Sclerotherapy
Sclerotherapy is an established treatment for vascular malformations in the Skin, GI tract and has been used for lesions in various sites in the Head and Neck.
It is now being used to treat patients who suffer from epistaxis both in the USA and across Europe.
However this practice is not widely available in Ireland.
Sclerotherapy and local nasal propranolol: an effective and safe treatment for HHT epistaxis?
Clinical study – Published 2019 – Spain
Epistaxis is the most common clinical manifestation of hereditary haemorrhagic telangiectasia (HHT). Several local, systemic and surgical treatments have been tested, but none has been fully effective. The aim of the current study is to evaluate whether a combined treatment of sclerotherapy and propranolol 0.5% nasal formulation would reduce epistaxis due to HHT and improve the patient’s quality of life.
Conclusions: The study showed that combined therapy (sclerotherapy and topical nasal propranolol) significantly reduced epistaxis due to HHT and improved patient quality of life.
Sclerotherapy vs cautery/laser treatment of epistaxis in Hereditary Haemorrhagic Telangiectasia
New study written by The American Laryngological, Rhinological and Otological Society, Inc published on June 23, 2021
Conclusion: STS (sodium tetradecyl shear therapy) can achieve satisfactory control of epistaxis with significantly fewer procedures and lower postoperative complications than C ± L (Electrocautery and/or laser photocoagulation) . STS should be considered as the first surgical intervention for epistaxis in patients with HHT.
Dr. Sol Marcos Salazar, Associate Specialist in the ENT Service at Alcorcón Foundation University Hospital.
Dr. Sol Marcos has been performing this technique (sclerotherapy) for 8 years, during which time approximately 200 patients have been treated. The treated patients experience a great improvement in their quality of life, and in many cases return to a normal life and even disappear chronic anaemia due to continuous bleeding.
The treatment was first applied in Valladolid, by Dr. Darío Morais, in 1994. Unlike other treatments, such as cauterisation, no reactive and even more bleeding lesions have been seen.
Please take a moment and get to know a little more about Sol and what she does for HHT patients Dr Sol Marcos
You can also view her recent Powerpoint presentation Here
You might also enjoy watching a Youtube video showing a group of HHT patients from Ireland being treated by Dr Sol –updated 20 July 2022. https://www.youtube.com/watch?v=nb_TaPKr8yk
Procedure:
Before any procedure is agreed, discuss with Dr Sol about taking painkillers in advance.
On your first visit, Dr Sol will bring you to A&E to register as a patient on the system. This only happens on the first visit. Then you are ‘on the system’.
First, Dr Sol will pack your nostril with some cotton wool with a liquid to numb the skin and reduce any discomfort or possible pain. This will stay in for about 20 minutes before she begins the injections with a very fine needle. You will still feel the injections, it will be uncomfortable, but it is bearable. And well worth the inconvenience.
Dr Sol will not make you suffer any pain or discomfort that you find unbearable. Most of the fine injections cause little pain. The ones that feel sore are probably the ones that are treating the main bleeding points. These are the ones you really want to get done. Take as many as you can.
Note: This is NOT a surgical procedure. Sclerotherapy is the common treatment for varicose veins. Sclerotherapy involves injecting a ‘sclerose’ solution directly into the vein, where we have a bleeding point. The sclerotherapy solution causes the vein to scar, forcing blood to reroute through healthier veins.
Aftercare Treatment
Following sclerotherapy, propranolol is used as a topical nasal ointment (0.5% propranolol in Vaseline) prepared at the Hospital Pharmacy as a maintenance treatment to space the time between sclerotherapies.
Thinking about Sclerotherapy as a treatment for your epistaxis?
Language: Google translate is a brilliant app for the phone, translating English to Spanish and vice versa.
Appointment: Dr Sol Marcos ENT holds a HHT clinic every Thursday and Friday morning at the Alcorcón Hospital, Madrid. She speaks good English.
You need to arrange your appointment with her beforehand, so she will be ready for you on a Thursday or a Friday, when she holds clinic.
The trip can be done in one day. However, we would suggest you rest overnight at local accommodation before flying home the following day. You could stay in the city, but you may feel uncomfortable, so the local NH hotel is very convenient, a 15 minute walk away through a nice park. https://www.nh-hotels.com/hotel/nh-alcorcon
Contact: Office phone is 00 34 91 6219678. Sometimes Dr Sol cannot answer it because she is otherwise tied up, so please leave a message where possible. Email is solmarsal70@gmail.com – email works best for Doctor Sol
European Health Insurance Card: It is essential that you bring your up-to-date card with you. You may apply for this card through HSE website – https://www2.hse.ie/services/schemes-allowances/ehic/apply/
Alcorcón hospital is a public hospital.
