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Come pensavo...
All'estero non considerano solo I CASI INIZIALI!!! :evil:

Crosslinking procedure
by Valeri Nikolov

Here I share only my experience and, in some cases, my personal opinion.

I will not talk about the crosslinking, what it is and what is does to the eyes. Here I share my experience during and after
the operation. For those who are interested in more formal documents about crosslinking, please find them in the site.
Luckily, there are now plenty of articles describing the nature and the techniques of the procedure. That all is thanks to our
friends from the Gustav Carus clinic in Germany. I visited them in the end of March 2005.

They warmly welcomed me in their facilities. The procedure took half a day as they made exhaustive examination before
taking decision to do or not to do. They made cornea topography scan, cornea thickness scan, vision scan and interocular
pressure scan. I met Dr. Kohlhaas, who won my respect as very energetic and dedicated professional. He explained me
all the things regarding the operation. Many of them I already knew, but it was good to hear them from himself.

The operation cost was 500 euro per eye.

The procedure went as follows:

Anesthetic drops were applied to both eyes.

They put me in horizontal position. Using some needle like tool they did some scratches otherwise said, they opened the
epithelium. After that they put the UV light emitters above my eyes and started the light which I saw as green. Each five
minutes they put the famous riboflavin drops. The drops felt really good; otherwise the light was burning my eyes. At the
middle of the procedure, they put me once again anesthetic drops. I remember the man who was doing the operation
talking to me, which was very kind of him, because this way the operation went faster and put me away from the
discomfort and the burning.

That was it, from a patient’s point of view it is that simple. From that point, however, comes the long process of recovery
which I think is as important as the operation itself.

I divide the post-crosslinking period in several stages.

1. Right after the procedure.

2. First day after the procedure.

3. Closing of epithelium.

4. Restoration of natural tear flow.

5. Back to normal.

It's a little discomforting, but necessary to say, that the first 24 hours after the operation are a little tough of a time. I know
that there are much harder operations and surely more painful. However, if one decides to do crosslinking I believe he or she
must put the discomfort second place and not pay much attention to it. But let me describe the feelings because I think it is
better one to have an idea what is going to happen.

First thing to notice after the operation is that vision is very weak. If one chooses to do one eye only, then this is not a problem,
but if he or she decides to do both eyes, then this is a little of an issue. The question I myself asked before the procedure was
exactly what vision I would have just after the operation. Would I be able to see faces, would I be able to find my way out of
the clinic? The answer is: Sure one can see the faces and the walls and the door, so that he or she can find the way out.
I actually found my way to the main entrance of the university clinic quite easily.

About fifteen minutes after the operation the anesthetic drops' effect is gone. So it is a good idea for one to go to the guest
house or the hotel at that time. It is far more pleasurable to stay in bed with curtains on, instead of walking around.

Big issue is photo sensibility. Get yourself very good sunglasses and bear in mind that even the glasses cannot stop the light.
I remember staying in the car with glasses and my jacket over my head and the light was passing through them and was
causing significant discomfort.

The tears are also worth mentioning. After the operation one has much tear-flow. It continues at least two days after the
procedure. Drinking water and wet tissue compresses for the forehead will help. Get strong food as well. Hopefully your
appetite will not suffer. At least mine did not.

I experienced foreign body sensation in my eyes but that was not painful, just alarming. I didn't know if that was normal
or if it would fade away... actually it faded away after a day or two.

I recommend anyone who decides to do the operation to reserve 3 days in the guest house for post-operational recovery;
one before the operation, and two nights for after the operation. If it is possible, get an accompanying person with you so
that there is one to give you a hand.

After first couple of days, the epithelium closes. After that my vision will start restoring. I am limited to my own experience
and cannot tell what the average recovery time is. I, myself, saw the world a little foggy. After a week that feeling faded
away as well, although the vision was still weak.

I also experienced eye dryness. I started using rewetting drops. If you choose to do so, get one with new generation of
preservatives like Alcon Systane and Novaritis Genteal. The single dose with no preservatives at all is the best choice. I
think that Alcon products are better. At least the best I know.

The first month I used therapeutics lens.
Therapeutics lens are soft lens with very low water content and high gas permeability. The kind I got was for continuous use.
I used them for a week (day and night) before soaking them for a night. I asked dr. Kohlhaas if that is ok and he confirmed
that it was ok. I felt very well with them and I recommend everyone trying them (please consult eye professional first), as they
protect the cornea from dust, from the lid (while blinking). Each blinking is pain when your cornea is damaged. I think they
helped the cornea and allowed faster growing of the epithelium cells. The lens helped me see a bit better.

