TESTIMONIALS FROM SOME OF OUR MEMBERS
Your opinions motivate us to keep on working.
•My name is Jara Durán and I’m 40 years old. Twenty years ago I was diagnosed with Trigeminal Neuralgia. I went over to the emergency room, because I felt a strong pain in my jaw, from my ear up to my molar, which didn’t remit with anything. I underwent two surgeries and taking the medication that was indicated for this disease, my pain still didn’t remit, and it hasn’t ever since. I’m a Mother, and I work, and I can’t even begin to define what it’s like to be in a Hospital in this situation.
When I was physically and mentally faded I met the Spanish Association of patients with neuropathic pain (AEPA ATM), and it was the light at the end of the tunnel, they gave me very important clinical advice, but they were also very humane, which is very forgotten in today’s medicine. Thank you for showing me the path to follow, for inquiring my case, but especially for being there, taking care of me when I saw no way out. . The healthcare team realized that my diagnosis was wrong.
I suffered from another bone pathology. Since I was diagnosed, I have already reacted to the new treatment . I have been lied to for twenty years.
Today I appreciate your work. However, I also have to criticise public health because, how can there be patients who have been diagnosed for 20 years? Surely it was unintentional… but it has consequences, it IMPACTS BRUTALLY on people’s quality of life. Some of us are severely medicated for a pathology that we don’t suffer from.
These types of pains are a lottery that nobody wants to be affected with, that nobody understands and that take you to the limit of your strength. Thanks to assistance of many people, from the Association, I have learnt to live with my disease and to try to enhoy the fight because these diseases are treated with honour and consideration. Facial pain has many diferentes issues. In many cases it is not Trigeminal Neuralgia and that’s what many patients believe they have, and they end up in the operating room. However, a lot of patients never had Trigeminal Neuralgia to start with.
Thanks to all who have contributed in my case. To patients, I pray for you to have perseverance, strength and encouragement. My advice is that you do not resort to surgery without 100% assurance about the possible cause of pain. Without a correct diagnosis there will be no correct treatment. Today I have it. I know what I have. Moreover, I am with good clinicians and health workers. My pain has decreased. Little by little. I will keep fighting.
#correctdiagnosis Jara Durán. Badajoz. Estremadura. You can keep in touch me through this Association. January 2020
•We are so grateful for the unpayable work done by the health workers, professionals, press and clinicians who collaborate with this Association. My wife’s case was analysed and correctly diagnosed after many years of facial pain. We finally have hope again. Please continue with the spirit and will with which you help people. Agustina y José Antonio, Entrepeneur. Cuenca. Spain. April 2019.
• My name is Cecilia and I am 35 years old. I was in good health until the summer of 2017, when I had appendicitis. As a result of this operation I was left with a pain that became unbearable especially when I walked or simply when I was standing up. After several months, in a digestive surgical consult they confirmed that the symptoms that I presented fitted with neuropathic pain, which means, that probably when I had surgery, they had damaged a nerve in the abdominal area.
In the surgery department, the doctor wasn’t really sure where to refer me to because, as she told me, it was something that did not happen normally and they did not have an action protocol. In the end I was referred to the pain unit with very strong medication and an uncertain prognosis.
The pain was somewhat relieved with the medication but it was still incapacitating for me, my life came to a halt at a personal and work level. My degree is in the health field.
When I didn’t see improvement and health professionals were disconcerted and confused with my case, I didn’t give up and I investigated possible solutions day in day out until one of these searches took me to AEPA ATM. I immediately got in touch with them and by only doing this; it gave me strength, tranquility and above all security. They selected the best professionals individually for each case. It helped me a lot.
I spent several months undergoing the different tests and treatments that they recommended for me. It took me a year, but finally today I can say that I have reached the point where I have a life which is worthwhile, and although I am still not up to my 100%, I hope that I will be completely fine one day. If you had told me this six months ago, I wouldn’t have believed it.
Therefore, I send a lot of strength, persistence and above all hope to all those who are going through something similar. Try to support the people who help you and find all the options that are necessary to get better. Cecilia Domingo, Health Care worker; February 2019
A huge THANK YOU to this Association.
• The day I found, after years of searching for this association, and reading all the testimonies of people who had been cured from this damned disease, my dream was to be able to depict my testimony here, and well, here you have it.
My name is Sofia, and since I was 18 years old I have suffered (since then I was badly diagnosed), what everyone said was an essential trigeminal neuralgia, now I am 51 years old.
It all started when I was biting an almond, an indescribable pain ran through my face which made my skin crawl, pain that I have always denominated as “cramps”.
From that moment onwards, everything changed in my life, from that age I started taking various medications at very high doses. This pain destroyed me and my family. Being totally positive. Then I opted for surgery. The first neurosurgeon who saw me, and did the tests to rule out that it was something else, recommended me to section the nerve, and I was so desperate that I decided to do it, thanks to the advice of my family ruled that idea out, and it was a right choice because the consequences would have been disastrous and my pain would not have disappeared. Later, I was recommended other techniques. I have spent fifteen years in which I have undergone nine interventions of this type, two private and seven through social security.
When the doctors verified that this was not a solution for me, they offered nerve decompression, without giving me any kind of guarantees and with the risk of maintaining irremediable sequels. I refused to do it.
The last three years of my life have been hell, with daily “cramps” and very strong crises at least once a month.
My affected branch is the second, but I could not blink, or touch my head, let alone talk, eat or touch my face. I have even been given food with a syringe because swallowing also triggered pain. I have gone through not being able to get out of bed because of how medicated I was or having to go down the streets touching the walls because I felt as if everything was spinning.
I did not want to live anymore. I could not live like that …
In my effort to read and find a solution, I found this association, and I won the lottery with it!!
After having a study done -which included lots of tests- for my health insurance, the clinicians of the association told me that I had some problems into my mouth. I thought I had died.
I would only like to tell you that the only thing I’ve done so far has been getting a tooth removed and I have accessed a treatment which was recommended by the clinicians to regenerate the nerve, since it was completely burnt due to the collateral damage of so many operations.
The horrible cramps ceased the day I had my tooth remove, and the discomfort that I have left is disappearing day by day. I still keep caution. But I feel sure of the steps that I must follow. I have not had a “cramp” for five months.
I will never be grateful enough to this association that has given me the most precious gift “HEALTH”.
A TEAM OF MAGNIFICENT PROFESSIONALS WHO, IN AN ALTRUISTIC FORM, worry and study each case, as if it were their families.
We have HOPE, THERE IS A SOLUTION. A good diagnosis is essential, AND EVERY CASE IS A COMPLETE DIFFERENT WORLD.
Thanks to them, now I smile, I enjoy every second without pain, and I feel like I could eat the world.
With prudence I follow my path. I’M HERE IF YOU NEED ANYTHING!! Sofia, worker (51 years old). Cáceres. Spain.
• My mother was diagnosed more than 12 years ago with Trigeminal Neuralgia. For years the medication worked, but then the situation became hell. The neurologists told us that they couldn’t do anything else for her. They derived her to the Pain Unit. They gave her more medication, intravenous treatments without good results …
They were about to intervene on two occasions and, for various reasons, they ended up not operating on her. She was admitted twice. The situation was exasperating. We didn’t know what to do anymore. Years and years of suffering. We got in touch with the AEPA ATM Association, which has been our guide and support through everything.
Thank you to your medical team and also to each of the volunteers and other collaborators. After a difficult journey, and touching wood, I can say that my mother is much better today. And, she has hope towards it continuing to be like this. Therefore, I send a message of encouragement to all those people who are in a situation similar to ours. Don’t give up, ever. You have to be advised by good professionals and be very cautious with surgeries. Keep in mind that there are less invasive effective options for the patient. Once again, THANK YOU to the Association. Juana Ramírez, Housewife (66 years old). and Aranzazu, (daughter).
- Hello, I’m a nurse. For many years, my husband had been suffering from Classical Trigeminal Neuralgia. He had to go through many tests to rule out other etiologies of his facial pain. Finally, we confirmed with the Association’s clinician team that he suffered from essential NT.Before knowing the Association, my husband had had interventions on three occasions, twice with diathermocoagulation of the Gasser ganglion and another a craniotomy with microvascular decompression of the trigeminal nerve. None of the three interventions obtained good results.A few months ago we contacted the Association. One by one, they went through all of the medical tests, and they added more. A month ago, my husband underwent treatment with a specialist, selected by the clinical team of the Association. A month and a half has already gone by, and, currently, my husband isn’t in pain anymore.Currently, my husband has no pain and his medication is being reduced. For us, it’s like a DREAM. And we’re being very careful. I hope that it will stay like this. You were right when you told us to not give up. HOPE should be the last thing you lose. We are very, very, very grateful to the whole team. Thank you.José María Sánchez Gómez. Entrepeneur. Badajoz. Spain, 59 Años. March 2018
- I am now facial pain-free since 3 years ago. I hope it does not come back. You are always afraid of it, but we have begun to live. José Ramón, 66 años, December 2017
- My name is Ignacio and despite living with multiple sclerosis for 30 years now and with great strength of will, I have an active life and I’m still working.
I started with Trigeminal Neuralgia 7 years ago (2010), responding to a medication at first, but two years later, “the Beast” appeared again. This time, even reaching the maximum dose of medication. The pain continued to increase until it was completely out of control. I then started with botox and Lidocaine. I then tried alternative therapies …, acupuncture and osteopathy.
Afterwards, I started to take a whole arsenal of medicines. Lastly, I was put on morphine, and nothing happened. I finally entered the pain unit of my hospital, but the results of this intervention were not the desired ones either.
In my life as a worker, I had only missed work one day, in April of 2017, because I had no choice but to take it. I couldn’t work anymore. I stopped being a person. My wife did too. The person who I love most, and the one that I was-indirectly- hurting the most.
After an intense search, we were told about the Association (AEPA ATM). My wife contacted them on my behalf, as I couldn’t speak anymore. This marks a before and after in my life. This is because, in the most difficult times, they managed the necessary procedures to get us on the right path, guiding us on the medical treatment to follow.
In July 2017, I had an operation. I was born again that day. I went into the operating room without being able to speak, almost without being able to drink and eat. But after this surgery, I began to talk again. When I woke up from the anesthesia. Although I was more afraid than embarrassed and tried to move my face a little so as not to wake the “beast” … I could speak, the pain had completely disappeared. I couldn’t believe it…
Therefore, I have no words to thank all AEPA staff for what they have done for us and what they have meant in our lives. After being drowned in a deep well that seemed impossible to leave they gave us hope and thanks to their help, we got to see the light. We receive constant support, as well as guidance on the steps to be taken, leading us to a solution quickly, seriously and professionally.
In some cases, it may be that a solution exists. You just have to trust and NOT give up. THANK YOU to AEPA and to the whole team that collaborates with them. Your help has given me back the desire to live.
Ignacio, 52 years old, with classic NT. November 2017.