Before you book the airline ticket consider the options of a one-day trip or two-day trip. When you book the ticket check the timetable of arrival and departure times from Dublin and from Madrid.
These are your choices:
- You can book with one airline a DAY RETURN TICKET
- You can book a DAY RETURN TICKET with two different airlines
- You can fly on two different days and book an overnight stay.
Assistance
For anyone who is nervous about their health or feels vulnerable walking long distances when travelling, all airports have a brilliant free service for assistance. This service is booked when you purchase the airline ticket. Refer www.ocs.com for further info. They are very helpful; they look after you the whole way.
When departing Dublin, you need to present yourself at the airport at the disability desk. The service will extend to your arrival in Madrid. Just let the cabin crew know. Assistance staff will bring you to the taxi area.
When departing Madrid, look for the signs for disability assistance.
(PMR) pasajeros con movilidad reducida
“El punto de encuentro PMR Asistencia de viaje en la terminal por favor.”
Madrid Airport: – Adolfo Suárez Madrid-Barajas airport has four terminals.
Each airline has a designated terminal. When you purchase the airline ticket it indicates which terminal you are flying to. Pay attention to which terminal you land. You will be returning via the same terminal.
RyanAir flies to T1. Aerlingus flies to T4
T4 – Usually when you leave the plane you take an internal train to luggage reclaim. Just follow the crowds. You will arrive at the arrivals exit.
LLEGADAS = ARRIVALS SALIDAS= DEPARTURES or also exit
To travel to the Hospital Universitario Fundacion Alcorcón, you can travel by taxi or public transport. Alcorcón is a city in the south of Madrid.
TAXI: Approx 30mns
It is recommended to go to Doctor Sol in the hospital by taxi, if you are under time pressure. By public transport you would need to make changes and you could be too late for her, depending on the time you land in Madrid.
If you arrive at Terminal 4 with Aer Lingus, taxis are on the right as you come out of the main exit. €30 euro fix rate to city centre or it’s around €50- €55 direct to the hospital.
The exact address is Hospital Universitario Fundación Alcorcón, Calle Budapest, 1, 28922 Alcorcón, Madrid.
BOLT, FREENOW and UBER are taxi companies available in Madrid as well as regular taxi.
To travel to the hospital by train is a bit more time consuming as there is no direct metro, train or bus. Airport to Atocha 30 minutes journey. Then Atocha to Alcorcón 20 minutes journey via Cercanias railway, plus waiting time and walking time.
From the airport, take train (Cercanias) to ATOCHA (Big connecting station to all areas in Spain). At Atocha station, change over to C5 (Cercanias) to Alcorcón station.
You need to purchase the first ticket at the machines at the airport and then another one in Atocha. There is a train every 15 minutes. BEWARE that tickets expire after some short time, such as two hours. You cannot purchase tickets to use later in the day.
Alcorcón Station (Avenida de Móstoles con Bailén) is a short walking distance away from the hospital. Walk out the door of station, turn left and walk 200 metres, then cross over and take next righthand turn. The hospital is on the left.
METRO: It will take you about 90 minutes to get to the hospital from the Madrid Barajas airport door.
If you arrive at the airport on Thursday at about 10 am, to get to the hospital you can take the Metro at Barajas Airport to go to Nuevos Ministerios (line 8) and from there you have two options -:
- The first one is to take the Cercanías (that means short distance train) that takes you to Atocha, any line, and from there the Cercanías to Alcorcón Central, (line C5), that’s the train station closest to the hospital in Alcorcon.
- The second option is changing Metro at Nuevos Ministerios to take the line number 10 that takes you to Puerta del Sur and change trains to line 12 and from there you have just 2 stops to get to Alcorcon Central.
You can find the map of Metro Madrid in Google and also the one of Cercanías Madrid. A very useful app is Cityplanner.
Public transport is cheap.
At time of print, wearing a mask is mandatory on all public transport, taxis, trains and buses or in public buildings such as the hospital
Enter the hospital through the main entrance.
Dr Sol can be found at Room 17 on the second floor, which will have an ‘HHT’ sign at the door. Take the escalator when you enter the front door, Puerta Principal, then at the top of the second escalator turn right and right again, basically coming off the escalator and going back towards the front of the building. Follow signs to the left for MEDICINA INTERNA and OTORRINOLARINGOLOGIA
You will see Aseos or Banos on the left, as in Ladies or Gents toilets, in case you need them.
