The diagnosis…

I guess you could say my journey with a Spinal Cord Lipoma started before I was born. A congenital condition as rare as hen’s teeth. Lipomas can appear anywhere in your body, under your skin, in your arm pit – where’s mine? Oh yeah – in my Spinal Cord! Of all of the Spinal Cord Tumours out there (which in themselves are fairly uncommon), this one seems to be one of the rarest I’m told. Lipomas are mostly benign, composed of fatty tissue and slow growing.

Looking back, did I see the signs? Well yes. Did I know what they were concealing? Absolutely not!

Let’s roll back to 2008, I was pregnant with my first child. Noticeably, I developed what was described to me as “Restless Legs Syndrome”. It drove me to the brink of insanity, I remember at 7 months begging my obstetrician to induce me to relieve the discomfort. But soon, once my beautiful daughter entered the world, the symptoms subsided. It was not until 2010 when I became pregnant again that I sought the recommendations of every practitioner I could. I soon had a mini dispensary of concoctions, remedies and supplements that would see me through the next 9 months and to some extent, it did. My obstetrician, to this day has never encountered, in her entire career, a case like mine.

From then on in neurological deficits slowly surfaced. There were visual disturbances, leg spasms, headaches, back aches, exaggerated reflexes, bladder disturbances, memory probs, imbalance, tingling and numbness in my limbs. For those of you that know anything about Spinal Cord Anatomy will know that the Thoracic Nerves are involved in the functions of organs including the bladder and bowel and the lower limbs.   My tumour is located at the T7-T11 vertebrae. It was the constant dropping of things, and falling down and my legs giving way, that had me thinking something wasn’t quite right… So, whilst these symptoms had been reported to my GP on various visits, it wasn’t until late 2013 that something ‘clicked’ and I was referred to a neurologist. I waited for four months to see the neurologist (on a non-urgent basis), still unaware of what was going on inside my spinal column. A lumbar puncture and four MRIs later – the original hypothesis of MS was abolished and an Intradural Extramedullary Spinal Cord Tumour was diagnosed.  This was now considered urgent.

So, (only a few hours later) off to a neurosurgeon I go.  He also happens to be the Head of Neurosurgery at the hospital’s dedicated neurosurgical unit.   Besides all the usual risks of a long haul surgery, the main risk is permanent paraplegia. His concern in this case is that there is an interpersonal relationship between the lipoma and the spinal cord itself. Which means total removal is unlikely since the lipoma is not a separate entity. The main goal of the surgery is to decompress the spinal cord by hopefully resecting as much of the tumor as possible then grafting the dural layer so that there’s a bit more space.  The lipoma will continue to grow so regular MRI scans and follow up will be a part of my future.   So, faced with surgery resulting in serious risk of permanent paraplegia against the option of no surgery with certain permanent paraplegia, leaves me with not much choice at all.   The interventional neuroradiologists, neurosurgeons and neurophysiologists all agree that surgery is the only option.

I have since met with a neuroanaesthesiologist and neurophysiologist who explained the process of  Intraoperative Neurophysiological Monitoring, which is necessary in this type of surgery .  Needless to say, I am extremely  thankful that I will be fully anaesthetised whilst this occurs.

So, now I wait… My surgery is scheduled for August 13th 2014. It’s been a relatively short symptomatic journey to this point, and no doubt there is a longer journey ahead with rehabilitation and occupational therapy. I remain positive, although I ache and hurt and can’t do some of the things I just took for granted, I feel so fortunate to have such an awesome team behind me. I’m not alone on this journey, and now you’re here with me too and that makes me feel even more fortunate! 🙂 

Here, I share my diagnosis, my surgery and recovery.  Be sure to scroll down to “Older Stories” to go back to the beginning as these pages fill with new posts!

Invisible Disabilities

Hey all,

Not too much to report on this time as I am still awaiting the Electromyography and Nerve Conduction Study by my Neurologist.  Hopefully next I write I will have more of an idea of the permanency of my neuropathy.

All other tests have come back inconclusive, which means the problems from waist down most likely have everything to do with this tumour and related nerve damage.  So, bit of a bummer but dealing with it as best as I can and still out on the lookout for advice from others who are currently serving a similar prognosis.

