New with ES + My experience + Tinnitus

[Oscar]

Dear all,

I hope you are doing fine. I had my results today. I will try to explain the little information I got and then tell how I feel.

I met a different doctor. He confirmed ES but on both sides. On x-ray only the left side appeared but the scan showed it on both sides. Left side is more elongated and that is the reason why I have more pain in that side. Left side is 4.5cm and right side is over 3cm. Sorry I cannot remember the exact lenght.

I could not see the scan image or anything so I cannot explain anything about how it looked, etc.

He asked how I feel. I explain tinnitus, pain, etc. About tinnitus he said he was almost convinced that it was not related with ES. I really don´t know what to think. I explained him that sometimes I hear louder sounds with certain moves etc, so he said… maybe…

Regarding the pain he said I should keep going to the physiotherapist and take pills if pain was too high for me. He said I was doing right with physiotherapy and like this is the only thing I can do.

About surgery he inmediately said no. It is too risky and the benefit is too low compared to the risk. He said he would only make it if I cannot stand the pain. I guess this is what usually happens. I don´t know. I only think I missed an answer: What could happen if I don´t get the surgery? I don´t want to get any kind of surgery but I think about it…

Conversation lasted like less than 10 minutes for sure. I really had not ime for many questions.

He touched my head and look for the styloids. He found them and if I am not wrong he said my neck muscles and very strong and for some reason I understood it is not good for this but don´t trust me that much. Everything happened pretty fast and I tried to have all my questions asked.

I talked about feeling a strange body in the throat. He said I should not worry about not being able to breath, etc.

At the end he said I should go to the otolaryngologist to check my ears about tinnitus. He said there might be something else and that in most of the cases it goes away as easy as it came. I don´t know if I can believe it.

The doctor was very nice. I have no complain about it. Only thing is that it went too fast. I have been waiting for this since april when I first knew about ES and it has been like 10 minutes of conversation… I think less.

I feel a little down today. First because I didn´t expect to have bilateral ES. Second because I expected more information, etc.

On the other hand I feel relief. Now I know exactly what I have which is very important to focus on a solution. For other people this takes months and years and I have been lucky.

I am thinking about going to Barcelona to see Dr Maiz but I have not the scan. I have been told that I cannot have it. I can only request a brief document but not the actual image so… I should pay for another one before going to Barcelona or I don´t know. Today I cannot think about it.

I will go to the hospital again next 16/04/2019. If anything happens in between I can call for a visit. I feel like this is a chronic pain and I have to learn how to deal with it. I am lucky I can have a “normal” life. I can sleep, I can work and study. I have pain in my neck, face and shoulder and I have had to stop exercising but… things could be worst and at some point I don´t want to think on this all the time. I am a bit exhausted and I would like not to think everyday about tinnitus, etc…

I am sorry if I haven´t explained myself properly. As you see I didn´t get too much information and also I try to translate it the best way I can.

I appreciate all your support through this months. This has been the only place to find a bit of light and comprehension. I will keep you updated if anything new happens. I will try my best to get the scan image.

Thank you again and have all a very nice day.

Óscar.

[Isaiah_40_31]

Hi Oscar!

So glad to hear from you again! Sadly, the response you got from the ENT doctor you saw is all too common for people who have ES. He clearly doesn’t know much about Eagle Syndrome or the symptoms it can cause. I don’t blame you for feeling down/disappointed after waiting so long for the appointment & being given so little time with the doctor. I’m sorry he wasn’t more compassionate toward you & willing to let you ask questions. Perhaps he was abrupt because he was afraid you might ask questions he couldn’t answer.

It’s good to hear that you’re currently able to function pretty normally even with constant pain & tinnitus. The symptoms you have are common ES symptoms & surgery would most likely help them go away or be less intense. It is hard not to think about constant pain & ringing in the ears because it’s always present & our brains are busy trying to figure out how to make it stop. Surgery is risky but in my mind, when it’s done by a skilled ES surgeon the risks are lower.

You asked what could happen if you don’t get surgery. The answer is that your symptoms can get worse to the point where you can’t function normally. In extremely rare cases if the styloid(s) are pressing on vascular tissues (jugular vein, carotid arteries) they can cause a stroke (again, this is VERY RARE). If what you’re doing now - physical therapy & pain medication - is helping you to feel ok, then it’s good to wait to have surgery till those things don’t help you anymore.

