We Don't Play Doctor - But We DO Have a Role

by Neil Myers

Recently I had a rather heated disagreement with a physician who not only did not wish to assist the efforts of the Schwannoma Survivors & Schwannoma Fighters page - and the physician implied that we were attempting to practice medicine "by email" - and that was "dangerous."  Now it is quite clear that there are some physicians who, one might say, are of an old school variety.  Their considerations are limited only to the clinical settings in which traditional medicine has been practiced for ages - and they believe that the only people capable of understanding what they do are other doctors.  To an degree this is, of course, correct.  But my mind has long been fixed on the people who fall right through the middle after being diagnosed with a Schwannoma.  They have the clinical meeting with their doctor - they learn the particular details of their tumor and their situation.  This experience is often a dizzying and very stressful one.  Then when they go home and search online - at least before the SS and SF page was created, people found that they had only what details they could glean from their doctor...and online there were only a handful of scattered sources; often comprising dense, hard to understand medical papers.  Confusion and stress often would take over in the days after diagnosis.  So there was a need for an easy to understand information source.

First of all, it may do well to state what the goals of the SS and SF page have always been - and those goals are to publish as much accessible, easy to understand information about Schwannomas as possible.  The articles we publish on our blog are not meant to be dense - they are meant to be readable and within the reach of almost anyone who has been diagnosed with Schwannoma.  And these articles are meant, in all cases - to be based on conclusions supported by conventional medical science.  Keeping our ties close to accepted medical science is the only way that I have felt that we could deliver helpful solutions and information to people who really need it.  (And I vow that I will correct or modify any article that requires it - should better information become available)

The other part of our commitment was to tell our personal stories by way of informal, first person accounts and case studies.  We have taken this course in the belief that when people read stories of others who have been through something like what they have - there is a great deal of solace and relief to be found in it - a sometimes immeasurable x factor which is emotional relief.  You read something and you think "Ah!  I'm not alone..."  These first person stories from survivors are not the kind of cold, hard clinical data that is the domain of most of medical science.  But they speak to the experiences of people who are going through this process - they humanize the process and allow people to better understand both the physical and mental stressors.  Illness of any kind has a mental and emotional component - and we can gain great insights from people telling their stories.

And as I have worked on this page I have sought out, time and time again to bring in what I would call the "expert witnesses" to our situation - namely, the neurosurgeons who are on the frontline of battling Schwannomas and Schwannomatosis.  As I have said before, it is because there is a lot of misinformation out there on the internet that we need the kind of solid information that only trained and experienced neurosurgeons can provide.  That is why we speak with doctors as often as we can.  Our medical science informed approach is why doctors from such esteemed institutions such as Columbia University, Stanford Medicine, Vanderbilt University, Johns Hopkins, and USC Keck - among others, have offered their priceless assistance.  We are so deeply grateful for doctors who embrace the new information mediums in order to help more people than ever before.  This is the future - and we must come to grips with it.

And let me be clear about this; I bring seek to bring doctors on board ( and I have a neurosurgeon advising me personally on medical issues that are far above my head ) because I have no pretensions of playing doctor.  I am, by profession, a successful artist!  But I have embraced my role of trying to assist and guide people who are on this often brutal schwannoma journey.  And when I founded the SS and SF page in late 2012, no page like it existed.  Now the Facebook group has over 1,400 people from around the world.  This morning when I checked the number of visits to our blog, it topped 55,400.  So the one takeaway is that something like our page was needed.  Something was needed, between the cold clinical realities of the hospital - and the loneliness of searching the net in vain, and finding only dense - sometimes hard to understand medical literature on Schwannomas.  There was a gap where a simple, easy to understand information source was needed.  We have attempted to fill that gap.  We do not attempt to replace the verdicts of a trained physician.  In fact, at every possible chance we bring in trained physicians so that they can state the case as they know it - thus, hopefully, getting the most solid information out there as we can.

