u/OptimalBanana6897

After many posts about anxiety, fear and lack of control over my son’s situation after his brain tumor was removed…

The other day, something washed over me. A sense of calm. That things will be ok somehow.

Today I want to put out into the universe that I believe my son will be ok. That he will go in, have his UES procedure, and he will come out able to swallow again. He will eat again, drink again, and be happy again. This tumor and the stroke it caused won’t take anything more from him.

I don’t care that I don’t get to dictate what happens. I know this is bigger than me. But today I have decided that he WILL GET BETTER.

I love my baby with all my heart and I look forward to many more healthy and happy years with him.

This is the start of a new chapter. Not the end to a chapter.

The other day, something washed over me. A sense of calm. That things will be ok somehow.

Today I want to put out into the universe that I believe my son will be ok. That he will go in, have his procedure, and he will come out able to swallow again. He will eat again, drink again, and be happy again.

I don’t care that I don’t get to dictate what happens. I know this is bigger than me. But today I have decided that he WILL GET BETTER.

I love my baby with all my heart and I look forward to many more healthy and happy years with him.

This is the start of a new chapter. Not the end to a chapter.

My mom just up and decided to leave early today to go back home. She says she’d stay here until my son’s surgery on 8/20. She’s been picking fights out of thin air since the ICU in June, but I did not think she’d play the martyr card here…she wouldn’t dare!!

Oh yes she would, and she did. Claimed she just can’t be the support that I need and after I explained that all I needed was emotional support to get through this, she claimed she wasn’t strong enough and made it all about her and her feelings. Unbelievable!!

Oddly, the house feels super peaceful tonight and my son seems a lot happier. So I think this was good in reality. But did she need to do it at 7am without discussing it first? And all in a huff like this? That was so childish and so selfish!

The anxiety is kicking my butt big time today. Firstly, I am super panicked about tomorrow’s swallow study. I have to put in a dental device (obturator) and my son HATES it and doesn’t want it. But it’s required for his test. And he’s mad that yet another appointment is messing with the one good part of his days - his gym time. I am so sick to my stomach already. What if this Botox thing does not work? We jumped through all these hoops and put my son through so much torture and waiting (extra 1.5 months because they required this dental device first which took a bunch of extra appointments to create). I need to calm down but I can’t. I just keep spinning on this and what will happen if it doesn’t work. I don’t want to deal with another suicide threat…more tears, more days walking on eggshells. I need a break!! I need this one thing to go right so badly for my son.

On top of all that, he cried for over an hour on his birthday because a friend texted and asked what he did for his birthday. He started watching old videos his friends sent him of them playing around and some others of them wishing him well. And then he just fell apart. I held him in my arms until he was sleepy and laid him down for the night. I tried my hardest to help him by telling him we would celebrate it when he’s feeling better and can enjoy it. But a part of me wonders if that will ever happen. What if it never happens? What if this was his last birthday with me because this swallow thing never gets better and his birthday ends up just a memory of tears and pain? I don’t know if I can live with that reality. And I’m panicking because we are getting closer now.
This procedure might require anesthesia and he wants to be awake…but depending on what they find during his swallow study he may not get that choice. And I worry he’ll outright refuse it then. And I have to somehow keep him awake for a 2.5 hour drive each way to get there because they don’t have this specialist near us…so that is stressing me out too. He can’t fall asleep or he will aspirate his saliva. Somehow I’m supposed to keep him awake and some version of happy for FIVE hours that day. And then they want us arriving 2 hours BEFORE surgery too…like how the hell am I supposed to do his feeds that day? He can’t not have the fluid volume or his OH flares and he will pass out! And it’s hot -100 degrees out…which makes the OH way worse. I just am so anxious about so many things that I can’t do anything about. I have no idea how I’m supposed to get through the next week and a half.
And THEN…after all this it’s 7-10 days until we see if Botox works. And I need him to start practicing his swallow exercises again and he’s refused to do any of it since leaving rehab (he says it doesn’t work). But he NEEDS to do these exercises after this procedure. But I don’t dare bring it up for fear of upsetting him.

I am honestly starting to feel like I’m trapped in an abusive relationship where the other person dictates everything I say and do. This is not his fault. He’s just a kid…my baby! But I am getting crushed under the weight of all of this. I don’t know what to do. I feel anxious and upset all the time now. And my brain keeps going to this super dark area place where he suicides abs I just cannot deal with it. It’s making me feel completely crazy all the time.

For those who experience physical symptoms…

When I wake up, and sometimes just periodically, I get a tightness in my chest that makes it hard to breathe and it feels like my heart is beating out of my chest. It usually happens when I wand because I quickly realize I’m still in the middle of my son’s health crisis. During the daytime it’s whenever I think about losing him…or his words in the past about not wanting to live a disabled life.

I know from past experience with a trauma (10 years ago) that Xanax and Ativan just make these feelings worse.

So firstly I’d like to identify them - is this anxiety or are these panic attacks?

Secondly…how on earth do others cope with this feeling? I’ve been breathing, sometimes I just need a little cry, but mostly I’m struggling a lot. I could use some advice on how to handle it, I’ll repost in grief because I’m not entirely sure which group this should go in for advice.

So my mom is staying with my son and I to help during his recovery at home. At first she thought she’d work out with him and help me with his care and be here for me to talk to. And I welcomed that. I told her I needed her support and I did.
The reality is that after a couple hard days, she said she can’t handle his care, but just wanted to be there as support. Which my son then vetoed because it’s like having her hover over him during treatments but not actually doing anything. It was making him feel like he had no breathing room.
And then I don’t know why she thought she’d work out with him. A) he used to work out with me and that’s always been our thing and mom & son, and B) he explicitly asked up workout alone. So that’s exactly what happened of course.
And then being there for me has devolved into sitting on a couch with a tablet constantly in hand and sometimes talking. Or she’s eating, or she’s walking outside. And the few times I try to vent lately, she tells he she “can’t hear that anymore” or makes he feel like I’m somehow stupid for being stuck in mental loops of what if’s and if only’s…and that’s where I am right now. I need to be there and I need to say these things. And I need to say them a lot because repeating it is how I cope and talk it through.
So now I’m wondering what I’m supposed to do. She’s pouting, so now I have to deal with her external prickly attitude. She can’t be asked to do anything differently or she gets defensive and says I’m attacking her (example: we discussed no cooking inside the house because my son can’t and the smells of food upset him. She determines some foods are ok to cook inside anyway, so I ask her not to do that anymore - she says I’m attacking her, walks away to pout and then gives me silent treatment all night). I cannot do this with her! I don’t have the energy to fight over the dumbest of requests. Every request she makes into a personal attack when it’s not at all. Please don’t put my blankets on the dirty floor -attack. Please don’t shut the shower liner in the door because it pulls the rod out of the wall -attack. So now I feel like I can’t ask her to do anything or talk to her, and she’s literally underfoot all.day.long.
I feel bad because my poor dad is lonely and I know she misses him too. I really want her to just go home at this point. She is miserable and so am I. And she’s not even helping me or even allowing me to vent the way I need anymore.
I have one more long car drive with my son on 8/20 where I may need a second person in the car with him (just in case he needs suction or whatever). But then I really think she should go home.
The reality is this treatment with either work or not. If it does, she goes home as planned, but if not she can’t stay here forever. And she’s said she won’t leave until he’s swallowing again…what if this doesn’t work!? He’ll likely self harm at that point. And no, I don’t want to be alone if he does that. But what could she actually do for me if she stays? Is there any benefit to having her stay here in reality? I just don’t think so. And I think it’s harming our relationship a lot. She and I have always been close, but this is putting a lot of strain on things. Plus she is getting older now and so she has more needs of her own.

Not sure where exactly to post this. Mostly it’s so I have a place to come to per day and count down until our next procedure.

I have posted a little bit all over trying to find some footing as I attempt to navigate this nightmare our family is in. I am divorced, my eldest is away at college, and so I am alone except for my mom who is here temporarily to try to help. My son won’t allow her to help so it’s not actually helpful, and now I’m worried about her emotional well being on top of everything else because she’s separated from my dad to be here.

Today I just want to start a countdown until 8/20. I am exhausted. I cry every single day. Sometimes out of fear of losing my son and what my life would look like (nothing as far as I can imagine), and sometimes out of fear of not knowing how much longer I can do this every day…being his only caregiver. He needs so much every day. Breathing treatments, a ventilator (partial day), meds, and constant watching for fall risk. And then there’s keeping him afloat emotionally because he’s been suicidal. Walking on eggshells for fear of causing him to go to that dark place. Meanwhile, I’m trying to get every kiss, every cuddle and every positive ounce of energy I can have with him in case I lose him to this.

So today is the 5th. I have 15 more days to make it to the next thing. And then I don’t know what’s next. If it goes well, then we will be celebrating one small win. But if it goes badly, or does not work, our whole world is going to fall apart. Again. And so, trying not to focus on what will happen for now because it is too much to cope with to go there. Just counting days. Today is 1 of 15.

Today we played with his new airsoft pistol I got him for his upcoming birthday and dreamed together about what kind of motorcycle he’d like if he gets most of his balance back. That was the good part.

It started last night when my son’s friends began chattering on a group text about an upcoming football game. It triggered his PTSD…I think maybe because he’s feeling left behind…his team is just moving on without him. His position was filled by some new kid who he doesn’t know etc.
And he has his UES surgical procedure (likely Botox) coming up in a few weeks.
Something in him just snapped last night. It’s continuing on today. I just don’t know how to cope with this myself. I don’t know what to say to him when he goes down these dark paths. He starts talking about ending things if his body won’t fully heal, and then that he’s lost respect for everyone and how nothing anybody does even matters (citing police, firefighters, hospitals etc). It makes me so sick to my stomach that I want to throw up. And I just don’t know what to say to help him. I know he’s been through heck and I know his body betrayed him - he can’t talk right still, he’s got ataxia that’s better but still pretty problematic, he’s got a swallowing issue that requires a trach and a vent, and he has OH that just randomly makes him pass out from heat, stress, and even visual changes like light up dark or vice versa. It’s a lot!
I’m just trying to put one foot in front of the other and get through one thing at a time. Right now, that’s going towards Botox. But when he has these episodes it just kills me. I can’t see how I’m supposed to keep supporting him through these episodes…this isn’t getting better next week. And honestly, it might never get better. We might be on a slow march towards the reality that he’s permanently disabled and then he’s going to want to harm himself. I am exhausted, but I can’t sleep well. I wake with my heart pounding out of my chest and sick to my stomach every single day. He won’t see a new trauma counselor since being home and I cannot do this by myself. I have a family member here with me, but it’s not that helpful tbh. She doesn’t know anything about medical trauma either. What can I do to help him and help myself survive this? I feel like I am starting to fall apart with him.

Does anybody have experience with acquired ataxia after a brain tumor was removed?

This is regarding my son who is home continuing to recover. His tumor was in the 4th ventricle, but he bled badly, and had a type of stroke (dr still can’t tell is what type and can’t find any evidence on brain scans) during surgery. We think the bleed is what caused these symptoms. There are more symptoms, but the focus here is ataxia, so that’s the ask.

Looking for ways to continue PT at home after front released from rehab to home. It was severe 6+ months ago, and now is somewhat manageable.

The things that are still super difficult are walking (without a walker) and freely using the hands. The hands can operate a video game controller ok, but not great (that’s been the preferred OT for dexterity so far).
For walking - legs are still very rigid and stiff with each step. Still losing balance very easily, but now better able to catch it and not fall.

What are some things that can help these symptoms continue to improve? Are there any supplements that help at all?

The goal is to get confident enough to drive a vehicle and walk around a school campus safely.

Does anybody have experience with acquired ataxia after a brain tumor was removed?

This is regarding my son who is home continuing to recover. His tumor was in the 4th ventricle, but he bled badly, and had a type of stroke (dr still can’t tell is what type and can’t find any evidence on brain scans) during surgery. We think the bleed is what caused these symptoms. There are more symptoms, but the focus here is ataxia, so that’s the ask.

Looking for ways to continue PT at home after front released from rehab to home. It was severe 6+ months ago, and now is somewhat manageable.

The things that are still super difficult are walking (without a walker) and freely using the hands. The hands can operate a video game controller ok, but not great (that’s been the preferred OT for dexterity so far).
For walking - legs are still very rigid and stiff with each step. Still losing balance very easily, but now better able to catch it and not fall.

What are some things that can help these symptoms continue to improve? Are there any supplements that help at all?

The goal is to get confident enough to drive a vehicle and walk around a school campus safely.

I need advice. My eldest son is on the spectrum. He is a lovely person! Such a tender soul and always wanting to help others. But he also has the autism superpower (as we call it) of being emotionally detached. He loves in his own way, but he isn’t lovey-dovey or cuddly like most kids. And he doesn’t really “get” why other people get emotional about things in life.

So my question is - knowing how tender of a soul he is - what am I to do if/when his younger brother decides to check out? He isn’t even aware that the brain tumor surgery had the catastrophic effects they did because I haven’t told him anything. It’s these disabilities that’s causing his younger brother to consider the unthinkable.

Do I protect him? And for how long? I don’t want to hurt him, but he is 18 and he does like to be treated as an adult. Should I tell him how bad his brother’s injuries are? I almost feel like it will be worse for him to experience a sudden loss of his brother out of nowhere rather than know what is going on.
I am so lost with all of this. I love both of my sons with all my heart and this entire situation is destroying me.

Right now, my eldest is doing great in college and preparing to start work in accounting. It’s was a HUGE deal for him to get his GED and graduate HS at 16. And now he’s tackling college and doing so well. I am so very proud of him!! Is it even fair to tell him anything? He’s protected in a bubble in another state with my folks, so I can keep things that way. I’m just not sure what the right choice is here. Morally, ethically, or emotionally for him.

I wrote before asking about what I believe to be false hope given to our family about a full recovery after a brain tumor resection for my 15 years old son.
Right now, we are preparing to tackle a swallowing issue with the help of a Prosthodontist and an ENT who will provide a Botox injection. This should fix his swallowing issues - BUT…there is a very big but…some of his post-surgery injuries are paralyzed muscles and nerves. What if this doesn’t work? What then? Because he’s only 15 and he’s saying he refuses to live this way if it can’t be fixed. To be fair, it isn’t just his swallowing. It’s the ataxia, the partly paralyzed tongue that prevents clear speech and the need for feeding tubes and a ventilator at night. It is a lot to ask of him to live this way and I realize that. But I am not ready to lose my baby. We are very close and I cannot imagine my life without him. My eldest son is away at college, and it’s been my 15 year old and I against the world for several years now. I’m divorced, so if the day comes when he decides he’s had enough, I’ll be alone in a very large house that honestly - I bought for him and his brother to get into a good HS and area. And then my 15 year old helped me fix it up…painted it, built shelving units, built the BBQ overhang with me, and planted all the fruit trees and built the garden with me…everything about this home has him all over it. And I don’t think I could even stay here without him. How do others cope with this type of situation? I am so lost. Given I don’t know how this procedure will go for sure, but the prospect of it failing scares the heck out of me. What if he opts to check out on me?

My 15 year old son was diagnosed with a tumor this January. They had to do emergency surgery due to almost complete blockage of CSF. When he went in he had minor dizziness, trouble keeping food down (vomiting), and double vision. He had a major bleed during surgery which they keep saying is a type of stroke, but not the ‘bad’ kind. But when he woke up, his tongue, vocal cords, and swallow were totally paralyzed. In addition, he has severe orthostatic hypotension so he can’t stand up without getting dizzy without midodrine daily. And then there is the ataxia that makes him unable to walk without falling or use his hands correctly - it’s a coordination issue basically.
He lost everything- his voice, his ability to walk, to eat…he can’t even swallow his own spit. We are 6 months out and they’re saying because he’s walking with a walker and capping his trach during waking hours, that it’s “good”. They’re saying to wait until a year to see what permanent disabilities he might have. How true are these statements from his doctors? Are they BS’ing us or is there really still hope?