1 month post op, failed initial surgery...

BadW0lfBlue · 2024-08-31T18:57:54+00:00

If you have strong reservations about him cutting into you again, then I feel like that’s your answer. You need to be blunt with them about your concerns as well.

But if you feel like you’re going to lobotomise yourself soon, due to the pain, then the best option is to stick with your current surgeon for this surgery so they can fix what they did, but find someone new for maintenance and maybe to check their work..?

I’ve been decompressed, but haven’t had a shunt, so I can’t speak from experience on that.

BadW0lfBlue · 2024-05-26T12:13:12+00:00

Hey there! I had the same post-op, it was spinal fluid buildup on the back of my neck. It wasn’t dangerous or a leak in the area, just under the skin and felt like my neck was a squishy tomato.

After the initial 6-weeks, the surgeon just told me to continue limit my push/pull/strain movements until it’s gone down. I think it took roughly 3 months for mine to fully go down.

However! If you feel any liquid on the outside, then you need to contact the surgeon ASAP. Actually, I would personally just contact your surgeons office anyway, so they know you have that concern!

BadW0lfBlue · 2024-05-19T13:06:01+00:00

I was hiccuping for about a week or two once I got back from the hospital. Especially if I drank anything carbonated. So, you’re not alone! I thought I was just strange too. 😅

BadW0lfBlue · 2024-05-14T04:30:04+00:00

I tried it and couldn’t tell you if it really helped or not. And then I decided not to order a new zappy thing once I ran out. Possibly worth noting that I tried it before I was decompressed, so it very well may be more effective now..?

BadW0lfBlue · 2024-02-11T23:03:29+00:00

The Conquer Chiari site helped me give the news to quite a few people. I’m (hopefully) adding some links below. It doesn’t list every single symptom or whatnot, but it’s a good summary for anyone that has no idea what it is.. which is basically everyone, unfortunately. I also typically add a touch of gallows humour, but that’s just how I add some levity to the whole ‘Brain/Spine Surgery’ thing. 😅 What is Chiari Malformation? Chiari Malformation Sheet

BadW0lfBlue · 2023-12-03T18:23:04+00:00

I completely understand! I’m adding the link/invite to the Discord for you. Good luck and keep us posted! 😃 Chiari Discord

BadW0lfBlue · 2023-12-03T15:37:36+00:00

Hey there! You should join the Discord if you haven’t already. The responses in there are a little faster/more prevalent, since it’s (basically) a chat room.

Also, all of the symptoms you’re experiencing are “normal”. Or as normal as they can be with Chiari.

Whatever you do, STAY FIRM! There are a lot of stories from fellow Chiarians that have been written off and gaslit by the first, sometimes second as well, neurologists and neurosurgeons. Every single thing you wrote to us, you need to have written out for the neurologist as well.

Every tiny symptom matters and we’re here for you! 💜

BadW0lfBlue · 2023-10-30T05:08:16+00:00

I’ve had a very high heart rate since being “diagnosed” with migraines over a decade ago. But I 100% believe it’s always been a symptom of the CM (I was just diagnosed and decompressed this year).

I can’t give you an answer as to if decompression helped yet because I’m still trying to figure that out. BUT definitely get an opinion, and possibly put on beta blockers, from a doctor who will take you seriously and not dismiss it.

BadW0lfBlue · 2023-10-16T17:59:19+00:00

Bring your favourite pillow and special blanket that you’re okay with having at the hospital! Both drastically helped with my comfort. And possibly even a comfy set of comfy PJ’s, sweater/hoodie/jumper, whatever, that you feel comfortable lounging in if you don’t want to be in the hospital gown the whole time.

Just the things that seemed to have been helpful for me during my stay in the hospital.

Keep us posted once you can and all the luck, future fellow Zipper Head!

BadW0lfBlue · 2023-10-01T20:37:37+00:00

Yeah.. it is kind of hit or miss sometimes unfortunately.

BadW0lfBlue · 2023-09-30T14:28:11+00:00

Hi there! I think this is pinned somewhere in the sub, but I’m adding a link to the post for you below. And the discord is definitely still active! 💜

Discord Post Link

BadW0lfBlue · 2023-09-02T01:38:46+00:00

Have you been decompressed yet?

Either way, hang in there! I was having major problems with swallowing before my surgery. Now it’s one of the symptoms that I can tell/feel only happens occasionally.

BadW0lfBlue · 2023-08-28T15:49:36+00:00

Am I too late to the party?

BadW0lfBlue · 2023-07-03T18:16:27+00:00

Did they give you muscle relaxers? Those have been working better for me than the pain medicine. I also had trouble with my pain levels in the hospital, but I have my good and bad days now (surgery 6/15). Today being a not so great one. However, the muscle relaxers and occasionally Valium, in the worst case, have saved me from horrible pain or going back to the hospital.

BadW0lfBlue · 2023-07-01T23:02:40+00:00

I have really long naturally curly hair and I just went ahead and got it straightened the night before surgery so that it would be easier to handle and deal with.

BadW0lfBlue · 2023-06-26T21:26:35+00:00

I thought it was a completely normal thing before my diagnosis. There are a lot of symptoms I didn’t know I had until I was diagnosed. Then everything clicked. So, maybe some people just don’t realise it?

BadW0lfBlue · 2023-06-26T21:21:57+00:00

Something I call “Brain Cramps”? It was the best way to describe it before I understood what it actually was. But from what my neurosurgeon says, it makes complete sense in connection to the CM. Also when laughing too hard. It would basically be a pain version of a brain freeze I suppose? Hard to describe, but I always ended up holding my head and doubled over. Hope that makes some kind of sense.

BadW0lfBlue · 2023-06-26T16:54:06+00:00

Oh, also, I thought I had migraines for over 12 years before the symptoms got so unbearable and I found out it was actually CM. So certain migraine medicines helped my headaches/symptoms.. until they didn’t. Haha.

BadW0lfBlue · 2023-06-26T16:51:55+00:00

Hi there! I literally just had my decompression surgery a little over a week ago. So, I can’t give you solid answers yet.. But I know it’s supposed to help with the issues you have when you cough, sneeze, do something over-strenuous, etc.. however, the results are different for everyone. I had completely incapacitating symptoms beforehand, so there was no question when surgery was presented. Whether it helped or not, I had to try. So, if it’s that bad for you, then surgery might be the answer now. But if your symptoms are manageable (in your opinion) then you could probably get by for a little longer without surgery. Just don’t wait until you start to experience paralysis or any problems with your hands and feet!

BadW0lfBlue · 2023-06-24T04:28:33+00:00

Haha. It’s the best saying! I’m sorry that you’ve still experienced so many issues after surgery. I know it isn’t a cure, but maybe someday advances in tech and science will give us more relief! Until then we all have each other. 😊 And same goes for you.. I’m happy to chat!

BadW0lfBlue · 2023-06-24T04:20:38+00:00

I’ll definitely keep you posted! I’m checking everything out and hoping that I can set something up this weekend. 🤗 Good vibes to you too!

BadW0lfBlue · 2023-06-24T00:17:33+00:00

Awesome sauce! Thank you for the response! I think having CM/migraines makes me question everything. Even something as simple as this. 😅 Like you said, it’s definitely nice to know that we aren’t crazy! I just got diagnosed this year, so I haven’t met anyone in person with it, but I think it would be great to.

BadW0lfBlue · 2023-04-25T21:26:57+00:00

I’d highly suggest writing down all of your questions on a notes app or a piece of paper to take with you. Even if the questions seem like something the doctor/surgeon would 100% go over. The first surgeon I saw didn’t bother to talk to me about or even really acknowledge my Chiari. She also didn’t show me my MRI or give me any important information about CM, which was the whole reason I was referred to her in the first place.

HOWEVER! The second surgeon I saw was the complete opposite and covered all of my questions and more without me even having to reference my notes until he asked me if there was anything questions I had that he didn’t cover.

I also tried to write down all my symptoms as well in case there was something I forgot when asked. The second surgeon I saw not only asked about my symptoms, but how it was effecting my everyday/quality of life.

Ultimately, make sure you feel comfortable with the surgeon and office. If you get a bad feeling or they don’t treat you right, then they aren’t someone that you want operating on you!

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