JustBreathe gave you wonderful advice . When we are optimistic about the abilities of our doctors & the therapies they recommend to help heal us & trust our bodies to heal as they’re made to do, we fare better than if we are downcast about it all. There was a book written in the 1960s called something like - Laughter the Best Medicine. It was written by a man who had a chronic, undiagnosed illness. He ultimately cured himself by laughing a lot. He watched funny movies, read funny books & kept himself in a light-hearted state. Now I recognize there are illnesses that aren’t that “easily” cured, but I think there’s a good lesson in what that author learned. Having an attitude of gratitude is very healing emotionally & mentally, & that can lap over into some physical aspects of recovery as well.
As JustBreathe said, we’re here for you. Please let us know what you learn going forward & we’ll do our best to listen & support you.
Thanks for all the kind words. I’ve gained a bunch of weight in the past few weeks as I’ve kinda bottomed out mentally from all of this, but the support here always helps me rally a bit. The neurological symptoms are killer, and knowing this is reversible makes it so difficult to sit and wait. It’s strange but I think I’ve mentioned things actually feel worse since the surgery. Idk if it’s some sort of rebound hypertension or something but I’ve had so much head pressure and other issues. Just trying to stay positive. My biggest fear is going blind, my vision is just a disaster.
Good morning @Msdstc
Your pain and frustration are real, thank you for sharing this.
It is quite possible, given what you are saying, you are in rebound HYPERtension. This can lead to a variety of neurological symptoms including papilledema, swelling of the optic nerve, and vision changes. What have your doctors done to help monitor this or treat the high intracranial pressure? Typically you would have a through eye exam by an opthamologist to check for papilledema and be on medications like Diamox (Acetazolamide), Methazolamide, or a diuretic like Spirinolacton; Topiramate (off label use for high pressure). I am NOT a doctor, but have had loads of experience with rebound high pressure and this is what has been offered to me for management. Also, increased weight will not help the increased cranial pressure, try best you can to stay on a low fat diet.
I hope this is all redundant information as your team sounds beyond qualified and able to guide you. Maybe it will help to know this is commonly used elsewhere and give you come comfort in the waiting.
Please do not be afraid to keep in really good communication with your doctors. Be the pleasant squeaky wheel as often as necessary with calm and measured breath. They are there to help you.
Keep posting, keep fighting this ongoing fight, you can and will do this!
I totally understand your situation. I’m a stress eater. Have been for my whole life and have had the weight battle for as long. I’ve started making myself a sandwich-sized Ziplock type bag of mixed veggies every morning which I put in the fridge to eat in the afternoon when I get my daily munchies. It’s not a total cure but having something crunchy to eat helps me not graze on other things that I shouldn’t be eating. It takes practice but my body & mental state are happier when I do this regularly. I try to resolve my craving for sweet by eating fresh fruit. This isn’t always successful but I’m trying to make it my habit. If eating solid/crunchy things is hard for you right now, cooked veggies & fruit is another snack option.
Usually when we put weight on quickly, it’s not fat but water which the body retains to try to help process the extra sugar &/or fat calories we’ve consumed. In your case, as JustBreathe noted, that extra (water) weight will tend to exacerbate your symptoms. Fortunately, water weight usually goes away fairly quickly once we resume more normal eating habits.
They actually just got me on diamox just picked it up. He said I’m gonna need to do regular blood work to monitor and don’t be too surprised if I get tingling in my extremities. Can’t wait to get into my main doctor to discuss the future though. You all are incredible on here I can’t thank all of you enough.
I’m actually hoping to start some sort of foundation or movement to spread knowledge out of this experience when (if? Please hopefully), I feel better. I’ll be keeping everyone posted. My scar looks really good btw! I should share some pics.
Anybody have advice on the diamox? My lips almost feel like I have novocaine injected. My heels are tingling periodically and definitely already notice carbonated drinks tasting flat and bitter.
Do you have a known allergy to Sulfa? Sulfa is a component of Diamox and thus not tolerated by some.
It may take a few days for your body to adjust to the medication and one side effect can be changes in taste. Be sure to stay hydrated and take as directed. If the side effects become to adverse call your doctor for sure, they may adjust the dose. If the numbness of your lips persist definitely call the doctor to let them direct you.
I took Diamox briefly (2018) in an effort to keep from needing surgery for Meniere’s Disease. I’m racking my brain trying to remember what the side effects were for me but they’re not coming to mind. I do recall only being on it for a couple of weeks because it wasn’t helping my symptoms, & it made me feel weird. Sorry for not being any help. JustBreathe gave you excellent advice as she always does.
Thanks for the advice. I emailed my doctor he did mention the tingling is to be expected. I don’t believe I have an allergy to sulfa but I’ve never even considered it
So far I do not feel any difference but I’m on a very low dose. My vision is getting horrendous, I fear I’m going to go blind.
What did they say about your vision? You need to push hard for testing to rule out papilledema…push that hard right now! This is not acting out of place for you, this is VERY important!
I agree with JustBreathe- you really need to get that checked. I don’t know the US system, as I’m UK, but here you can see an optician for an eye check & they’ll check the eye pressures, I don’t know if that’s possible if you’re having trouble getting the doctors to listen?
They just say it’s visual snow and they only see a tiny bit of blurriness on my left nerve but not much at all. I’ve had it checked a bunch. I will say it’s gotten MUCH worse since the surgery. Last night when I would scan my eyes from left to right or right to left my vision would black out.
Okay but please keep on top of that, even keep a record of what kind of testing and when along with your symptoms. And by all means if it continues to get worse call them again, or go to the ER.
Did you have bilateral surgery? I recall you didn’t. If your ES is bilateral, it could be vascular compression from your remaining styloid causing the current problem. We’ve had other members with visual changes as an ES symptom usually along w/ vascular compression. It will take 2-3 months for your post op swelling to subside & over that time, you should begin to see some of the current symptoms resolve. In the meantime, it can be 3 steps forward & feel like 4 steps back during some parts of the healing process. Eventually that progression will turn around & you’ll notice more significant healing changes.
Unfortunately it’s been a slow steady progression for 3 years starting with major floaters, massive halos around lights, terrible night vision, etc. Now I have the blacking out vision, always looks like the room is full of fog or smoke, inability to focus. Really sucks.
Thanks for the kind words isaiah I’m just trying to keep positive. My hope was that at least some pressure would be released and I’d feel a bit better but I actually feel worse. I’m hoping that’s the swelling. I’m excited for this next cta to see if there’s enough space to try a stent which is what I imagine the next procedure will be.
I hope stenting is an option & works like a charm if you have it done. I assume they’ve checked you for retinal tears. I had some similar symptoms caused by my retinas tearing away from my vitreous humors. Fortunately, the retinas themselves didn’t tear, just had the symptoms that perhaps they were. It all calmed down after a couple of months so I’m sure my cause/effect are different than yours.
I’m so sorry for this worsening problem you’re dealing with. Will keep praying for your complete healing.
Welp things have definitely gone down hill. Have developed severe pressure behind my eyes and tons of flashes as mentioned above, lost vision for a few seconds the other die, it would happen Everytime I turned my eyes. Ended up in the ER. My doctor’s aren’t looking to speed up this process say their hands are tied. Starting to wonder if maybe I should seek a 2nd opinion. I just want a balloon down on the freed vessel to release some of this pressure.
I am so sorry your symptoms are getting worse instead of better. Have you looked into being evaluated for Chiari Malformation? Some of your symptoms do go along with that, & you’re in the age range when that syndrome is most often diagnosed. If you haven’t, it might be worthwhile discussing it w/ your doctor. It’s diagnosed w/ a brain scan w/ attention on the brain stem area.
There is a Ben’s Friends Chiari support group. You can read posts without joining.
So sorry that you’re feeling worse, will keep praying for you…so sorry that they can’t get you in any earlier- have you asked to go on a cancellation list? What did they say in the ER? It might be an idea to look into another opinion, maybe see a vascular surgeon, I don’t know if that’s possible with insurance etc? A shame you’re not nearer Colorado as Dr Hepworth sounds so good…
. When we are optimistic about the abilities of our doctors & the therapies they recommend to help heal us & trust our bodies to heal as they’re made to do, we fare better than if we are downcast about it all. There was a book written in the 1960s called something like - Laughter the Best Medicine. It was written by a man who had a chronic, undiagnosed illness. He ultimately cured himself by laughing a lot. He watched funny movies, read funny books & kept himself in a light-hearted state. Now I recognize there are illnesses that aren’t that “easily” cured, but I think there’s a good lesson in what that author learned. Having an attitude of gratitude is very healing emotionally & mentally, & that can lap over into some physical aspects of recovery as well.
