TBI or Paraneoplastic Syndrome????

My husband 46 at the time fell from our roof on his head onto cement Oct. 2004. He had a Fractured Skull and Epidural Hematoma at the Occipital and Left Temporal area of the brain. No other broken bones, but was bedridden for quite some time due to symptoms from the fall in 2004. He was sent home after 2-1/2 days in the hospital with low grade temp, vomiting and severe headaches etc.... There was no monitering of ICP. After a period of time he was able to walk and do things around the house, but still having deficits which are quite disabling. Till this day he has all the symptoms of a TBI and a few more: Cerebellar Degeneration, Bad Headaches daily, Nystagmus, Vertigo, Nausea, Coordination issues include Symptoms of both Midline and Hemispheric Cerebellar Syndromes, Diplopia, Visual Disturbances, Short Term Memory, some Speech Problems, Sleep Disturbances,(sleep study showed stage 2- 5% & stage 3,4-0% of the time.  Hand Tremors intentional, Mood Swings, Light Sensitivity, Intermittent times when he walks everything goes white and he collapses, episodes of passing out, Positive Basilar Artery Occlusion (through PT testing) Rt.Vertebral Artery Dissection on MRA, bottom of his Feet and palm of his Hands are Numb (Peripheral Neuropathy), Hypothyroid, Atonic Bladder, Dysphasia, Normal Strength, but Diminished Reflexes/sometimes none, Heart Palpitations, Hot Flashes, skin itching, unexplained pain in 1 elbow for months, Dry hacking cough (feels like something in the throat,  Now having high Triglycerides, sugar, Cholesterol problems the list goes on.

Before this in 1979-80 he had been hospitalized for 2 MVA's, LOC, amnesia, and also a bomb blast which through him quite far backwards onto the floor all from when he was in the military. He recovered with minor problems (as far as we know) and was functioning to complete his tour of duty in the military. Then from the late 80's till the time before falling off the roof he had multiple more MVA's with insults to the brain, but still functioned and held a very high positioned job with an offer of VP position. He was commuting about 170 miles everyday. Now he can not drive and does not like seeing, or being involved with a lot of movement unless he has to. When we go anywhere he is wheelchair bound because of his disabilities.

We tried to go to outpatient P.T. March of 2005, but because of severe dizziness nausea, nystagmus etc... the therapist was unable to work with him because he was already sick when he got there.  They said they couldn't work from his baseline. When he fell off the roof in 2004 he had a small amount of recovery. Unfortunately because of coordination/vertigo issues he ends up with more injuries/insults to the brain due to him falling. It seems to set him back to when he fell off the roof.  He has been in/out of the hospital because of it. Aug. 06 while he was in the hospital he fell and hit the front of his head, which then caused him per the doctors to go into a “trance like state yelling, becoming diaphoretic, unresponsive to doctors for 2 hours.” Which could not be explained. In Jan. 07 while in the hospital for evaluation/rehab for TBI he had 2 episodes of severe headaches lasting for over 5 hours (scraming agony type). Then had a convulsive episode and “stopped breathing (Apnea) and was unresponsive” the doctors called a code blue. He was intubated and resuscitated twice.

In early 2005 his MRI’s were normal, but late 2005 till now they see on MRI’s of his brain "abnormal bright T2 signals seen within bilateral cerebellar folia with prominent and dilated major cerebellar fissures." The Neurologists and other doctors keep telling us because of his multicomplex issues and abnormal MRI’s they are basically for a lack of words stumped on why his Cerebellum has Atrophied. They are saying it is NOT from the fall in 2004. They said the cerebellum is tucked to far in to have been damaged. It has also been documented through 2 MRA’s May and June 07 that he has a partial Right Vertebral Artery Dissection, but not agreed upon by all the doctors.