At the second month after the operation, the eye dryness was starting to go away. I used rewetting drops more rarely but
anyway I found that they feel good as they clean the eye from dust and other impurities. Anyway it is a good idea to put a drop
or two on each eye each morning and evening.

Also I tried soft lens correction, unfortunately with no luck. The soft lens may help a little but not as much as the hard ones.
The gain is probably one line. I also tried soft toric, but I turned that the toric lens would not act as expected as it will not
rotate to fit in place. You may know that the toric lens are expected to rotate by themselves to position in a certain manner so
that they can correct astigmatism. In my case, however, due to irregular cornea the toric lens would not rotate at all, but stay
blocked in random position. That is why I gave up trying to correct with regular soft lens. I have not tried special soft lens for
keratoconus.

I tried again the RGP. The optometrist worked hard and found some fit that I could tolerate. The vision correction was perfect;
however, I did not feel my corneas strong enough. That was on the 10th week after the operation. We recorded the lens
parameters so that when a week or two more pass I will go again to the optometrist, make new fit and compare. If it turns out
that my corneas are stabilized I will try using RGP.

I visited the optometrist on the 15th week after the procedure to see if my vision was stable enough. It turned out that the
metrics we had recorded three weeks ago were of no value to me as the cornea continued to change. According to the metrics
it turned that I needed flatter lens. So, judging by the lens and the fluorescent model, it seems that the cornea continues to
flatten even on the fourth month after the procedure.

I will make another corneal scan but, as dr. Kohlhaas suggested, I should do them five or six months after the operation.
Probably he said so because that is the period where the cornea fully stabilizes.

