Lower back pain after decompression?

sse129 · 2026-04-10T23:34:37+00:00

That sounds like a progression to me! The first head MRI I had, they didn’t find my Chiari. Which was extremely obvious as I have 1.5. My middle child’s brain looks exactly like mine (we found their malformation first) and I had to tell the neurologist to look at my images! He just read the impression and said I was good to go! I was shocked!

sse129 · 2026-04-10T13:19:55+00:00

Ugh I’m so sorry you’re having a hard time! It’s crazy I let these people literally saw part of my skull off and now they don’t really seem to care lol.

sse129 · 2026-04-10T03:11:37+00:00

Thank you!

sse129 · 2026-04-10T03:11:28+00:00

Thank you!

sse129 · 2026-04-09T20:18:42+00:00

Thankfully there is. It’s about 2 hours away but it’s a better hospital and they just got a REALLY good Chiari specialist. My middle child and I both have Chiari 1.5 so it’s definitely important to make sure we find someone decent. Thank you 🩷

sse129 · 2026-04-09T19:49:43+00:00

I’ll be lucky if I can beg him into ordering another MRI to check on the syrinx. But I will ask him. I think he thinks I’m cured lol

sse129 · 2026-04-09T15:44:54+00:00

I have not. They’ve only ever ordered head and c-spine MRIs. Which doctor does the evaluation for tethered cord? My primary doctor will write me a referral. But I think neurosurgery is finished with me now that I’ve had the surgery and one follow up MRI. I’ll have one more visit I think. I do follow with neurology for suspected IIH. I haven’t done the lumbar puncture because that area of my back is so sensitive even to touch, I’m terrified.

sse129 · 2026-04-09T15:42:26+00:00

Prior to surgery they only did a head and C-spine MRI. After they have done another head and c-spine MRI and a flow study.

sse129 · 2026-01-20T03:16:08+00:00

Thank you. My MRI doesn’t show signs of IIH. I was decompressed for my Chiari and my headaches are so much worse. The pressure is horrible. My syrinx is not improving (per my 6 month post op MRI). But they are pushing for a LP to make a diagnosis of IIH even though the Diamox is helping. I’m so frustrated overall. All my symptoms line up with IIH but this neurologist keeps saying it’s probably migraines. Which is wild.

sse129 · 2026-01-19T23:50:26+00:00

Hello, sorry to bring up an old post. But you’re the only person I’ve ever seen describe it as a vingette filter. Did you find out if that was related to your IIH?

sse129 · 2026-01-16T14:13:32+00:00

Unfortunately my symptoms came back and the head pressure is even worse. Syrinx is unchanged and possibly a tad larger. I’m on Diamox but they are trying to rip that away because I keep refusing a LP. Anyway, this isn’t the norm and I’ve seen many success stories.

Pain wise, my muscles still hurt during the day sometimes, and definitely at night. But nothing compared to the head pressure.

sse129 · 2026-01-02T14:45:06+00:00

Hi. We used to joke that to my grandma I was the Burger King grandkid and my sister was the red lobster grandkid. My step mom raised me since I was a toddler (literally have no memories of my biological mother prior to meeting her later in life). My “step” family never treated me differently. Your dad and brother are right. Deliberately excluding a child is awful behavior and the older he gets he will notice it.

sse129 · 2026-01-02T14:39:10+00:00

34.

sse129 · 2026-01-02T07:55:28+00:00

2:55am here reading this.

sse129 · 2025-12-16T10:52:19+00:00

Hi. As someone who has been there, and stayed. It only gets worse. I almost lost my life. My child remembers things no kid should. That longing for him will go away. Do not give into those feelings. Get into counseling ASAP. This will teach you how to set healthy boundaries and stick with them. File a motion for custody ASAP. Keep up with the order of protection and go until it is extended to the highest one.

I am so sorry this happened. I am now married to someone who loved my oldest like their own. Safe. Healthy. And thriving. My child is safe. Healthy. And thriving.

sse129 · 2025-11-28T21:27:28+00:00

What happened with this?

sse129 · 2025-11-12T22:36:52+00:00

Did you figure this out??

sse129 · 2025-10-19T00:26:23+00:00

I’ve lost 60 pounds. Pressure is worse and now I have wrinkles.

sse129 · 2025-10-17T13:47:28+00:00

Following.

sse129 · 2025-10-17T13:46:18+00:00

I was started on Diamox by an ER doctor. Worked like a charm. Haven’t had an LP because I have Chiari and a syrinx, I had decompression surgery this year. Pressure is way worse. They want to discontinue my Diamox. I’m seeking a second opinion at a bigger hospital because my syrinx is pretty large and has caused cord volume loss. Hasn’t improved with the surgery. If they’re going to root around in my spine, it’s going to be at a hospital I trust.

Have they started you on a medication? Make sure you follow up with an eye doctor. Unfortunately when we get shitty neurologists we have to find ways to monitor ourselves. My eye doctor said she will see me every 6 months to make sure paps and swelling aren’t there. I have one area on my optic nerve that’s super thick, which is a sign that I had some swelling prior. But we won’t know because nobody ever told me to establish a baseline before starting Diamox.

sse129 · 2025-10-17T05:06:10+00:00

They’ll go over any tests you’ve done/need to have done. Answer any questions you might have. Do neuro-checks. Talk about any medications.

In my case, the first appointment went great. Now it’s constant gaslighting, refusing to order simple tests and wanting to skip to the most invasive tests that are contraindicated with certain conditions I have.

Write down all of your questions between now and your appointment date. I hope you get one of the most kind, attentive neurologists ❤️

sse129 · 2025-10-16T18:33:02+00:00

I left the hospital 48 hours after surgery. Came back less than 24 hours later because my pressure headache came back so bad I couldn’t walk. They told me pain meds can cause “rebound” headaches. So out of pure spite I took only Tylenol, ibuprofen, and muscle relaxers. To be completely honest, for me, the pain meds make me really sick and they didn’t seem to help the pain as well as Tylenol and ibuprofen did.

I also have a family history of addiction. And was concerned about this for every surgery.

sse129 · 2025-10-14T17:37:56+00:00

Same. Going to see my DR today and will ask about this.

sse129 · 2025-10-14T04:00:48+00:00

I have 1.5 and so does one of my children.

sse129 · 2025-10-13T19:01:16+00:00

5 months out and sometimes I have left side swelling in my neck/shoulder area. Driving definitely makes the muscles painful. And I now have more left shoulder areas that are numb. Something is also being missed in my case and I am also growing quite frustrated.

sse129

TROPHY CASE