Then turn left and walk 50 metres, where Room 17 is on the right.
Take a seat on the left just outside the door.
Speak loudly to alert Dr Sol that you have arrived.
Dr Sol has good English. She is petite, quiet and unassuming, and may be a slight challenge to understand easily, but she will be able to talk competently in English. You can trust her in every way. Speak slowly for her.
DAY TRIP IN MADRID
By the time you are finished the Sclerotherapy treatment you can take a train or a taxi to the city centre of Madrid. There are usually other patients being dropped off at the hospital and you can take their taxi. Or you can ask Reception/Dr Sol to ring for a taxi for you.
“Un taxi para el centro de Madrid por favor” – We recommend you go to Plaza Mayor or Puerta del sol. That’s the very centre of Madrid.
As you come out of the hospital’s main entrance turn right. The train station is a short distance away so it’s easy to walk to. Purchase your train ticket at the Cercanías machine for the ‘overground’ train (Cercanías) – see the ‘C’ logo. Stay overground, and do not go to the underground train station. You get the C5 ticket on the machine (on the left hand side) to Atocha, which is the main train station in the city centre, for about €1.85. You can take a taxi from there to the centre @ €10. Or walk in about 15 minutes.
Or you can take the Metro as it’s only a few stops.
Madrid has a lot to see. And you will may well enough to eat and visit a bit of the city. Especially on the second day. You can visit Dr Sol on Thursday and revisit on Friday morning, if you need any more points done. She will guide you on this.
There are lots of tourist spots to eat in and around the Plaza Mayor where you can have “El menu del dia” (the day menu). A choice of starters and mains for around €16.
Mercado de San Miguel – Enjoy a lovely visit to the market of San Miguel, just beside the Plaza Mayor, where you can eat fresh fish and tapas and have lovely wine in a great atmosphere.
Puerta del Sol – This is where Spain’s KM 0 is located. The symbol of Madrid -the statue of the Bear and the Madrone tree is also located here. This is also where New Year’s Eve is celebrated every year.
Gran Via or Main Street is not too far either. You can see a musical in the Gran Via.
If you don’t want to visit the Centre, you may visit the El Retiro Park – https://www.esmadrid.com/informacion-turistica/parque-del-retiro
or a visit to the museum of El Prado – https://www.museodelprado.es/en
Make sure you try Churros con chocolate when you are in Madrid. If you do like chocolate, visit Vicens store for Torrons. https://www.vicens.com/
Don’t forget you can also catch a free walking tour. Or book the Madrid Double Decker Tour Bus.
Travel to Airport:
(Alternatively you may take a taxi from city centre @ approx €10 for a short ride to Atocha station)
Then purchase your train ticket and C5 train will get you back to T4 terminal. Be aware that if your gate is Terminal 4S that the S takes a further 34 minutes to get to from Terminal 4 itself. There is a free shuttle bus that will get you to your terminal. Beware that this is time consuming.
By Taxi:
The easiest option is to take a taxi from the City centre direct to the airport. There is a fixed price of €30 up to 6 people. Please make sure before you get in the taxi you confirm the price.
“tarifa fija de treinta euros al aereopuerto por favor”
You can stop any taxi in the street. Some have a label saying Airport €30
TWO DAY TRIP
Accommodation
Hotel NH Alcorcon – https://www.nh-hotels.com/hotel/nh-alcorcon
You can stay nearby in NH Hotel in Alcorcon within a short walk from the hospital, about 1.5 km or stay in the City centre if you prefer. It means you do not have to ask questions in Spanish. After the procedure, you will feel a bit battered and bruised and you nose will be packed with absorbable gauze, so you will probably not feel like going out on the town. You nose will definitely be ‘runny’ so it can be uncomfortable to be out in public. Breathing through your nose is not likely to be possible or easy for a day or two, with the packing in place. Be prepared to be uncomfortable, but there is not likely to be any pain as such. Sleeping will be a challenge. You may want to buy food in the local Aldi supermarket and stay in your room for the evening. A small price to pay. And it will take a few days for your nose to become less bruised and allow you breathe better. Anything to reduce the bleeding is well worth it.
Wearing a facemask will be of great benefit as no one will notice!
Hotel NH Alcorcon 4*hotel
Hotel NH Alcorcon, Avenida. Europa nº2 Edificio A, Parque Oeste, Alcorcón, ES 28922
There are places to eat right behind the hotel. There is a TGI Friday’s and a nice Italian upstairs from it. Chinese restaurants and a McDonald’s a short walk down the road. There is an Aldi to get drinks and snacks or a salad. The hotel is modern, clean and functional. The rooms are good, wifi is good and the bathrooms are well equipped with toiletries etc. The chances are that you will want to just stay in your room, but there is basic food and drink available beside reception. It is not a holiday, so you will probably be happy with the sheer convenience of this hotel.
