Author Topic: 23 y/o 1 week post op translab on 4x4x4cm AN  (Read 4918 times)

flmd

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23 y/o 1 week post op translab on 4x4x4cm AN
« on: December 12, 2011, 07:52:11 pm »
Hey everyone! I just had my translab last Monday to remove my 4cmx4cmx4cm AN. Everything went extremely well despite the 14 hour operation. I was in a whole lot of pain the first few days post op, but that has dropped off significantly and I'm not even taking the Tramadol they prescribed for me at home here anymore.

I initially had some facial weakness and numbness on my right side (my right ear was the affected ear), but I've noticed a dramatic improvement and I can't even really notice and numbness or feeling deficit on that side anymore. I was really worried at first that I was going to have horrible balance issues after the surgery (and facial paralysis), but it is not nearly as bad as I thought it would be. I don't have dizzy spells or anything and I can walk in a straight line; the nurses actually had to tell me to slow down when I was up and about on the floor because I was going too fast lol. I will say that walking feels funny...it's hard to describe but it just feels like something is missing, although like I said my balance is pretty good despite the fact that I have to correct myself every now and then. I have to be a lot more conscious of my steps now than I ever was before the surgery, but everyone who has seen me walk cannot believe that I'm only a week post op. I saw my nursing instructors today at a Christmas party for my college's Student Nurses Association and they all were in disbelief at how well I am functioning.

I had my surgery at Jackson Memorial Hospital in Miami and my physicians were Dr. Jacques Morcos and Dr. Fred Telischi. They were able to remove just about all of the tumor except for a tiny sliver they left on the facial nerve, which I was told beforehand that they might have to do to leave my facial nerve intact. I am very happy with both of the physicians and the job that they did. They didn't even have to give me a blood transfusion despite the long surgery.

Overall I feel really good and I haven't been suffering any headaches or common complications I was told about (e.g. CSF leakage). I've been taking my decadron religiously and I'm following my discharge instructions to the letter. Well, that was my experience. Feel free to ask any questions and I'll do my best to answer them.

mindyandy

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #1 on: December 12, 2011, 08:38:22 pm »
Glad to hear your doing well. Welcome.   
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

CHD63

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #2 on: December 12, 2011, 09:45:19 pm »
Hi flmd and welcome to this forum .....

It sounds like you are doing incredibly well.  Congratulations!  You sound highly motivated and that is half of the battle during recovery.  Be sure to listen to your body and rest between the activities.

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

Tod

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #3 on: December 13, 2011, 05:52:08 am »
Always thrilled to read about such good outcomes!

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

flmd

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #4 on: December 13, 2011, 09:22:04 am »
Thanks everyone! I was initially a bit leery of choosing Dr. Morcos and Dr. Telischi as my surgeons because I read some other people's experiences with them here on this site, and I think one person even ended up with permanent facial paralysis as a result of their surgery with them. But I put those concerns behind me and went into the operation with a "whatever happens, happens, and I'll deal with it" mentality.

The nursing care at Jackson Memorial was a bit spotty at times, and for some reason they transferred me from the PACU to the neuro floor without any pain orders. The new neuro resident on call said I that I shouldn't be in that much pain, but it turns out that I was in 9/10 and 10/10 pain for the first day contrary to their expectations. After something like 4-6 hours of me writhing there in excruciating pain, he finally deigned to come into my room and to listen to me, but even then he seemed really dismissive about my pain and me and the nurse had to pretty much strong arm him into prescribing me IV morphine PRN and 2 percocets every 4 hours.

Also, communication was a bit difficult as I got all foreign born nurses so there was a lot of runaround and miscommunication whenever I needed to talk to them. I understand it's Miami and so that's expected, but I really would have liked a native English speaker as a nurse at least once.

I'm getting my stitches taken out in 2 days, and I plan on being back in nursing school in early January. I have to see what proscriptions and limitations the doctors impose on me first. I would really hate to have to wait until the fall semester before I get back into school.

Kathleen_Mc

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #5 on: January 01, 2012, 04:58:07 am »
Sorry to hear of the poor nursing care you received, I myself have experienced this with many of my surgeries and it's disheartening that my "peers" are as such. It is often said by doctor's "you shouldn't have that much/any pain" but pre and post op......I'd like to put an AN in them and give them surgery and see what they say then!
Glad to hear of your speedy recovery, all the best
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Jim Scott

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #6 on: January 01, 2012, 02:56:33 pm »
fmld ~

You appear to be making a great recovery, which is not terribly unusual but always welcome to read about any AN post-op patient. I'm pleased to learn that you've come through your AN surgery quite successfully and that your pain has greatly diminished.  I hope your plans to return to nursing school this month will prove feasible. As for your sub-par nursing care, I'm sorry you had that experience (a medical staff with poor English skills seems to be a problem waiting to happen) but I trust that being a patient receiving less than optimal nursing care should help you better empathize with the patients you'll be caring for one day.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

maryh

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #7 on: January 02, 2012, 11:33:23 pm »
Congrats on having a successful post-op experience so far.

I would recommend you connect with a speech therapist (or other therapist) and inquire about using a handheld machine called VitalStim.  This machine has electrodes that can be put on your face to stimulate and strengthen the facial nerves.  The therapist I worked with did this within the first month of my surgery (which he said was the best time to do it) and it improved the facial "droop" on the left side of my face significantly.  I live on the West Coast so I am not much help in referring you to someone in the area where you live.

There is some controversy about the effectiveness of the VitalStim.  For me, I definitely think it was a help.

Best of luck,
Mary
4 cm acoustic neuroma, surgery 7/2011 in Seattle, WA with Dr. Kyle Kim and Dr. David Mehlum. Hearing loss in left ear. Facial droop resolved.  Lots of post-surgery complications-csf leaks, bacterial meningitis, blood infection, peritonitis caused by infected lumbar shunt (which was removed)

Mei Mei

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Re: 23 y/o 1 week post op translab on 4x4x4cm AN
« Reply #8 on: January 10, 2012, 09:28:13 pm »
WElcome to the Forum!   You are incredible with your comeback from a very difficult and long surgery.
Keep posting and let us know how you are doing.    Remember to take baby steps in getting back.

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh