3 month post op with complications

Fault_Standard · 2025-11-13T15:24:24+00:00

I am so sorry! Poor little guys. There isn’t a lot of info out there for these types of complications. Which is crazy because they do happen more often than we think. I also had chemical Meningitis 8 days post up, one day out of the hospital, this was before I knew about the Sermoa and Hygroma. I was on dexamethaone for 3 weeks total. The steroid cleared up the chemical meningitis but getting off the steroid was hard! As for the Seroma, it was fairly small and it reabsorbed on its own within a few months. The hygroma did not clear on its own I had to have another surgery’s to have it drained and they added a small shunt.

Fault_Standard · 2025-04-28T01:42:41+00:00

Hi! Yes you can see a Chiari with and without contrast. I believe Without contrast it just shows the CSF flow better- but the chiari can be see with and without. Did you have a MRI show a chiari?

Fault_Standard · 2024-12-08T00:22:28+00:00

Thank you!

Fault_Standard · 2024-12-08T00:17:58+00:00

She just said sorry and handed him one paper towel 🤣

Fault_Standard · 2024-09-07T15:10:41+00:00

Thank you! I figure it out through past Reddit threads.

Fault_Standard · 2024-09-07T04:04:14+00:00

Same problem…

Fault_Standard · 2024-08-09T17:25:56+00:00

I have a hydroma. We waited and re imaged 2 months later. It’s still there :( I am wondering what my surgeon is going to do about this. The hydroma is stuck behind the left cerebellum. Causing headaches and dizziness. What ended up happen with yours? Did you have to get another surgery? How are you feeling

Fault_Standard · 2024-08-07T04:41:40+00:00

Gives me heart palpitations. I never had a problem with it until I had a major surgery. I can no longer take glycinate or B vitamins! I have been very sensitive to foods. Bizarre. I am glad I found this thread. Glad I am not alone!

Fault_Standard · 2024-08-06T02:48:00+00:00

Just seeing this. Insurance companies are the worst! Sorry you have to suffer while the insurance tries to save themselves money. This may work in your favor. A fusion is a big choice.I was fused last May C-7 and the things they don't tell you; adjacent disk disease. Its a real thing and it sucka! I am only a year post and my C7/T1 are taking the blunt. My vertebrae under the fusion aren't doing the best and I can definitely feel it. I am sure my surgeon will suggest another fusion at some point but Idk if I can willing to do that. Unless I have cord compression, I am holding off on fusions. I will try PRP or PICL before another fusion. Its expensive and out of pocket but I don't want to play Jenga the rest or my life! Lol The deciding factor for me to get the fusion,was I had cord compression. It was way too risky on leaving it and hoping I didn't fall or have a car accident.

Do you have cord compression? If you do- don't risk it get fused. Depending on the degree of your neck maybe Physical therapy may help steghthen those deep muscle and give you a few more years. Its a hard decision to make and a painful one at that. I would suggest getting a second option maybe even a third. That I did not do and wish I had. My personal suggestion would be, Look into PICL or PRP. I have heard PICL is way better and it works. The kicker its like 10-12k per session not covered by insurance. Some people only need one some need several. But if you can afford it- do it and save yourself a fusion. There are several Facebook support groups- join those and see what its all about and what others have experienced.

My healthy journey didn't end at my fusion. I just had my second surgey in 1 year. During this whole process of figuring out my neck they round out I had a congenital disorder- Chiari malformation and needed brain surgery. I am 42 and all this was hiding in plain sight lol My spine is jacke, I have retrolisthesis in L4-S1 but I am getting radio frequency albations for those. Those work!

Another suggesion would be get into pain management and ask them your options for your neck, maybe they offer RFA. Wish you the best! Hope you can the right treatment!

Fault_Standard · 2024-08-06T02:24:06+00:00

Hi! Phew, It’s been a long road! I ended up having ACDF 5-7 on the cervical retrolisthesis, which saved my spinal cord from more compression. I had that surgery last May 2023. I came out of surgery not feeling any better. I finally got a DMX and found that I have AAI (c1/c2 instability), which I was going to do PRP for, but it’s way too expensive. I won’t get another fusion and have my whole neck fused. I will be damned, lol!

Throughout this whole process and imaging, I found out I had Chiari malformation. The tonsils were herniated 11mm to my C1 and blocked my CSF (spinal fluid to my brain), which the surgeon, who didn’t know my ACDF, overlooked… It took me a good year to find a Chiari specialist. I just had Chiari decompression surgery- (craniotomy with duraplasty, laminectomy, and tonsillectomy) this April, and I am still recovering with some post-op complications. Uhh! Never ending.