Immagine

DOPO

Autore:	scaistar [ martedì 30 agosto 2005, 19:15 ]
Oggetto del messaggio:	Nuova testimonianza sulla RIBOFLAVINA!
Come pensavo... All'estero non considerano solo I CASI INIZIALI!!! Crosslinking procedure by Valeri Nikolov Here I share only my experience and, in some cases, my personal opinion. I will not talk about the crosslinking, what it is and what is does to the eyes. Here I share my experience during and after the operation. For those who are interested in more formal documents about crosslinking, please find them in the site. Luckily, there are now plenty of articles describing the nature and the techniques of the procedure. That all is thanks to our friends from the Gustav Carus clinic in Germany. I visited them in the end of March 2005. They warmly welcomed me in their facilities. The procedure took half a day as they made exhaustive examination before taking decision to do or not to do. They made cornea topography scan, cornea thickness scan, vision scan and interocular pressure scan. I met Dr. Kohlhaas, who won my respect as very energetic and dedicated professional. He explained me all the things regarding the operation. Many of them I already knew, but it was good to hear them from himself. The operation cost was 500 euro per eye. The procedure went as follows: Anesthetic drops were applied to both eyes. They put me in horizontal position. Using some needle like tool they did some scratches otherwise said, they opened the epithelium. After that they put the UV light emitters above my eyes and started the light which I saw as green. Each five minutes they put the famous riboflavin drops. The drops felt really good; otherwise the light was burning my eyes. At the middle of the procedure, they put me once again anesthetic drops. I remember the man who was doing the operation talking to me, which was very kind of him, because this way the operation went faster and put me away from the discomfort and the burning. That was it, from a patient’s point of view it is that simple. From that point, however, comes the long process of recovery which I think is as important as the operation itself. I divide the post-crosslinking period in several stages. 1. Right after the procedure. 2. First day after the procedure. 3. Closing of epithelium. 4. Restoration of natural tear flow. 5. Back to normal. It's a little discomforting, but necessary to say, that the first 24 hours after the operation are a little tough of a time. I know that there are much harder operations and surely more painful. However, if one decides to do crosslinking I believe he or she must put the discomfort second place and not pay much attention to it. But let me describe the feelings because I think it is better one to have an idea what is going to happen. First thing to notice after the operation is that vision is very weak. If one chooses to do one eye only, then this is not a problem, but if he or she decides to do both eyes, then this is a little of an issue. The question I myself asked before the procedure was exactly what vision I would have just after the operation. Would I be able to see faces, would I be able to find my way out of the clinic? The answer is: Sure one can see the faces and the walls and the door, so that he or she can find the way out. I actually found my way to the main entrance of the university clinic quite easily. About fifteen minutes after the operation the anesthetic drops' effect is gone. So it is a good idea for one to go to the guest house or the hotel at that time. It is far more pleasurable to stay in bed with curtains on, instead of walking around. Big issue is photo sensibility. Get yourself very good sunglasses and bear in mind that even the glasses cannot stop the light. I remember staying in the car with glasses and my jacket over my head and the light was passing through them and was causing significant discomfort. The tears are also worth mentioning. After the operation one has much tear-flow. It continues at least two days after the procedure. Drinking water and wet tissue compresses for the forehead will help. Get strong food as well. Hopefully your appetite will not suffer. At least mine did not. I experienced foreign body sensation in my eyes but that was not painful, just alarming. I didn't know if that was normal or if it would fade away... actually it faded away after a day or two. I recommend anyone who decides to do the operation to reserve 3 days in the guest house for post-operational recovery; one before the operation, and two nights for after the operation. If it is possible, get an accompanying person with you so that there is one to give you a hand. After first couple of days, the epithelium closes. After that my vision will start restoring. I am limited to my own experience and cannot tell what the average recovery time is. I, myself, saw the world a little foggy. After a week that feeling faded away as well, although the vision was still weak. I also experienced eye dryness. I started using rewetting drops. If you choose to do so, get one with new generation of preservatives like Alcon Systane and Novaritis Genteal. The single dose with no preservatives at all is the best choice. I think that Alcon products are better. At least the best I know. The first month I used therapeutics lens. Therapeutics lens are soft lens with very low water content and high gas permeability. The kind I got was for continuous use. I used them for a week (day and night) before soaking them for a night. I asked dr. Kohlhaas if that is ok and he confirmed that it was ok. I felt very well with them and I recommend everyone trying them (please consult eye professional first), as they protect the cornea from dust, from the lid (while blinking). Each blinking is pain when your cornea is damaged. I think they helped the cornea and allowed faster growing of the epithelium cells. The lens helped me see a bit better. At the second month after the operation, the eye dryness was starting to go away. I used rewetting drops more rarely but anyway I found that they feel good as they clean the eye from dust and other impurities. Anyway it is a good idea to put a drop or two on each eye each morning and evening. Also I tried soft lens correction, unfortunately with no luck. The soft lens may help a little but not as much as the hard ones. The gain is probably one line. I also tried soft toric, but I turned that the toric lens would not act as expected as it will not rotate to fit in place. You may know that the toric lens are expected to rotate by themselves to position in a certain manner so that they can correct astigmatism. In my case, however, due to irregular cornea the toric lens would not rotate at all, but stay blocked in random position. That is why I gave up trying to correct with regular soft lens. I have not tried special soft lens for keratoconus. I tried again the RGP. The optometrist worked hard and found some fit that I could tolerate. The vision correction was perfect; however, I did not feel my corneas strong enough. That was on the 10th week after the operation. We recorded the lens parameters so that when a week or two more pass I will go again to the optometrist, make new fit and compare. If it turns out that my corneas are stabilized I will try using RGP. I visited the optometrist on the 15th week after the procedure to see if my vision was stable enough. It turned out that the metrics we had recorded three weeks ago were of no value to me as the cornea continued to change. According to the metrics it turned that I needed flatter lens. So, judging by the lens and the fluorescent model, it seems that the cornea continues to flatten even on the fourth month after the procedure. I will make another corneal scan but, as dr. Kohlhaas suggested, I should do them five or six months after the operation. Probably he said so because that is the period where the cornea fully stabilizes. DOPO

Autore:	Giuseppe Giannattasio [ giovedì 15 settembre 2005, 10:00 ]
Oggetto del messaggio:
Dato che la mia traduttrice è in ferie, chi mi traduce l'articolo

Autore:	mammadipaziente [ giovedì 15 settembre 2005, 10:39 ]
Oggetto del messaggio:
GIUSEPPE ..NN TI FACCIO UNA TRADUZIONE LETTERALE ..MA IN SINTESI: il soggetto, dopo aver chiarito ke è la sua esperienza e nn sa se x tutti è la stessa cosa: 1) spiega come viene fatto il trattamento (+ o meno quello ke ha messo scai ..) che fra tutto è durato una mezza giornata (comprese tutte le visite e gli esami prima dle trattamento e che volendo si puo' andare a casa subito dopo 2) dice ke, specialmente se ci si è fatti trattare entrambi gli okki, nei primi 3 giorni ci si vede pokino, appannato e la luce fa male cane, dopo la fine dell'effetto dell' anastesia anke gli okki fanno male. Per questi motivi consiglia di stare in ospedale e nn andare subito a casa (spero di aver tradotto bene sta' parte) e se si è fatto il trattamento a tutt'e due gli occhi conviene avere qualkuno ke ti dia una mano 3) dopo i primi giorni dall'okkio escono delle secrezioni ..ke danno un' po' di fastidio e che vengono curate con colliri .. 4) per circa 3 mesi ha portato delle lenti "speciali" a protezione della cornea ...e ci ha visto cosi' cosi' perchè la sua cornea non era in grado di sopportare le semirigide dopo a fatto delgi esami ..è la cornea si era già appiattita. dice che il prof che l'ha operato (tedesco) gli ha detto di fare la topografia dopo 5/6 mesi ke è il tempo previsto per vedere la situazione definitiva. Ovviamente è contento e rignrazia il prof x la sua umanità è professionalità. Dimenticavo ..in questo caso oltre a mettere le gocce di riblo se ho capito bene gli hanno pure "grattato" la cornea..lui dice per "aprire" il tessuto..bho da quel ke avevo letto lo facevano x cercare di correggere la curvatura......