When I have talked about myself, I refer to myself as a "patient's advocate."  I myself had a schwannoma in my thoracic spine, and I took away a great deal from that experience.  And for four solid years I have been reading the cases and pleas of those who have been diagnosed with Schwannomas and are struggling to find out the best course of action.  A million times I have said things such as "I am not myself an M.D." or "...maybe you want to ask your doctor about..." or " A neurosurgeon told me...".  I have tried at all points to be measured and extremely careful in what I said to others.  I have submitted any comment of mine to revision and correction.  And I make it a point never to speak beyond my own certain knowledge - or to contact my neurosurgical advisor on urgent medical issues that are simply beyond my comprehension.  In short, I have always tried to understand the limits of my own knowledge on Schwannomas - but at the same time, I don't hesitate to assist people if I feel they should explore a certain course of action that might lead them to a better outcome - and one which is supported by medical science.  And - last and most importantly of all, I have often said that if any advice of mine is in contradiction to the advice of your doctor - defer always to you doctor for all major medical decisions.  He or she is the person always in the best possible position to understand your medical needs.

In fact, I remember the two main instances where I contradicted a doctor.  (Two instances in four years - and replies to untold hundreds of direct messages)  One was a case where a young man was being told that after his spinal cord schwannoma was removed he would be pain free.  This was an overreaching claim - most people who have spinal schwannomas successfully removed will experience a significant, and sometimes almost complete reduction in pain.  But to say from the start "You will be pain free" is not wise.  Many of us are not completely pain free, even after total tumor removal.  Two other doctors confirmed this when I ran it by them.  One told me "A doctor should never say that about a Schwannoma..."  (i.e. that removal would guarantee a person would be 'pain free' )  The other case where I contradicted a physician was when a doctor told a lady who had a known schwannoma that "Schwannomas do not cause pain."  This is just plain false - and though a rare few people can have a schwannoma and be asymptomatic - it is very well known that Schwannomas can be quite painful.  I don't assume malice on the part of the physician who told the lady this - but only that he may not have seen enough Schwannomas in his career to know that they can be extremely painful.

It goes without saying that the neurobiology of tumors is extremely complicated.  It goes without saying that neurosurgeons are very highly trained, and very remarkable individuals who carry people's lives in their hands.  On the molecular and biological level, life is so dazzling and complicated that it can, in all its guises, leave us in awe.

But I am stuck with one predominant idea - and that is this; just because something is complicated and hard to explain - it doesn't mean we can't say anything about it at all.  There most certainly is a role for support groups and information gathering efforts.  In the early days of the SS and SF page, I said to people that I only intended that this page be a stopover on the journey - perhaps one spot where you can linger, read some articles, and get some helpful information.  We have never pretended to be doctors - we are patients and advocates for patients who are being advised by doctors.  And as support groups go, I feel that is the best possible scenario.  Clearly, the doctors who have so graciously assisted us have done so because of my pledge to them that the SS and SF page would only throw its support behind accepted medical science - and that is a commitment we maintain.

Most of all, I do this because it has been made clear to me that our FB page and blog bring great relief to stressed out people who need to talk to others who are traveling in the same boat as themselves.  And in our boat, we mean to set our course on the advice and wisdom of doctors who have assisted us, with all their years of expert training and experience.  That is the only way to make a safe trip - and the only possible way to come ashore on the other side...safely.  We give our sincerest thanks to those wonderful doctors who have helped us through this painful and confusing journey.

Thanks my friends.  For my part, I do this for all of you... :)

Neil

Una introducción a los Schwannomas - Algunos datos básicos sobre los Schwannomas para aquellos que recién han sido diagnosticados

 Trabajando con el grupo "Schwannomas Survivors and Schwannoma Fighters” (Sobrevivientes y luchadores de Schwannomas), en multitud de ocasiones me he visto respondiendo varios mensajes, sobre todo con la intención de contestar las preguntas básicas acerca de los Schwannomas especialmente para las personas que recientemente han sido diagnosticadas. Algunas de las preguntas y respuestas son a menudo muy similares, así que pensé que podría ser una muy buena idea y útil, simplemente poner algunos de los conocimientos básicos sobre Schwannomas - como una especie de guía de introducción para una persona que no sabe nada acerca de los Schwannomas y necesita una ayuda para comenzar a entenderlos -.  Así que aquí están algunas preguntas con sus respuestas. ¡Lo básico que puedo compartir para ayudar a los recién diagnosticados! - Neil           

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1) ¿Qué es un Schwannoma?

