u/Far_Wonder_208

Update again:
I had a revision decompression surgery on August 14th to open up the dura for duraplasty. Given the failed attempt on August 6. I also developed Staphylococcus aureus which is the issue. I still have not been able to sit up without this intense to cranial pressure the back of my skull and my neck. Kinda like someone squeezing my spinal cord fluid when I lay back or sit up or stand up straight. This pressure is not going away. I told the neurosurgeon team this all and they keep dismissing me. Along with the numbness and tingling, I have in my hands feet face. wish I did not seem normal. Almost feels like I have a CSF leak. I'm always some severely impacted neurological issues. Has anyone else experienced something like this before?

Hi again, first post
Fresh out of surgery Aug 6th. My neurosurgeon did a bone only decompression surgery on me which took him only 1.5 hours to complete when it should have been minimal two hours to complete! I have a Chiari 1.5 with a small syrinx, hEDS, POTS, and possible CCI.
When I asked him before surgery why he wasn't going to open my dura he said because I am young (35) and he didn't need to cut it open? As anyone else been told this? No he isn't a specialist because my insurance won't pay for a specialist unfortunately. All of my symptoms are still present granted I know it takes times. I also have urine retention now which requires for me to be catheter. My skull feel like it about to fall off my neck anytime I sit up now and I have to lean it or support it on something or laying flat is the only thing I can do.
this morning he told me he was really tight inbtween my dura and cerebellum tonsils....

Thank you for sharing. Unfortunately, I wasn't able to see a specialist. I have a 1.5 cm herniation of my tonsils, a 1.2 cm inferior herniation of my brainstem, severe compression of my spinal cord which the doctor told me about yesterday, along with brain compression and a syrinx. I have HEDS, POTS, and possible CCI (I am currently wearing a neck brace). On top of that, l've lost the ability to urinate on my own and now have an indwelling catheter, so I need to see urology. I learned that he made several superficial, partial-thickness cuts and, in doing so, cut too deep in some areas, which led to multiple tiny CSF leaks that he said he repaired with duraSure. Nowhere does it mention he restored my CSF fluids. He removed 2.5
cm of bone, and only 10 ml of blood was lost over 90 minutes. I still can't sit up without feeling extremely dizzy, lightheaded, nauseous, with bad headaches, shortness of breath, and I am checking my food now.
It's clear now he has no idea what he was doing; he couldn't give me clear answers. He wanted to discharge me 24 hours after surgery, which I declined.
I went home yesterday but am still unable to walk or sit up.

Fresh out of surgery Aug 6th. My neurosurgeon did a bone only decompression surgery on me which took him only 1.5 hours to complete when it should have been minimal two hours to complete! I have a Chiari 1.5 with a small syrinx, hEDS, POTS, and possible CCI. When I asked him before surgery why he wasn’t going to open my dura he said because I am young (35) and he didn’t need to cut it open? As anyone else been told this? No he isn’t a specialist because my insurance won’t pay for a specialist unfortunately. All of my symptoms are still present granted I know it takes times. I also have urine retention now which requires for me to be catheter. My skull feel like it about to fall off my neck anytime I sit up now and I have to lean it or support it on something or laying flat is the only thing I can do.
this morning he told me he was really tight inbtween my dura and cerebellum tonsils….

Update:

Thank you for sharing. Unfortunately, I wasn't able to see a specialist. I have a 1.5 cm herniation of my tonsils, a 1.2 cm inferior herniation of my brainstem, severe compression of my spinal cord which the doctor told me about yesterday, along with brain compression and a syrinx. I have HEDS, POTS, and possible CCI (I am currently wearing a neck brace). On top of that, I've lost the ability to urinate on my own and now have an indwelling catheter, so I need to see urology. I learned that he made several superficial, partial-thickness cuts and, in doing so, cut too deep in some areas, which led to multiple tiny CSF leaks that he said he repaired with duraSure. Nowhere does it mention he restored my CSF fluids. He removed 2.5 cm of bone, and only 10 ml of blood was lost over 90 minutes. I still can't sit up without feeling extremely dizzy, lightheaded, nauseous, with bad headaches, shortness of breath, and I am checking my food now. It’s clear now he has no idea what he was doing; he couldn't give me clear answers. He wanted to discharge me 24 hours after surgery, which I declined. I went home yesterday but am still unable to walk or sit up.

Good evening Tomorrow I go under the knife again. This will be the 5th time in two years. What was supposed to be resolved with fusion of my C5-C7 two years ago has lead to L4-L5 fused, my tethered spinal cord released, then an occipital to c2 fusion. Meanwhile the entire time my symptoms have worsened. Now the occipital to c2 fusion has failed and they are going to remove it tomorrow and then play it by ear. I share this with you because I don’t want others to rush into surgeries like I have. Spinal surgery is uncharted waters regardless of what the doctor is telling you. They can make no guarantees and if you do your research almost as many fail as succeed. Go the other routes. Injections, etc. Anything but fusions. Take it from a 46 year old dad of 3 who has been put through the wringer the past two years.

Hello,
I apologize if I have grammar errors or it’s not in chronological order I have some severe cognitive/neurological issues from my chiari.
I was recently diagnosed with Chiari malformation type 1 on July 1st while I was hospitalized for histoplasmosis. After reviewing my MRI, which indicated a Chiari malformation with the cerebellar tonsils protruding 1.5 cm below the level of the foramen magnum, I learned that my brainstem is also inferiorly herniated downward by proximally 1.2 cm. Additionally, there is a small syrinx at the level of C2 in the upper cervical spine. Through research, I realized I meet the criteria for Chiari 1.5, and I asked my doctor about it. He confirmed that I indeed have a Chiari 1.5. And I could possibly have a csf leak after surgery. I also have diagnoses of hEDS and POTS.

I inquired about the possibility of craniocervical instability (CCI) related to hEDS, especially given my neck pain and heaviness, which make me feel like I can't support my head properly, and sitting upright for long periods causes severe discomfort, forcing me to lean on something for support. My doctor explained that he would go over all of this with me before my surgery, which is scheduled for August 3rd due to severe neurological symptoms.

I’m preparing to undergo a suboccipital craniectomy with C1–2 decompression, duraplasty, and possibly cerebellar tonsil reduction to treat my Chiari malformation. I have this uneasy feeling about the surgery. Any advice would be helpful.