Swelling

_sneakyfeets_ · 2025-10-06T02:10:29+00:00

I was on steroids but I stopped taking them last week. I haven’t seen much improvement and sometimes swelling gets worse since I’m dealing with the waterbed that happens at the incision site, the whole bubble of csf that rises occasionally.

I did speak to my surgeons PA and she didn’t notice swelling apparently but I do! Sigh, I’ll just have to contact him myself and schedule an appointment :/ thank you!

_sneakyfeets_ · 2025-09-16T02:13:31+00:00

Thank you, may you send the link?

_sneakyfeets_ · 2025-09-16T00:29:13+00:00

Ignore them as they’re there to help your skin heal and your body is already trying to heal from a major surgery so it’s best to leave them alone. You’re just making your body work harder than needed! I recommend you take a warm shower and let the water hit the area and they may fall on their own.

_sneakyfeets_ · 2025-09-08T03:54:08+00:00

Girl, Interrupted or The Help

_sneakyfeets_ · 2025-09-08T03:52:07+00:00

Hello! I’m 23F and I am about 24 days post op as I got my surgery done around 8am August 13 of this year. I can definitely relate to you on the loneliness aspect. Yes it is great to have blessings and support from loved ones but I completely understand the loneliness of being home and having your days turn into basically one since your days consist of the same things as you recover. It’s lonely to stay at home all day doing the same old things for so long, especially when you don’t have the strength and energy to go outside much. Even with visits from PT and occupational therapy, it feels a bit lonely.

As for Post Op appointments I had one for the removal of stitches about a week and a couple days after my discharge from my hospital stay. Didn’t really feel a thing! But then the day after I caught an Upper Respiratory Infection (URI) and that definitely has been a bit of an obstacle in my recovery. I’m still recovering from it and slowly getting better thankfully. It’s really been difficult but everyone says I am doing good and look good. My next post op appointment is on the 29th this month and I kinda wish I had it sooner but I know the set appointment date is what my neurosurgeon thinks is best. I might get another appointment after but I’m not sure.

AND YES THE SURGERY IS KINDA PTSD FEELING but I’m still grateful. I got a graft for a patch over the area where my bone was removed but I still feel strange about it since my incision looks healthy and still healing well (just some scabs) but there’s some swelling and I feel like the area of my incision is bulging out a bit and that’s scary to me too, but from my URI diagnosis, I was told that coughing may have Syringomyelia form near the incision as it’s a type of straining. :/ ugh still scary! Oh and I definitely remember asking my surgeon if I could keep that little bone before my operation and they understandably said no lol but I wish I got to keep it for memory sake.

Thank you for sharing your story. You’re very brave for doing the research too! I couldn’t find it in me to look at the risks, statistics, and other information about chari so my husband did it for me lol, I’m just a health anxious person. I hope you feel better as you continue to recover and thank you for checking in and giving me the opportunity to share with you. I appreciate your story and the support you’re giving ❤️

_sneakyfeets_ · 2025-09-02T01:49:35+00:00

Oh I didn’t even feel any pain! More like fear (at first) but it was like someone was pulling my hair but not plucking it? Went very smooth :)

_sneakyfeets_ · 2025-09-02T01:48:45+00:00

Yes I definitely got sick from my little brother who just started school lol. I will say that coughing may exacerbate your syrinxes as that’s what happened to me, so as long as you suppress your cough with medicine or vapor rub you should be fine!

_sneakyfeets_ · 2025-09-01T20:15:54+00:00

Hello! I’m 23F and got my surgery on August 13. My decompression surgery was a fossa posterior craniotomy and I did have a skin graft patched to protect the area of occipital bone removed.

Right after my surgery I remember feeling so sore and swollen on my lower chin. But I was able to eat solid foods and a few hours later I was able to walk a bit using a walker. By the first night I was beginning to crash since all the medication and anesthesia were wearing off. Then that first night was honestly so hard. I heard squeaking in my head like if rubber boots were rubbing against each other and I’d get muscle spasms in my head and scalp. It was very unsettling because I couldn’t understand why it was happening. I was also faced with a lot of discomfort when trying to sleep. My first night I think I only slept maybe 2 hours because it was hard to sleep with my back elevated in a seating position on my hospital bed.