Un Schwannoma es un tumor de vaina nerviosa que se compone de células de Schwann. Se sabe que estas células, en casos raros, crecen de manera anormal y causan los tumores que conocemos como Schwannomas.

2) ¿Cuáles son los síntomas de un Schwannoma?

Como no soy médico sino que soy un sobreviviente - y alguien que trabaja con sobrevivientes - puedo compartir con ustedes que los síntomas más comunes que escucho acerca de este padecimiento son: un dolor intenso, adormecimiento, pérdida de la sensibilidad del nervio y en ocasiones extrema debilidad en las áreas del cuerpo afectadas por el Schwannoma. La gente reporta choques nerviosos y como sensaciones de hormigueo. (Tuve todos estos síntomas mientras estaba sufriendo por un Schwannoma).

3) ¿Son los Schwannomas benignos o malignos?

Los neurocirujanos me han dicho que la gran mayoría de los Schwannomas son benignos, sin embargo cabe destacar que pueden causar estragos en la vida de una persona. También la mayoría de ellos son por lo general tumores singulares y no tumores múltiples. Aunque la malignidad es rara, la naturaleza exacta del tumor generalmente se confirma mediante una biopsia que se lleva a cabo después de extirpar el tumor parcial o totalmente mediante cirugía. (En algunos casos  cuando se accede al tumor es más fácil, una biopsia se puede realizar antes de la cirugía para determinar la naturaleza exacta del tumor.)

4) ¿Puede un Schwannoma convertirse en cáncer?

En la gran mayoría de casos de cáncer y Schwannoma, no tienen caminos entrecruzados. Un neurocirujano me confirmó que normalmente sólo aquellos que presentan la condición de neurofibromatosis tienen un riesgo más alto de convertirse en Schwannomas malignos, cancerosos. Cuando la gente oye la palabra "tumor" tienden a pensar CÁNCER! Los schwannomas son un ente diferente. Obviamente, usted debe consultar con su médico acerca de la naturaleza exacta de su propio tumor, - si se le ha diagnosticado - pero para nuestros propósitos de hablar en términos generales, debería ser suficiente decir que la mutación de los Schwannomas y el cáncer es extremadamente rara. Los médicos con acceso a los aparatos modernos como las imágenes de resonancia magnética, utilizarán todos los medios a su alcance para tratar de determinar con precisión la naturaleza del tumor, asi como las biopsias post operatorias son usualmente las técnicas que se utilizan para saber qué tipo de tumor es.

5) ¿Qué es lo que está pasando si tengo Schwannomas múltiples?

A pesar de ser esta una pregunta que sería mejor contestada por un médico con experiencia en el tratamiento de esta condición, si usted ha sido diagnosticado con Schwannomas múltiples  existe una posibilidad de que usted puede tener la condición llamada Schwannomatosis. Schwannomatosis, en términos generales es una condición genética que predispone a una persona a múltiples Schwannomas que pueden producirse a lo largo de casi cualquier vía nerviosa en el cuerpo - excepto a lo largo de los nervios auditivos -  donde neuromas acústicos / Schwannomas vestibulares a veces crecen. Las pruebas genéticas están disponibles para ayudar a confirmar una Schwannomatosis, sin embargo se me ha explicado que en los casos en que una persona ha tenido múltiples Schwannomas algunos médicos pueden simplemente suponer ese diagnóstico clínico y el tratamiento de esa condición, en consecuencia, si las pruebas genéticas ha tenido lugar o no.

6) ¿En qué parte del cuerpo pueden crecer los Schwannomas?

En pocas palabras, en teoría pueden crecer lo largo de cualquier ruta nerviosa en el cuerpo. Trabajando con sobrevivientes he visto que ésto es cierto, los tratamientos tienen que ser dirigidos hacia las personas de manera diferente según el lugar donde su Schwannoma está, donde se encuentra ubicado, y cómo está afectando al cuerpo.

7) ¿Cuáles son las opciones de tratamiento para un Schwannoma?

La opción de tratamiento más común es la cirugía. Las nuevas opciones de tratamiento como los tratamientos del bisturí cibernético (Cyber  Knife) y los tratamientos mínimamente invasivos se están volviendo más comunes, sin embargo lo que veo del grupo sobrevivientes es que un número significativo de personas todavía optan por la cirugía abierta convencional para eliminar sus Schwannomas. Para tomar la decisión sobre el mejor tratamiento para este padecimiento siempre será con la ayuda de su médico. La estrategia puede ser diferente en función de la ubicación del schwannoma, su tamaño y la medida en que afecta a la calidad de vida de una persona. Los medicamentos son a menudo necesarios para controlar el dolor causado por el tumor, y para tratar la interferencia en el funcionamiento normal del nervio por la presión que hace el tumor sobre este nervio.

8) ¿Puede una persona tener una buena calidad de vida después de la cirugía del Schwannoma?

Sí, por supuesto, de hecho, una persona puede tenerla. Yo, por ejemplo, tengo una mejor calidad de vida sin el dolor extremo del Schwannoma que tenía. Sin embargo, en términos generales, la cirugía en cualquier nervio en cualquier parte del cuerpo es muy arriesgada y siempre habrá alguna posibilidad de pérdida de función o dolor residual resultante de la cirugía, también por la presión del propio Schwannoma que ha expuesto al nervio afectado. Una persona tiene que sopesar las posibilidades de la cirugía en consulta con su médico. Muchas de las personas en el grupo de Sobrevivientes de Schwannoma aún mantiene el dolor residual y algunos problemas incluso después de la cirugía del Schwannoma. Le he manifestado a la gente que estoy a un 85% tan bien como yo estaba en mis mejores días antes de ser afectado por el Schwannoma. Me parece aceptable - en mi opinión -. No, no todas las historias de extracción de tumor son felices,  pero hay razones para ser optimistas debido al gran número de extracciones a través de la cirugía que han sido exitosas, y las personas que han tenido una buena recuperación de su calidad de vida después de la cirugía.

Translation by Katia Orellana-Helin

Case Study #24, an Vicki Rushby and her Experience with Pre-Sacral Schwannoma

Hello all!  We are pleased to bring you our 24th Schwannoma Case Study - this one the story our friend Vicki Rushby and her experience with pre-sacral Schwannoma.  This was one kind of Schwannoma we had not previously had a case study for, and so we appreciate our friend Vicki who volunteered to tell a bit of her story to us so that others with this kind of Schwannoma can learn from it.  We wish her the best in her continued recovery - and we hope this case study is of assistance to those who need it! - Neil 

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1)  How old were you at the time of your diagnosis?

Diagnosed last June at 57 years old.

2)  Do you have any history of Schwannomas in your family?

No family history that we know of.

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

I had a 14cm pre sacral schwannoma attached also to my bowel,bladder and nerves in the top of my right leg.

I had a quite a few symptoms one particular one was I couldnt lay on my left side or if I layed on my back I would get incredible pain in my rib area.

Also I was constantly getting bad reflux and chest pain but if I had ECGs or bloods for cardiac enzymes they would all be normal (all stopped after surgery).

If I tried to lift my lower body weight onto, for example, a boat platform I just couldnt seem to get that part of my body up like it was too heavy.

I would have sudden severe nausea for a long time then eventually be sick and then feel much better.  My appetite was all over the place such as be hungry and start to eat then after a mouthful just couldnt eat anymore.  Sudden urgency to use my bowel or bladder.  Aching in my tail bone when resting.

Not long before I was diagnosed I lost another 6kgs after loosing 10 kgs for the year before and became incontinent during the night of faeces in my sleep and have no bowel control during the morning and getting drop foot and nearly falling over.

4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

After much discussion and planning by my colorectal surgeon and after a long surgery and recovery he removed the schwannoma completely in late July 2015 through the abdomen but left part of the sac of the tumor to preserve the nerves in the leg, bladder, and bowel.

Otherwise it was not looking good post surgery with a very big big chance I would have a permanent catheter,colostomy and drop foot.  I was very very happy with the results from surgery and feel it was very successful.

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

Definitely follow the list "What to ask the Doctor?" and write down questions because you get into the Doctor and forget important things. and there is so much going through your head at the time.

What to expect after surgery such as recovery time.

Whether you need follow up scans yearly.

Who to speak too if you dont have a designated person following you up pre and post surgery if you have any problems or questions.

Ask the Doctor to explain in terms you understand if they dont keep asking.