- On behalf of my mother Carmen, we would like to thank the Association for their help. To the whole team of volunteers and clinicians. My mother had been suffering from classic Trigeminal Neuralgia for 11 years. She had to be diagnosed again. Thanks to the Association team and the coordination of all its members, my mother is enjoying a high standard of quality of life. It has not been easy. We all lived a desperate situation. I am a nurse and I work in a hospital. We have turned to the Association’s team to solve this problem. I insist on the importance of the correct diagnosis as each person suffers a neuropathy for a different reason. It has been extremely hard. We will never be able to thank them enough for what they have done for our mother and the whole family. Thank you to all the team of this Entity.
@AEPAATM Family of Carmen, Patient suffering from a classic NT in all 3 branches.
- I UNDERSTAND…
I’m talking to you, the one who is on the limit, the one who can’t handle it any longer, the one who has no more strength left because I know what it’s like to live in the dark, I know first hand the hopelessness, the inner chaos, the PAIN and the desire to end it all.
I UNDERSTAND because I was also on the tightrope and I felt the irrepressible desire to end everything… In my particular hell, it is true that I have met great doctors who have helped me, but the reality is that most do not … TOTAL DEHUMANIZATION OF THE SPANISH HEALTH SERVICE.
They closed all my doors, they left me to my luck, they told me the words NEVER and IMPOSSIBLE infinity of times, but I managed to recover the sanity at some point of the day and I refused to believe that it was impossible, that there was nothing else to do…It is essential to keep going and to fight, even though it’s hard, to look for opinions and options and to inform yourself well, information is very powerful. Even when your doors are all closed, there are still windows to be opened, but you have to look for them.
The help of family and friends is extremely important, but, the only person who can change your situation is the one that you see in front of the mirror. True strength is not found in resistance, but in will.
Fight, fight and fight, have small daily goals and do not close yourself to any therapy which is well contrasted. The only thing I’m sure of is that we have no idea about what will happen tomorrow, maybe tomorrow will be “that day”. Far from being healed or leaving my illness behind, I know that there is a path to which I will never return. You can do it!!! Believe me because I … I UNDERSTAND YOU. Thank you to the Association. (AEPA ATM). Sara Somoza. I was working in a Bank.
- My name is Gloria Moreno. I’m 60 years old. I’m Bachelor of Veterinary Science. Currently, I’m retired. 20 years ago, I was diagnosed with a horrible autoimmune demyelinating disease: Multiple Sclerosis. I’m married to a wonderful man called Carlos, who works as a lawyer and is tenacious. He has accompanied me every day. He hasn’t let me give up. He has dragged me through every indication of the Association AEPA ATM www.pacientesatm.com Against my will. I didn’t want anything. Trigeminal Neuralgia had ended me.
Three weeks ago, I had a small intervention done. I’m very, very happy and I say it with caution. I no longer suffer from PAIN in my face. The lashes have disappeared. I didn’t have to have my head opened up. For the first time in 20 years, I have had weeks without Trigeminal PAIN. I want to clarify that I suffered from Classical Trigeminal Neuralgia due to my demyelinating disease. I have gone back to being what I was before. I look forward to going back to studying. I’m still scared.
I had a small surgery. I spent a day and a half in hospital. When I reached my room I didn’t have any pain. All this process has been covered by my private health insurance in Madrid. The road has been very long because I had to follow the steps-one by one- without missing any of them…but now I have no pain.
Why steps in a process with these characteristics? Because the AEPA ATM team had to make sure whether my pain would react to non invasive techniques or not. I am thrilled to have known this entity and its volunteers. To every one of you, THANK YOU SO MUCH for your efforts. For convincing me when I didn’t want to go anywhere. I recommend to all of those who are in a process of these characteristics and who suffer from Classic Trigeminal Neuralgia to call this Association if you still have pain.
I was left “attached” to an amazing doctor. He was incredible and he still is…but his technique didn’t work. I still had pain. Therefore, my husband called the Association and I had to abandon that doctor-who I was attached to-. In the Assosiation, they changed me to the next step. I gave up and my husband dragged me back again. I wasn’t very convinced. I’m very conservative. Now I have to say I don’t have any pain. So don’t stay attached to any professional clinicial. Health is something too important.
Keep advancing. It’s possible to fight against Classical Trigeminal Neuralgia, if there aren’t any bone lesions. Don’t stay on the road. It’s very interesting that all the Doctors who collaborate in the Association work in different hospitals. Every one of them is good. But the patient has to advance himself, with his family. Thank you all!!
Gloria Moreno,60 years old. Retired. Patient affected in the 3 branches of Trigeminal Neuralgia. Right now she does not suffer any pain. 17th of October, 2016. Update 12th of November 2017
- With these words I wanted to express my gratitude towards everything that you’ve done for my mother in the Spanish Association of Patients with Neuropathic Pain. The day that I found out about the existence of this Association my mother had been admitted in the room 3.412 of the neurology floor from the University Hospital of Hospital San Cecilio de Granada for several days with trigeminal Neuralgia because she suffers Multiple Sclerosis (MS).
These days have been the worst that we have passed in our life, as seeing your mother suffer so much pain, to the point where she became unconscious because of it, is such a horrible feeling that cannot be described. The pain episodes were with an intensity that was stronger than ever. She had been suffering from Trigeminal Neuralgia for 9 years.
The pain attacks could last up to 20 minutes followed by a break. My mother’s situation in University Hospital of Granada was one of person whose luck has abandoned it, in which no specialist gave her a solution. She was sometimes attended by a neurologist or an internist, depending on who was on call without giving her any type of explanation or possibility of ending her problem.