Autore:	Giuseppe Giannattasio [ giovedì 15 settembre 2005, 12:05 ]
Oggetto del messaggio:
Grazie per la traduzione e per la velocità Un abbraccio Giuseppe

Autore:	gizac58 [ domenica 2 ottobre 2005, 19:27 ]
Oggetto del messaggio:	la mia esperienza in merito alla riboflavina
Buon giorno a tutti, > mi chiamo Gianni, ho 47 anni e sono di Bari; circa sei anni fa mi > hanno diagnosticato il cheratocono ad entrambi gli occhi; da allora, > mentre la malattia progrediva, io ho cercato di informarmi tanto > sulle caratteristiche della stessa, quanto sulle possibili, > eventuali "cure" messe a disposizione dalla medicina. Ho vissuto (e > vivo) una serie alterna di speranze e delusioni, nonché, spesso, > freddezza e distacco da parte delle strutture pubbliche, ma anche, a > volte, da parte dei medici oculisti "tradizionali". > Avendo appreso che il cheratocono viene considerata "malattia rara" > (ma in cosa si traduca questa definizione non l'ho ancora capito.), > credevo che lo fosse davvero anche a livello numerico di malati; ho, > invece, scoperto che siamo molti di più di quanti pensiamo e se, da > un lato, mi dispiace per chi vive il mio stesso dramma, dall'altro > sono contento di poter condividere con qualcuno le mie esperienze. > Andando con ordine (temporale), posso dirVi che la prima soluzione > che mi è stata prospettata è stata, naturalmente, quella "classica", > tradizione ed estrema del trapianto di cornea; ma, non essendo il > mio caso ancora al limite, ho cercato di scoprire se ci fossero > strade "alternative" e sono venuto a conoscenza di metodi nuovi, > ormai in uso da alcuni anni, di intervento sulla cornea, praticati > presso cliniche private (a pagamento, ovviamente), sia a Milano che > a Roma. Ho cercato di assumere più informazioni possibili, anche > contattando gli studi e alcune persone che si erano sottoposte a > questi tipi di intervento (con laser o con gli anelli sotto- > corneali): opinioni e giudizi tra i più diversi: chi ne parlava > benissimo e chi molto male, chi ne era contento e chi deluso. Vi > lascio immaginare i miei stati d'animo: sono passato dall'euforia e > la voglia di fare l'intervento "alternativo" al più presto (anche a > pagamento, pur di vederci nuovamente bene) alla sfiducia più totale; > comunque, sempre nell'incertezza e nella confusione. Se aggiungete, > poi, che il mio medico oculista (uno di più famosi primari della > Puglia) è sempre stato molto scettico rispetto a questi metodi > (innanzi tutto perché di recente e scarsa sperimentazione; e questo > è vero), potete immaginare quanti dubbi fino ad oggi mi stia > portando appresso. Pertanto, al momento, ho deciso di non affrontare > l'intervento. > L'estate del 2004, sono venuto a conoscere dell'esistenza di un nuovo > metodo (più che per "guarire" , per bloccare la malattia), praticato > da alcuni mesi in Germania e per il quale solo adesso in Italia si è > avuta l'autorizzazione ad avviare i test, che si sta sperimentando > presso l'Ospedale e l'Università di Siena: il trattamento della > cornea con riboflavina (vit. B2) e raggi ultravioletti; la sinergia > tra entrambi sembra possa rendere la cornea più resistente e, > quindi, impedire che continui a sfibrarsi. > Ancora una volta sono stato preso dall'entusiasmo: ho contattato > l'Università di Siena che mi ha subito fissato un appuntamento (la > sperimentazione iniziava a settembre loro stavano "reclutando" > soggetti idonei); sono andato e, devo ammettere, nonostante > un'attesa molto lunga non programmata, sono stato trattato molto > bene e professionalmente: ben tre medici specialisti (c'era anche > l'Aiuto Primario) mi hanno fatto una serie infinita di controlli > (oltre alla visita e alle solite mappe corneali), illustrandomi > tutti i vantaggi e gli eventuali svantaggi delle terapie al momento > disponibili, soffermandosi, ovviamente, sulla loro sperimentazione, > che, oltre all'uso della vitamina B2 e dei raggi ultravioletti > prevede un intervento di "abrasione" (forse non sono molto felice > nel termine tecnico) della cornea: risultato, a loro dire, blocco > dell'evoluzione della malattia e solo eventualmente (ma non è > l'obiettivo della tecnica) un recupero di qualche diottria ed un > miglioramento del visus. > Mi hanno giudicato soggetto idoneo, almeno per un occhio, > sollecitando una mia iscrizione alla lista delle persone disposte > alla sperimentazione della terapia (naturalmente tutto a costo zero). > L'incertezza ed i dubbi, hanno, però, avuto ancora una volta il > sopravvento e così oggi, sono qui a raccontarVi di me, ma, più che > altro a sentire da Voi qualche consiglio, e ad aprire un colloquio > telematico che possa esser di giovamento per tutti. > Se, poi , c'è qualcuno della mia città, meglio ancora, ci si > potrebbe incontrare di persona e parlare. > Comunque, mi piacerebbe anche sapere se la nostra malattia ha > qualche riconoscimento (e di che tipo) a livello di assistenza > sanitaria, piuttosto che di permessi sul lavoro o altro. > Sono contento che noi malati ci si stia muovendo, oltre che per > scambiarci idee, anche per, eventualmente, organizzarci e far > sentire la nostra voce. > Vi ringrazio per l'attenzione e resto a Vs. disposizione. > Un caro saluto da > Gianni. >