Onto other news, my Mobility Parking Disability Permit arrived last month, it has made a positive difference to the school run and regular grocery shop so I am grateful and humbled to have this at my disposal on days when I need it.  But it leads me to another topic and this is one of tolerance, not just by me; but also of others.    I never paid too much attention to Disability Parking Permit Holders before, or indeed those that violated the use of Disabled Parking Bays without a permit.  I say adamantly and proudly, that (prior to holding my own permit) I have NEVER been enticed to use a disabled parking bay, not even for a 20 second dash to the post box – never! With the out-of-mind, out-of-sight mentally, I really didn’t pay much attention to people frequenting disabled bays at all – until now…  I am admittedly surprised at the rate of non permit holders using Disabled Parking Bays.  It is ridiculously exploited.   At times, I do have to park elsewhere due to bays being taken by people who were not displaying an Acrod Parking Permit.  I’m not infuriated because I’ve had to park elsewhere, I am infuriated because people think they are above the law or anyone else and have the right to do as they please if it suits them. It infuriates me also, because someone worse off than me; someone with NO use of their legs would also have to be searching for a parking spot elsewhere.

I don’t need the disabled bay every time I go out.. and I do seek out other nearby spaces on occasion in an effort to ‘free up’ the bays for those folk more disadvantaged than myself.. I don’t see this privilege as something I need to take advantage of just “because I can”..  I’d appreciate if people were more aware of this:- I guarantee, you will come across Disabled Bays that have cars parked in them with no permit displayed.  Have a look next time you’re out.  It is an offense to take a photo of the vehicle, it an offense of the Littering Act to leave a kind note, it is not advisable to get into even a polite confrontation with someone who is clearly misusing the bay (as chances are you’ll end up with a detonated foul-mouthed expulsion, coupled by a middle finger..or worse).    Well there, you have it, my gripe that I never thought twice about before!

On the other hand, I’d like to raise awareness about Invisible Disabilities. Because I have one.  It may not look like it to anyone else that feels it is their right to pass judgement on people using disability services.  After all, disability pensions, parking permits, aids and facilities are not handed out by departments on a whim.  You generally have to prove your disability with various medical reports, ongoing assessments and medical opinions.  So, when I am getting in (or out) of my car with my two young children in a Disabled Bay,  the last thing I have a hankering for is a barrage of prosecution from someone who believes they have a superior medical opinion over my neurosurgeon.  Sure, I’ve thanked them for complimenting my ability to conceal my ailments- I’m pretty good at that!

Pain is felt and not seen, chronic fatigue and effects of medication do not always show.  Not everyone with a disability is in a wheelchair, and let me add, those that are certainly don’t need ignorant, selfish, inconsiderate vessels of human beings hoarding their parking spots for convenience’s sake.  It has taught my young children a lot about tolerance and respect for others and for solely this reason there is some light.

Let’s be considerate of people living with disabilities, seen or unseen.  Please visit: http://invisibledisabilities.org/what-is-an-invisible-disability/

 

 

Eight months? Really..?

So, wow.. it’s been eight months since my surgery!  What remarkable recovery I have made as I learn to adjust to my ‘new body’.  If I could sum up this entire experience to date I would have to say what an amazing machine our bodies are, from its complex workings to its enormous capacity to heal itself.  I’ve definitely learned to appreciate all the bits and pieces that make us function.

A quick update to get you up to speed…

I’ve been put back on Amitryptaline and Pregablin medication,  designed to improve neuropathic pain, and muscle relaxant for spasticity and a whole list of other things…

I recently underwent an IV Iron Infusion at a Haematology Clinic in the city.  After having spoken with the head haematologist there;  there is now evidence that I have Von Willebrand Disease.  A blood disorder that affects clotting.   It would explain why I bruise just looking at a table. I really should buy a lottery ticket, what are the odds of having these two rare conditions?

Today I had a Renal Ultrasound for Neurogenic Bladder Dysfunction.  I am hoping these results will confirm or deny what my GP suspects is Urgency Incontinence.

My next test will be  A Nerve Conduction Study and Electromyography with my neurologist to determine what nerves are functioning and which ones are not.

Finally followed by a Colonoscopy then my FIRST yearly MRI.  This MRI has been long anticipated as I will finally get to see what this little bugger now resembles.  I am sure it’s very comfortable nestled inside my spinal cord, snuggling with all the spinal nerves.  I’m also quite intrigued to see what my spine looks like too since having 5 lamina (part of the vertebrae) removed.