My husband had an episode of delirium in Feb. 07 a chest x-ray and brain CT again showed the abnormal bright T2 signals etc… and they found a pulmonary nodule in the left lung. Chest CT was also in Feb. then done in August and showed a new pulmonary nodule in the right lung and still in left lung. (1 in each lung) Lungs also showed “bi-apical pleural-parenchymal scarring, multifocal areas pleural thickening” he has not had TB, pneumonia and he hasn’t been sick recently. 2005 & 2006 chest x-rays were normal. He had an appt. with the Neurologist Sept. He said my husband’s case is complicated. He presented his case to different Neurologist with no clear-cut answer. What they are telling us in there opinion is that he has Paraneoplastic Syndrome. He had an LP in Feb. 07 it was negative for Anti Hu, Yo, & RI only elevated IgG. The Neurologist explained to us that it could be negative, but that doesn’t mean he does not have Paraneoplastic Syndrome. He also said there are many different forms of this syndrome, unless you know specifically which one to test for you will get a negative test result. The only coarse of action at this time is they want us to wait and repeat the chest CT in 6-12month. It seems a long time to wait. The thoracic specialist we just saw looked at the scans and didn’t think he has cancer. He said you can’t have SPN in both lungs. He said you have multiple nodules in one lung before it spreads to the next lung, or elsewhere. He couldn’t explain the thickening or scarring. We asked if small nodules couldn’t be seen yet on chest CT. He said possible. No type of PET scan has been done or ordered. Should we ask for one and other Antibody testing?

My husband started TBI/Vestibular home-based Rehabilitation June and Speech Therapy July 07 3 times a week he is making small gains, but we were told therapy will be ongoing for sometime yet. The therapist just cut to 2x wk he said he seemed worse and not making progress (plateau/inconsistent). Do you have any suggestions PLEASE Thank you for your time. Do you have any ideas or thoughts to what is going on? Can you have non-cancerous and cancerous nodules in different areas? TBI or Paraneoplastic or can you have both? I know there are a lot of cross over symptoms. Thank you for your time. Lisa

[riley180]

Hi Lisa,
I understand the frustration you must feel, There seems to be a lot of things that have been investigated in your husband and yet, there seems to be so little in the way of gains.
First off: you need to evaluate how strong are your husband’s risk factors for lung cancer, does he smoke a pack a day, of say 20 years or so? 10 years? Any occupational exposure/risks that may cause lung cancer? 10 years may already be enough to raise suspicion.
If you feel that there is a strong possibility that there might be lung cancer, the next step is to evaluate the chances of a paraneoplastic syndrome.
The more common type of lung cancer is the non-small cell variety. Paraneoplastic symptoms would generally occur in the setting of advanced or metastatic disease. From your description, it seems that your husband has at least two nodules, it is either one came from the other, or they occurred independently. It is unlikely that one came from the other due to their small size, and the absence of involvement of any lymph nodes near the heart (cancer would have spread from the original site, towards lymph nodes near the heart, then cross to the opposite lung). Take a look at his fingernails, if they appear like this (http://www.lib.uiowa.edu/hardin/md/pictures22/dermnet/64_finger_clubbing_01.jpg) then the odds of lung cancer is somewhat higher.
I don’t know how well you take in figures, but anyway here goes: The incidence of lung cancer in men in the US is about 89/100000, the odds that is non-small cell lung cancer would be 67/100000, the odds of having non-small cell cancer would be about 1 in 1500. Since the lung disease seems early, it it not likely to be associated with a paraneoplastic syndrome.
The less common variety of lung cancer is the small cell variety. Small cell cancers have a stronger association with paraneoplastic syndromes. The more common ones are those that involved fluid retention (inappropriate antidiuretic hormone), and puffy (moon-like) facies (Cushing’s syndrome). The presence of these features may strengthen a paraneoplastic cause of the neurologic symptoms (there may some confusion as I expect that your husband may have received steroids for some time and may get Cushing’s syndrome from the drugs). The odds of having small cell lung cancer would be about 1 in 4500, that he may have small cell lung cancer.
I don’t think it is worthwhile to do further antibody testing. You have done what is known to be associated, and as what has been discussed with you, the testing itself is not very useful when you get negative results. More testing may not be helpful.
The presence of scarring and thickening makes me think of something. Is it possible that your husband has problems with swallowing due to his condition. Chronic aspiration of small items such as food, may produce injuries in the lung airway and may show up as these scars. There’s a chance that some chronic infection may show up as nodules, though he has no risk factors for tuberculosis, a recurrent infection may produce several injuries. The pattern though for recurrent ones, would be more of cavities rather than nodules.
At the end of the day, the interval assessment is a good plan. If there are any new symptoms in the interval that may be referable to a lung cancer – then a repeat examination becomes important in a shorter time period. The advise for a 6 month interval is to balance the risk of the CT scan radiation producing cancer.
I hope somehow I helped and not added more confusion.
My best to you.