Questions - Regrowth

[SamsMomIAm]

Hello! I had surgery in September to remove a 5 centimeter acoustic neuroma. Now, a MRI has revealed that since DECEMBER (when I had a CAT scan), the tumor has regrown to nearly 4 1/2 centimeters! I will have to have surgery again. Has this happened to anyone?

[Raydean]

Hi SamsMomIam,

First of all, I'm not a doctor, just of wife of a husband who also had an extra large tumor.  Not being a doctor I'm only guessing that if what is appearing on the CAT Scan is actually tumor then it's almost have to be to be residual tumor, (tumor not removed during the first surgery).  There are other things that could be showing up, such as scar tissue and packing from the first surgery.   It's really important that you have a second opinion to determine what is going on.  If possible collect copies of your films from before and after surgery for comparision. 

The House Ear Clinic will review films and do a phone consult for free if you send them copies of your films. I can e-mail that website page if needed.

What are your Doctor's telling you regarding remaining tumor and size?

Thinking of you
Raydean

[Battyp]

My first thought would be did they get the tumor out comletely the first time?  If not then I'd think it was residual.  There are some on here who have had regrowth.  I'd also like Raydean said get a second opinion.

My prayers are with you!
Michelle

[ppearl214]

Hi SamsMom and welcome.  You are in great company here!

I have to agree with the others. We have learned that AN's tend to be "sticky" and sometimes, a small hint/residual is left post-surgery so there is no further nerve damage.  I would be curious if it is, in fact, residual and if it did regrow, which is not uncommon.  2nd, 3rd, umpt-teen opinions would be worth a thought...

Be well and know you are in our thoughts.
Phyllis

[SamsMomIAm]

Thank you for the warm welcome and advice. This has pretty much devastated us. We have an 8-month-old baby as well, and we thought this tumor was behind us.

I am currently seeing Dr. VanDerVeer of Carolina Neurosurgery and Spine. I know he did leave a small sliver behind, and he was just as shocked as I was it had regrown so fast. I would like to get some second opinions. I know House Ear Clinic is considered by many on this board to be the best. How do I get my records to them? Also, if I don't want to travel by plane, are there any places near me (the Carolinas) that are good? What about Duke University?

[ppearl214]

I hear Duke is good and UVA is top notch if you don't want to travel and want to stay East Coast. 

House Clinic can be reached via info below:

http://www.houseearclinic.com/losangeles.htm

Dr. Brackmann was very accommodating in reviewing my MRI (I sent to him in CD format) and called me 2x for follow up.  Even though I opted for radio-surgery (to occur in  less than 2 weeks from now), I found his info to be most helpful to me.

Based on what you wrote, certainly sounds like the residual decided to have a bit of fun, a bit too fast. We are all here for you... and we want you well for that little one you got!!!!

Phyllis

[Larry]

Hi Samsmom and welcome,

I have re-growth after 3 years from my op. If I read your post correctly, in 3 months the growth has grown 4.5 cm - THATS IMPOSSIBLE for an AN. they do not grow that fast. I am also suspicious re the Cat scan. to the best of my knowledge, the cat scans can't pick up AN's.

I suspect that what the cat scan has seen is the fat that was placed in the gap left behind by the tumor.

You need to have another MRI with the fat suppressant box ticked on the form (if its the same as in Oz). The radiologist reading the cat scan wouldn't be able to distinguish tumor from fat on the film. In fact, unless the MRI is set for fat suppression, the fat looks very much like the tumor. - How do I know, coz my #$%#@ ENT surgeon didn't put fat suppression on a follow up MRI that I had and it scared the living daylights out of me. I then had to have another one which at that time was clear.

However, these things can grow back but certainly not at the rate you indicated so its important to have annual follow up MRI's with fat suppression.

Good Luck


Laz

[Mark]

Hi Samsmom,

I would concur with Larry's comments completely. A benign tumor like an AN grows 2 mm a year on average. Are you sure the new growth is in CM and not MM? I would assume that there was a biopsy done when the initial tumor was removed and no malignancy was found, is that correct? I can't even conceive of the Cat Scan or MRI being that far off as the accuracy of those is typically with 2 mm error. It sure sounds like there is some more clarification or information to be verified on the size

Mark

[SamsMomIAm]

Yes, a biopsy was performed the first time around, and no malignancy was found (thank God). I am thinking maybe it grew so quick this time around because I started back on birth control pills in January. See, the reason it grew to the size it did the first time is because I got pregnant. Who knows? I asked my doctor point blank why it grew so much, and he have said he had no idea; it's just a biologically aggressive tumor. I wish I was making a mistake, and that it was mm and not cm, but the doc let me see pictures of my films. The thing is huge. HUGE.

I have emailed a doctor at Duke - John Sampson? Does that sound familiar? I feel like such a traitor going around getting second opinions because I like my current doctor, but I want answers and definite treatment options for how they are going to get it this time.

[Battyp]

Don't feel like a traitor!  You deserve to have peace of mind and if getting multiple opinions will do it then I say "go for it"!  Trust me they'd dot the same thing. 

[ppearl214]

You are certainly not being a traitor!  It's your body, not the dr's.  You have every right to take control of your medical care and do what you have to in order to ensure the best possible medical care you can get.  Unfortunatley, we end up being "demographics" to many dr's (not all but many) but in any medical situation such as our's, it's up to us to make sure we leave no stone unturned when it comes to our care.

... and as Capt'nDeb says..."that's my story and I'm sticking to it!"

Phyllis

[HeadCase2]

SamsMomIam,
  I recently had An surgery at Duke Univ. Hospital by Dr. Sampson.  I've emailed you separately, if you have any questions.
Regards,
 Rob

[Kathleen_Mc]

Don't give seeking a second opinion a second thought.
I was having my regrowth monitored by the surgeon who took out the tumor the first time for 5 years. From the time the regrowth was found he told me when I was ready socially he would remove the tumor if I wanted it out, even if it didn't HAVE to come out from the medical point of view. After 5 years of monitoring I asked to have it removed, I couldn't handle it psychologically anymore, the surgeon refused as "it's not medically necessary". I got another surgeon's opinion and although he agreed physically the tumor need not come out he understood that for my state of mental well being it did and he did the surgery.
Kathleen