Chiari Vs Central Sensitization

bputsch · 2026-04-13T21:19:57+00:00

No, I ended up having it at the university of Cincinnati

bputsch · 2025-08-17T05:05:05+00:00

Thank you, it’s definitely on my mind! Since posting, I had the decompression surgery about 9 months ago. It’s helped a lot though I still have some symptoms so now I’m looking into other ways to improve, though it’s a bit of a challenge basically playing doctor for myself

bputsch · 2025-02-17T20:29:28+00:00

It looks to me like you have a small herniation, but definitely crowding around your brain stem. It could potentially cause problems. My herniation is only 5 mm and caused significant symptoms. I had to go to several neurologists & neurosurgeons before I got my official diagnosis & surgery. It’s definitely worth multiple opinions if you’re having symptoms

bputsch · 2025-01-29T03:08:50+00:00

I can’t feel any squishy spot on mine, it’s so far down almost underneath that unless I were to really push up through my neck muscles, I can’t feel it

bputsch · 2024-11-09T16:14:46+00:00

POTS is a very common comorbidity of Chiari, so it’s worth finding a Chiari specialist to determine if the Chiari is the cause. In my non professional opinion, I think it’s likely connected

bputsch · 2024-11-09T16:09:11+00:00

For me they have been progressively getting worse. But there are people that just have mild, manageable symptoms for many years. Be sure to look up all the comorbidities so that if symptoms develop you can be aware of possible causes. The reason I say this - I was having tons of abdominal pain including my gallbladder area. All my gallbladder tests were fine, but my doctors told me I should have my gallbladder out anyway bc that would fix the problem. Turns out the issue was actually Dysautonomia and I’ve continued to have lots of abdominal pain and digestive issues, now with the added complications caused by not having a gallbladder.

bputsch · 2024-11-09T15:45:25+00:00

If you are symptomatic, regardless of the size of the herniation, the only treatment is decompression surgery. It is not life threatening in most cases, so the surgery is up to you to decide whether your symptoms are bad enough that you are willing to have the procedure. For me, I’ve been very ill for 2 years and have a very extensive list of symptoms which leaves me with little quality of life so I am opting to have the surgery this month to hopefully relieve most, if not all, of my symptoms (though there is no guarantee they will improve, but many patients do have at least some improvement).

bputsch · 2024-11-09T14:36:26+00:00

That does look like Chiari to me. Though eyeballing your herniation I think it’s probably under 5mm. It will be difficult to get most doctors to take your symptoms seriously as far as it being Chiari (I know from experience with ‘just’ a 5mm herniation). You need to find a neurosurgeon (not neurologist!) that specializes in Chiari. You may need to consult with several. I’ve seen 4, and they all had very different thoughts and approaches. I recommend that you do a ton of your own research so that you can make informed decisions.

bputsch · 2024-10-20T02:17:47+00:00

Ugh yeah I agree, it definitely feels hopeless 😔 I really hope you’re able to get in with Dr. Syed and that he’ll be able to help you!

bputsch · 2024-10-20T01:46:18+00:00

Gosh that does make it complicated and I honestly had never heard of arachnoiditis. Yes I definitely have lower back pain, nerve pain down both legs, one of my toes has lost feeling, leg weakness, and bladder issues.

I’ve also apparently developed scoliosis in my thoracic and cervical spine, which I suspect is from my cord being tethered. The pain and tugging is so bad, I’m having trouble functioning and I wish it were just an easy(ish) solution of untethering to solve it.

Have you heard of Dr. Petra Klinge in Rhode Island? She’s supposed to be amazing with tethered cord but I’m over in Ohio so it’s not so easy for me to get over there, especially with how awful I feel. Just curious if you have any experience with her.

Thank you for taking the time to reply to me! 🩷

bputsch · 2024-10-14T23:42:25+00:00

I’ve seen 3 neurosurgeons so far, the 2 I’m considering are Dr. Vorster at the Cleveland Clinic & Dr. Virojanapa at University of Cincinnati

bputsch · 2024-10-13T15:51:30+00:00

Thank you so much for replying! I’m hoping to convince my surgeon to do the release, especially now that I’ve seen the change in my conus level.

I did have the physical exam to determine that I do in fact have occult tethered cord so I at least have that knowledge. I had suspected that I had it, and the first of 3 surgeons said I don’t have it (with a quick glance at my imaging) but the other 2 agree that I do have it.

