Thx. Hope, Oscar‘s doing right.
I‘have been in leipzig and will have sugery in juli.
Liebe Grüße
Hannelore Würzinger
1 Like
Boldeagle,
That is excellent news! Please check to make sure your surgeon will be removing most/all of the styloid process(es) - back to the skull base if possible & the stylohyoid ligament(s) if they are at all calcified. You won’t get a great outcome if they just shorten them a little. Also make sure that what remains will be smoothed off so nothing sharp is left behind.
Dear all,
I’m sorry for being absent. The past year has been too difficult regarding my personal life and I am still recovering. Life changes and we have to adapt to new circumstances.
My ES has not changed. I have my next appointment in April. It is just a check. My symptons are the same. The only change is that now I have a pain on the front of my left shoulder. At first doctors thought I was having a heart attack. My electrocardiogram was not ok and I had pain on my chest so I ended one night in ER thinking I was about to have a heart attack. Pretty scary.
Months after my electrocardiogram is still not ok and I still feel from time to time a bit of pain. They say my heart is ok and I can do normal life. They say there is no pathology in my heart. It is just an anomally. One of the beats of my heart is elevated. It was detected last October. I had never had any news about it before. Is Spanish it is called repolarizacion precoz. Sorry I cannot find the right way to translate this.
I asked the cardiologist if this could be due to ES but he didn’t pay attention to it. Do you think this could be related??? I will ask my ENT in April.
Thank you for your answer and excuse me again for my abscence.
Sending love to all of you.
Thank you so much for your answer.
When I was taken to the hospital in an ambulance I told the doctors about ES and its relationship with heart issues. None of them knew about the existence of ES so how could I expect them to even make a connection with my current issue?
When I go to the family doctor I make the point about it. Not too strong so they don’t get mad. I have realized they don’t like the patient to know much. You always have to ask for opinion, supervision… never make a statement about your thought.
I will try my ENT to make a connection with my heart issue and ES. I was told not to make any annual check and I really don’t know if that is correct. This may not be a pathology of my heart but it’s something that was not there a few months before and for sure not before I was diagnosed with ES.
On the other hand I cannot complaint. I manage my pain and tinnitus is my friend. I don’t pay attention to it and I am able to live pretty well. I quit most exercise due to the pain and recent heart problems but no one would notice I gave any health issues.
And after all the bad news and personal difficulties let me just say something off topic. I finally started working as a teacher. I had waited for this my whole life and I achieved it. Now I am studying and preparing for my exams next June. Things happen and life goes on no matter what.
To all of you suffering I really hope you can find a way to manage your pain mentally and physically. I feel I’ve been very lucky with my ES symptoms until now.
Have a great day.
So sorry that your ES symptoms are worsening, that’s very hard, but well done for qualifying as a teacher! Really glad that you’ve been able to do that with having ES.
The cardiac symptoms can be down to irritation of the vagus nerve by the styloid processes- there’s been quite a few discussions about it which you can search for. The styloids can also (very rarely) irritate a part of the carotid artery which can cause cardiac arrhythmias. There’s a study mentioned in the Newbies Guide Section (I think it’s called ES Info- a scary subject). You could if possible get research studies which mention these translated & take with you to your ENT appt.
Also the shoulder pain could well be the accessory nerve being irritated by the styloids, that can be quite common.
Thinking of you…
Hi Oscar!
Welcome back! I’m sorry you’re back but you are always welcome here. I was actually thinking about you the other day & wondered how you are doing so am glad you posted. I wish it was all good news though. The styloids do continue to grow over time & the stylohyoid ligaments can begin or continue to calcify. That’s one reason symptoms can change &/or get worse.
How wonderful that you can teach now. Good for you for persevering through ES (not feeling good) & personal difficulties. I bet continuing your education to reach your goal helped put your mind in a better place during the hard times.
For more information on the nerves, try to watch the vagus nerve & the accessory nerve episodes on Two Minute Neuroscience (found on YouTube). They are short & very helpful (but are in English).
Have you tried contacting Dr. Maiz’s office again to see if he is back to working? If he is, it would be worth a trip to see him & get his opinion as it didn’t sound like your ENT was very supportive in the past. Here’s his contact information in case you no longer have it: Dr Javier Maiz, Barcelona Medical Centre, Teknon http://www.javiermaiz.com
We are here for you and are happy to help you through this difficult time.