If you decide to make an appointment w/ Dr. Maiz, you could ask his office to request the scans & written report from the doctor you just saw. I expect that a doctor requesting them from another doctor would insure they’d be sent although I don’t know the medical system in Spain. It’s also possible that Dr. Maiz’s office could advise you how to get them to send to him. It is odd to me that you were not allowed to have a copy of your CT scan. In the US, we are entitled to copies of everything we have done medically including the doctor’s notes if we ask for them.

If it takes many months to get an appointment with a specialist, it would be good for you to seriously think about scheduling with Dr. Maiz for a follow-up appointment so you can get his opinion.

I hope what you need to do becomes clear to you in the next few months. I also hope you are able to keep going as normally as possible till your next appointment either in 4/2019 or if you see Dr. Maiz.

I’ll pray for that.

[Jules]

Really sorry that after waiting so long, you were in & out of the doctors so quickly. But take a positive in that at least you do have a diagnosis, even if this doctor won’t help, because it should be easier to see someone else. I second what Isaiah has said- if you’re able to get a referral to Dr Maiz, then they should be able to request the scans to see them, it shouldn’t be a problem that you haven’t got them.
Seeing an otolaryngologist might not be a bad idea, because if they’re a skull base surgeon as well, which a lot are, then they are used to operating in the same area as the styloid processes, so might be able to help- I now in the UK you can google doctors profiles to see their speciality, if Spain is the same then maybe you could get a referral, as well as trying to see Dr Maiz?
Doctors often fob people off with the ‘it’s too risky & probably won’t help you’ line because they’re not experienced enough to do the surgery, but if you see a skilled surgeon it does lower the risk; no doctor, even very experienced ones will guarantee that your symptoms will go with surgery, because they don’t want you complaining afterwards! And tinnitus is a more unusual symptoms, with often unknown causes, so you might well find that even a more experienced doctor won’t say that it’ll go with surgery unfortunately.
As for it being bilateral, if you’re not getting symptoms one side, it may not need doing- although unfortunately sometimes the second side can get worse after the first surgery, so it is something to consider.
At the end of the day, to have surgery is a personal decision- balancing how much symptoms are affecting your quality of life versus the risks, & bearing in mind that they’re unlikely to go… So only you can decide whether you can live like this or want to go ahead with surgery with a different doctor.
Thinking of you, keep strong!

[Oscar]

Dear Isaiah and Jules,

Thank you so much for your kind words and support. These are very appreciated to me.

ENT doctor: He was nice and polite. I guess he explained what he knew and my thought is that he was in a hurry as he got a call to see another patient. Just my intuition. He thought this is too risky and he gave no more explanations. Surgery was not an option for him so he didn´t have to explain it. I am able to have a “normal” life so I think it is not the option now.

I am happy I have the diagnosis and I will have regular controls.

Otolaryngologist: I think I cannot choose the specialist I wanna visit. I have to go to my Primary Doctor and ask for him to request a visit to the hospital. Then I will get one specialist asigned. The Otolaryngologist specialist are together with Maxilofacial doctors I visited last day. I don´t know if any of them may have more skills on this type of illness. I just don´t know.

Scan: I was said by a doctor that I could not request the scan. This morning I was trying to think what to do and I decided not to be paralized and I called the hospital. In the end it was not impossible. I just had to fill some forms and I will get my scan on a cd sent to my home. That easy!!! Sometimes we let others tell us how things work and we cannot be conformist. I needed something, I asked for it and I will get it. This is good news I think. I only don´t know how long will it take but I don´t mind.

I don´t know if you remember that first time in hospital I had seen another doctor. She is not now in the hospital but she has a private medical consultation. She was the doctor who took the first x-ray and saw the styloid. I have talked with her and she wants to make an appointment with me to see the scan. Hopefully she will give me more detailed information. When I met her at the hospital she said she would do anything to see what what happening and I felt like she was very interested. I don´t want to have huge expectations but at least I will have another opinion.

I will try to explain how things work here: First times I had to go to private medical consultations because my Primary doctor didn´t want to send me to hospital. I had to pay for the consultations. Usually the doctors that work in the morning in the public hospital have their own private consultations in the afternoon. That is why I met this doctor in her private consultation and then at the hospital. But now she is not in the hospital. This hospital is of the National Health System. It is public and we don´t have to have any private insurance.