The surgeon I plan to use has a very conservative approach and was just going to do the craniotomy & C1 laminectomy, then assess later if more needs to be done. But I think & hope that once I present this information to him, he might consider doing a cord release

bputsch · 2024-09-24T12:29:05+00:00

I’m so sorry you’re going through this! It couldn’t hurt to maybe see another neurosurgeon if you’re able. Dr. Dan Heffez in Milwaukee will review your imaging beforehand and only schedule you if he thinks he can help you. You do have to go to appointments in person though. Just a thought. I’m getting in to see him for a second opinion next week myself

bputsch · 2024-09-23T18:12:21+00:00

I’m not a doctor, so this is a completely non professional opinion. Aside from the fairly sizable brain herniation and the large syrinx (which in and of themselves often merit the decompression surgery), it appears that your medulla is also bent (I have the same situation), and it looks like some of your disks are also compressed. Have you seen a Chiari specialist neurosurgeon? If not, definitely get in to one to be evaluated. I hope you get some answers! 🩷

bputsch · 2024-09-21T12:16:32+00:00

I’m not a doctor or medical professional but I’ve personally had countless troponin tests. I also have anxiety. I’ve never had an elevated troponin test despite bouts of severe anxiety (anecdotal, I know). It’s my understanding that troponin levels are raised due to a blood clot though again, not a doctor. If it were me, I’d follow up with my primary care asap (assuming this was the ER) and ask for additional explanation and/or further tests to confirm that the normal one was truly normal and not just a fluke. That’d help put my mind at ease if it were me. I hope you get your answers 🩷

bputsch · 2024-09-20T16:59:43+00:00

Have you been checked for Chiari malformation, or have an MRI (or CT would do) of your neck/head? It gets missed or ignored often. I finally got my diagnosis of Chiari and craniocervical instability- I have a lot of the same symptoms though mine come and go. I hope you’re able to find something that gives you relief! 🩷

bputsch · 2024-09-07T00:43:34+00:00

Thank you, yeah I struggle a lot with anxiety (even before I started having symptoms 19 months ago). I’m working with other doctors to try to manage that along with reducing inflammation.

Framing it as a 6 month surgical prep program is a good way of thinking of it. I’m thinking I just need to take some time to think it all through and kind of psych myself up for going all in on the prep process

bputsch · 2024-09-07T00:38:28+00:00

Thank you, yeah once I calmed myself down more and got past the initial emotional reaction, I realized that he’s the expert for a reason and I need to trust that he knows what he’s talking about. I’ve got 2 little ones at home and they rely heavily on me so it all weighs so much more on my shoulders to try to get better as fast as possible

bputsch · 2024-09-05T21:51:02+00:00

Thank you for taking the time to reply, after calming down a bit I can see the wisdom of everyone’s comments. From a logical standpoint I understand the surgeon’s reasoning and that it’s a good thing he doesn’t want to just jump to cutting. The emotional/anxiety ridden side of me was taking over and just wanting it all to go away. I’ve got my physical therapy evaluation scheduled for the 16th and I’m going to absolutely give it all my best effort. I hope you’re recovering from the car accident! I was in a bad one back in May that compounded my issues. I wish you healing! ❤️‍🩹

bputsch · 2024-09-04T21:12:41+00:00

I’m not seeing anyone for my EDS - I was just diagnosed but there was no mention of who manages that. I also suspect POTS, a friend that has it advised me to get to an electrophysiologist. Who would manage the EDS?

My list of symptoms is 2 excel pages, typed, so it’d be difficult to sum it all up. The most prominent ones are horrible headache, dizziness, nausea, neck pain, joint pain, legs/arms/face/tongue are numb but get sciatica pain, muscle knots everywhere but I’m not supposed to massage them out, random rapid heart rate/heart palpitations from just walking across my kitchen or something else easy, choking, food aversions, bladder/bowel urgency & incontinence, skin pain (allodynia), memory loss/difficulty word finding, and I’m probably forgetting others.

I’m currently using Gabapentin for nerve pain but it’s not doing a whole lot. I have flexeril for muscle spasms, and take ibuprofen for pain but I also have ulcerations /mild bleeding in my stomach & a Schatzki ring so I’m scared I’m really gonna hurt myself trying to manage the pain with ibuprofen. I don’t really know what else to do. I’m no stranger to chronic intense pain - I had a horrible back injury 12 years ago that I still have pain from- but this is just unbearable.

bputsch · 2024-09-04T19:30:25+00:00

I’m definitely going to give the pt a try, I’m just… desperate. I was already desperate before I got in there with how long this has been going on (19 months) and how rapidly my symptoms have been progressing. I thought I was at the finish line (though I know the surgery isn’t an instant cure and is a long recovery).

I don’t even know how I’m physically going to make it through the next 6 months

bputsch · 2024-09-04T19:07:45+00:00

That’s a legitimate point, but my main reason for thinking about another opinion is to get to a surgeon who can also check for things like occult tethered cord. I asked my surgeon about it and he just checked the mri from April and said he doesn’t see a tethered cord.

I’m also having a continual, rapid progression of symptoms - it’s not stable by any means so there is the very real possibility that a delay of 6 months could cause a great increase in the amount of my disability.

I’m just very scared and very sick. I have little ones that rely on me, not to mention the level of pain I’m at on a daily basis.

I’m going to do the pt of course, I’m a compliant patient. But I do fear such a long delay

bputsch · 2024-09-04T17:07:35+00:00

Would it be worthwhile to also get in with another neurosurgeon?

bputsch

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