That’s interesting! I’ve been diagnosed with orthostatic (I think) hypotension (years ago, and they weren’t monitoring hr bc we didn’t know it was an issue), but I’ll discuss the test at my next checkup.
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anharris,
Im not sure who diagnosed you with that, but hypotension is part of the package with POTS. Perhaps since you are somewhat functional, they were not concerned at the time. IT could possibly explain some of your racing heartbeat (or tachycardia) at times rather than the ES? This tachycardia is not picked up on echo’s or other heart functions because it technically is not a heart issue. The BP and heart rate laying down, sitting, and then standing is how it is picked up. A more formal diagnosis is confirmed by a “Tilt Table” test but that would only be in specialized study centers. My daughter has bone crushing fatigue and very symptomatic - dizziness, headaches, stomach / GI issues, etc. POTS (Dysautonomia) kids fall on a wide range of levels and some get better as they get into their early 20’s. Some only have minor symptoms. She has about 4 hours a day she can be upright and needs to lay down alot to keep symptoms down. My daughter did a 10 day inpatient study at Vanderbilt where they did a blood volume measurement and found she had a 20% deficit in her blood volume re:hypovolumic. Because of the hypovolemia, the blood often pools in legs and when a person stands, the blood works hard to pump to brain, often too much thus the racing heart or tachycardia, There are technical reasons for the pooling that I wont go into. She also has a 30% deficit in her total red blood cell volume -oxygen carrying and considered severe. In her case, aerobic exercise (rapid heart beat) and heat trigger her pass out events and started around age 9 especially after running in PE, migraines worsened as well. There are a couple of things that can help the hypovolemic state that can improve symptoms. The drugs available proved ineffective and too many side effects for us.She gets weekly saline infusions to boost her blood volume. Exercise can boost volume also. Her kidney doc highly recommends Salt tablets. There is a brand (Ill look for it) that athletes used he suggested that might be of value to you. Several specialists suggested drinking a little soy sauce before rising in the am. Although it may be counter intuitive, she can salt her food as much as she wants. I encourage you look more closely into this before surgery and/or get a second opinion. You seem so young to have ES. I’m assuming as a jr in college you are in your early 20’s? Ive never done any research much on people your age getting ES but perhaps moderators can comment to that but most all I have read indicates is starts rearing its head in woman starting in their 50’s usually taking decades to form the calcifications. I know its not a one size fits all or age. It may be a reach to suggest this but just some thoughts.
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Snapple,
Thank you for all of this, I’ll be taking it to my dr and discussing possibilities. When I was diagnosed with hypotension as a child, I don’t think they had POTS on their radar because as you say, I’m somewhat functional. Especially in Nebraska where I grew up, Drs would sometimes treat the symptoms rather than than the cause.
Hearing that it’s not picked up on regular heart tests is reassuring in a way, I had an entire battery of heart tests as my team was figuring out the cause of my symptoms. In line with the symptoms your daughter has - while I have good and bad days, I deal with fatigue, dizzyness, headaches, all of which I thought were from ES or my brain cyst. My cardiologist as a child told me to salt things as I felt the need, that I consistently had low sodium and if it didn’t pull up I’d have to take salt tablets. Thankfully it never came to that though a recent blood test shows sodium in the low normal (139, where normal is 136-145).
You are correct in assuming my age, I’m turning 24 this year. While I haven’t seen any mid 20’s research, I know anything is possible. It’s also possible ES is a problem but not the problem. In my case skating may have helped the calcification along, while I don’t have many concussions in my 14 year career, I’ve taken a lot of falls. I have a consult with Dr. Andre on August 4th, and will bring the ES questions up as well.
Its amazing they even diagnosed you with hypotension back then.FYI: My daughter is 25. She started passing out at age 7 and it wasnt too bad in general but the migraines and heat intolerance persisted but low level. At first they thought it was exercise induced asthma then we moved on to neurologists for the migraines.Eventually we ended up at Children’s Hospital in LA and they called it a “nervous system” disorder so even they didn’t have it on their radar either. It wasnt until we moved into a small town in Oregon did the pediatrician recognize the symptoms I told him about and sent us to a pediatric cardiologist. He just happened to have another patient who was diagnosed w POTS so we really lucked out. It then really hit her about age 13 about 8 mths later and she could no longer attend school and was home tutored. A local nephrologist (kidney specialist) managed her from about age 13 to 20. Generally speaking a neurologist who has a specialty in dysautonomia would be the best person for a consult. Those salt tables are called S-CAPS and you can order them online.
Here is a good link which has find a doc option:
www.dysautonomiainternational.org
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We’ve had quite a few members in their 20s with ES, so it is possible, our youngest was a child, you can search for Ear_Mom’s posts; her son was 11 or 12 when he had surgery, & unfortunately both sides grew back so he had to have surgery again. She’s written a book about her experiences:
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So updates, since I’ve heard back from my surgeon and therefore have some clarity. I’ll likely update again on the 4th after my visit with Dr. Ondrey.
- Dr Omilie can’t tell if ligaments are calcified due to how close they sit to the bone. They will be removed if there is calcification. The bone will be removed at the base. Hoping for more clarity on this with the new imaging I’m getting on the 4th.
