Thanks for thinking of us! Yes, we are in Eastern TN about 3 hours from Nashville. Luke is recovering well and he is back to school now. He is still doing PT once a week..they are working on some muscles of his left neck and shoulder and he has had great improvements with that. We are still processing the whole experience and he seems to have some emotional days and mood swings at times but overall he is doing really well. He has been seeing a therapist since early in his diagnosis so we are continuing that for now.
How is your son doing with his recovery? Has he been able to go back to school?
Glad to hear that he is doing well and having improvements!
My son went back to school about a week after the surgery and is doing well. He is doing PT and OT still due to the left sided weakness, but he recently got a new leg brace and is walking better. He’s not getting side cramps anymore when he walks due to compensating for the left leg. So now he’s able to practice walking longer distances.
I was also thinking of getting him a therapist too especially since he goes into middle school next year as middle school is already a really hard time but might be worse for him given his deficits. I’m also working with the elementary school to transition his 504 and IEPs over to the middle school at the end of May.
We see tiny improvements in his walking each week, but progress is slower than I want it to be. He still has fair amount of spasticity/hypertonia in his lower leg/foot/toes. Yesterday the physical medicine doctor prescribed him an AFO boot for sleeping that stretches his foot more often. They also mentioned Botox as a possible treatment for the spasticity so that it can relax the tight muscles and make him more able to strengthen them while they are looser. He was a very active kid prior to all of this and was on a travel soccer team and running club at school so it’s really hard to see him not able to be active in that way. However, yesterday he did play outside a bit with the neighborhood kids which he really hasn’t been able to do previously, so it was really nice to see him be able to enjoy that.
Hope all is well! My daughter had her surgery and post-op angio showed 100% obliteration of the AVM. However, going into the post op angio we heard from the surgeon that there was still a teeny tiny branch (a few mm in size maybe) overlying her sensorimotor cortex and they were going to embolize it because resection was too risky. However, when they went in to embolize, it was gone. They think from the drastic drop in blood flow that it just clotted off itself! Recovery is going well so far - we’re one week out now.
They want us to come back in 3 months to reassess and make sure that little vessel stays closed. It’s a good candidate for “curative”embolization so we don’t want to let it grow if it comes back somehow. I was just thinking about it and realized that we were both told to come back in 3 months.. there must be some significance about 3 months lol did they tell you why they recommended that timeframe?
I am so glad to hear that your daughter’s surgery went well and the AVM is obliterated! I know how relieved you must feel to be through it. I hope that her recovery is going well. They didn’t say anything specific about that timeframe. They just told us they wanted to do a short term follow up because of one vessel that still showed some flow during the post op angio. They did mention that for Luke if the vessel does not close up on its own then he would likely get one small dose of radiation to close it. Our surgeon said it was in an area that would be easy to get to and didn’t seem too concerned about it.
Luke is doing fantastic now. He does not seem to have any noticeable deficits. We are going to do a visual fields test to check for any peripheral vision loss but the doctors want to wait 6 months post op just to make sure all the swelling has resolved. He was supposed to have his follow up MRI on July 20th but unfortunately my father passed away on the 18th so we rescheduled it for August 25th.
Thank you Richard. It has truly been a hard time, losing my dad has been heartbreaking for all of us. He was a wonderful man and we miss him so much.
Just to make it worse, my husband has been diagnosed with Sarcoidosis in his lungs and heart. It has been almost a year since his symptoms first started and we are about to travel to Cleveland Clinic for a consult in their Sarcoidosis Clinic, ironically the same week of Luke’s angiogram. It’s insane that so many hard things can happen at the same time. It’s been a rough time for us but we will keep putting one foot in front of the other. Now is the time to dig in and roll with the punches all the while trying to live life normally.
I think we go through phases in life like this. My mum has dementia and that has come into sharp focus this year, with me doing various amounts to support her to continue to live at home (and I’ve crashed out of helping Ben’s Friends a lot as a result).
I could look upon it that I’m retired and somehow I should prioritise my life, my retirement rather than go to help her every day but I take the view that these things pass: life will return to normal or at least to a better-than-now normal not that far into the future. So it will be with you
Ben’s Friends launched a sarcoidosis support forum many years ago but we closed it last year due to complete inactivity, so I can’t offer you a similar home for sarcoidosis, I’m afraid! If you find a bunch of people who need a space or an existing organisation that needs a space like this maybe it would be something we could do.
Thank you for the encouragement. I am sorry to hear about the struggles your mom is having with dementia. It can be so heartbreaking to see a loved one going through this and I hope that you continue to find some joy in the time you have with her during this difficult time. My thoughts and prayers are with you.
I’ve been reminded of the saying, “This too shall pass.”
When times are hard, it’s comforting to remember they won’t always stay that way — one day at a time is enough. And when times are good, it’s a gentle nudge to soak up the joy while it’s here, because nothing lasts forever.
Both the struggles and the sweet moments are part of the journey, and both deserve to be honored in their season.
We have found some great support in Sarcoidosis support Groups on Facebook but I will let you know if I see a need for a new space.
As always, your words are very helpful and appreciated more than you know.
