“Physical rehabilitation is fundamental”

Mariano Socolovsky is an Argentinean neurosurgeon who is currently in charge of the neurosurgery of plexus and peripheral nerves sections in the Hospital de Clínicas of Buenos Airesand in FLENI (in English: Foundation against Neurological Diseases of Children), where on May 13and 14 of this year the National Conference of Neurofibromatosis in Children and Adults tookplace, among other institutions. He is member of international associations, author of diverses cientific productions and an outstanding lecturer worldwide. He constantly transmits his commitment and shows that humility and empathy are absolutely possible in such complex environments.

What was your motivation to be a neurosurgeon?

My motivation to be a neurosurgeon arose when I was a medical student. I wanted to do a surgicalspecialty. At first, I was going to do cardio surgery. However, when I got to know the brain, the nervous system and how it interacts with the peripheral nervous system, it fascinated me, and I decided to do neurosurgery. I was in the fourth year of medicine, I did not change anymore, and the truth is that I do not regret it.

How did the idea of conducting the National Conference of NF originate, of which you were one ofthe directors? What is your assessment of this event?

The idea arises because there is a problem still unsolved with a very large number of patients with NF who do not find a professional discussion area where they can interact with other specialists on the issues that affect them. The balance is very positive because the level of medical discussion was excellent, the information circulated freely among all the professionals and allowed us all to inform each one of their specialty and their knowledge on the subject. The result for all those who attended was very promising. I would like to emphasize that there are few centers in the country and in the world that are directly aimed at the specific treatment of NF in its various forms, beingin Argentina, FLENI and the Hospital de Clínicas, are two of those few centers where this problem can be addressed.

Can you tell us about what the lectures were about?

The lectures were based on very diverse topics: from epidemiology, that is, the incidence of tumors in patients with NF, and other alterations, going through genetics and chemotherapy. As it is known, there are some new drugs that are being tested, so we talked about novelties of this type and surgical treatments of these injuries.

Why was it decided that the patient forum was intended for NF2?

NF2 has a lower incidence than NF1, and for many of the patients who suffer from it, there is no forum in which they can participate, which is why we decided to create it. Part of the symposium was based on the NF2.

As a neurosurgeon specialized in plexus and peripheral nerves, how much are you involved in thetreatment of the different NF?

There are tumors in the peripheral nerves, that is, in the nerves that innervate the legs, arms andfacial nerve. Those that are located there are the tumors that are the treatment springs of the peripheral nerve specialist. Then there are the tumors in the spine and in the brain, which are for the general neurosurgeon.

How important is physical rehabilitation after surgeries?

It is fundamental in the final evolution of the patient. We say to the patients that the treatment does not end with surgery, but begins with surgery and then comes rehabilitation, and we have statistical demonstrations published in journals with arbitration of foreign colleagues that demonstrate the importance of rehabilitation in the final evolution of the patients.

Who should be the primary care physician of a patient with NF2, considering that the follow-up isinterdisciplinary?

In general, I would say that it should be followed-up by a clinical doctor, who can be an oncologist,neurologist, generalist, etc. The neurosurgeon must be consulted for specific tumors and the follow-up of each tumor can be performed by each surgeon in the long term, whether or not the patient has been operated on.

Can the characteristic schwannomas of NF2 become malignant?

No, it is extremely uncommon. They are benign tumors, in terms of growth, it is very slow.However, because they are in very sensitive areas, they produce very important symptoms, and for this reason some call them of "malignant behavior".

What are the reasons for choosing to do surgery in the case of benign tumors?

They are operated when they cause an important symptomatology. The surgical strategy in the case of bilateral tumors, when they occur on both sides of the brain, is resection, which can be initiated on one side or the other, according to the symptoms, the volume, the degree of tumor growth and certain characteristics of each of them that must be analyzed separately.

Can deterioration that brain tumors cause in patients with NF2, affect their intellectual abilities too?

Hardly and at a very advanced stage, they could obstruct the circulation of cerebral fluid and affect them. This can be treated by evacuation with a drain and thus recover.  This would be the onlyway of affecting the intellect. For the rest of the symptomatology, although, as is known, it isimportant, it does not affect the intellectual capacity of the patients. However, it does produce deafness, visual problems, balance, etc.

Do you consider it necessary to insist on the fact that NF1 and NF2 are different diseases, or the points they have in common make it possible to understand and explain them?

Even though they are totally different diseases, they share certain things, the first being their genetic origin and that they generate tumors in the nervous system. Taking into account that theyare different, it does not seem wrong to me to study, analyze and compare them together for a better understanding of them.

Are the vestibular schwannoma and the bilateral vestibular schwannoma the same?

It is the same tumor, one is unilateral and the other one is on both sides of the brain, that is why its treatment is more complex and it is more likely to generate neurological damage.

What is your opinion about bevacizumab and other drugs to treat NF2?

It is a drug that generates controversy. On the one hand, the benefits are not so clear as somepeople may suggest, they could be good, but it is not completely proven. On the other hand, it causes side effects, such as hypertension. Like every new drug for a disease that does not yet havea specific medical treatment, it generates high hopes for the patients as well as for their families and doctors, but it is not yet clear that it is as useful as some people want to believe. Doctors have to be very cautious when prescribing it, they have to thoroughly study the case, because the cases in which it might be beneficial are very specific but very few, and they have to be careful with patients’ expectations, because it is not all so positive about the drug. Nevertheless, I am a neurosurgeon and the most informed opinion is that of oncologists. If you ask an oncologist, the answer will be more specific than mine.

Have you recommended to your patients any kind of non-surgical treatment?

Yes, many patients are prescribed conservative treatment. In fact, surgery is more the exception than the rule. Concerning my specialization, only tumors which grow fast, cause motor loss, painor sensitive problems, should be operated. Only the tumors that cause those symptoms areoperated, which are a minimum proportion in relation to the total number of tumors.

Patients tend to be confused with the terms “radiotherapy” and “radiosurgery”. What does eachone mean?

Radiotherapy is the administration of radioactive material with the aim of controlling certaintumors, it is usually used with aggressive or malignant tumors. Whereas radiosurgery is the one-
time administration of high doses of radiotherapy to small and delimited areas of the tumor, and itis usually applied to benign tumors or in metastasis, as opposed radiotherapy.

How do professionals from different countries share their knowledge of NF2?

When doctors assist to conferences abroad, at the different international forums, they discussactions, knowledge, conducts and therapeutic strategies for NF patients. That is the natural placeof discussion for this kind of disease. The symposium at FLENI, with Dr Blanca Diez, is a local example of that.

How can patient groups help in the search for a massive treatment?

Their function is mostly the diffusion of the disease among patients and families, that is a very important help that is done in Argentina and the rest of the world. In relation to the specificquestion of searching for a massive treatment and what patients can do, that is a matter of medicine and investigation rather than of patients. Patients can help to with draw expectations from treatments which might not be so effective, like what I said before about drug treatments.They can encourage or spread the news about those that might be effective, or about reference centers for the treatment of the disease, which are just a few throughout the world.

Is there a learning process for doctors with each case of NF2?

In medicine, there is always a learning process with every patient. In complex cases, such as NF2,the learning process is continuous and it is a big challenge to treat this kind of patient. As a doctor,one has to be aware not only of the new issues, but also of each patient in particular, because we cannot make generalizations with this kind of disease, we cannot offer the same kind of treatment to every patient, but we have to adjust a given treatment to each patient.

Interview and edition: Florencia Sarratea

Translation: Pía Errozarena and Ana Massa

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