If you bring company or family with you, and they are not going through the procedure, they may want to stay in the city centre. The city has many restaurants, bars and great shops to visit. It is a vibrant, beautiful city.
If you visit in one of the ‘hot’ months, you will want to ensure that you get accommodation with Air Conditioning for your comfort, especially for your nose.
If you wish to stay in the city centre, there are many hotels and hostals (value hotels) available. For example:
Hostal Castilla II
Hostal Castilla II, Puerta del Sol Marqués Viudo de Pontejos 2, 1º, Madrid City Center, 28012 Madrid,
Return as required:
Spanish phrases:
(PMR) Pasajeros con Movilidad Reducida
Ask for assistance –
The PMR meeting point Travel assistance in the terminal please.” =
“El punto de encuentro PMR Asistencia de viaje en la terminal por favor.”
Arrivals = Llegadas Departures/Exit = Salidas
Ladies/Gents toilets = Aseos/Banos
A taxi to the Centre of Madrid please = “Un taxi para el centro de Madrid por favor”
Menu of the day = El menu del dia”
No puedo hablar Espanol or No hablo Espanol – I cannot speak Spanish or I do not speak Spanish. Usually people in Madrid will have some English and communicate pretty well. Especially the younger people.
Gracias – Thank you
Por Favor – Please
Hablas ingles? Do you speak English?
Bottom Line
Patient Experience of Sclerotherapy – Idoia.
“After an extensive family history of epistaxis, I was diagnosed with HHT in 2017.
I have HHT Type 2. ACVRL-1C626-1G
I had never heard of it until my son was diagnosed by his ENT in Vincent’s hospital in Dublin. My father, brother, son and I had the symptoms but we didn’t know it was an actual rare disorder.
I contacted Dara Woods through Facebook. I was amazed there were more patients like us. Dara facilitated information and contacts to make the appointment with Dr Sol for nasal Sclerotherapy treatment. I have attended Dr Sol Marcos in Alcorcón Hospital in Madrid four times. The first time I attended was in November 2021 with my son. I went with him to offer him moral support as he was bleeding more and more often than I was. That wasn’t a good enough excuse for Sol. If you have HHT and bleed at all she will very kindly encourage you to sit in her (big-barber type) chair in her surgery. If you bleed it means that you have lesions (telangiectases) and it’s better to treat them when they are little.
It was wonderful to meet other patients in person. Some had travelled long distances and I met people of all ages. We shared stories of how HHT conditions our lives as well as symptoms and treatments. Other patients had attended several times. All the stories about Sclerotherapy treatment were very encouraging and positive. And there was a consensus that the amount & frequency of bleeding had significantly reduced with this treatment. Frequency of attendance was different for every patient also.
As I have learned,
- There isn’t a recommended time to attend based on frequency or amount of bleeding.
- There is not a prescribed number of sessions to help improve epistaxis.
- It isn’t determined how long to wait between sessions.
It is a personal intervention.
For some of the patients it was useful to attend before a family celebration or before holidays or to just help with epistaxis. Individuals assess when they need to have Sclerotherapy and how often.
I went for my second session three months after my first one. I went for my third and fourth sessions after six months’ intervals.
On my third session I got Sclerotherapy on my nose, and I also got it done on a very nasty bleeding telangiectasia at the top of my index finger. Now that was more painful than the nose, but the telangiectasia disappeared after a week!
The sessions are not long. Dr Sol holds a clinic on Thursday and Friday mornings. It is a busy public hospital. We all wait outside, and she calls us in rotation.
Firstly, local anaesthetic is applied in liquid form in cotton wool stuffed up the nostril. After a ten minute wait the Sclerotherapy is applied through a fine needle directly into the telangiectasia. Dr Sol explores the nose and talks through her findings and her actions. Injections are short maybe 5 seconds or less. She then applies more anaesthetic, and the patient waits again while the next patient is seen to.
Those five seconds are painful, but it is bearable and so worth it knowing the benefits. Some parts of the nose are more sensitive than others. Ideally the first couple of times you attend Dr Sol’s clinic you should see her both Thursday & Friday mornings so she can have a good look and get to as many telangiectases as possible. The bigger ones might need a couple of tries. It does get much easier and it takes less time after a couple of visits. My last visit was on the 26th of May 2023, and she informed me that my nose was in very good condition. Sclerotherapy doesn’t affect the nose membrane, so the lining stays healthier. In my case, as it had been the experience of the patients I met on my first visit, my epistaxis amount and frequency have considerably reduced.