Dear all,
Thank you for your messages. We all have to deal with different things apart from our pain and symptoms. Thankfully I still manage to have a “normal” life without taking many painkillers, etc. I tend to think I am very lucky.
I am aware that symptoms may worsen with time. I still feel from time to time that new pain on the front left side of my chest. Sometimes I feel like it slightly affects my breathing. Not that I cannot breath. It is hard to explain. It is like a slight fatigue that I think I get with it. Anyway, I am still feeling ok so hopefully it will not get worst.
I have not contacted again Dr Maiz´s office. Last time I was told there was another doctor instead and I did not contacted back. I will see my ENT doctor in a month from now. Let´s see how it goes.
Now that we are going through these new times I really hope you are all good and safe at home. Let´s think this will bring something good.
Have a nice day.
Óscar.
1 Like
Hi Oscar,
Just so you don’t worry too much, the chest pain/breathing can be caused by the vagus nerve which is very often irritated by ES. If it gets worse, it would be worth seeing a cardiologist. If everything checks out well there then you can guess it is your vagus nerve complaining about irritation from ES. I had a similar problem.
So glad you are able to live well & not take much pain medicine. That is great news!
I am glad that you are able to continue a relatively normal life, & are accepting of your ES symptoms. We’ll update the list with what you’ve told us about Dr Maiz. Keep safe & well yourself, difficult times in Spain…
Thank you both for your messages.
I will tell my ENT surgeon on my next appointment. Hopefully it will be on April but regarding the current situation I really don´t know now. It is pretty bad in Spain but I guess it has gone this way everywhere else. This is my 7th day in quarantine at home. I really hope you are having the best time possible.
Have a nice day.
Óscar.
You keep safe & well, Oscar…getting worse in the UK but not as bad as you have it in Spain. Take care…
1 Like
Hi Oscar,
I sympathize w/ your quarantine. We were just told we need to “shelter in place” (in our homes) for at least the next 8 weeks. Children won’t be attending school for the remainder of this school year but will be given packets to work from home so they can complete their grade level requirements.
There is a doctor at UCSF (University of San Francisco) Medical Center who is working on a drug that can be given to people w/ COVID19 to help block it so it doesn’t cause such a big reaction in their bodies. This is hopeful news. It was said a vaccine to prevent it is impossible since it mutates very quickly.
The upside of all this, at least in my area, is that it’s forcing people to slow down & begin to rethink what’s important in life. The high speed, high stress lifestyles in
San Francisco Bay area of California, are no good for anyone here.
1 Like
Oh my God, this all so so very familiar to me!! Almost word for word. I am 2 weeks post OP on left side. So many positive results but ringing in my left ear has increased! You are brave! You are determined, smart and strong! You are not imagining things as I was told over and over. Push hard !! Be proud of yourself! Even writing this is so huge…you have me in tears.
4 Likes
Hi Shayney. The ringing in my ears increased a week to two post op. Now I am over three months post op and the increase is gone and has eased overall. It does pop back from time to time but it is manageable. All the best to you.
Stay safe,
BG
3 Likes
Dear all,
Thank you for your messages. It really feels good to know someone comprehends you. I admire your bravery.
Being diagnosed helped me a lot. I could understand what was happening. At least at this moment my symptoms are pretty light. Maybe due to the fact that I was early diagnosed. I was diagnosed just after two months my tinnitus appeared. Pretty soon I guess.
The ENT doctor who diagnosed me told me: “Let´s ask for it to be chronic and stable for the rest of your life”, and this is what I ask for. During this time of change we live, what does it matter? Health, family, friends, self-care… nothing more and nothing less.
My body does not tend to be healthy. I think he wants to tell me something. Maybe I need to be happier with myself. I really mean it. I don´t say ES or other illnesses are due to unhappiness. This is just a feeling I have.
Sorry for this reasoning. Maybe it is the quarantine. Too lonely here.
Shayney, I am happy to know you have had positive results from surgery. You are really brave. I would be very scary if I had to have the surgery.
For all of you there, hopefully you are safe at home.
All the best for you.
Óscar.
1 Like
Hi Oscar,
You made a very good point. A positive mindset will carry us through even the most difficult times. We can choose to dwell on the good things in our lives or on the things that are hard/negative. Dwelling on the good is very healing to our minds & bodies.
I agree that God can get our attention through lack of good health among things. Once He has our attention, we need to turn our focus on Him & seek what He’s trying to teach us. That can simply be to count our blessings.