 6)   Can you describe what the recovery process was like for you – if you feel you  have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

Recovery was good and felt great for a change.

Try and keep as positive as you can including thinking that you can do this surgery and it will be better.

Pain was manageable as I stuck to the allowed doses for the first couple of weeks then I was finding I needed pain management first thing in the morning  and the evening for a couple more weeks but changed to panadol for that which worked well.

It took about 6 months for the bowel to settle from surgery.

The physio got me up the very next morning walking after surgery the afternoon before and although it hurt I tried to straighten as much as possible and kept the walking up gradually increasing the distance when I was ready.

 7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

Something I can do a lot better is lifting my lower body weight to get up onto things like the bed to get things off ther top of the cupboard, ladders or several steps, boats etc and not dragging my lower body around.

Much better control of my bowel and bladder.

But I do find if you dont pace yourself you can get very tired and it takes a little bit to pick up but as it was a major surgery I give myself 12 months at least to hopefully completely bounce back.

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If you have a similar or same kind of Schwannoma and you would like to speak to Vicki by email, her email address is: vianneru@gmail.com

神经鞘瘤简介 - 给被新确诊的神经鞘瘤患者的基本知识

神经鞘瘤简介 - 给被新确诊的神经鞘瘤患者的基本知识 因为我和神经鞘瘤挑战者和幸存者团体一起合作，所以要经常回复一些短信来试着回答那些被最新诊断为神经鞘瘤的患者提出的问题。不同的患者经常提出类似的问题，所以我想给那些刚刚接触神经鞘瘤并对其一无所知的患者列出一些基本知识应该是一个好主意。下面的几个基本问答分享给新近被诊断为神经鞘瘤的患者： 1）什么是神经鞘瘤？ 神经鞘瘤（也被直译成许旺细胞瘤）是神经鞘（许旺Schwann)细胞组成的神经周围的肿瘤。神经鞘细胞在很少情况下非正常生长而导致生成肿瘤。这种肿瘤被称为神经鞘瘤。 2）神经鞘瘤的症状都有哪些？ 虽然是一位非医务人士，只因自己曾是神经鞘瘤患者并且和其他同类患者一起作战过疾病，我可以告诉大家最常见的症状是：剧痛伴随麻木，神经感觉的丧失，有时会在受影响的身体部位感觉虚弱。有些人汇报过有神经冲击、被针扎的刺痛感觉。（我在患病期间曾经感受过以上症状） 3）神经鞘瘤是良性的还是恶性的？ 一位神经科手术师告诉我绝大多数神经鞘瘤是良性的。但是还是应该强调即使是良性的它还是会给患者的生活带来灾难性的改变。通常绝大多数此类肿瘤是单个存在的。虽然很少恶性的，对此类肿瘤的诊断还是需要在手术取出部分或全部肿瘤之后通过病理检查。（有些时候，在不用手术的情况下可以相对容易的取出肿瘤样本来确认肿瘤的性质） 4）神经鞘瘤会演变成癌症吗？ 在绝大多数情况下神经鞘瘤和癌症不相干。一位神经科手术师告诉我只有那些有多发性神经纤维瘤的患者有较高的癌变的可能性。当人们听到肿瘤这俩字，通常联系到癌症。神经鞘瘤是另一种可怕的猛兽。很明显如果你被确诊，对于你的肿瘤的性质你应当咨询你的医生。通常来讲，神经鞘瘤癌变的几率极其小。随着现代数字成像设备（如，磁共振成像机器-MRI）的广泛应用，医生们会用各种设备尽可能来精确的诊断肿瘤的性质。并且通常术后也会对肿瘤做病理检查来进一步确认肿瘤的性质。 5）如果我有多个肿瘤，是怎么回事？ 尽管这是一个应该最好由有治疗这种肿瘤的经验的医生来回答，通常来说，如果你被确诊有多发性神经鞘瘤，则有可能会是神经细胞瘤。除了听觉神经系统，有时会出现听神经瘤之外，神经细胞瘤通常来说是一种遗传基因导致一个人在几乎所有的神经线路上发生神经鞘瘤。可以用基因测试来初步诊断某人是否有发生神经细胞瘤的可能性。 不过在我看来不管是否经过基因测试，一些医生都可能将对患有多发神经鞘瘤的病人确诊为神经细胞瘤，并对其进行相应治疗。 6）神经鞘瘤都有可能在身体的哪个部位生长？ 简单来说，它可能在身体的任何神经线路上生长。自从和其他神经鞘瘤患者一起抗战这个疾病以来看到事实确实如此。对不同位置的神经鞘瘤，根据它的位置和对身体的影响治疗方案也应该是不同的。 7）治疗神经鞘瘤的方案都有哪些？ 最常见的治疗就是手术切除。比较现代一些的治疗包括激光刀治疗和微创手术越来越普遍。不过在我们这个神经鞘瘤挑战者团体里比较常见的治疗还是最普通的手术切除。最适合的治疗方案还是要在你的医生的帮助下决定的-- 它会受肿瘤的位置、大小和其对人的生活的影响的不同而异的。通常需要药物配合来减少肿瘤造成的疼痛以及治疗其对神经的挤压造成的对神经的正常活动的干涉。 8）一个人在神经鞘瘤手术后能过一个质量好的生活吗？ 实际上是可以的。我，作为一个例子，现在的生活质量比术前忍受神经鞘瘤导致的极端痛苦时要好很多。不过，通常来说，在身体上的任何部位的神经上做手术都是有风险的，并且总是有丧失部分神经功能或不能去除全部痛苦的可能性。患者应该在咨询医生时全面衡量手术的弊与利。在神经鞘瘤挑战者团体里好多患者确实在术后还在忍受遗留下来的疼痛和手术导致的一些其它问题。我曾经说过和在没有受神经鞘瘤的痛苦折磨之前的日子相比，手术后最好的日子我是大概85%的术前的健康状态。这对我个人来说是完全可以接受的。当然，不是每个人的手术都有一个满意的结果。但是因为大多数的肿瘤切除手术都是成功的，并且他们手术后的生活的质量也有很好的恢复，所以要对自己的手术也要保持乐观。