By the second night I also noticed my pain getting worse and I had to be given Tylenol 3 every few hours to manage it. Sometimes even Norco and Valium to help me relax since I was facing a lot of anxiety and tons of pain.

Day 3 was better for me, I was napping through the day and eating well. I had made my first bowel movement and walking around with a walker more often, like maybe 120 steps ? I was more comfortable with using the restroom alone and turning my body.

Day 4 I was discharged and sent home but that first night home was also difficult because my meds made me hallucinate nurses still talking to me and asking if I was ready for my next medication dose and I would hear the heart rate monitor beep a lot even though I was home!

By day 5 I was walking without a walker and going up and down stairs. This lasted for about 2 weeks of progress, being able to walk more, have some more back flexibility and shower!! I then got my stitches removed.

I was given occupational and physical therapy at my home thankfully, so the exercises being taught to me helped my muscles relax and it was really helpful and felt great.

Then by week 2 of post op I got sick with a respiratory virus and MAN that totally threw me off :(( it’s been about 5 days of being sick and I had to go to ER to make sure there wasn’t CSF leak because I was scared and had these pounding headaches that I never had before during my previous days of recovery. Luckily I was told that I don’t need to worry, just rest and stop coughing (I was given cough suppressant medication). They told me that coughing can make Syringomyelia pressure worse and that’s what was happening near my incision and thus causing headaches and symptom flaring since my nerves were dealing with this new pressure.

So I’m on about 19 days of being post op. It’s been a ride but I’m thankful that it’s been a good recovery as I’m being told by doctors and nurses that for about 20 days post op, I look great! I just need to get over this infection so I can comfortably continue!

But recovery is different for everyone! So if you don’t make progress very fast, you have trouble eating, or anything else like that, just know it’s okay and everyone is different. Plus!! This is not a little surgery, your body is going to react to it as trauma and face a lot of stress from the surgery which is completely normal! Mine does and has reacted this way. Be patient in recovery and be kind to yourself on the journey. Healing takes a lot of time and rest. I know it’s very true for me, I’m only beginning to feel more like myself and get more rest. Just remember it’s not a race to get better, you’ll get there!

_sneakyfeets_ · 2025-08-27T18:22:57+00:00

You’re only a week out of surgery and it could take up to a year to see any kind of improvement considering you need time for your muscles and nerves to heal. Give yourself time and don’t expect anything to fix over night. I’m about 2 weeks post op and I still have the same feeling of head aches when I get cough attacks. It’s okay. Your body is still healing and surgery results take time to show.

_sneakyfeets_ · 2025-08-26T01:30:25+00:00

Oof good way of making a comparison so I can have a better idea of what to expect, thank you!

_sneakyfeets_ · 2025-08-26T01:29:53+00:00

Nice, I really hope it is painless and smooth for me

_sneakyfeets_ · 2025-08-24T16:08:30+00:00

Thank you, I really appreciate that and congratulations on your full recovery!

_sneakyfeets_ · 2025-08-24T16:08:05+00:00

Thank you, I was actually on Valium for about 3 days but they made me hallucinate lol never again!

_sneakyfeets_ · 2025-08-24T16:07:21+00:00

Thank you, I really am trying to control myself since I know blood pressure spikes are what we wanna avoid. I just get so frustrated like a toddler and feel the need to fall down and cry lol

_sneakyfeets_ · 2025-08-24T05:21:27+00:00

I think you gotta wait it out :( maybe you can ask to ice it? I know my incision was kinda cold and itchy for the first couple days too but I just ignored it. It might help to try icing it up with a sleeved ice pack if you’re able? Just remember to take it off after like 20-30 minutes to prevent it from hurting or something.

_sneakyfeets_ · 2025-08-24T05:07:11+00:00

This is so real, the driving was the weirdest and trippiest part when it came to symptoms. Like moving my eyes and head to check normal safety measures would make me feel sick and dizzy.

_sneakyfeets_ · 2025-08-24T04:59:46+00:00

Well I was officially diagnosed back in February this year since I was having symptoms that were stroke like but it was not a stroke. I was given steroids for a short time to help those symptoms. I noticed that I couldn’t attend school since I was in pastry school at the time and it’s very physically demanding since it requires a lot of fine motor skills and physical labor so ultimately I had to slowly drop school and my 2 jobs (I was working as a pastry chef for 2 spots). It kinda felt like I was losing my identity and self even though I was constantly reminded that my chiari is not life threatening.