Dr. Maiz works in another region in Spain different to mine and he doesn´t work in the public system. At least for what I know. The clinic I have found he has his office is private. I cannot be referred to him by my doctor from the National Health System. I have to go on my own and I have to obtain the documents and the scan on my own. If I go to Dr Maiz I have to pay for the visit and the surgery. I have no private insurance and I suppose surgery may be very expensive. I will have to evaluate everything as I would really prefer to have surgery with Dr Maiz. I may ask my parents for the money or get a credit from the bank… I will think about this in the future when it comes… I don´t want to bother you with this… I hope now you understand a bit better how it works. We have a good Public System but going to another doctor in another region and of the private system is not possible or I have not the right information.

Dr. Maiz: I have written today to his office. He is not working as he may be recovering from an illness or something. I will be informed when he is back and we will make an appointment. I am sure I want him to see me. I need his advice. I think he is the best surgeon I can visit here and I will go for sure. I already fly to Barcelona to check my vision as I have Keratoconus on both eyes. I get annual revision in a clinic in Barcelona as I was recommended by a specialist here years ago. In conclusion, I will go to see Dr Maiz as soon as we can make an appointment. I hope I can send him the scan prior to my visit so he can evaluate whether I need anything else to have a diagnosis.

Yesterday I could not think that much. Everybody was asking me: What are you going to do now??? I needed one day to think. Yesterday I was very disappointed. I have pain but this is nothing compared to what I felt months ago. At that time I could not even eat because of the pain. Now I can eat properly so I am much better. I can live with this. I only want to go on with all this and then try to settle my life again with the new situation. My only hope is that this will not get worse. Fingers crossed.

My fear is a you said that things will get worse. I will be ready for that. I only want the information to know what I may have to face. I only think all the time about all the people who suffers much more than me. They are all so brave. You are all so brave!

Now I keep working and I am back with my study. You know… getting ready for the Olympics of the teachers Just kidding but I don´t want this to paralize my life or my dreams. I am tired but I still have energy and when I feel like I cannot go on, I simply feel it. I don´t get angry with myself. If you are ill you cannot have the gift of resilience. You just deal with it the best way you can.

Well, I talk too much and with my terrible english… sorry for that.

Many many many thanks again. I will keep you updated.

Óscar.

[Isaiah_40_31]

Hi Oscar -

Your English is actually quite good. I’m impressed! I would be unable to say even a few words in Spanish that would be understandable!!

Thank you for explaining your medical system to us. It seems each country is a little different in how patient care is covered. It’s good that you have decent coverage if you go to through your local medical system.

I’m sorry to hear that Dr. Maiz is possibly unwell. Hopefully he’ll recover fully & be back in his office soon. I agree it would be good for you to see him but the other local doctor you’ve seen who is interested in your case may also be a good resource. I’m glad you’re following up with her. It’s also good news that your current care regimen is allowing you to function well & have reduced pain and symptoms.

I’m sorry to hear you have Keratoconus. From what I’ve read it seems like there are some successful ways to treat it now. I hope your eyes are stable & your vision hasn’t been too disrupted. It’s good that you have a reason to go to Barcelona already. That will make it more convenient to see Dr. Maiz when you are able to get an appointment with him.

I very much hope your symptoms do not get worse & that your studies go well. Exam time is always stressful. You sound like a good student which will help with your success when you’re done with school.

We’ll look forward to reading your posts when you feel like writing again.

[Jules]

I agree; your English is great! Thank you for the explanation of the Spanish system; it sounds similsr to the UK but here we can get referred to doctors in other regions if we want. The waiting is long too, so some members have paid to see the doctors quicker.
It sounds like you have a good plan in place & hope for treatment at some point. I’m sorry if I gave you a pessimistic view of ES; some membes have found that they can live with it & opt not for surgery, yours may not get worse, but it is good to have options in place should you get more pain.
I hope that your studies go really well; this experience will make you stronger & I’m sure having to work as well as being in pain through this will make you an amazing teacher! Good luck & thanks for letting us know how you’re getting on!

[kiZe6159]

Oscar…I think you have explained your situation very well. I am so sorry you are having to deal with this awful thing like so many of us just trying to find the right doctor. We are able to deal with it because we have not other choice…life must go on! I hope all goes well with you and your search for the right doctor. I hope that you will find relief from the nasty eagle thing and move on with life. You seem to already have the patience needed to do this battle - best to you.