The contact with her in this hospital was based in administering painkillers until nearly leaving her unconscious, with the aggravating circumstance that knowing that the most painful pain crisis were produced in the morning, her medication was not prepared, making her suffer unnecessarily… In total she was admitted for 9 days in the University Hospital San Cecilio de Granada. Her neurologist who has been treating her for a long time, passed in front of the door of her room at least twice, without even taking the interest in coming in and talking to her, knowing perfectly the situation that she daily encountered, as when she was admitted. Our situation was hopeless in this University Hospital San Cecilio de Granada (In the south of Spain), as nobody offered us an alternative or hope ahead of letting the pain disappear by itself. Until I found this Association of Patients with Neuropathic Pain (AEPA-ATM). Since the first day, in AEPA ATM their aptitude to help and offer solutions was immediate. We received all kinds of advice. We had been in the University Hospital of Granada for several days and we hadn’t been given any type of information, and in a telephone call to the Association they had given us all the steps to follow so that my mother would be intervened. I want to highlight that my mother was admitted in Granada, and the different consults recommended by the Association were in Madrid. It’s important to learn the situation of help that we received, because whilst my mother was admitted in Granada I had to go to Madrid in the afternoon to a consult with the recommended neurologist by AEPA ATM, and when I left that Doctor with the recommendation of a surgical intervention. At 7.00pm. I was with other Doctor in other hospital in Madrid with a possible solution for the my mother´s specific case. From there, I went with my Mother’s surgical tests in my hand to a Neurosurgeon that was recommended by AEPA ATM. They gave me a direct and urgent appointment with the Neurosurgeon, who met me the same day at 7 o’clock in the afternoon in the end of this week. It’s important to highlight all of this so that the level of help received is understood, because what they did for my mother in long time, the Association took 2 days to fix all. Both professionals were chosen by the association exclusively for my mother case. Just in one day, I had the right diagnostic and the better treatment for my mother. My mother had a surgical intervention finally in Madrid and it was all a success. This whole story happened in a week. AEPA ATM gave us our life and happiness to our family and there are no words in this world to gratify the love, attention and all the advice received by our side from the first day. Really, thank you for everything. We were a family broken with pain and hopelessness and thanks to you we are now happy again.
Carlos, Dolores Alba´s son. Worker. Granada (Spain). 16th of June, 2016
- It all started in 2007, with this problem. After an operation of several impacted teeth and the placing of an orthodontic. When the pain appeared I was referred by my GP to a neurosurgeon so that he would diagnose my pain. I went from doctor to doctor and all of them renowned. I was diagnosed with Atypical Trigeminal Neuralgia. Finally, they prescribed me with a Micro Vascular Decompression (MVD).An operation with a success rate of approximately 30% in my case. From 2008 to 2016, I was in the hands of the best neurosurgeons in Valencia. I tried all type of medication with bigger and smaller success rates. I have come to having 4 pills every six hours. I had 24 pills a day! In the end of 2015, the neurologist told me that the conservative treatment had finished and I needed a surgical intervention. Looking for a second opinion, I came into contact with another prestigious neurosurgeon that performed a CAT scan on the affected part and he verified the same diagnosis as the neurologist and the neurologist team had been treating for: Atypical Trigeminal Neuralgia. The three neurosurgeons that have inspected me have insisted in the small success rate. Even the last neurosurgeon told me that there was a chance in the operation of Atypical Neuralgia that after 4 or 5 years the patient would relapse and nobody would know why.
Against this background, with the desperation of the pain I tried to locate an opinion which would and could give me faith. Through the Internet I started to inform myself about my illness, diagnosis, specialized doctors and I located the Association of Patients with Neuropathic Pain Trigeminal Neuralgia and Temporomandibular Pathology (AEPA ATM). Without thinking twice, I contacted them. I started a series of tests for my personal case, that I had never experienced. After the tests, the doctors from AEPA ATM have led me to came together into the fact that I should avoid that surgery (DMV). They agreed on the fact that most likely my condition had a wrong diagnosis (The word atypical came into my mind, I had no idea where my pain came from) and a glance of hope stopped the 10 years of pain I had had. The operation according to AEPA ATM´s experts wasn’t indicated. Right now, I am hopeful. I found new alternatives.
Cristina Fuentes, Currently I can´t work although I worked for many years for El Corte Ingles in Valencia, 12th of May, 2016
- My name is Carlos Galindo, I’m 54 years old and I’m a teacher. In the spring of 2015, I was diagnosed with trigeminal neuralgia which made both my family and me suffer a lot. Thanks to AEPA ATM, we have satisfactorily solved the pain so far and hopefully extinguished it forever. In late March 2015, I began to feel painful lashes on the left side of my face. As I had a cold, I thought it was the early stages of sinusitis but in the x-ray the emergency physician made me do, the sinuses looked clean. Although I was treated with antibiotics for 1 week, they did not solve the pain.
My Social Security neurologist diagnosed me with Trigeminal Neuralgia and prescribed me with doses of TEGRETOL with 1-2-3 increasing pills every 7 days. I was also prescribed with an MRI which I had on the 7th April and didn’t reveal any abnormal results. At this time, in early April, I searched the Internet and found AEPA ATM.
From the first moment, I got support and advice from them; they told me the medical tests which were suitable and necessary for me in order to rule out possible causes for my pain, to be able to have a conclusive diagnosis which explained my facial pain. I spoke to them regularly to be able to monitor my disease and my tests. A few days later I went to the emergency room for pain medication because the pain increased. I was prescribed with NOLOTIL and PARACETAMOL every 4 hours. The painkillers didn’t reduce my pain and at nights I couldn’t sleep through the pain, so I ended up using NOCTAMID 2mg.When I started my third week on TEGRETOL, I started to have a rash on my face, neck and chest.