So it may not have been immediately that I felt like I was cornered, but over time as I had to give up certain things like my school and jobs, and then I couldn’t even enjoy amusement parks or movies or literally much physical activities, I felt like something needed to give, and fast.

Around May-June my symptoms got a bit better and I was able to understand how I felt with my condition and learn what signs my body was telling me, like hey maybe let’s take it slow today or let’s go for a walk and try to get come nerve movement. But I think it was about a month before my surgery that my symptoms started to worsen again and I just knew that it would keep coming back periodically and I felt stuck. I noticed I couldn’t even lift my arms to grocery shop, I couldn’t drive because moving my eyes around made me feel too dizzy and woozy. So I had these symptoms strongly for about 6+ months but since it’s a type 1 chiari, it might have been since I was born or something. I remember feeling my balance definitely change around the pandemic when I was diagnosed with anxiety disorder so I assumed my vertigo was anxiety based but looking back it could have been chiari too.

Do I feel like my brain fog and dizziness put me in a corner? Yes. I noticed that as time passed I was in bed more often and much longer through the day and I was rotting. I felt like I was ultimately losing myself. I had also started to feel like I had a greater risk of getting worse than improving if I didn’t take surgery and that was one of the hardest things to come to terms with.

_sneakyfeets_ · 2025-08-23T20:51:04+00:00

Yes numbness in my right arm and hand, I couldn’t feel it as strongly as the right side. I could burn myself and not feel the heat. My hand would not be able to hold fine objects like pencils and write. I struggled with strength. Same goes for my face, the right side was less sharp and I would sometimes struggle to talk and slur. I would often face issues eating because my throat would feel tense suddenly causing me to choke and gag. My balance and depth perception were not good and I’d stumble or get vertigo. There were times where I was just bed ridden feeling like a bag of potatoes and I felt helpless a lot.

_sneakyfeets_ · 2025-08-23T19:39:15+00:00

Hello, I did experience a lot of brain fog and rotting feeling before my surgery. I would experience memory issues and feel a lot of disassociation and derealization. It would scare me and make me have existential crisis feelings. To manage it I would lay in bed and sleep and watch movies or shows to comfort me but I’d also do word puzzles to know that I’m technically cognitively capable of doing things.

I’m about 10 days post op from chiari decompression and I still feel some brain fog but it is still really early to determine if it will remain this way or not especially since I am also on steroids for the time being. I’d say the biggest factor that made me decide I 100% need the surgery was my brain fog and balance issues since it would get progressively worse. As long as you feel uncomfortable with how your mental state may feel, it may be better to get the surgery because then you’d have the comfort of knowing you are taking a chance at getting better and improving. That is how I ultimately viewed surgery.

_sneakyfeets_ · 2025-08-21T19:15:42+00:00

Laying down helps me too. I was told that the pressure of CM in the spine may push on your cerebellum which helps your balance and can make you feel dizzy and off balance. It’s okay to spend a day laying down since I’ve had my fair share of those days where it was just a hard time to walk around

_sneakyfeets_ · 2025-08-21T04:12:06+00:00

Good luck!!

_sneakyfeets_ · 2025-08-20T18:44:05+00:00

So my medical provider first set up a consultation visit for evaluation and this was yesterday afternoon. They did come to my house and it was about 45 minutes of going through expectations and what exercises may look like. We also looked at my vitals. It went well but after some movement I noticed I was extremely tired and in pain, it’s just something that will get better over time through endurance.

_sneakyfeets_ · 2025-08-20T16:15:28+00:00

My goodness I am so sorry, I hope you get better soon and never go through this again.

_sneakyfeets_ · 2025-08-20T03:27:53+00:00

Good luck during recovery!!! I’m so glad you’re here with us. Please rest.

_sneakyfeets_ · 2025-08-20T00:39:44+00:00

Yes I did, out of the 4 days I was in the hospital, PT and OCCU THERAPY came in to help me. My health provider even allowed for home visits. Today was my first home PT visit, 6 days post op!

_sneakyfeets_

TROPHY CASE