[Oscar]

Many thanks Isaiah. Keratoconus is stable and more or less the same since I was diagnosed in 2006. I am able to see properly with a pair of glasses and I am not using special contact lenses because I couldn´t get use to them. I only have allergy which is annoying during Spring and Summer but it is not that hard. You get used to it.

At the beginning I looked for a lot of information to know the illness and act in consequence. I take care of my vision and hope to maintain it as chronic. When you turn 40 it is less probable to evolve to a worse situation. This is not too far away so hopefully things will keep like this for the rest of my life.

Many thanks for your reply and wishes. I will keep you updated.

[Oscar]

Many thanks for your reply Jules. I appreciate all your information. I know ES could become stable and chronic. Right now I am lucky because I can go on with few inconveniences. Just like Keratoconus it might stop at some point and I will get used to it.

I am learning a lot from this situation like we are far more stronger than we think.

I wish you the best. I will keep you updated.

[Oscar]

Dear kiZe6159,

Many thanks for your support. I try to be patient and positive and if I have not the day I simply don´t have it. I try to look for confort around and tell myself something nice.

I hope you can also find relief and feel as better as possible to have a joyful life.

Please, excuse me all because I have realized that I have answered individually and created 3 different posts…

[Oscar]

Dear all,

I have received my scan. Here is a picture of it.

Have a nice day.

[kiZe6159]

Oscar…that is quite the scan! Looks like that left SP (on the right of the screen) is being squeezed out or something. Though maybe I’m looking at the wrong thing…what are those grey "mark-ups on the right and left side of your jaws?

[Oscar]

Dear kiZe6159,

I think you are looking right. The right side of the picture shows my left styloid.

I don’t know what are the grey parts. I will try to make an appointment with another doctor. Hopefully I will get some information as this is the first time I see the scan and I don’t know how to interpretate it.

Many thanks for your answer. I will tell you if I discover anything new.

Óscar

[Isaiah_40_31]

Hi Oscar!
You have a gnarly right styloid. It looks very thick. I agree the left one looks like it’s sandwiched between 2 bones, but that may be due to the position of your head during the scan. It’s hard to tell how long they are.
The radiologist who wrote the CT scan report should have reported the length of the styloids & commented about whether or not your stylohyoid ligaments are calcified if he knew he was looking for ES.

A second opinion is always a good idea. Please let us know what you find out.

[Oscar]

Dear Isaiah,

Thank you for your reply.

Left styloid is 4,5cm and right is 3,5cm. I also noticed that the right one is thick but I have no experience with scans so i was not sure about it.

I usually feel something in my throat when I turn to the left. Maybe it is because it is longer or because as you say the styloid is squezed between other bones.

The radiologist also informed about calcifications on the tonsil area. The doctor didn’t say anything about it. I have seen it on the report.

I will try to get an appointment soon. I know I am lucky as I manage the pain without any medication. It hurts throughout the day but I take care of not making too much efforts with my neck and left arm. I only want to know more about this and have information just in case I have to have surgery someday.

Today it is time for annual eyes check. Hopefully everything is stable. Fingers crossed.

Have a very nice day. I wish you all the best.

Óscar.

[Jules]

Hope your check up is okay… Your styloids look quite angled & pointy, it’s not just the length of them, but the angle can cause problems too.

[Oscar]

Dear Jules,

My check was ok. Keratoconus is stable.

Today i got my appointment with the first doctor. She let me explain everything. She told me that I shouldn’t bother much as far as there is a solution. Styloids could grow or not and maybe this could be also stable. There is an option of surgery and that is what I have to think if my quality of life is poor. If my heart or breathing or anything vital is affected i could try with surgery. She also said that surgery may not cure all the symptoms. She comprehend the anxiety that causes tinnitus and she said that mine might be produced by ES.

She was really nice and comprehensive as usual.

This is general what i can say. I have to be strong, not think about it and believe that there is a solution if needed. She also said this is a pretty rare illness and that there is not much bibliography about it. It causes a big variety of symptoms and it is unknown for many doctors.

Now i feel a bit down. Not because this is new for me but because hearing it confims that this is a battle of my own against anxiety, pain, etc. It is hard at times but now i have few pain.

I almost forgot. She also said my left styloid is tricky and looks pointy and the right pretty thick as you commented before.

I hope this journey leads to a better place. I will try to be tough and strong and keep my head calm. You all that are suffering have my support and respect.

Thank you and have a nice day.