I consulted with my old neurologist and he gave me a change in treatment, switching me to LYRICA 25 and to the painkiller TRAMADOL 25 1cp every 8 hours. These drugs made my rash sprout again and didn’t reduce my pain.The pain was increasing every day -even with these medications prescribed by my neurologist-. The pain gave me lashes from the upper gums to the top of the forehead on the left side of the face. A little bit of facial movement, getting my lips wet or moving them, talking, touching my face, moving my eyebrows or the left side of my nose triggered a sparkling sense that grew up to create severe pain which lasted up to 10 seconds. Acupuncture didn’t work either.The pain I was suffering was suffering both my personal and professional life. As a teacher my daily work was becoming harder and harder, resulting in me taking a medical leave in early May. Finally, to treat pain, I decided to use opiates but they produced nausea and dizziness so I gave up on them. In June 2015, my private insurance maxillofacial –who was recommended by AEPA ATM- ruled out any jaw problems and gave me a cortisone and lidocaine infiltration directly into my cheekbone from inside the lip and for the first time, my pain was reduced by 75%.For two consecutive weeks, we repeated infiltrations reaching a situation of very significant reduction in pain.At the same time, the Association sent me to another Neurologist, who finally diagnosed me with SUNCT (Short-lasting Unilateral Neuralgiform headache attacks with Conjunctival injection and Tearing). She prescribed me with a different treatment.
In mid-July 2015, I stopped having pain remains whatsoever. I continued with the treatment, reducing the doses until early October.Up until now, I have not seen any episodes of facial pain.I have found that for the treatment of trigeminal neuralgia, doctors who aren’t specialists in them don’t help to effectively treat the condition whilst the patients are consumed in despair and pain. Many thanks to AEPA ATM who accompanied me in these moments of despair and pain and gave me the best specialists in the pathology. I can hereby say that my life has returned to what it was before the beginning of spring.Thank you.
Carlos Galindo. Teacher. 54 years old. Madrid, January 2016.
- Last September 2015, the Association assigned us to the case of my mother, who already had all the tests, and already had a diagnosis, to Doctor Salvador. My mother, who is called Catalina Vázquez, is affected by Multiple Sclerosis and by classic Trigeminal Neuralgy (TN) as a collateral effect, had him as a medical “Tutor”.Doctor Salvador received us at 10:00 am. He attended to us for 2 hours.
We exposed him my mother’s extensive medical record and gave the doctor a copy of all the reports and medical tests that have been done to her during her life. I can assure you that it’s not easy to assimilate, put in place and clarify such a long history, but Doctor SALVADOR showed at all times a striking interest as well as a great patience and tutor ability when he was clarifying all the questions that the family was asking without a break in between.The Doctor generated great trust between him and us. He explained that in the case of my mother we had to avoid two treatments: the Gamma Knife and the continuous RF on the Gasserian ganglion.
We were struck by his affection, interest and immeasurable generosity towards his time.In fact, during the visit an article I had read on the internet came to my mind. It talked about him. He said “I like professionals who don’t give up and those who don’t abandon their patients.” I assure you that this is already established.In addition, due to the many TN episodes that my mother suffered during the consult, the Doctor gave her a lidocaine solution which was administered nasally to soothe her aches and to guide his assumptions about other possible techniques that only a few specialists know how to perform in Spain.I don’t want to and can’t end this post without mentioning his humane aspect.
No professional would generate the confidence he created on us, nor replace the battered morale of patients with TN, without the exceptional human dimension like the one that he has.We want to finally congratulate you for the allocation of our medical “tutor”- I can truly say that he has created a before and after in the treatment of this disease (TN) – and also on his election as Chairman of the Scientific Committee we sense that finding a professional like him must have been a very difficult task. Fernando Molina. Professional and Son of a patient affected by Multiple Sclerosis and TN. Madrid. 10th of October, 2015.
- Since February 2015 I had started with a neuralgia and had visited several doctors: Neurologist, ENT , Maxillofacial , Dentist . All the professionals were passing me from one place to another and I still had permanent pain. Finally, I found AEPA ATM. A dentist found a possible cause to my pain; I had a tooth and a the rest of the root removed. Subsequently, I spent a few days with pain but gradually itsubsided. I’ve stopped taking the medication because really -TEGRETOL- the side effects were strong and fatal and I drive and I work and they affected these two things. Thanks to the AEPA ATM association for their help and professionalism. When one is alone in this painful road, finding people like them is really important, because “IF YOU ARE MISDIAGNOSED YOUR LIFE CAN BE COMPLETELY RUINED”, Miguel Portero, Commercial Director, Father of two girls , 32 years old, Valencia. 14th of September, 2015.
- “I want to thank again all the organizational structure of AEPA ATM, for all the support and care they have been providing me with, in the course of my illness. I take this opportunity to explain how my process has been in order to get a fairly accurate diagnosis of my condition. When the first painful episodes took place, and when I got through the initial confusion, I began a journey through Social Security, in order to achieve the most accurate diagnosis possible about the source of my ailment. I relied on Social Security because I do not belong to any medical society. In the course of time, the only thing I’ve found, with one exception, has been a complete lack of empathy from various doctors who have treated me and also a lack of transparency, and even a LACK OF CLINICAL VOCATION.
Surely there are great doctors … but unfortunately, they didn’t find my case interesting. My face hurt. Social Security is probably not the problem, but there are very few specialists within Social Security who take an interest by facial pain and have the necessary tools to make a correct diagnosis.Coincidentally, over the Internet, I contacted AEPA ATM, and from the beginning, I have found great willingness to help, as well as affection.