My story was recently published in the “Your Stories” section of the UK Spinal Cord Tumour Forum’s website.   A site for people in the UK who have had, or whose lives have been affected by, benign spinal cord tumours. You can read it here:

http://www.spinalcordtumour.org.uk/index.php?option=com_content&view=article&id=90:news&catid=1:latest-news

I still am so fortunate in many ways; a benign tumour and I can still use my legs, albeit with some difficulty at times.  It’s funny because many people can’t tell there’s anything at all wrong with me.  But there is, and I live it everyday, there is never a moment that I don’t feel uncomfortable. I am reminded of it constantly, when waking, when opening my prescription medication, when showering, when dressing, when sitting, when standing, when walking, when sleeping… It’s no ride in the park at times and I thank goodness I have made some awesome friendships through the Spinal Cord Tumour Association. People, who can relate to the little things we face when dealing with these spinal tumours.  We deal with it through humour, and we deal with it through experience, empathy and knowledge, but most of all it’s through understanding because many of the symptoms of brain and spinal tumours can’t be explained adequately.

I’ll try and not leave it so long before the next post!  Happy Easter everyone!

A beautiful soul.. gone too soon.

I dedicate this post to the memory of a beautiful and brave young girl, who (at only 15 years old) sadly, as a result of her spinal cord tumour passed away on Valentine’s Day.  She fought courageously and without doubt so did her family.  As I sit here on my computer, some 14,000 km away and shortly off to sleep,  I am just absolutely bewildered that a family lost their daughter and their sister – a family I have never met; who are waking up (if they managed any sleep) to the reality that this wasn’t just a bad dream..

How, did a benign tumour morph into something so aggressive that it took a child’s life?  An innocent child’s life – why was hers cut so short that she is now denied her school graduation, driver’s license, entering adulthood, a career, marriage or motherhood?  Why do her parents now have to find any sort of meaning in their lives from this point on wards?

I haven’t been able to get this family out of my mind since reading the news and I am deeply saddened by this tragedy, my tears are flowing long and fast.  I’m sure our fellow Spinal Cord Tumour group joins me in extending to her family our sincerest condolences and may they receive comfort knowing their beautiful girl is no longer suffering.

R.I.P Kristina – Forever Young.

Welcome Summer…!

Summer here in Perth has officially started with 42 degrees forecast for tomorrow (that’s 107.6F for my followers in the US). Since the onset of my symptoms approximately 6 years ago I gradually became quite intolerant to heat.  It was always put down to hormonal changes during and after pregnancies (after thyroid and other tests were inconclusive).  We know now, that the spinal nerve compression is the culprit and whilst I hoped this would be one of the symptoms that would ease; in fact, like many of my other symptoms this one is worse post surgery. I’d like to feel comfortable, where I’m neither too hot or too cold;  but my body cannot regulate its temperature correctly. My Neurologist suggested it was akin to having my tweak switch tuned up just that bit too much.  But it’s not so much that, that bothers me.  I can always stick my freezing cold feet into a hot bucket of water while I sit right under the air-conditioning vent to keep the rest of me from evaporating away in sweat, the real annoyance is the lack of temperature sensation.  I literally can’t sense between hot or cold from my waist down unless it’s at extremes.  I have to have a scalding hot shower in order for me to feel it as “warm”. On the other hand,  the cold water tap doesn’t feel cold to me – again just warm.   I find this quite fascinating, because let’s remember that not much is normal from my waist down. Stick my hand into cold water and it’s cold, but stick my foot in and I wouldn’t be able to tell you. The problem with regulating temperature and sensing temperature are two different things and neither makes sense to me right now, but it is what it is and I’ve learned to adapt.  I’m more careful when using hot water in the home and I ensure I have adequate clothing with me at all times when I go out. Because, weirdly I can go from feeling hyperthermia to hypothermia and back again within minutes.   As Summer is upon us, I’ll be spending most of my time within the comforts of an air-conditioning unit, but don’t be surprised if you see me dressed as an Inuit! Happy New Year everyone! http://www.apparelyzed.com/temperature.html http://en.wikipedia.org/wiki/Dermatome_%28anatomy%29

Hydrotherapy

I started hydrotherapy with the Physiotherapy Department at my local hospital two weeks ago.  I’m really loving it and can feel the difference it is making already.  I’ve basically been assigned different exercises that use the water’s resistance. The feeling of weightlessness in the deep water overtakes the nerve tingling sensations in my lower limbs so it’s kinda hard getting out at the end of the session.

