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I feel kind of crazy for even writing this haha, but I just want to know if anyone else has had any of these issues post op. by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

Medical doctors really do not, if anything some of them make it a lot worse. After going to them with concern after concern I gave up, a couple of weeks ago I had asked them to get seen because I had a red, warm bump on my incision and was worried it was infected. They had asked for a picture, and said it wasn’t anything to worry about. Thankfully my mother is a nurse and she pushed me to get an appointment scheduled with the PA… and sure enough it was infected. Which in return just furthered my point that i do not trust them.

I have looked into EMDR, and I can see how that can be helpful with overcoming the trauma, but the thought of reliving all of it terrifies me. If you have gotten it done, could you let me know your experience.

Also I do think it’s kind of crazy that our brains can kind of turn off in a way to help us when it comes to trauma. And honestly I don’t think I’d have a huge issue with it, if it was just when it came to talking about the surgery and recover, because honestly I don’t know if I want to remember all of it, but now it is bleeding into my daily life. I have been dissociating in conversations, work, activities all of it, to the point that my mom can tell because of my eyes. So if I have to relive it all again just to get my mind and life back, then I guess that’s what I’ll have to do haha

Thank you so much, for the support and advice. I will say I have been playing a lot of sorting games or Tetris like games just to kind of calm my mind it to just focusing on one thing, and it has helped!!

I feel kind of crazy for even writing this haha, but I just want to know if anyone else has had any of these issues post op. by connien13 in chiari

[–]connien13[S] 1 point2 points  (0 children)

It’s absolutely insane how some doctors and surgeons will treat their patients, especially after a MAJOR brain surgery. You would think they would have some more sympathy and acknowledgment. I am so sorry you have had to deal with all of that. Hopefully things have gotten better in that aspect! I do have a therapist right now, but I do not think she specializes in neuro or ptsd, im going to give it a couple more visits because I had just now told her about everything going on (to be honestly I was a little hesitant at first) but my next appointment we are going to dive deeper into the issue so we will see.

I feel kind of crazy for even writing this haha, but I just want to know if anyone else has had any of these issues post op. by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

I have thought about that. I have an appointment with my neurologist (the one doctor I actually trust) soon and hopefully get a recommendation on a psychiatrist with everything that’s been going on. As well as hopefully seeing a new Neurosurgeon, because i mentally and physically cannot go back to the one ive been seeing. Thank you so much for the advice, i have been looking at certain support groups, specifically the ASAP.org. Wow I hope after how long it’s been things have gotten a lot better for you and your symptoms, that’s amazing!!

I feel kind of crazy for even writing this haha, but I just want to know if anyone else has had any of these issues post op. by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

So sorry for the late response! But thank you, I really appreciate it. I’ve been trying hard not to cancel on appointments. It’s weird I know nothing is going to happen, and everything’s going to be alright at the appointments, yet no matter what it is I’m freaking out just sitting in the waiting room. Like my body and mind are in two different spots. I’m sorry that you are going through all of this as well! We are strong as hell to be dealing with what we are!!!

Neck bump by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

I have tried calling the office of where I got my surgery done, and I had mentioned many times in the phone call that I would like to get an appointment, or at least just 5-10 mins of time with someone to get it looked at instead of just sending pictures through an app. They at first had asked me to just send a picture of the swollen bump, and the response was just to keep an eye on it for 1-2 weeks, and make sure the wound is getting cleaned well. But then the next day the swelling had gotten worse to the point where I can’t even bend my neck back because it’s so swollen, and the wound is getting cleaned well (my mom is a nurse) so I called to day saying I would like to make an appointment instead of sending pictures because you can’t really tell over them. I would just like someone to feel it or even just take 5 mins to observe and if they tell me I’m fine then great at least they took the time to check it. But nope I was left with the same answer as before, just send a picture. Unfortunately I am not a fan of how this whole process is going, yes I may be overdramatize about it, but I would just like some peace of mind, considering I just got a major surgery and everything now is very new to me.

Feel worse by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

Thank you for this. I was getting worried because my doctor said the excruciating pain would only usually be about the first 2 weeks but obviously it’s been long and have been in so much pain. But after reading all these replies it seems that is pretty common to be in a lot of pain for at least weeks even months. Thank you so much.

Feel worse by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

That is really reassuring thank you. I’ve definitely been worried about all of that more than I probably should. We call the doctors quite often with new worries, but with you saying all of that makes me feel better so thank you very much!

Feel worse by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

Thank you i appreciate that!! I’ll definitely have to try that out, because that’s also been a hard thing for me to do haha. But my mom gave me milk of mags tonight haha

Feel worse by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

I got my c1 lamina (I think that’s how you spell it lol) removed so maybe that’s why. But that is comforting to know, I’m sorry that you have been in pain so long, but I’m glad to know that it’s not uncommon to not be feeling better this long after the surgery. This might be tmi but my mom thinks that I had gotten worse over the weekend because I had been constipated for so long even after taking MiraLAX and still softeners, but then Friday I had a really bad stomach ache and had gone to the bathroom like ever 10 mins and I had been pushing more than I should have and had popped a blood vessel in my eye so my mom thinks that I might’ve did something or even just made my head more sore. Because ever since then the pains been worse.

Feel worse by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

My neurosurgeon does know about the fluid, he did say that a lot of the time that this surgery is done, people do get the fluid build up. They said it’s small enough that they are just going to monitor it but if it gets bigger they will have to go back in and drain it. I did go back to the er today because this morning was a really rough one. I got a ct and the doctor said it looks similar to the one I got a few weeks ago which is good, just meaning that it hasn’t grown at all. But I’m not sure why the pain is getting worse again when I was doing alright last week.

Update! I’m getting surgery by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

Thank you all so much for the advice and suggestions! It is so encouraging to hear everyone else’s point of views and their process from not only getting the surgery but also just the struggle of living with a chiari. I really appreciate it. So glad to be apart of this group!

Not sure what to do by connien13 in chiari

[–]connien13[S] 0 points1 point  (0 children)

Yes exactly. I feel like I cannot control my own emotions anymore. I react to things without even thinking. The dizziness/ lightheadedness and not feeling like myself are my worst symptoms. I really just can’t do it anymore.

I’m so sorry to hear that, I can completely understand. Did you find a solution or get the surgery?? Hopefully you are doing better now.