- No activity restrictions except on driving (4 days or when I’m no longer on narcotics) and returning to work 2-4 weeks out. So I’m going to apply for 4 weeks leave from work and plan at least 4 weeks with no ice time, followed by gentle and short skating sessions. I suspect my ice bill will be a bit lighter this term. I’ll also be discussing this with Dr Ondrey.
- I typically sleep in a hammock which keeps me upright so I sleep better, but I’m beginning to wonder if I will need to make other arrangements for after surgery.
Basically lots to think about, questions both for my pcp and Dr Ondrey to hopefully answer.
Good that although your doctor couldn’t tell if the ligaments were calcified he will remove them if needed, & the SP back to skull base!
I don’t want to be negative, but would just say that the majority of doctors, even very experienced ones, do underestimate healing, & although there are variations in healing rates, it’s best to err on the side of caution. I wasn’t able to drive for 2 weeks, as I couldn’t turn my head comfortably. There’s info about what to expect you can search for, & a ‘surgery shopping list’ with ideas about what you’ll need.
I’ve never slept in a hammock, so not sure what they’ll be like after surgery! You will need to sleep semi-upright, as it helps with swelling.
Hope the new scans show more & let us know how you get on with Dr Ondrey.
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Jules,
I found and noted the shopping list, thank you! Some of these things I have from prior surgeries, it’ll just be a matter of finding them and bringing somewhere easy to access.
I had already formed expectations for recovery based on reading on here, but I’ll be doing more reading as it gets closer to my surgery date.
As for the hammock, the one thing I’m concerned about is I’ll occasionally slip down to where I’m almost flat or my legs are above my head. Neither of which are ideal to reduce swelling in the neck. It’s also somewhat difficult to have multiple pillows. Mom and I are brainstorming bed ideas.
I’ll definitely update after I see Dr. Ondrey.
Also I know I haven’t asked yet, but if you could keep me in your prayers as I move towards surgery and beyond that would be much appreciated.
Thank you
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Hi anharris,
ABSOLUTELY to praying for you up to, during & after surgery. It sounds like you’ve done your homework regarding what to expect but as Jules said, healing time can be unpredictable. We’ll hope that because of your age, you’re able to heal quicker that some of us older folks.
That’s great news about Dr. Omilie’s expected surgical approach. You should get good results from surgery if he does as he says he will. If you have bilateral ES, will you have both sides done at once or one at a time?
Ideally, sleeping in a bed for a couple of weeks, at least, would be best for your post op recovery unless you physically don’t have room for one or can’t sleep in one. Do you have a roommate/housemate you could switch with temporarily? I can’t imagine dealing w/ the pillows & elevation needed in a hammock. I’m sure you & your mom will come up w/ something workable. 
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Isaiah,
Thank you so much for the prayers. As far as if I have bilateral ES, I’m not sure. I’d probably advocate for separate surgeries, even though it means two recovery periods I think it will be easier to recover from one side at a time. I don’t know at this point if the ES is bilateral, but expect to find out on the 4th. We’ve got some ideas about the bed already that just need fleshing out.
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Of course we’ll pray, God bless 
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Prayers for peaceful healing.
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Thanks for the prayers and well wishes y’all. One of my prayers was clarity after today’s appointment with Dr. Ondrey. Thankfully that one was answered, though certainly not how I was expecting. I will be sticking with the plan outlined by Dr. Omlie and having surgery on the 19th.
One thing I did find out though, my ES is bilateral, with about a 3mm difference between right and left. My R styloid process is ~32mm (barely outside of normal), while my L is ~35mm. We shall see where that leads in the future.
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You have a very practical approach to all this anharris. I will put your surgery date on my calendar so I can pray for you that day in particular. Remember that styloid length isn’t all that plays into ES symptoms, thickness, angle, pointiness, & twistiness can also be a problem. If you’re a small person or have a short neck, a less elongated styloid can have the same effect as a very long styloid on a bigger or long-necked person.
I’m glad you feel comfortable w/ Dr. Omlie. That’s very critical when it comes to choosing a surgeon.
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Hi @anharris just wanted to say I just turned 30 and these issues started for me in my 20s, especially the headaches started for me when I was around your age so you’re not alone in that. I have not even had any serious neck or head injuries so no idea what caused my styloid to become such an issue. It sounds like you are on a good path with a competent surgeon and I wish you a lot of luck in your surgery and recovery!
I’m also from Nebraska so hi from a fellow Nebraskan! I live in CO now. 
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The ‘average’ for styloid length is 2,5mm, but if you’re not that tall etc, then the average would be long for you…if that makes sense! So compared to the average yours are elongated, & as Isaiah says the width & angle play a part too.
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I’m out of surgery and in a room. Working on pain management. They say it went well, hard to believe something so small could cause so much trouble. There’s a lot of swelling still but I could upload a photo if desired.
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A few hours out, so far only allergy related issues. Otherwise it seems everything went well. Thank you everyone!
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That’s good, don’t expect that symptoms will disappear straight away, it can take a while. And days 3-5 can be rough…Hoping that you can keep pain under control! Praying for your speedy recovery 
God Bless you xx
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Can you share pics? What day are you now? Are you feeling better?
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