I’m about 3 months post op and feeling a little discouraged. I struggle with bad nausea, acid reflux, this weird gaggy feeling in my esophagus and dizziness. It’s everyday all the time and i feel about the same as I did prior to surgery at this point. I live in California and saw Stanford doctors, UCSF doctors, and several doctors from local hospitals around me that all told me my symptoms couldn’t be from chiari. I finally flew out to see an expert at the chiari center in Milwaukee and he of course confirmed all of my symptoms and their possible relation to Chiari. But he told me if the surgery doesn’t help it, then it’s probably not related and that i should move on. Well, i did go forward with the surgery… and I’m still having tingling in my face, hands and feet at times, slight neck pain, nausea, gaggy feeling, constipation, dizziness etc. 7 months ago, i was diagnosed with gastroperesis, and two months ago i was diagnosed with Ehlers Danlos even though i don’t meet the typical criteria… i guess I’m wondering if its possible things could continue to improve from my surgery, or if my doctors could be right… that it’s unrelated to chiari and i have to move on… or they’re wrong and it is related to chiari and I’m just screwed.
3 months post op is still early, but let’s face it, you’ve had brain surgery. That thing inside your skull, your brain, controls everything within your body and personally I find it a bit bizarre that the dr’s didn’t consider your chiari surgery as having an impact. I know some dr’s have the idea “…They operated, they fixed…” they did with my surgeries. They say ‘fixed’ I say another word beginning with ‘F’ but one thing I have learnt is that the medicos DO NOT like being questioned by patients. From my experience I’ve seen 10 different dr’s and gotten 10 different diagnosis, each dr has discredited the other opinions. I have come to accept that despite their own inflated opinions, they don’t have ALL of the answers. I have learnt from this that I have to manage all of this for me, not them.
They’ve told you ‘Move on’ and those are simple words to say, but a lot harder to actually do. Now, I wouldn’t say I’ve ‘moved on’ as such, I am aware, but not alarmed. If I notice a progression in symptoms I act, but otherwise I manage the best way I can.
Merl from Moderator Support
I still get nausea off and on - and I’m six years post-decompression surgery. I find that grating ginger root into a pitcher of water (or juice - which is much tastier) helps my nausea. Ginger root is a good gastronomical ‘calmer.’
My nausea didn’t start until AFTER my surgery, though. I was told that because I had half of my C1 neck vertebrae removed in the decompression process - and that my tongue was now bumping up against my spinal cord whenever I talked - or ate. The tongue’s movement aggravating the spinal cord is what was causing my nausea. The first couple months, nausea was constant. I didn’t want to talk at all!! But, nausea gradually went away. Now, it hits just now and again. Since Chiari’s squishes the brain stem and spinal cord - part and parcel of its symptoms are intestinal gut troubles. the Central Nervous System has its finger in EVERYTHING in your body. I struggle with IBS among other things.
That’s odd that you’ve been ‘pegged’ with ED. I used to belong to a Chiari support group in Charlotte, and two of the members had ED - and they tried to talk me into having it, too. Again, I didn’t fit the criteria. ED folks apparently have very loose, elastic tendons / ligaments and can bend and contort into all kinds of positions. I’ve always been extremely tight. Stretching exercises have always been a pain. Hmmm. The group still tried to convince me I had ED, though!
So there are like 13 types of EDS and not all have stretchy skin and hyper mobile joints. Do some research on that before you count it out. It’s important to be educated on every Comorbid condition.
I had my first decompression surgery in 2015 and everything stayed the same then got worse. My dr and every dr after that said they had no idea why I was having the same issues that you are. I finally went to dr greenfield in NY and he brought attention to things everyone else purposefully ignored even though it showed on my mri. I also had retroflexed odontoid, small cranial bones and basilar invagination. All of which were severely crushing my brainstem. If you think something it wrong pursue it, don’t move on. Trust your gut. You know when things aren’t right. CCI and AAI are serious and cause those symptoms too and are common with EDS also.