I have been guided by the Association, setting up from the beginning the objective of obtaining a reliable diagnosis, within how complex neurologic pains can be, as we all know. Finally, thanks to everyone and to the clinicians, and after being subjected to various imaging tests, I can say that the origin of my pain is known. I just started another road in life, hoping it’s not too long, with the aim of solving or at least decreasing this ailment as cruel as Trigeminal Neuralgia.I hope that with the help of ATM AEPA and doctors who collaborate with the Association, who, moreover, some of them work in the Social Security- guide me and help me to improve.
You have to know who to turn to. I encourage all people who suffer from facial pain to fully trust the Association and, above all, keep in mind that finding a diagnosis is not easy. And it is essential to have an accurate diagnosis of the cause of the pain because it is essential to address the problem. To achieve this, efforts must not bargained with. And above all, it is essential to remain calm at all times, as well as to remain emotionally stable.
“ José Ramón Ceron, Retired from a Multinational in which he had 7,000 people under his responsibility. 66 years old. Madrid. 12th of September, 2015.
- When I arrived to the Associations homepage, in their website, I called the Association from my bed, feeling shattered and without hope. The pain was immense. I had literally had my face burned with ablative treatments.
I had been treated with anticonvulsants of all types. Finally, they took my case in the Association. I was not a person. I received a message from the Association: “You’re going to improve no matter what” And those words were an encouragement to me. I kept fighting and with a correct diagnosis I can now improve. I’m almost afraid to say it but… I improved. It has not been easy. It’s been a long hard road. I went back to driving. I ask for patience and certainty to Doctors before they burn faces off or use ablative treatments. The cause of facial pain is not always related to the trigeminal. Treat the symptoms; don’t do anything to the person. Do not try, please, just look. Listen and examine the symptoms. Take the time in finding the right diagnosis. Maria José Gómez. Businesswoman, Madrid. 63 years old. July 2015. Patient affected in the 2 branches of Trigeminal Neuralgia. Right now she does not suffer any pain. Update. 12th of November 2017
- “Greetings and thanks to the Association. Finally! After six months of excruciating pain and going from one doctor to another I am now starting to understand things and to have hope and I’m starting to feel better. THANK YOU SO MUCH. It would be advisable that other doctors were linked more with the patient’s suffering and studied internationally and in other languages. To some of the specialists that I have attended to -from which I have left their clinics concerned – I would say: “I’m sorry to suffer one or more conditions that don’t appear in the Spanish books that you’ve read”. But please, don’t hurt my feelings. Don’t make me feel like I’m weird or strange. Don’t deny me the access to diagnostic tests that I have the right to. When doctors give up because they don’t have the answers to your questions and they forget about your case they make you feel as if you were sinking. They make you feel abandoned. Many pathologies which cause facial pain are not in the books of Spanish medicine. But this doesn’t mean that they DON’T exist. New illnesses are discovered each day.
And doctors have to learn about them. Doctors have to have faith in patients and help them, they can’t give up and hurt them emotionally and close all the chances without being humble. I’m still fighting and even though I’m better now I still have a long way to go. Nonita Pérez Peláez. Professor of Literature, affected by neuropathic facial pain and pain of mixed origin. 14th of March 2015.
- “For us, the Association has a very good team because of their professionalism, human goodness and generosity.
After years without a diagnosis and after trying everything and going to every single doctor in every city we didn’t find a diagnosis for my wife who suffered from severe facial pain. Within months, we found a diagnosis with the Doctors of the Association. Thanks to them, in months, we had the correct diagnosis. Now my wife is already diagnosed. She has a treatment. We are grateful to all the professionals working in AEPA ATM. We finally have clinical evidence of the injury that my wife suffers from. Thank you to the professionals for their dedication and efforts”
Agustina Cebrián and José Antonio Pérez. 28th of February 2015.
- “Special thanks to a Doctor who volunteers in the Association: Doctor Gómez, a great professional and a great person. She put us in the right path”. Teresa Romero and Doctora Fermina Romero.
Ophthalmologist. 7th of January 2015.
- “My “hell” began a year and a half ago. The sudden, repetitive and disabling pains also came with wrong diagnoses from the different neurologists that I attended to on my own. Every single one gave me lots of medications that did not work and made me fell into despair. When I contacted the Association and they listened to my case, I found a little bit of hope. I found someone who knew how to lead the way, listened to me and cheered me up everyday”.
Manuel J. Barreiro Rigau, civil servant, Vigo, Galicia, 25th of October, 2014.
- “For 10 months, I suffered from very severe pains that were accompanied by other unpleasant and disabling symptoms. I went to so many doctors… They never devoted more than 15 minutes to me, neither in Public Health nor in Private Health. They told me that they didn’t know what was wrong with me, they prescribed me medicines that made me even worse or they suggested me to go to a Psychiatrist… On the internet I found the AEPA ATM Association. When I contacted them the thing that I liked the most was that they asked for a thorough medical report and all the tests that I had been through as a condition to examine my case.This is an excellent idea, especially because all the cases that come to this Association are very complicated. When the medical record is extensive, it is better to have all the information written down so doctors can review the cases as many times as they need to. I think that this is very objective.