Translation by Kris Sres

Cognitive Difficulties ARE Sometimes Mentioned After Acoustic Neuroma / Vestibular Schwannoma Surgery

by Neil Myers & Leanne Haroun

Hi everyone!  As part of running the Schwannoma Survivors & Schwannoma Fighters FB page and blog, I am linked up with various groups on FB that have to deal with different kinds of Schwannomas - and I wanted to bring out into the open a subject that I have heard mentioned several times on sites dealing with Acoustic Neuromas / Vestibular Schwannomas...

To put it quite simply, many people who have had Acoustic Neuromas / Vestibular Schwannomas report some manner of cognitive difficulties after surgery.  I had read this twice on forums, and made a mental note of it so that we might explore the issue more fully at a later date.

Then I googled the question and there were further forums where people discussed having issues like short term memory difficulties, as well as difficulties with concentration, etc.  The anecdotal information was certainly there, so I ran this by Leanne Haroun, our page advisor for AN / VS ( And herself a third year medical school student who had Acoustic Neuroma / Vestibular Schwannoma ) And she said that she could both attest to this, and that this is a known phenomenon that does sometimes present itself after surgery.  She also spoke to one of her med school professors - one who specializes in neuropsychaitry, and he said that any brain injury - such as what is sometimes experienced by those with AN / VS, has the potential to change brain chemistry.  This most commonly happens over the space of a year or two after brain surgery.  When the area of the brain known as the hippocampus is affected - an area which is important for memory formation, then the symptoms people speak of may, in certain cases, be understandable.   Considering that Acoustic Neuromas are known to put pressure on, and sometimes displace, areas of the brain and brain-stem, then that may result in cognitive difficulties such as what people say they have experienced.

Leanne did say that she would continue to look into the issue, as well as keep her eyes open for articles in relevant medical journals that may further examine the subject.

For our purposes, we simply wanted to publish this short blog to essentially offer a bit of comfort and understanding to those who may be suffering cognitive challenges after AN / VS surgery.  To plainly say it, we wanted to let those suffering with these issues know that they are not alone - and that since cognitive difficulties of this sort have been reported, that you can always inquire about neurocognitive testing to hopefully try to get to the bottom of any nagging or persistent cognitive issues that you expereince.

