Update on yesterday's procedure

General
1

Yesterday was a very tough day! I had no idea that they were going to drop a bomb on us like they did and I had no idea of the rollercoaster ride we were going to take.

After long delays and an upset boy (I had to lay into a very heartless pre-op nurse and remind her of the hospital's pediatric bill of rights) here is what happened:

1. The team called us away from Bo and told us that if we hadn't found this when we did and began intervention he would surely have died before reaching adulthood. This is due to the depth and location of the AVM based on the CT and MRI scans. It is deeper than first thought and just to the left of the posterior thalamus in the section that controls being awake.

2. There is no possibility of surgical resection because of where and how deep it is.

3. They can treat it but until they have a good map the risks are coma, death, and brain deficit at that point in time. The embolization could backfire and block the veins as well as the arteries and cause death of healthy tissue. The Gamma knife could do the same if the nidus is not outside the brain but again, without the map, they don't know for certain.

4. They asked us if we wanted to be conservative in treatment since we did find it early and they don't believe it will bleed prior to us completing treatment. We went ahead with the conservative route.

5. After a while we got a phone call from the OR saying that they were going to proceed with embolization which we took as a good sign.

6. The team came out to tell us that there had been a technical difficulty and they could not see as clearly as they wanted to due to the equipment not being set up the way the lead doc liked and that they stopped the procedure and we will continue as soon as everything is fixed but not more than two weeks delay.

7. They did get an excellent map of the AVM and part of the nidus is outside and part is inside. They will embolize one part and Gamma knife the other and it should be okay.

8. The AVM is being fed from the midbrain and lateral arteries which they said was good that it was only those.

9. My son is doing okay today with the exception of feeling tired and having a sore spot at the entrance which is to be expected.

I am just beyond exhausted right now and we are waiting to hear further (they said a day or two) about when we go for the next round.

2

A tough day indeed.

I also have logged a bunch of ‘hospital time’. I think the stress of just sitting, waiting, and worrying are MUCH harder than physical work.

Enjoy the good days. Once you’ve decided on a treatment and have started, there will be ups and downs–hopefully to hear the best words “It’s GONE and he’s FINE.” You can’t be impatient.

Best wishes,
Ron, KS

3

I know it is an exhausting process, emotionally, mentally and physically. People outside this site just can’t even understand the extent of it! It truly is a journey as well, a long one. Just dig in for the long haul and look forward to the small (and large) successes! I know it also helped me to only look as far as the next test/treatment, and not try to get too far ahead of myself with all of the possibilities, because then the fear would set in. Thanks for the update, and your family will continue to be in our prayers. It is horribly difficulty to have to watch your child try to deal with such a serious health issue. It really stinks. Hang in there…

Susan

4

I did/do the same thing with baby pictures. It seems so strange to look at the pictures, knowing it was there all along! I also empathize with the waiting for phone calls. That part about got the best of me. Waiting by the phone, just to NOT have them call made me so anxious and irritable. It seemed like each step required waiting for another phone call. I’m so glad to be done with that. Take a deep breath…they will call…eventually!

Holly Tautz said:

Thanks!


I was looking at pics of him growing up from babyhood and realized that the AVM has been there all along just waiting and lurking, looking for a chance to steal him from us. That really upset me as well as now thinking about everything he does and everywhere he goes that something could happen.



I am trying to stay focused on right now and not think ahead and that’s tough. I really wish they’d call and tell us when the next scheduled procedure is…UGH!

5

Thinking of you Holly. I felt all the same things as you are now. You need time to somehow learn to live with this new reality and it is not easy.
One thing I learned (although I live in Canada so different healthcare system) is that you should only wait a short time before you make a call yourself and find out about appointment times…I waited over a month once for them to call for an appointment that had been forgotten! I was so mad at myself and after that, I made way more ‘noise’ for stuff to happen!

Good luck and take care. One day at a time…

6

Well, his head hurting gives you the perfect reason to call the neurosurgeon, and say “by the way…how is the scheduling going?” I used to call with my classic line of “I’m sure you probably told me, but I just can’t remember…was I supposed to call you to schedule, or were you going to call me?” That worked for a while. I wanted to maintain the delicate balance of getting the information in a timely manner, while still staying friends with everyone in the office. They will go the extra mile if you are nice (though there are exceptions.)

Holly Tautz said:

Thanks Joy! That thought has crossed my mind but I have no idea which doctor to call. The neurosurgeon, the interventional radiologist, the other radiologist who will do the embolization? I just don’t know and today my son called from school saying his head hurt. I feel absolutely panicked right now because I don’t know if it’s the occipital nerve causing the headache or if it’s the AVM.


This is really starting to feel like a nightmare…

7

hi, every AVM is very different. I can’t make any promises, but want you to know that I had three cva (bleeds-strokes) from my AVM, from 1972 to 1985. I have trouble from the scar tissue, but I am still going - had a second child, with the AVM and am now 61 and a grandmother. You just don’t know. I am so sorry that this is happeneing with your child. I wish I didn’t know your fear and heartbreak, but I do - an entirely different story, but I do and I will be praying for you. - Virginia

8

Congratulations on making the first large step of the operation. Getting that done is so much work to complete. Now, begins the tough spot. You have to wait for awhile to see how well it worked. And remember, if the operation went well, the tough part was for the people like you who was awake. He was knocked out most of the time.

Good Luck,
Al, Chicago