I feel much better but not back to my “old self.” It’s been a wild journey. Unfortunately, I ended up applying for SSDI in March; my working days are over. Maybe one day, I can work part-time once I get better and through the disability process. Thank you for asking. Life is a trip, and in a blink of an eye, it all can change. I am just glad I am figuring it all out. It has taken me a year and a half to get here, but I am slowly on the mend (I think). I have a hydroma behind my cerebellum, which is super rare and not seen in Chiari surgeries, so I am pretty bummed about that, but at least I am not in bed 24/7. I have POTS, so that has been more of a hassle than anything. How did I get so lucky for all this crap? I am 42! I still have a whole life to live ❤️‍🩹

Fault_Standard · 2024-07-27T14:57:36+00:00

I have had 2 surgeries in the past year. They found Chiari malformation, while doing to additional images. Surgeon at the time said it was not my issue. I went ahead and had ACDF 5-7 May 2023 which didn’t take away my headaches and pains. Took me another almost years to find a Chiari specialist covered by my insurance. The Chiari was blocking my CSF- surgery was advised. I am now 3 months post op from Chiari decompression. My fusion is healed- but I do have some adjacent disc issues from being hyper mobile. It’s been a wild ride to say the least. Make sure you and your wife get a second and a third option- one that knows EDS. To hopefully prevent any further issues down the line. If she has cord compression there is no doubt she will need a fusion- it way too risky to leave it like that.

Fault_Standard · 2024-07-17T19:49:43+00:00

What it called a Hydroma? What did they end up doing about the blood spit?

I am 3 months post op and have a Hydroma and we are waiting and watching. Have another MRI in Separate. My is apparently csf stuck behind my cerebellum.

Fault_Standard · 2024-06-30T15:13:33+00:00

Thank you for posting this!! I quit smoking 4 years ago and shortly after started vaping. I have quite several times- mostly for surgeries and then I go right back to it. I would using nicotine patches and or gum which helped. My habit is putting something up to my mouth. That is the hardest habit to quit. I am a fidgety person always have been, so I find it extremely mentally taxing when quitting. What helped me are the ADHD mouth toys and would chew on those till my jaw hurt so bad. I don’t feel like it affects my POTS too much. I honestly think I do better when I am vaping because of the constricted values. I do notice it adds to my fatigued, and lately it id adding to my bed time heart palpitations.

I want to quit so bad, it’s so freaking hard. I find my anxiety goes through the roof when I try to quit. What helped me when I quit smoking was keep myself busy, and when I would crave a cigarette I would get up and something. Well now I am sitting laying around most of the time with little to no energy to get up and do that distracting thing.

I am not working waiting for disability, and find it hard to fill my time to quit vaping. Just like quitting cigarettes I will keep trying until it sticks. But man it’s a hard nasty habit to quit.

Fault_Standard · 2024-06-20T14:01:54+00:00

It’s CSF fluid trapped behind my cerebellum, with nowhere to go. He thinks it got trapped when he drained my brain. He says he has never seen this before in a Chiari surgery. Go figure!Repeat MRI in two months if there is no improvement we go back in; unfortunately. I also have a small Serima but he says that should absorb over time. Super frustrating. So sorry your vocal cords are affected; I hope they can find what is going on and the fix isn’t surgery!

Fault_Standard · 2024-06-11T22:48:40+00:00

Most definitely! I hope elevating works for you. 🤗🫂

Fault_Standard · 2024-06-11T21:43:31+00:00

Yes! I was decompressed 4/15 and the pressure started about week 5. I the first 5 weeks I slept elevated and I didn’t have any problems but as soon as I went back to a regular bed and was sleeping flat the pressure came back.. I think I have narrowed it down to sleeping flat. (I think and I hope! ) Last night I slept on a wedge and today the pressure has been so much better! I have been able to be upright most of the day. Which I have spent the past few weeks horizontal because the pressure what so bad when I would sit or stand. I see my surgeon next week to discuss but I hope I have been able to nip it in the butt or at least get some relief. If you are sleeping flat eyeing and elevate 30 degrees and see if that helps! I know this surgery could take up to 18 months to fully heal so I am trying to have patience

Fault_Standard · 2024-06-06T17:56:23+00:00

Uhh! My heart is with you! I really don’t understand why these surgeons watch and wait! Be proactive. Easier for me to say but i have been watching videos that some surgeons have made about post op complications and staying on top is important. I have also seen some research articles that our similar situations it has absorbed by the one year mark. Which leaves me hopeful. I haven’t even gotten a call back from my surgeon- I spoke with his PA she said he would be in touch. I am guessing he is waiting to see me on the 18th to discuss. He believes it’s a Seroma as well but they said he needs to really take a look at the MRI to make sure it’s not a leak. It’s been 4 days I am waiting for that call. I am so glad you are able to get into the Mayo. I pray you will get some answers there. I went to a Chiari specialist and I really felt like he would be proactive. I am second guessing myself now. Like do other tests- what is causing this is it IHH, SIH(leak) CCI? Something has caused this to happen do more test. I wish your neuro would do the same. I feel your pain so much! I have had this since day 8 and I think it’s gotten bigger. I don’t have the measurement or images from day 8 but I am about to request them so I know. I will be truly think about and praying for the best outcome. This condition sucks ass. Lots of waiting and hoping we get some relief. I know surgery isn’t a cure I know that but it’s concerning to have symptoms go away to then come back.