I also have to say that I felt that the person who attended me on the phone really cared about what I was telling her. Not only that but also my case interested her. She was interested in my case and she cared about me. She understood how bad I felt and what I was going through. I never felt judged. For the first time in many months, someone believed me and thought that what I was saying was true. After analyzing my case, AEPA ATM accepted my case. I was advised to have a few clinical tests through my insurance. I submitted these new test results to the Association. They referred me to Dr. Sánchez Del Río. It was a success. Their professionalism, quality and human involvement (she got Dra. Kurtis Urra also involved), has made me feel – with the proper medication – like this whole year has been a bad dream. I feel like I can return back to my life. Thank you.”
Miriam Iribas Marzal, Teacher, Zaragoza, 12nd of October, 2014.
- “AEPA ATM appeared at a crucial time in my life. I was exhausted by pain and frustrated by misunderstanding. People didn’t understand me. From the first contact I had with them, I felt my pain was shared and treated by the best professionals. I want to thank them for their dedication and human quality”. Maria Jesús Jiménez, Engineer, Madrid, 43 years old. 14th of July, 2014.
- “I have had facial neuralgia for nearly four years. I have been to different specialists without finding a solution to my problem. A few months ago I was lucky to find the Patients Association AEPA ATM. From the Association they have given me a protocol of tests to rule out a series of possible diseases that can provoke facial pain. None of the Doctors I went to prescribed me these tests. In this moment I have a diagnosis. This is helping me to not only reduce my facial pain but also to feel emotionally better. My anxiety status has gone away. With these words, I want to thank all of the specialists that take part in the Association, I want to thank them for the time and work they have dedicated on me. They have made my getting better a reality”.
Araceli Campo Delgado, Teacher, Madrid, 68 years old. 10th of June, 2014.
- “I have been suffering sharp facial pain for a few years. I have worked and cried at the same time. Before knowing the Association two years ago I suffered from an irreversible damage because of surgeries in prestigious public hospitals in Madrid. About a year ago I hit the bottom of my life. My depression was so intense because of the pain that I could not move out of bed. My husband called the Association and I feel that because of him, my family and the support of the Association and their Doctors I want to keep on fighting. I’m still struggling to be okay. But when I go to their physicians I’m calm. I know I’m in good hands. And I see that there are no pictures on the website of the physicians because many of them prefer to remain anonymous. I’m better. But my damage was very extreme because of the ablative surgeries that I had in my nerve. I am a patient with typical neuralgia and other facial pains. I hope that I will get much better. In a year I have improved a lot. But there is still a long road ahead of me and that involves lots of work.. In the Association I have retaken the will to fight and I want to thank them and their physicians for their support”. Maria José Gómez, Businesswoman and owner of several shops, Madrid, 60 years old. 2nd of March, 2014.
- “I think it is absolutely essential that there is an Association for this type of pathologies that change your life horribly in all the possible ways. It is regrettable that until you feel it in your own flesh you do not become aware of the destructiveness this pathology has. My case is still being studied by the Association and clinical staff of the Association. On the other hand, this allows us to see, that in such a superficial and lacking the minimum principles of solidarity society, some people are still displaying unusual altruism, devoting a significant part of their life to help others. I have always been convinced that teamwork is a good way to work, which has been sufficiently demonstrated throughout my professional career, but in this area we all moved because of tangible interests. In the case of involving Patients Associations, who are non-profit, the interests that prevail are far more important, as these not being tangible, what you bring to the people involved are peace and comfort. I would like to join this group of professional volunteers and physicians”.
José Ramón Cerón Garvin, Retired from an industrial company. He had 7,000 people under his responsibility, 66 years old, Madrid. 2nd of March, 2014.
- “I work for the City Council of Madrid and I am a happy woman with a wonderful family. The only thing that stops me from smiling is seeing people suffer for a long time. That is the greatest sorrow of my life. A few months ago, I met the Association. My mother has hope again. Now, four doctors of the Association have diagnosed my mother who is called Teresa. We have a dentist in Leon and Valladolid. We have an immunologist and researcher of neuropathic pain. All provided by the Association. They are all physicians who are fighting for my mother. In the Association and in the physicians that volunteer for the Association I found all the understanding that I have not found in the biggest Hospitals of Madrid. I have fought against walls. And now I have a road with possibilities. I feel how they hold our hands”.
Carmen González González. Officer in Madrid. Daughter of Teresa González Becares, patient. 20th of February, 2014.
- “I hold several bachelor degrees and for the last 5 years I have been unable to work because I have been having a strong facial pain that doesn’t let me live, concentrate and interact. Before knowing the Association I was treated by several doctors who defined themselves as the leading experts in Craniomandibular Dysfunction in Spain. I have traveled all over Spain. I have been treated in the Canary Islands and other regions before meeting the Association. After certain surgeries I have spent 6 months in bed. They have not helped me at all. The existence of an Association like AEPA ATM is very useful and necessary. I have been searching for a solution for five years to my pain and, thanks to the association, I found support, professionalism and confidence that will fight with me in this battle. In just 3 months I have clarified my diagnosis more than I had clarified it during the five years spent in countless medical visits, with a huge economic cost. I think that because of the Association, now I’m on the right track. It was a shame to not have found it much earlier, but I did not know what my pain was called. Now I know that I suffer from a disk displacement that produces sharp facial pain on me”.
Raquel Dema Espada, Psychologist. 35 years old, Málaga and Madrid. 22nd of February, 2014.