Óscar.

[Jules]

I’m glad that your Keratoconus is stable now!
I’m glad too that you’ve found this very helpful doctor, & that there is the option of surgery if in the future you feel that you need it. ES can be stable, not all members opt for surgery, it’s a personal decision depending on how much pain you’re in, vascular symptoms etc. I hope that you’re able to control your anxiety if it might not be helping your tinnitus.
I definitely think I’ve found positives from my journey with ES; I’ve much more compassion now with others suffering chronic pain, it’s strengthened my faith, I’ve been through lost of tests & 2 operations, & I now have the opportunity to help others, so there can be good things to come out of your ES journey.
I hope you’ll keep us updated, not just on ES but on your studies too, good luck with that!

[Oscar]

Hello everybody,

I had an appointment with the otolaryngologist last Friday. I got there and she asked which are the symptoms I have with ES. I said the first one is tinnitus. She replied: No, with ES, and I said: neck and head pain, swallowing problems… In that moment I knew she didn´t connect tinnitus to ES. She told me that there is no relation between tinnitus and ES because tinnitus is produced inside the ear and ES is outside so they are physically separated and they are not related. At this point I really would like to know if there is any relation. A couple doctors have told me there is no relation and another one has told me that there is a connection.

I told her how I feel the sound gets louder with certain positions and how sometimes I have had pain in my jaw and face after the sound made a high pick. She said there is no relation. I also explained how my ears hurt and that pain is connected to the throat. I also explained that once I had two sounds on my left ear after I had a bad position of my neck as I fell asleep sat on the sofa. She said nothing. I explained things and she was just waiting for me to go. She had already told me that tinnitus and ES are not related and there was nothing I could do.

I asked if I had to check my audition regularly and she said no. I was a bit shocked about it. The only thing she said is that if tinnitus causes me anxiety I have to control it. And that was it: Control it. I should have asked how. I should have said if I have to take the valium box I have at home pill by pill or half of it at a time. It was funny, I have to say it. The situation in the end is funny. Control it. So easy to say.

At this point I could sound angry but I am not. The only thing is that I got exhausted of doctors and appointments that lead to nothing. I understand that there is no explanation to tinnitus. I agree with that. I don´t want anybody to think that I expect a doctor who will discover why do I have it or that could give me a solution. That is not going to happen and I accept it. My complain is the lack of empathy. When I started with tinnitus my primary doctor said I had to take valeriana pills to relax as I get anxious and now I go to see an specialist and the answer is: Control your anxisety. Thankfully I control it most of the time. I practice yoga, I do what I can to go relaxed to bed and sleep, I don´t drink any liquid at least one hour or two before I go to bed, I don´t drink coffee or any caffeine drink before going to bed, etc. But there is no direction or empathy from some doctors. Thankfully I´ve found one who is nice and comprehensive but I got a bit tired of this.

I can say now that I have ended the journey of doctors this year. It has been a very intense year for me. I have faced many changes and challenges. Now I say to myself I have to accept the situation, live it to myself, understand it and finally move on. I wish this doesn´t turn worse with time. This is the only wish I have in life right now. I don´t want the tinnitus to get worse. I admit I am not a religious person but I ask for it everyday to God, the universe or whoever may hear me.

Next April I have a follow up appointment with my ENT surgeon. Hopefully things stay stable.

I don´t know what more to say. I hope I don´t sound too pissed off with the doctors and the situation. I don´t feell right if I complain too much but this is how I feel and I need to express it. It is not productive and it gives me no solution but I need to get out of me the frustration I feel.

I wish you all a nice and happy day. I will keep on reading you and I will keep you updated if anything new happens.

Óscar

[Jules]

Feel free to rant on here, we do understand! What a shame she wasn’t more helpful, I’m sure you must’ve had enough of doctors, it’s been a tough time for you.
My understanding of tinnitus is that they don’t know the cause of it, in which case then you can’t say definitely that it’s not caused by ES?! But I do know that my pulsatile tinnitus was caused by the jugular compression, which in turn was caused by ES. Alot of members have said they believe they have tinnitus as a symptom, but I don’t think that I’ve seen it mentioned in research papers as one.
You sound so strong, & I know it’s hard but it sounds like you’re doing all you can to keep the anxiety under control. Keep it up, & hopefully one day you’ll find a doctor who’ll listen & help…in the meantime we are here, please post on here any time you need some support!