Just discovered my bilateral ES - Need help about Italian exemption from paying check up tickets!

General
1

Hi,I'm an Italian girl of 26,with bilateral Eagle S. (5cm left and almost 6cm on the right) with too much headache and ears pain since 2010. I know that you sanitary system is different from our but I need help to know how much rare is this Syndrome and if do you have some infos about the right to be exempt from any medical ticket that i'll have to pay for my next check ups.In Italy if you have a rare syndrome or disease THAT IS RECOGNIZED TO THE PUBLIC SANITARY "ASL" (like your National Health Institute) in their "rare syndrome chart" you don't have to pay for check up or medicines if you have chronic pain. This Syndrome that is really invalidating and frustrating for my "normal living" is not present in our Italian chart so I'll have to do several exams to control the elongation and I'm going to have huge costs for that! Can you help me in some way? Do you know if there is a medical association or someone (or if does exist an Italian association because I can't find it..)that can give me advices about it?

Heartfelt thanks. Marina

2

Sorry to hear about your diagnosis! Don’t know anything about your medical system so can’t help you there. If you look on the main page you will find info on how rare Eagle’s is.
Best of luck, I hope you are able to get medical care!

3

So Sorry to hear about your condition. It is rare, but I do not know what Italy defines as rare. I would recommend that you try to find an Ear doctor or surgeon who does delicate skull base surgery near the brain to help you. Maybe a neurosurgeon. I think the best place to start looking is near a Medical university in Italy.

It is "Elongated calcified temporal styloid process", which was discovered by a Doctor whose last name is Eagle. Maybe, you can find help by explaining this to your doctors. It is still thought to be very rare, and there is no official code in our medical charts either. I wish we could help you more.

4

Hello Marina,

I think it might be easier if you tried to explain it your Health Authority from another angle. I can explain it to you in Italian so it will be easier to explain it to them.

Mi dispiace che tu abbia questa condizione e che non riesci a trovare una soluzione. Secondo me, forse bisogna studiare la situazione da un altro punta di vista. Invece di vederla come Eagle Syndrome e i suoi sintomi, cerca di vederla come una nevralgia, in questo caso, causata da una allungazione del Processo Stiloide oppure una calcificazione del leggamento Stiloioide che spinge contro uno, o piĂą, dei nervi craniali. Ci sono quattro in quella zona (numeri 9 a 12) chiamati il Glossofaringeo, il Vago, l'Accessorio e l'ipoglosso. Ci sarĂ  senzaltro sulla lista approvata, almeno una di queste nevralgie.

L'altra cosa che potrebbe succedere con L'Eagle Syndrome, è un attaco ischemico transitorio ed anche un colpo apoplettico se le carotidi o la vena giugulare vengono compressi dal stiloide. Per carità, non voglio spaventarti, ma in casi gravi può succedere e forse l'ente sanitaria ti darà retta.

Ti auguro una buona riuscita ed una fine del dolore. In bocc'al lupo.

Red Pill

Translation: I am sorry that you have this condition and cannot find a solution. In my opinion, perhaps we need to study the situation from another point of view. Instead of seeing it as Eagle Syndrome and its symptoms, try to see it as neuralgia, in this case, caused by an elongation of the Styloid Process or a calcification of the Stylohyoid leg pushing against one or more of the cranial nerves. There are four in that area (numbers 9 to 12) called the Glossopharyngeal, the Vagus, the Accessory and the Hypoglossal. There will certainly be on the approved list, at least one of these neuralgia.

The other thing that could happen with Eagle Syndrome is a transient ischemic attack and even a stroke if the carotid or jugular vein is compressed by the styloid. For heaven’s sake, I don’t want to scare you, but in serious cases it can happen and maybe the health authority will listen to you.

I wish you success and an end to the pain. In the mouth of the wolf.

5

Interesting how each country responds to illnesses. I am glad that once you get past the first step, they will take care of you. Thank you Red Pill for being able to give a translation, that will make it so much easier. It is hard enough to explain.

Marina, perhaps you can contact one of the physicians in the US and have the drs. in Italy work with them for the info. Going to a med. Univ. is good.

6

Thank you everyone for your reply, I'll check about specilists in US, but if you know someone inyour country please keep me informed about it!

Thank you!!

:*

7

Thank you Red,

I'll do that. Menwhile I want to say that I discovered some days ago that the eagle s. is probably the main reason for my frequent palpitations (expecially when i sleep sideway) and my really high pressure that sometimes makes me shaking hands like when you are nervous. Did you experimented the same symptoms?

8

Emma has compiled a list of US doctors and it is posted here. Follow her discussions and you will find the most recent list!

9

Mary B. I am attaching a list of doctors, if you have microsoft excel on your computer you can read them, otherwise, I can probably send you some names in our country.

Dr. Cognetti and Dr Samji and Dr Forrest are the most well known in the US, Also the ones highlighted in bold are in other countries. None in Italy, hope you find one and we can add his name. Perhaps, a doctor here would be willing to help you or a doctor in your country. Best wishes.

336-EaglesSyndromeDoctors.xls (42 KB)
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Thanx emma, i can read this file don't worry about it. :*

11

Marina,

Thanks to the efforts of Heidemt (replying to another discussion), which led to a post from another member (John, JC, Colyer), here is a link to a fantastic article (http://emedicine.medscape.com/article/1447247-overview) which not only gives the best description of Eagle Syndrome that I have come across thus far, but the authors are mostly Italian, and therefore you now have a list of specialists in Italy to consult with. In summary, these are the names:


Vittorio Rinaldi, MD Specialist in Otolaryngology, Division of Otolaryngology, Department of Clinical Sciences
and Community Health, University of Milan, Fondazione I.R.C.C.S. CĂ  Granda, Ospedale Maggiore Policlinico,
Milan, Italy

Francesco Faiella, MD Resident in Otolaryngology, University Campus Bio-Medico, School of Medicine, Rome,
Italy

Manuele Casale, MD Specialist in Otolaryngology, University Campus Bio-Medico, School of Medicine, Rome,

Manuela Coco, Department of Otolaryngology, School of Medicine, Campus Bio-Medico University of Rome

Fabrizio Salvinelli, MD Professor of Otolaryngology, Campus Bio-Medico, University of Rome

In regards to your previous question, the answer is YES, I do experience moments of heart palpitations and have for many years, though I am unsure which of the two conditions that I have, is the actual cause. Heart disease and stress have been ruled out as a causative factor.

Good luck in getting a resolution to your health issues.

Red Pill

12

Really Thank you Red, sometimes I'm afraid of this condition and I go down but when I see that some people like you and the people of this community can really be a helping hand also for heart and soul, I immediately feel a little bit better. Really Thanx. <3

1 Like
13

Marina,

You are quite welcome. It is our pleasure to help others, just as each of us has been helped in turn by the members of this support group. One day you will also be in a position to not only offer advice to new members, but to provide long time members with information that they may not have seen or heard of before.

Perhaps the next time you are enjoying a meal that is typical of your region (Risi e Bisi, Polenta e Osei), you can make a Brindisi to the support group. :)

All the best,

Red Pill

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