Read above statement. Pretty please. It’s not meant to be harsh but it’s lack of knowledge like that on Eds that henders it from getting properly diagnosed.
I definitely have done my research into EDS. Which was why I was frustrated in my diagnosis because i was boxed into H-EDS without being able to do a full work up for the other types as well. I’m currently looking into getting a third opinion. When I asked my current geneticist for a full work up, he got mad and told me I should seek psychiatric counseling. I filed a formal complaint to say the least. Did you end up having another surgery? How are you feeling now?
Sorry the do your research thing was for Beth. My geneticist diagnosed me with hEds as well. She didn’t do full genetics work up bc I didn’t have enough symptoms of the other types to warrant checking for them. I do have autonomic symptoms but we are trying to regulate them with diet changes.
My second surgery definitely helped!!! I’m not 100% but it made such a difference! I’m so much better than I was! My brainstem so squished for so long it was more for prevention of further damage but I ended up improving a ton!
And trust me I’ve heard the I’m crazy and need psychiatric help too. So glad you filed a complaint. We should never be told that!!! That makes me mad you had to go through that too.
How long did it take for you to feel better? Thats what is worrying me, I’m over three months out and still feeling like crap. Im wondering at what point do I consider it a failed decompression and look to see a different neurosurgeon. I feel like nausea and gagging feelings should be the first to go if they do get better. I just want my life back. The most frustrating part of this is not having a single doctor in my area that’s knowledgeable about chiari let alone any of its co-morbid conditions. So I’m left fighting for my own health and organizating my own care because my doctors don’t know what to do with me. It’s definitely overwhelming. And then I’m looked at as a hypochondriac because i literally HAVE to be my own advocate.
I’m so sorry! I know just how that feels and it’s heartbreaking. you definitely are not alone. After my good surgery I felt a giant difference in the first week. In fact my pain was so well controlled I walked 5 miles in NYC the week after. (Crazy right?)
When I knew I wasn’t getting true care after that first one I started within 6 months post op on my search for outside opinions. I’m in TN and no dr here is a true specialist either. So I paid to go to NC and get an opinion then paid to go to NYC and get Greenfield’s opinion. It was expensive to do both and traveling but so incredibly worth every penny!!! I’m with a true specialist now and the fight with insurance was well worth it!!! I don’t know if you have looked into him but I highly recommend it. He also has a second opinion program you don’t have to travel for. Check out his lectures.
All the drs here laughed at me for wanting them to check me for eds. (Accept my pt and chiro) they said “wow actually that makes sense. Let us see your images.” They pointed things out in my imaging that my drs were purposefully ignoring. (The brainstem compression and bone position). That’s when I knew I needed to fight harder. No NS in Middle TN will see me now lol. They won’t even consider seeing me or touching me. Haha
I understand it can be a bit disheartening and it only 3 mths post op please make sure you’re being kind to yourself because it’s still such early days. I was told 12mths after surgery is a fair time to evaluate the benefits/deficits of it. Whilst there is no guarantees of a complete fix or even improvement, for me it’s important I focus on any positive changes no matter how minuscule they are because it’s these positives that make other positives more likely. The power of the mind is something we all underestimate.
I am 6mths post decompression and I had amazing relief initially but I’ve had some symptoms return which is unfortunate but sometimes the nature of the conditions. When I have times I’m feeling overwhelmed it’s easy for me to get caught up in all the bad things so I’ve writren down things to read during those times to remind me of what has improved. My legs hurt and feel weak but I no longer need a walker to get around. My face, neck and shoulders have altered sensations (partly numb) but I don’t choke on food/drink as often. I get dizzy often but at least I can turn around now without ending up on the floor.
It can be tough and it’s important to give your mind and body time to recover without putting too many expectations on yourself. Try to do things that you enjoy even if it’s not at the level you’d like to be able to. Sit in the sunshine, listen to music, get a massage. Try to take the little wins and be kind to yourself