My husband is three and a half months out of treatment. His first ct scan came back clear. However he is having problems with headaches and dizziness. He has had several falls and one possible seizure. His doctor sent him to neurologist who ordered a spinal tap. Has anyone heard of squamous cell oral cancer moving into the spinal fluid?

No one here in the past has posted about anything related to spinal fluid specifically. However we have had posters in the past develop mets to the brain, which may not be anything like what your husband is experiencing.

We also have lots of posters, myself included, that have chronic dizziness, a history of falls particularly on getting up from a supine/ lying down position. Most of the time these are related to vascular issues in the carotid arteries that are a result of the radiation treatments.

People that have seizures, and are witnessed by others, do not usually think it is a "possible seizure". The events are quite profound. We do have people that have transient ischemic attacks (TIA's) again as a result of vascular issues, and these are precursors to or mini strokes. Often people might say that for a moment they lost vision in one eye, or had some other transient abnormality, which would be typical of a TIA.

The spinal tap, is likely looking at issues that are not related to the fluid containing cancer itself, but for markers that speak to a different condition which presents clues in the fluid.

Thank You. This helps with the waiting. We are getting results in the next few days. My use of the word "possible" is in deference to my husband. I saw involuntary movements of the head and arms after he had taken a fall, and he was non-responsive for a few seconds. He has no recollection of this. I say it was a seizure, he says its not. We will see what the doctor says, and he has promised to go right to the hospital if I see it again.

Yes I too have issues light headed ness etc... Occasionally. Also I get this very odd tiglon sensation when I bend my head forward after I've been for a walk... Bizarre. Someone else has the same thing - its attributed to radiation. Good luck...

Ditto to some of what Cheryl said. But who knows? A good thing you're getting it checked out!

hi KBC

It sounds like the neurologist is trying to find the cause of headaches and dizziness rather than looking for the SCC in the spinal fluid (CSF).

We used to do spinal taps or lumbar punctures, to get CSF for to check for infection. The fluid was taken and sent to the lab for testing in exactly the same way blood is tested for various greeblies. We also used it to check pressure in the brain. The wrong pressure might cause headaches.

You can also administer medicines this way although I doubt your neurologist has this in mind.(think epidural during child birth)

The dizziness does sound like hypotension though and is very common as we advance in years (and also after radiation to the head and neck, I have learned). Does your husband experience this most often when getting out of bed or from a lying down position? I personally spent many hours on night shift "saving" our elderly who had got up too quickly in the middle of the night to go to the loo, and then collapsed in the cubicle up against the door making it very difficult for us to get them out. For a while they installed outward opening doors in toilet cubicles, until they realised the possibility of decking the unsuspecting nurse walking past as the patient was exiting was an even bigger hazard .

Let us know what the doctor said

one more thing - have you discussed these side effects with the chemo doctor? some of this stuff could be any one of the three your husband had. We blamed cisplatin for a lot of my Alex's dramas (he also had the chemo you guys went through) but 5FU is not lily white in the cardiovascular and neurological side effects either.

Thanks everyone for your input. The Chemo doc and Neuro doc are working together. LP showed NO cancer in the fluid! But haven't gotten full results of the test from the Neuro doc. Seeing him next week. Yes it does happen most often (or to the greatest degree) when rising from a lying down position. It is amazing what damage these treatments can cause. The recovery has been just as bad as the treatment itself. Planning on putting all aside for Christmas. Hope everyone has a pleasant holiday!!