Joondalup Health Campus Hydrotherapy Pool

I had my follow up visit with my neurosurgeon on Tuesday.  He checked my wound.. which is healing nicely, thank you very much! As well, he tested the strength of my legs and feet.  The numbness and tingling is just a side effect I will have to live with for now.. it may improve with time and let’s hope so. Overall, he seems fairly happy with the way in which I am progressing and therefore has decided to forego an immediate MRI and instead opted to have one in a years’ time. I still deal with bladder & bowel problems ( I won’t go into details – it’s not much fun).  But hey, I’m here and I can walk and get around. I’m even driving again which in itself is the greatest achievement I’ve encountered in the last few months.

A scar means, I survived.

“There is something beautiful about all scars, whatever nature.

A scar means the hurt is over, the wound is closed and healed, done with”.

A really quick update..

Hello all,

I have now reached the 7 week mark and doing reasonably well.  I had to reschedule my physiotherapy appointment yesterday due to an impromptu overseas departure by my husband.  I am coping on my own with the children and animals for the first time; and got through the first day without too much consequence.

On the recovery side, I’m walking about now like normal (aside from the backache and surgical wound pain). I can perform periods of activity with rests in between pretty much throughout the day. Still experiencing bladder and bowel issues with numbness from waist down, however the tingling in my lower legs is not that noticeable until I lie down – then it is back with a vengeance. My headaches come and go but it’s all part of the deal.

Until next time…

D

Damn Tumor!

I am pleased to be able to share a friend’s recent post on her Intradural Spinal Cord Lipoma. This person has become very close and special to me over the last few months. We live in different countries, miles apart, different backgrounds and lives and yet we share so many similarities. I can be sure she’s there for me when I experience crazy symptoms; she has been both a source of knowledge and inspiration. Never would I have thought that a Spinal Cord Tumour would lead me to her. Thank you Amy for all your insight into the world of SCT’s and may you continue to navigate the path to recovery with strength and self-worth.

AmayzinglyCreated

A tumor growing on or in your spinal cord is never a good thing. 

As I have gone through life never did I think I would end up disabled with a spinal cord injury caused by a tumor. I knew the possibilities of diabetes, heart disease and I still do, or the terrifying idea of cancer. But finding out that you had a mass growing inside out thru your spinal cord your entire life since the first few weeks after conception until thirty-something years old just isn’t a scenario you play out in your head. Although my spinal cord injury (SCI) doesn’t follow the usual route caused by some type of accident doesn’t make it any less real. I suppose it is similar to those with MS, lesions on your spinal cord. The mass grew slowly, damaging nerves, making itself comfortable growing its own nerve rootlets and wrapping up…

View original post 677 more words

One Month Post Surgery!

I am now at the one month post-surgery mark and I am feeling remarkably better with each day and much more mobile. I had a slight relapse on Wednesday and returned to the Emergency Department due to nausea, neck stiffness and unbelievable headache that has been hovering for days. The concern was Cerebral Spinal Fluid Leak or Meningitis – thankfully I have neither and it’s just a case of musculoskeletal tension in my neck – although they can’t explain the nausea.

I am able to walk about half an hour with a walking stick and can sit for a couple of hours. The surgical pain in my back still lingers and radiates across my chest but it is improving. I remain numb from my waist down with tingling in my calves and feet, I am getting used to this – I guess this is the ‘new me’.  I’m looking forward to commencing physiotherapy next week to devise a plan of attack on this body of mine.  Even more so, I am looking forward to driving again one day and returning to being ‘mum’ again.  It’s been tough not being able to interact with the children the way I used to; they are resilient though and know that I need my rest.  Alex caught sight of my surgical scar the other day and hid his face in fear and then comfortingly said “Mummy, did you cry when the doctor cut your back open?”

The highlight of my week was attending parts of my daughter’s School Athletics Carnival. It was a beautiful sunny Perth Spring day, even though I was mostly wheelchair bound, I managed to hobble around and snap up some lovely pics of her 🙂 Oh! I mustn’t forget my friend Sue, who graciously took me out to lunch and saved me from staring at the bedroom ceiling on Thursday.  Thanks Sue!

Spasms.. a few can relate to this.