Author Topic: Tumor removed last September. Seeking advice on current issues.  (Read 3372 times)

anothereveryman

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I have not posted here for a while, so I will add a brief recollection of previous events.

I had, last time I had MRIs done, it was confirmed I had a 3x3x9mm tumor directly in the labyrinthine turn of my left cochlea, and what was either a second smaller tumor in the vestibule area, or possibly pressure from the first tumor making a tumor-like impression inside the vestibule. I was already fully deaf on that side by the time of the MRI, had alarmingly loud tinnitus that made distractingly strange changes throughout each day, and soon after I had vertigo attacks that are still the worst thing I have ever experienced in my life, my eyes involuntarily spasming and chasing a center of balance that was no longer there, vomiting and utter, weeping helplessness in minutes-long attacks every few days until the surgery was done.

Healing from it has been both a blessing and a mystery. All the stitches have been removed by an ENT local to my area months after, except the ones he said would erode away on their own. I got my sense of taste fully back, which was strangely altered for weeks after the surgery (ice on the tip of my tongue would set off a strange warm salty sensation that would persist for minutes after). My jaw used to be very tight and unable to open very far, and that has fully gone away, and about the only obvious sign of surgery being done is that my mouth always feels a little bit dry, especially after sleeping, so I drink lots of extra water.

Here's where I seek advice: is it safe to sleep on the surgery side? It used to be my most comfortable sleeping position, but it used to be sore and hurt there if I tried, and now it just feels... weirdly congested, at a loss to describe it another way, if I do so now. It's hard to sleep on my still-hearing side because I can get pressure bubbles that pop uncomfortably there that wake me up.

Also, how long can I safely put off another MRI? I have no noticable return of symptoms, except (if it counts), feelings of pressure all along the side of the surgery. They don't hurt, but there's a feeling of fullness that almost feels like a hand being held from my temple toward my left eye and jawline. Again, not painful, but distinctly there.

It's very hard to reach a doctor lately to assign me a MRI scheduling date, my funds are short even after insurance coverage, and I have a lot of life issues unrelated to the surgery and my medical status that make the stress level of all of this hard to imagine, even to think about.  I know I should get one again, but soon sounds very difficult to do.

anothereveryman

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Re: Tumor removed last September. Seeking advice on current issues.
« Reply #1 on: April 17, 2015, 05:57:39 am »
Oh, less serious (I hope) but related question as well: the inside of the surgery ear, now sealed apparently so it doesn't go all the way in like it used to, itches something fierce. I feel guilty and worried when I do so, but I often have the overwhelming urge to nudge a fingertip, not hard mind you, around the itching area, for relief. There's often a slight buildup of something that isn't ear wax. Maybe shed skin from the sealed area?

What I'm asking is, what can I safely to do handle the itching and that build-up?

jaylogs

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Re: Tumor removed last September. Seeking advice on current issues.
« Reply #2 on: April 24, 2015, 06:06:01 pm »
Hey there!  Sounds like  you have had quite the rollercoaster during this whole thing!  So for your question about sleeping on your AN side, I would err on the side of caution and ask your doctor this.  For myself, it wasn't an issue, but that was only for me.  Everyone is different so I wouldn't clump your experience in with mine.  In fact, the itching thing, I would also ask your doctor.  And yes, even the MRI question...ask your doctor.  Again, every person's experience is unique. For example if you do a search on MRI's, you'd find a wide range of dates doctors had their patience go in for a follow up MRI.  For myself, I had only one  MRI done, after my 1st year.  Then they said no more.  I've read where some people having one every six months, some every two to five years.  Sorry I can't be much more help, but we are here for you if nothing else as a good sounding board! :)  Let us know how it's going, take care!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

anothereveryman

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Re: Tumor removed last September. Seeking advice on current issues.
« Reply #3 on: April 27, 2015, 04:24:29 am »
Hey there!  Sounds like  you have had quite the rollercoaster during this whole thing!  So for your question about sleeping on your AN side, I would err on the side of caution and ask your doctor this.  For myself, it wasn't an issue, but that was only for me.  Everyone is different so I wouldn't clump your experience in with mine.  In fact, the itching thing, I would also ask your doctor.  And yes, even the MRI question...ask your doctor.  Again, every person's experience is unique. For example if you do a search on MRI's, you'd find a wide range of dates doctors had their patience go in for a follow up MRI.  For myself, I had only one  MRI done, after my 1st year.  Then they said no more.  I've read where some people having one every six months, some every two to five years.  Sorry I can't be much more help, but we are here for you if nothing else as a good sounding board! :)  Let us know how it's going, take care!
Jay
Thanks for the reply! :)

It is definitely prudent to ask my doctor, for all of the above. It's unfortunate that my more reliable doctor, the one I trusted in and felt was one of the best, retired recently. The doctor that's in her place is not so sympathetic. I get rushed around, questions ignored, but I can at the least press the issue and insist at the least on what Dr. Slatterly himself suggested: one MRI a year after surgery. I'll try to ask the other questions too, maybe even put them in writing so I can refer to them instead of getting fast-talked out of the office.

I don't have easy means to shop around for another doctor. Such is a result of being on fixed income and having no ability to drive, limiting both my income and my range. Basically, I'm dealing with what my insurance can provide, which is modest.

No new issues yet, except pressure and soreness if I sleep on my "good" side. It's a shame, because until I wake up and feel the soreness (mild, not severe pain, more a sensation than actual pain), it's the only reliable position I sleep easily in.

The itching isn't as severe as it was earlier, at least. Dizziness is occassional, but nowhere near as bad as it was before the surgery, and vertigo no longer happens, so that's a blessing.

CHD63

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Re: Tumor removed last September. Seeking advice on current issues.
« Reply #4 on: April 27, 2015, 07:07:52 am »
Hi anothereveryman .....

If you have not already done so, email Dr. Slattery and tell him your concerns that you posted at the beginning of this thread.  Your tumor was in a location that is a bit unusual so many of us did not experience what you have.  Dr. Slattery should either reassure you or advise you to get an MRI sooner than the one-year mark.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011