Here is one online site where people spoke about these issues:

http://www.anarchive.org/cognitive.htm

And here is another forum where this was discussed:

https://www.anausa.org/smf/index.php?topic=16044.0

As always, I urge everyone to use caution when reading information on forums that may contain suggestions or ideas that do not come from verified, peer reviewed medical opinions.  However it is pretty clear that the anecdotal information about memory loss and other cognitive issues post AN / VS surgery is there, so it may be of benefit to others to read the experiences of others.

* Note, Leanne and myself may add further links and information on this issue in the future - in order that we might better understand this phenomenon. - Neil

Case Study # 23 , Dani Thomas Shares the Story of Her Paranasal Sinus / Sphenoid Schwannoma

Hi everyone!  Today we are pleased to bring you the 23rd case study - this one detailing the story of our friend Dani Thomas and her Paranasal Sinus / Sphenoid Schwannoma.  Dani was one of the first people I have heard of with this particular kind of Schwannoma - and since this is a very rare kind of Schwannoma, we asked her to do a case study and were delighted that she agreed to tell her story.  We thank Dani sincerely for sharing her experience, and wish her the best of health in her continued recovery - Neil

*Note: Dani would like to possibly connect with someone else who had this kind of Schwannoma.  If you have had this, and would like to speak with her as well - please email neilmyersart@gmail.com ( This is the email for Neil the group coordinator ) and I will connect you with her...
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1) How old were you at the time of your diagnosis?

I was 25 when it was diagnosed as a schwannoma but was aware of the problem from the age of 23.

2) Do you have any history of Schwannomas in your family?

No.

3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?

My schwannoma was located in my left nasal cavity (paranasal sinus/sphenoid schwannoma is the ‘technical’ term). My symptoms developed as the tumour became more apparent.
Firstly I had a constant blocked nose that wouldn’t clear and made me sound nasally. I was used to a nasal drip that had been around for at least 4-5 years prior to diagnosis but I am an atopic person so thought it was related to that. My symptoms worsened when I was 23, with my nose being blocked more so than usual and it needing pressing in order to clear away the mucus. I also started to feel sick a lot and had periods were I was unable to eat. As time went on my nose started to run without provocation and eventually I was getting through a box of tissues in a day- it had even started to bleed. My sickness got worse along with this. I also started to get extreme headaches and was sensitive to light.
Before it was identified as a Schwannoma I had started to get dizzy and even more nauseous than before with periods of fainting and panic attacks. This increased after my diagnosis, although some consultants thought it was related; others said it was stress/worry related. Overall, the main symptoms were nasal drip, nasal blockage and bleeding, fainting and sickness.

4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

Initially a biopsy was preformed endoscopically in order for diagnosis. For the tumour itself I underwent an endoscopic resection of the left nasal which was carried out macroscopically. I had this on 17^th August 2015.  In terms of success: the tumor is gone and my nose feels clearer than it has in a long time. However, I am still experiencing some post-op symptoms such as a nasal drip and also my nose cannot clear itself properly so I have to wash the cavity with a mixture of salt, bicarbonate of soda and sugar - still to clear it and make sure it stays infection free.  I also have headaches still that are normal triggered by pain in my nose which is similar to head rush (best way to explain it).

5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

I think you need to ask how long it will take for you to undergo surgery/ treatment (realistic figure) as mine took a while from diagnosis to operation (1 year total), especially as I was having serious symptoms at this stage.  Leading from that, ask what symptoms are expected and if  you have different ones confirm that they are related so that they can be treated effectively.
I also had 5 consultants in total as I was passed around (NHS system) in order to get someone who knew more about Schwannoma extraction- therefore I think if you have a choice make sure you ask your doctor/surgeon what experience they’ve had with your type of schwannoma.

6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

I think that I am more positive in my recovery now than I was a month after the operation. This is mainly because I expected to be better faster than I was- I think it’s important to know how long a full recovery will take (not just how long it will take to get back to work).  Also, to be patient with your body and not try to do things to fast after the procedure.

7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

Generally yes. I can still do most things although I find talking for long periods harder as my nose blocks up and needs to be cleared. I also find I get headaches easier than before my diagnosis. Otherwise I am able to do everything I did before.  

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