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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