Post by shazpb on Aug 27, 2008 6:18:45 GMT -6
Hello,
I am new to this forum. Please excuse me if this is a long post but it really has been a long journey spanning 35 years and from what I can research a bit of a miracle.
My name is Sharon and my husband Greg was diagnosed with spinal astrocytoma Grade II, T2 - T6 way back in 1972. Over the last 35 years it has played havoc with his body, virtually the whole CNS is involved but Greg has battled on to the amazement of many a neurosurgeon.
Below is a condensed summary of history & MRI's over the years:
I know long it is but believe me it is a summary :-)
Greg dx 7/10/1972, age 11.
1972
Greg had complained of episodic L chest pain just above the breast for 18 months, which was followed by sudden weakness in the left leg.
Myelography showed complete obstruction of the neural canal at T2 level and thinning of the pedicles of T4-5.
Operated on 11/10/1972 –Laminectomy - an extensive lesion from T2-T6 was disclosed. From surgeon’s notes -“A reddish brown, rather vascular mass filling the whole of the spinal canal was found. The mass appeared to be enveloping the cord. I thought on naked eye appearance that this was most likely to be an ependymoma.” The surgeon was only able to remove approx half of the tumour. Histology astrocytoma Grade II
By 21/10/1972 was able to walk better than prior to the operation.
Operation followed by chemotherapy and radiation.
1978
15mm tumour found in the 4th ventricle of the brain with an associated 15mm cyst. Classed as inoperable. Was treated by radiation and chemotherapy.
1978 - 1998
Greg was virtually symptom free for 20 years. He married and had 3 children (despite the radiation and chem) and of all things worked as a furniture removalist. Whether Greg hide symptoms, which I think he did ( and he was good at that over the years) the bloody disease caught up.
Dec 1998
Brain
Heavy calcified 4th ventricle mass inseparable from the 4th ventricular floor. The mass measures 3 cm cranio-caudally by 2.5 cm, transversely 2cm. It fills the 4th ventricle. Gliotic changes in the middle cerebellar peduncles.
Spine
The spinal cord is abnormal. There is a central cord syrinx extending from T7 to C6 with moderate cord expansion. Thoracic and lower cervical syrinx and posterior cord dural attachment and secondary kyphos deformity. Multiple linear and nodular lesions in a dilated lower sacral thecal sac suspicious of drop intradural metastases. S1 to S3
Feb 1999
Lesion in posterior fossa, thoracic lesion associated with syringomyelia, lumbar deposits. Surgery not attempted as level of functioning is so good.
Nov 1999
Spinal cord syrinx C7 to T7. Abnormal intradural disease in the sacral spinal canal and there is a heavily calcified lobulated fourth ventricular mass inseparable from the fourth ventricular floor.
June 2000
Continuous thoracic syrinx C1 to T8.Situated predominately on the LHS in the cervical spine. Incidental finding of a mucosal inclusion cyst in the right maxillary antrum. Doctor’s believe that an insertion of a shunt would be too risky and result in paraplegia.
Nov 2002
Brain and thoracic lesions unchanged. L5/S1 lesions have progressed. Worsening symptoms in the lower limbs. Wide swinging gait, severe foot drop, decreasing balance. Considering radiation oncology.
Nov 2005
Adjacent high signal involving the pons and cerebellum demonstrated.
June 2008
Brain -Posterior cranial fossa mass consistent of a cystic and solid component. Tumour extends into the 4th ventricle but causes only partial obstruction and there is no secondary hydrocephalus present. No increase in signal is seen in the brain stem.
The rest of the neuroparenchyma shows foci of high signal within the white matter in keeping with underlying small vessel disease. There is a retention cyst within the right maxillary sinus. There are 2 sebaceous cysts within the subcutaneous tissue one is located over the left parietal region and the other one over the right occipital region.
Spine – severe kyphotic curvature at the upper part of the thoracic spine. Extensive myelomalacia of the spinal cord which is unchanged since 2005. Note is however made of a small area of high signal in the T1 sequences posterior to the spinal cord at level 6. This correlates with an area of low signal in the T2 sequences. It could represent ferrocalcinosis secondary to calcification in the granulation tissue. Syrinx within the cervical spinal cord is again demonstrated. It extends to the level of the medulla cranially and caudally to the level of C3. The conus medullaris is situated at the level L1. No cauda equina mass is seen.
20 May 2008
extensive syrinx C1 to T8, cystic lesion in his posterior fossa on the right hand side which had a suggestion of some increased thickening. Deterioration in his balance, reduced temperature sensation in upper limbs, left being worse than the right and poor proprioception.
28 June 2008
Up until this date Greg has always virtually retained his independence and although his mobility has decreased since around 1995 he has been able to walk with the aid of a walking stick. On 28 June he woke to virtually find himself a quadriplegic and suffering from slurred speech. He had a 10 day course of dexamethasone but was weaned off the medication as the side effects (mainly gastric and shortness of breath) were severe. Three weeks on he has regained about 60% use of his arms and can move his right leg but is unable to stand, balance or walk. Neurosurgeon wants to try to insert a shunt but while he is improving slowly Greg doesn’t want intervention.
Today, 24 August 2008
Greg has regained approx 80% use of arms, fine motor skills have greatly reduced. As regards his legs... well they really have given up playing the game. He still has movement in the right leg and is able to bear his weight on this leg (just). Both legs have major fluid retention although he is on diuretics. Bladder and bowel ok. Manhood gone. (This symptom hurts the most.)
Greg is due to visit neurosurgeon in a couple of weeks time. We know the neurosurgeon wants to insert a spinal shunt in the thoracic spine but we also know the risk of leaving Greg as a quad is over 95%.
Anyone got any suggestions? Not an easy one I know but we are willing to bounce around all suggestions as to what road to take.