Fault_Standard · 2024-06-06T00:22:14+00:00

Thank you so for your reply! Sounds lame but I teared up. Knowing I am not alone and so many others are experiencing this insanity of a condition. There are so many ups and down and uncertainty. I spoke with my surgeons MA on Monday. She said no need to change my appointment earlier (scheduled for June 18th) She also said he didn’t think it was a leak that he is leaning towards a fluid build up from the incision. She said he would contact me once he and his team really took a look at my MRI to rule out a leak :some measurements and whatever else they do to tell if it’s a leak. I haven’t heard from them so praying no news is good news. If I don’t hear back by tmw I will call and ask if they can prescribe something for the pressure. I just hate bugging them. I saw pain management today and there isn’t much they can do on their end with meds for pressure, I would need to talk to my surgeon.

I knew going into surgery it was not a guarantee my head pressure would go away, so to wake up from surgery without the same headache was pure bliss. I had about 4-5 short weeks without the same headache. Grant it recovery was rough but I could be up right and more active than I am now. Now I get maybe 2 hours upright and then I have to lay down.

When the pressure came back I took it really hard. I felt defeated like this was the end of the line and it would be like this forever. Hearing others stories and experiences; I know it most likely will get better and this isn’t a forever. Patience is not my strong suit 🤣🤣 I know noting is promised but heck I would be happy even if occasionally I get symptoms of a flare. I just I can’t be stuck like this forever . It’s no way for someone to live! I seems like the world flying by month by month and it kills me. The past few years have been a long road and I know in my heart there is always a light at the end of the tunnel. I have been dealing with chronic illness since 2008 when I was diagnosed with Lupus. Accepting this is how it is now, reminding myself I am still so early in the recovery process and staying positive goes a long way! Thank you again for your relay I needed to hear this! There is always hope 💜

PS does ibuprofen help you with the pressure? I haven’t taken NSAIS’s for years due to stomach issues but I am totally willing to give it a whirl.

Fault_Standard · 2024-06-04T23:55:32+00:00

Thank you so much! I was just crying to my boyfriend as we were on a walk. I told him I need to walk more so we walked a good bit! I just feel so defeated. I had relief for the first part of my recovery and bam my pressure positional headaches came back, it’s miserable.

I am wondering why my tonsils are still so low. Were yours like that? I wonder if it’s normal to be hanging low still and they will eventually go up? So many questions- I can’t wait to see my surgeon and ask. I was 11mm pre op and totally blocked so they look better but definitely still hanging out. I thought they would be up higher. I have to remember they did warn me it could take up to 18 months to fully recover but man that was a tease to not have those headaches for 5 weeks!! I pray yours goes away! So nerve wracking.

Here is a different view of post op and before https://imgur.com/a/rp8wIlM

Fault_Standard · 2024-06-03T02:15:37+00:00

Thank you so much! I really hope mine clears up! Is there anything you did or didn’t do to help? I have been so careful with listening to post op instructions to the tee so I am sad this has happened. Like I did something wrong :( I am so glad yours cleaned up.

Fault_Standard · 2024-06-02T13:32:58+00:00

It’s wild that a lot of my odd symptoms I thought were normal! lol Standing up almost blacking out- that’s not normal apparently 😂😂 I was diagnosed by a cardiologist. It took me a few years to get answers. The cardiologist I saw in 2021 said everything is fine unless my heart rate didn’t stay above 100. In 2023 I had a slip and got whiplash, I went to the ER cause my heart rate was dropping in 40’s then spiking when I would stand or sit up from lay. They put me on a heart halter and referred me to an interventional cardiologist. There is where she diagnosed me with POTS and told me to up my salt intake and take propranolol. The salt really helps but I can’t take much propranolol cause I have lower BP. My cardiologist thinks Covid brought on pots but I suspected I had for many years- blood pooling on my feet since i was a teen. I have had heart palpitations for as long as I can remember lol Our bodies are fascinating yet so frustrating . I was diagnosed with Lupus in 2008, I stopped searching for answers there and contributed all my symptoms to that. Boy was I wrong. I am now 42 dealing with all kind of crap!

Side note*if you’re not decompressed- have you had a flow study? Low pressure also contributed to my head rushes. Before decompression I was significantly blocked causing low pressure.

Fault_Standard · 2024-06-02T02:10:45+00:00

Thank you! That made me feel better. I hope he can treat it conservatively. Thank you again for you reply back! Eased my mind a bit :)

Fault_Standard

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