Please continue to take good care of yourself. Look for the blessings in each day & let the negative/hard things slide away. Learn what you need to from them then let them go. “Camp out” in the happy things.
I’ll be praying that your ES symptoms remain stable & tolerable. That would definitely be the best for you.
Proverbs 17:22 “A joyful heart is good medicine, but a crushed spirit dries up the bones.”
3 Likes
It does make you stop & think; I learnt alot through my ES experience. I know that I’ve been blessed with very good results from surgery & not everyone has that, but I wouldn’t change things even if I could as I think it’s made me a better person.
Feel free to keep in touch on here if you’re finding quarantine lonely Oscar, it’s a difficult time for all, & it’s good to have people to ‘talk’ to… it’s another thing we all understand 
3 Likes
Dear all,
I hope you are doing fine. I hope we all can go through this challenging times we are living.
i am back here to ask for your help. I had an appointment with my ENT doctor next week. I have just received a call cancelling my appointment due to the covid situation. This is something absolutely normal due to the fact that I had to have just a check and I am pretty fine.
The problem is that after asking me how I was feeling etc. I asked my doctor when should I be back for an appointment. He answered: Never. I said: Never? He said that they know I have ES and that unless my symptoms worsen a lot there is no need for me to be back for any check. I had told him previously about my recent heart problems. He admited that ES could be related to heart problems but denied the relation in my case. I asked why and there was no convincing answer. I am shook.
ES is a chronic illness. Styloids can grow with time and new symptons can appear. How am I not going to have any check? Never!
Sorry I am pretty angry and sad. I have always said I am happy with my relation with ES. I can cope the pain pretty fine and I don´t feel any other critic thing that affects me to the point of making my life impossible. But I am scared. I feel a new pain point in the left side of my chest, I feel my heart rate goes wild sometimes… I don´t know…
I would like to ask you for any advice. I would like to write a complaint to the hospital and make them change their mind. I feel they are using the covid situation to cut on patients. I would like to make them know this is a chronic pain that needs supervision and regular checks. At this moment I am a bit angry and I cannot think properly. This is why I would like to ask you for any advice that can make my complaint more solid.
In any case, I would like to thank you again for this wonderful site that is always helpful and kind.
I don´t know when the ES patients will be taken seriously.
I send you my best wishes.
Óscar.
If it’s left that you can get referred back if symptoms worsen, then I would be okay with that. To be honest, if you’ve read up plenty about ES you probably know as much as the doctors do anyway! I think many members are given the diagnosis & then left to it, & ES doesn’t always worsen, it can stay stable. It’s up to you- if you’re concerned about the possible affects on your heart rate (it can be caused by ES; either the vagus nerve being irritated or sometimes with vascular ES part of the carotid artery being irritated), then you could look into options for surgery as soon as the virus situation is over. But as you were coping okay, maybe see how things go? I guess from the hospital’s point of view they probably think things are stable & that there’s no need to keep seeing you.
I don’t know the hospital complaints procedure in Spain, but I’d guess at the moment they’d be so busy following the virus that it wouldn’t be looked into for a while…If you think you’d have trouble getting referred again & it would be difficult to see someone if things worsen, then we could help suggest some points for you to bring up if you wanted to complain.
Hope that you’re managing the social isolation okay & that things improve soon in Spain…it sounds as if it has been terrible.
1 Like
Hi Oscar,
I think Jules covered everything very well. I do want to reiterate the possibility of vagus nerve or vascular compression as being potential causes for your heart rate trouble. I had problems with my blood pressure dropping & heart palpitations when I exercised. These would make me feel very winded & light-headed. I think my problem was from my vagus nerve which does affect heart rate & blood pressure.
For clarification: Symptoms from compression of the internal carotid artery or jugular vein will be more present when your head is in certain positions i.e. turned left or right, looking up (tipped back) or (tipped) down, cocked to the left or right side. If you notice that holding your head in a particular position brings on the heart rate changes, you should try to get a CT scan w/ contrast. You will need to hold your head in the “provocative” position during the CT scan for the compression to show. If your symptoms are occurring more randomly then your vagus nerve may be the cause.
It might be a good idea for you to see a cardiologist rather than an ENT to follow up on the heart situation. I did that & my heart was fine. It was a relief to know everything was ok after a stress test & an echocardiogram.
1 Like