bed till tomorrow 10pm (thats another 12 hours, perhaps I can ake a deal…). Everybody with embolisation ahead: Its really not that bad, at least if there are no complications (which we always hope not to happen).

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I have been asked if a neurological student can observe my embolization on Thursday. I’m hoping that means my Dr. will do an extra fine job😁

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Brings back memory’s. Had those IVs on all over my body and lots wires on my head. Felt like you were some robot.

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Good morning with the daily ICU-report…still on ICU, last 3 hours…had some small and reversible problems. At first a mild pain left occipital behind the ear (that’s where the avm was located), still there, but no worries about that, it’s because of the onyx. Then a reading disorder: while reading a sentence parts where missing, quarter 2and 4, and reading was difficult, had to “scan” the text multiple times - that went away after 14hours. Then I had some light flashes like after the angio, but less intensive - disappeared 20 hours post embolisation. The 5 % mild puls synchronized tinnitus which came back a few hours after the procedure now gets better, it’s only in some positions. Sounds and feels very good.

Now 12 hours away from ICU, normal station now. Feel good, a little bit weak, but that’s really ok. Tomorrow I leave hospital, my loved wife drives my home, then a few days of rest, monday starting work as slow as possible. Every hour it is getting better, being happy and proud to make it work. For everybody before a procedure: You can’t believe it but the day will come, it isn’t so worse, and past the procedure you will be good and happy, and your condition will get better every day. If someone can afford to have not only 5 days for recovery but e.g. two weeks, it will be better of course.

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Hi

Fab news sounds like your well on the mend…

At first a mild pain left occipital behind the ear (that’s where the avm was located), still there, but no worries about that, it’s because of the onyx. Then a reading disorder: while reading a sentence parts where missing, quarter 2and 4, and reading was difficult,

Thats me all day. could i ask did you have eye problems before or is it just since the gluing … or did you have other side effects. i should read your story i guess. lol. i will look now.

Matty

Hi Matty, before the gluing I did not have any eye problems (besides wearing glasses because of a mild myopie only 2,5 dpt). The reading problems and the flashes occurred after angio and again after the procedure. It disappeared about 2 hours after the angio, and about 14 hours after procedure. The reason is, that the area 17(and 18, 19) where your brain interpretes what you “see”, are just in that part, where the avm is, getting blood from the arteria occipitalis side vessels. The irritation comes most probably from the jod contrast substance, of which they have to use plenty during procedure to do a good job.

I agree. I had a strange absence of sight in the south-west quadrant of my vision post embo. It recurred for a max of 3 weeks then went away. I was interested to find it recurred also after my 6-week angio, so I took it to be irritation from the catheter but it could very well be the contrast material.

Hi Richard,I don’t think the catheter itself reaches that region, so he can’t do any mechanical harm. So it has to be the iodid contrast material - my doc agreed with that.
By the way - already at home now, 54 hours after embolisation. Still weak, emotionally a bit unstable, a few headaches (works with only a little novalgin), but also very proud, happy and thankful. Feeling like an avm survivor!!!
I am so happy I found the specialist to help me (in my home town, e.g. at the university hospital, I had no possibilities). If someone consideres an option in Germany, here’s the contact (he is a neuroradiologist, specialized in diagnostics and using onyx glue with a catheter):

http://www.helios-kliniken.de/klinik/berlin-buch/institute/neuroradiologie/pulssynchroner-tinnitus.html

It is a lovely but big hospital with emergency helicopters landing on the roof, located not far from Berlin airport. Small hotels for family members to stay nearby, very kind nurses, 1 bed rooms, much green and nature if you look out of the window…The doctors name is Prof. Marius Hartmann, he does everything personally himself.
Being a neuroradiology specialist, he could have many topics to be interested in, but HIS heart beats only for the cerebral AVMs/AVFs :black_heart:.

6 hours post embolization not too terrible. Weak and dull headache. Will be in ICU 2 more days.

Good to hear from you! Get well soon!

Richard