Residual Tumor? Surgeons Who Disagree on Post-Op Issues

[christynic]

Six months post-op; I still have lousy balance and for the past month have had terrible headaches.  I had an MRI last month, and my ENT surgeon looked at it and consulted with my neurosurgeon; they think it looks like meningitis.  I don't know if a person can have meningitis for over a month, and I also thought my headache symptoms were consistent with what I read here about occipital neuralgia - but now I have red spots consistent with meningitis??! 

However, then I got an email from Dr. Slattery at HEI; he had followed up with me a few months ago because I had consulted with him pre-op. He says the swelling on my MRI looks like re-growth.  He recommends translab to clean out the inner ear completely to restore my balance. 

I think I need a tiebreaker opinion... but I know Dr. Slattery is highly regarded.  Has anyone had an issue with scar tissue being mistaken for regrowth, even by an expert?  I am completely lost, and close to losing my job since I can't return to work yet.  I'm already losing my benefits in a couple of weeks.

[christynic]

Oops, my mistake.  I re-read the message from Dr. Slattery and he said residual, not re-growth.  I have so many questions   Do residual tumors keep growing?

[CHD63]

Christy .....

In the midst of my husband's emergency surgery, our power outage for a week, etc. I missed your posts on your vestibular function concerns so I am sending you a PM regarding that.

All I will say here is ..... yes, even experts can disagree on whether what they see on an MRI post-op is residual tumor, regrowth, or "surgical changes."  My first AN surgery was in February, 2008, via retrosigmoid/suboccipital approach.  My first MRI was ordered at six months post-op.  Even on that first post-op MRI, there was an "area of enhancement" that my local radiologist felt could be residual tumor, but my surgeon said it was scar tissue.  End of story ..... whatever it was, between February, 2010 and February, 2011 it grew 3 mm ..... measuring 1.3 cm by this time.  Thus, I had a second surgery in May, 2011 via translabyrinthine approach and the only post-op MRI in November, 2011 showed no areas of enhancement!!

Please remember that each of us is unique so my story should in no way mean that you have the same situation.  If it were me, I would certainly go for a third opinion regarding the meningitis, even though Dr. Slattery is tops in the field.  UPMC in Pittsburgh gives free consultations from MRIs, as well as other facilities around the country.  Are there not other tests to confirm or disprove meningitis?

Regarding the balance ..... we do know that if a vestibular nerve is not severed, but is mis-firing, it confuses the brain and  it results in ongoing balance issues when the brain cannot shut off the mixed signals and adjust to only one good vestibular nerve functioning.

Remember, I am not a doctor ..... these are things I have gleaned from my own experience and research.

Clarice

[christynic]

Thank you so much Clarice... for sharing this info and also for your PM. I am going forward with meningitis tests just to confirm or take it off the table.  I also have an appointment in August with a headache specialist (neurologist) for possible occipital neuralgia - after reading on the forum in the taste issues, I'm thinking it might be relevant to a nerve damage diagnosis to mention that I've lost all sense of taste on the left side.

I'm also seeing a local vestibular specialist next week for a second opinion in general.

Regarding the residual.. the ENG did show a small amount of activity on the AN side, which would seem to be independent corroboration of Dr. Slattery's theory. It could also explain why I seem to have hit a wall in my rehab. I don't much like the idea of another surgery, but as you did with yours, my husband and I agree that we'd really like to wait rather than jump into it right away.

While your residual was growing, did your balance issues get worse?

Christy

[It is what it is]

I'm sorry to hear you are going through all of this.

Karen

[pjb]

Sorry that you are going through this and hoping it is not menigitis ... I to right after surgery had an area of enhancement and found out it was residual of the tumor that was suppose to be totally removed and thank goodness it has been 3 years and no growth just have to be constantly reminded that it is still there.

Thoughts and prayers are with you.

Best Wishes,

[millie]

Praying for you Christy.
Millie

[christynic]

Thanks so much to you all, especially to CHD63, who checked in personally

NO meningitis; my neurosurgeon totally dispelled that.  I have had two occipital nerve blocks now from a new neurologist who is awesome - Dr. Engel at Scripps - first one didn't work very well, but the second one worked for almost two days!  She really cares, I can tell, and she's working with me to take care of the headaches.  She also has me on Topamax, an anti-seizure medicine, to slowly depress my central nervous system.  Her theory is that my childhood migraines are back and triggered by the occipital nerve flare ups.

July 22 was my last ambulance/ER for headaches - since then I have been able to manage them at home!

I'm waiting to address the possible residual tumor until my next MRI in January.  If CHD63 could walk with a residual on one side and bad news on the other, then so can I

[It is what it is]

I'm glad you have some more answers and a physician who cares and is listening to you.

Karen

[CHD63]

Christy .....

So glad you are getting some help with the headaches ..... hopefully they will gradually fade and disappear altogether!

Hang in there ..... it WILL get better!

Continuing thoughts and prayers.

Clarice