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Autore:	mammadipaziente [ lunedì 3 ottobre 2005, 9:31 ]
Oggetto del messaggio:	riboflavina
Ciao Giovanni, Mio figlio è in lista a Siena per il trattamento. Fra 2 giorni andremo a fare visita di controllo e poi se verificano l'aggravamento farà il trattamento. Se ne vuoi parlare volentieri ma in privato se nn ti spiace. Dopo che avrà effettuato il trattamento raccontenro' a tutti la sua esperienza ma nn prima perchè vorrei evitare inutili polemiche un abbraccio

Autore:	scaistar [ lunedì 3 ottobre 2005, 9:54 ]
Oggetto del messaggio:
Ciao Gianni e benvenuto, questo messaggio però.. è un pò vecchiotto vero?.. perchè non ci aggiorni sulla situazione?

Autore:	geppopas [ domenica 16 ottobre 2005, 12:17 ]
Oggetto del messaggio:	riboflavina ed uva nel cheratocono
vorrei riportare las mia esperienza sul cheratocono. mi chiamo pino, sono un medico, un chirurgo urologo per la precisione, ho il cheratocono dal 1997, diagnosticato in seguito ad una visita oculistica. ho sempre portato le lac. no problemi fino al 2001 quando ho cominciato ad avere forti giramenti di testa:il kc si faceva sentire per la prima volta. allora vado su internet e scopro mini-ARK, di abbondanza e lombardi, ne parlo col mio oculista, che mi dice che sono due criminali....è vero sono due criminali non fate mai la MINI-ARK, è una tecnica molto pericolosa, che indebolisce irreversibilmente la cornea. persuaso a non fare la mini-ARK continuo con le mie lentine a contatto, fino a quando non le sopporto più. di nuovo su internet e scopro gli INTACS, ne parlo col mio oculista e mi dice che: sono utili per correggere il vizio refrattivo ma nonn per la cura del cheratocono(e questo l0o sapevo già), che nel mio caso non sono indicati perchè il mio cheratocono nasce su di un'occhio ipermetropico, e appiattendo la cornea aumenterebbe la mia ipermetropia a quel punto gli ho detto che però migliorerebbe il mo astigmatismo e lui mi ha risposto che questo è vero ma è meglio che non peggiori l'ipermetropia. poi ho scoperto la nuova tecnica con riboflavina ed uva e sono in lista per effettuare questo tipo di trattamento al gemelli,dove lavoro, questa tecnica possiede il vantaggio di rinforzare lo stroma corneale e quindi ritardare il trapianto, ma non guarisce dal cheratocono, e inoltre in rari casi ottiene anche dei benefici refrattivi, ma il cono resta sempre. insomma l'unica vera cura è il trapianto di cornea, ma non ancora è il mio caso...ho capito alla fine della fiera che non c'è scampo da questa croce...è un'infane condanna..sono in trappola...help

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