- “As a physician and a patient affected by NT, I’m happy that there is an Association with Patients fighting for all the people who suffer from Trigeminal Neuralgia. It strikes me that up to 40% of cases are misdiagnosed (this is revealed in the Association.) I met this entity after having a Microvascular Decompression surgery. Even with this type of surgery I suffered from facial stabbing pain. I went to the Association desperately. With pain and without a life. Those who are suffering from this disease are going through a really bad phase, and there is no place to go where they give us hope. It’s not just physical pain. Psychologically and emotionally I felt completely swamped. And there is no one to help you there. You only have the support of your family, but when, as in my case, you see them suffer and feel nearly as bad as you, you end up not wanting to say anything to anyone. You create a shell. I spent five weeks locked up at home, practically without seeing or talking to anyone and suffering continuous electrical activity. I was having a panic attack and I had one only desire: to die. Suddenly, the Association appeared, and I went there. Everything changed. After the treatment it was decided for my case and the multiple diagnostic tests that I had to have under the suggestion of AEPA ATM, I can say with fear, that I’m much better. I’m almost afraid to speak… After treatment and allocation of two tutors I know they are working on my case and I still have a long way to go. For now, the stabbing pain has ended. AEPA ATM team is working on the correct diagnosis. That is the key to improvement”.
Gema Ostos, Orthodontist, NT affected patient, Córdoba. October 2013.
- “I have had this disease for three years, which has completely changed my life. Last year I contacted the Association and I found support and people who understood me. Since that day they have done everything possible to help, advice and encourage me to keep fighting against the disease. They help patients, but they also help our families and our partners, who go through this pain with us every day too… It is important that we fight together. Neuropathic pain is a problem which is very difficult to solve. We all have to pull so that, little by little, people research and find a solution that helps us cope with our illness which is not a well known one at all“.
Marta González Hernández, 39 years old, Telecommunications Engineer. December 2012.
- “For me, finding the Association meant getting back the hope I had lost. I have been suffering this pain for fourteen years. I work and I am a mother. This Association has given me the chance to find someone who understands the suffering involved in living with pain, being unable to eat, and sometimes not being able to cry because of the pain. It meant being supported after having some very bad experiences with professionals. Health professionals have refused to treat me because I cannot keep my mouth open for an hour. For example, some dentists have come to say “We will not waste our time with a problematic patient like you.” Clearly the professionals I went to were just interested in the money. And they call themselves dentists… they just have the title… nothing else. Finding this Association has meant finding humanity and understanding. As this condition is so “unknown” for some, the disease generates a tremendous anguish and anxiety to people who suffer this illness. The association has been my savior in a time I did not see a solution. The word is hope to try to get better. I no longer had hope. And, of course, to know that you have someone to turn to when you are suffering that horrible kind of pain and they provide a range of specialists and dentists working with the Association. You have the possibility to choose”.
Elena Guillén Izco, 39 years old, Administrative, Pamplona. November, 2012.
- “I was going to have two trigeminal surgeries because l suffered from facial pain on both sides. I canceled the surgery because of the diagnosis doctors that collaborate with the Association gave me. I suffer a dysfunction of both TMJs. Thank you for your help. I was very ill and, at least, I see that you understand what is happening to me and you want to help me. I’ll never have enough words to thank you”.
Elena Sánchez Hernández, Toledo, 35 years old. December 2011.
- “For me the association is, as a patient, my salvation, like an oasis of hope; as a doctor, I admire them, for their teamwork and professionalism, and as a person, they provide a very personal treatment, very attentive and at the same time very supportive and caring”.
Cristina Armero, Physician, 25 years old, Barcelona. November, 2008.
- “To me, the Association is a place where they regularly follow the evolution of my TMJ problem and they help me with their experience and advice”. Gilberto Llínas, Medical teacher, 45 years old, Alicante. October, 2008.
- “I was completely lost. I went from one oral and maxillofacial doctor to another. I went to many places. I was really traumatized by my pain. Thanks to the association I came out of the hole I was in and I started to go to the right doctors. I feel like they understand me”. Beatriz Saco, Lawyer, Madrid. February 2009.
- “The Association has brought me good support because of their humanitarian and guidance nature to a little-known and misunderstood disease”. Juan José Molina, 36 years old, IT specialist, Madrid. December 2007.
- “The Association has given me support; it was a door that opened when I no longer knew where to go”. Pilar Ballester, Government Employee, 51 years old, Madrid. October, 2007.
- “To me, the Association has brought understanding, support, and has brought back the willingness to fight that many insensitive “professionals” made me lose”. Tatiana Castaño, Philologist and translator, 27 years old, Toledo. September 2007.
- “To me, the Association is my benchmark. Thanks to it I can count on good specialists both from a medical point of view as from a human point of view. It’s also a place where I can talk about my illness from different perspectives. I have found friends who have selflessly helped me in a way that they themselves can’t possibly imagine”. Mari Carmen Caseda, Teacher, 37 years old, Zaragoza. December, 2008.
- “To me, the Association has been a breath of hope and peace when everything seemed to be lost”. Almudena Vilchez, Customer, 25 years old, Cádiz. 2008
- “To me, the Association is being very supportive and it is giving me information about my disease”. Manuel Menea, Industry Sector, 43 years old, Madrid. 2008.
- “The dedication, love and interest that you give us is admirable… you help people whose lives are full of intense pain, misunderstanding from people and abuse by us who profit at the expense of the suffering of others, regain hope and joy. Thank you”. María José Caballero. Physician. 32 years old. Málaga. 2007.
- “To me, the association has meant a light and a hope for the future, a great support. New therapies are being researched and they provide us with information on the latest developments”. Alicia Blanco, Officer of the Ministry of Interior, 50 years old, NT patient. Madrid.
- “The association has been my salvation and a place where I have met wonderful people¨. Montse Izquierdo, Secretary, 50 years old, Patient with TN in branch 1 as a consequence of a surgery. Madrid.