2. 1. Parts of Nervous System involved
– Glomus Jugulare (GJ)
A glomus jugulare tumour is a
neuroendocrine tumour with
potential impact on:
• Cranial nerves
• Vestibular system
• Hearing
• Brainstem and pons
• Sympathetic / Autonomous
nervous system
Source:
http://images.radiopaedia.org/images/
11077/dec17de9e8f6630fbd834f0cf0f9
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3. Glomus Jugulare Tumour - defined
• Very vascular tumours
• Found in the skull base originating at the jugulare
foramen
• Are usually very slow growing, but may experience
growth spurts / surges and are often not found until
they are quite large in size
• Tumour may be single or multicentric; benign,
cancerous or metastatic; and, may secrete
catecholamines
• Most commonly found amongst women in their 50’s
and 60’s and most often on the left side; occurrence
rate is 1 in 1.3 million people (rare tumour)
4. MRI showing location
of a right sided
glomus jugular
tumour
Source:
http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=12
10&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&II
D=105&isPDF=NO
5. Living with a GJ Tumour
• Tumours may erode the skull base
• Tumours may affect / alter carotid artery, cranial nerves
(hearing, taste, tongue, swallow, eye, facial muscles,
shoulder), hearing and the vestibular system – the
extent of damage is based on origin, size and growth
pattern of the tumour
• Larger tumours may be intracranial in nature
• As tumour grows in size, pressure may be put on the
pons and brainstem
• Tumours may regrow (after both radiation and
surgery). MRI / CT Scans are used to track change.
6. Treatment
• Treatment is individualized: tumour location, size, growth pattern,
age and health of patient must be considered in determining
treatment
• Treatment Options include – ‘watch and wait’, surgery to remove,
radiation – gamma, cyber-knife, intensity modulated radiation
(IMRT). Neurontologists (ENT) and neurosurgeons along with
radiologists may be involved in the treatment plan
• Embolization usually occurs before surgery to reduce blood loss
• Surgery can be difficult – these are vascular and insidious
tumours, potentially impacting the carotid artery and in a location
that is difficult to access
• Additional cranial nerve deficits and hearing loss may result from
surgery
• Gamma / Cyber-knife may be used if tumour is small
• A CSF (Cerebrospinal Fluid) leak is possible
7. 2. My Personal Journey with a GJ
• Investigation by an ENT began in Nov 2009 after a year of
progressive hearing loss in the right ear and an incidence of
slight vertigo
• A sudden onset of facial palsy and a deviated tongue expedited
medical investigation in early Dec 2009
• A large (4.2 cm x 3.4 cm x 3.2 cm) tumour was located by an
initial MRI (looking for, amongst other things, a potential
acoustic neuroma)
• Additional MRI’s and CT’s were followed by a biopsy in Jan
2010 with a final identification of a benign, paraganglioma
(glomus jugulare) that had likely been growing for 10-15 years
8. Location and Impact of Tumour
• Early reports identified a ‘large mass occluding the entrance to the right
internal auditory canal and the right Meckel’s Cave with minor indentation
of the right side of the pons and the right middle cerebellar peduncle and
mild brainstem compression’
• Nerves V1, V2, V3, CN7, CN8, CN10 and CN12 affected to some degree
• Some vestibular damage
• Hearing loss and tinnitus
9. Personal Journey (con’t)
• The Medical Tumour board at a local teaching hospital deemed it to
be inoperable due to size, location, potential for damage and patient
age
• Treatment option was for Tomography – IMRT; a 25 course of
fractionated radiation over 5 weeks occurred in March 2010
• The treatment goal was to halt the growth of the tumour before any
more damage could be done to the cranial nerves and the brainstem
• Subsequently experienced a CSF in the fall of 2011
10. Treatment Experiences
• Radiation caused temporary swelling of the tumour leading to double
vision , swallow issues , weight loss
• Negative impact of steroids used to reduce swelling from tumour and
radiation (weight gain, impact on knee and hip joints, emotional impact)
• Subsequently, intracranial hypotension occurred with “cerebellar tonsillar
herniation and flattening of the pons and diffuse dural thickening”. A CSF
leak was experienced (with orthostatic headaches and nausea) requiring
bed rest and blood patches
• Spent many months rebuilding strength and endurance (orthostatic
particularly)
11. Consequences of tumour and CSF Leak
• Vestibular issues – balance and movement
• Loss of hearing in right ear
• Headaches and head pressure
• Orthostatic intolerance
• Cranial nerve deficits – deviated tongue, swallow, eye,
shoulder issues, trigeminal pain
• Fatigue from movement and activity
• See things, hear things and sense differently and have to
think about movement (balance on stairs, in dark
environments, on uneven ground)
• Although the brain has not been directly impacted by the
tumour, the ability to concentrate on activities for
extended length of time, the ability to multitask and the
ability to remember things has been affected
12. Coping with a Glomus Jugulare tumour
• Coping with effects of tumour and nerve damage:
– Moderate activity and pace of life (disability from
work)
– Group support – local brain tumour group, online
groups for Paraganglioma and CSF leak
– Restorative / gentle yoga for help with balance
– Aqua fit classes (cardio without balance and head
pressure issues)
– Gradual building of tolerance levels
– Exercise brain (MOOC’s, volunteer work)
13. 3. How this course has helped
…….
• This course has helped in understanding the following:
– Terminology related to the tumour and cranial impact
– Location of tumour, impact on pons, brainstem
– Impact on cranial nerves and sense of disequilibrium
– Eye / sight issues
– Hearing loss issues
• Brings clarity to my reading and investigations of the
past 4 years
• To me knowledge is power and important in my
understanding of the impact of the tumour and in
accepting the changes that I have experienced ; helpful
as I work to establish a ‘new normal’
