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

How Long Before I Feel Better? Views on Recovery from Various Schwannomas

Hello all!  This post is the last in our series in which we attempted to determine what recovery time was like for people who have had various kinds of Schwannomas.  We did break them down into categories - various ones in the different regions of the spine, Acoustic Neuromas, etc.  But since Schwannomas do not fall into neat categories, and for the fact that they can be found along almost any nerve pathway in the body - I felt it was necessary to do a final blog post dealing with all other Schwannomas not mentioned in previous posts.  So this last one will have feedback from people with different kinds of Schwannomas, and I will label the person's comments accordingly so you can know what kind of Schwannoma they were recovering from.  This blog will tie up the end of this series - we hope you find them helpful and useful, and I thank everyone who took their time to share their stories! - Neil
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Answer 1 - Trigeminal Schwannoma

I have a trigeminal schwannoma. I had gamma knife surgery this past march. I am not seeing much benefit at the moment but was reassured that I would see a change by xmas. I feel that the procedure is relatively new and they're not sure of the long term outcomes so have nothing more positive to offer me. Sigh. I will definitely post any significant changes in my condition though. Meanwhile I have constant headaches and facial paraesthesia that are persistent.

Answer 2 - Trigeminal Schwannoma

Trigeminal schwannoma 6cm and brain stem compression 60 percent. 1 yr complete resection. Still with facial pain. Headaches. Tumor site pain, blurry vision, balance issues. However I am lucky to be alive.

Answer 3 -  Sacral Schwannoma

I had a sacral schwannoma removed 12 weeks ago was pretty large 9cm x 9cm still having many issues, right side from tumor sight down butt and leg giving me all kinds of issues,also defacating has been a challenge. Doctor says it is because of pelvic floor muscles, starting to lose faith in that as therapy is doing nothing, and from the type of pain i have i feel its nerve related.

Answer 4 - Presacral Schwannoma

I had a presacral schwannoma 6cm removed almost a year ago.  I still have the pain down my right leg I had before removal was so helpful I would be pain free...

Answer 5 -  Presacral Schwannoma

I had a 15cm presacral schwannoma filling my whole pelvis and affecting the nerves in my right leg and badly affecting my bladder and bowel. It was removed nearly 2 weeks ago and my leg seems to be ok and my bowel and bladder are better.Recovery has been good but have times where I still need a small dose of endone particularly first thing in morning and evening before bed..

Answer 6 -  Esophageal Schwannoma

I had 6cm esophageal schwannoma, was removed along with 1/3 of my esophagus through thoracotomy 3 months +10days ago. Was in hospital for over 2 weeks. Recovery has been smooth, had a feeding tube for a month,no pain with a little discomfort. Now I almost can have normal diet (no spicy food yet). Can't lie down within 2 hrs after meals. Sleep on a big bed wedge pillow... But I can swallow my food like normal people do which I'm really happy about it 

Answer 7 - Olfactory Nerve Schwannoma

I had a 3cm schwannoma removed from my olfactory nerve in Jan. It had grown through the skull and was pressing on both my brain and my eye. I was in the hospital for about 6 days, due to a CSF leak. Went back to work part time 5 weeks later, but it took a good three months before I felt that I had my normal level of energy back. Since they removed the right olfactory nerve, my sense of smell is quite diminished and I find that lots of foods taste very different from what I remember. At my three month check up, my eye was back to its normal shape (and I no longer had the tingling/crunching feelings in the eye socket) and the patch where they repaired the leak looked good. I still have the daily headaches that led to the discovery of the tumor in the first place, but they aren't as bad as they were either before the surgery or for the month or two after surgery. I would be interested in connecting with other people who have had olfactory nerve schwannomas....

Answer 8 - Sciatic Nerve Schwannoma

I don't even know what mine was called apart from it was on the sciatic nerve near my tail bone but I was back at work after 4 weeks. They told me to take 9 months and I wish I had.