Afterwards Dr Sol applies some self-dissolvent gauze and you experience a light nose drip for a couple of hours. You are perfectly alright to travel, eat or visit the city. It is recommended to have paracetamol before and after the Sclerotherapy session.
Dr Sol gives a prescription for Propranolol cream twice a day. This is administered by the hospital pharmacy as it was developed and patented by them.
She also recommends washing the nostrils with Amchafibrin and apply Terra-cortil cream two or three times a day over 7 days. She keeps a record of each intervention, and she gives the patient a copy.
I hope this was helpful.
Best Regards,
Idoia Dunbar. Co Wexford.
Patient Experience of Sclerotherapy – Darren.
I remember being a small boy with tissue hanging out of my nose. My life seemed to be a series of events punctuated by frequently occurring nosebleeds. I have memories of sitting in hospital corridors waiting to see another man in a white coat who will say, ‘this may hurt a little’, as the burning spear of death was shoved up my nostril. The Spartan children didn’t go through this!
My nosebleeds continued into adulthood. I got on with my life and incorporated nosebleeds into daily existence; knowing and accepting that a white shirt would probably have at least one bloodstain when the day was done.
I reached my forties when nosebleeds stopped being an inconvenience and became a health problem. My haemoglobin levels rarely reached above nine, leaving me pale and tired all the time. Two senior ENT specialists could not tell me what was causing my nosebleeds, which was most infuriating.
Finally, my GP sent me to Mr. Amin in the Mater hospital for examination. Mr. Amin looked up my nose and said those three beautiful words. “You have HHT”. After a life of cauterization and laser treatments, I was sent to the HHT centre in Cork for testing and the results came back positive. I still had my nosebleeds. My white shirts continued to be assaulted. But at least I now knew what was causing me this misery.
I can clearly recall feeling happy that day. There was a trail and a goal; now all I needed to do was take my newfound knowledge and talk to others about their journey and survival. Upon the HHT Ireland website, Dara had mentioned a treatment called sclerotherapy. This treatment was not available in Ireland, but Irish people were traveling to other European countries to avail of this other solution. I say solution, because as of yet, there is no cure for HHT, but there are always doctors and patients looking to find management strategies to make patient’s situations more endurable.
Dara mentioned a specialist in Madrid called Dr. Sol Marcos who uses sclerotherapy to treat the nose AVMs, which up to that point had caused me so much trouble. As a result of all of the cauterizations and laser treatments, I now had a nasal perforation that was adding to my nasal misery. I attained my European Health Insurance Card (This is an entitlement of any European member citizen to travel to another participating European country and avail of treatment not attainable in the patient’s country of origin).
I travelled with a few fellow HHT patients to Madrid(“This happy few. This Band of Bleeders”) We stood in line outside Dr. Sol’s treatment room in the Hospital Universitario Fundacion, Alcorcon. The curtain was drawn back and out stepped this effervescent lady who was welcoming in fluent English and gentle in bedside manner. Sol could not be more caring and attentive. I sat in the medical chair and Sol talked me through every aspect of the procedure as she went along.
Her system of rotation is efficient but never exclusive. One patient is treated with local anesthetic and asked to stand to the side while the next patient is anaesthetised. This goes around until we arrive back at the first person who then gets their first round of sclerotherapy. The needles used are tiny and Sol never stops talking you through what is happening. I do not find this a painful procedure, though others have mentioned pinches and stings. Sol is, after all, using needles to inject the troublesome veins, but the anaesthetic does its job. Each patient is again rotated and the next round of respective injections are administered. My individual experience lasted a few minutes, but the routine of treating a group rather than an individual takes about an hour – an all-inclusive hour of instruction, discussion, and enlightenment of our condition.
And in the middle of it all is the wonderful Dr Sol and her team who conduct proceedings with overwhelming care.
When all is concluded, noses are a little bloody, a little stuffy, but this soon passes. The next few hours see the nose recover by draining a lot, so keep the tissues handy. Try not to blow. Your nose is simply inflamed from the procedure. I find after a few days the stuffiness diminishes and my airways open up again.
I can not recommend sclerotherapy highly enough. I still get nose bleeds, but they are 10% what they used to be, and there are no more late-night visits to A&E.
I find that after a month or two of treatment, my bleeds begin to lengthen in duration and frequency. I know then it’s time to return to Madrid to visit Dr. Sol.
Darren Williams