I'm new and a little confused and in PAIN

[gabesgourmet]

Hi everyone-
On Feb. 3 I underwent acoustic neuroma surgery with the translab approach for a 3.5 cm tumor that was compressing my brain stem.  There were some complications and this surgery that was supposed to only take 6 hours ended up taking 12.  I was in the ICU for 7 days amd them went home after 2 days on the floor.  It has been a tough recovery.  I had some facial paralysis on the right side, but I have been working REALLY hard and doing exercises to try to get back to my pre surgery smile,eyes, crying, laughing etc.)  I am marrying my best friend on November 19...he has been a rock throughout all of this and I want to have my smile back for sure!  I also have neuropathy and ulnar nerve palsy in my right hand due to the surgery.  Also ever since the surgery, it has felt like I have had the world's worst ear infection in my right ear.  Doctor's (Neurosurgeon AND Otolaryngologist) have told me oh pain, even  really BAD persistent pain is ok, take some medicine and give your body some time to heal.  So those are the first issues with surgery which was a little shy of 3months ago.

So this past week April 12 I underwent the BAHA surgery. I had read everywhere what a breeze this surgery was.  So thinking ok, I can do this, the first surgery sucked...this one is gonna be simple as all get out!! So keeping the idea that I would regain hearing, i was looking forward to the procedure. However, I have had a horrible recovery!!!! I have a massive amount of swelling (in fact the swelling is so much it is overlapping the abutment,) I have a nasty infection (even though I am doing EVERYTHING i was told to do) and I am in a LOT of pain. Let me reiterate...MASSIVE head swelling...think Elephant Man light.  Any suggestions?? I havea horribly lumpy head, and right now the abutment sight looks like a tufted pillow- a gross oozing tufted pillow.

I went to my doctor yesterday (he is the same Otolaryngologist who assisted in my AN surgery.) My doctor's response was ooh that's pretty nasty, I bet that hurts a lot. He gave me a topical ointment and has me coming back in beginning of this next week to see how it looks and see if he needs to give me stronger antibiots and to change the skin thinning? to help the swelling. Um...I don't like the way that sounds and what the heck does that mean??? I need help-I have been in pain now well...for a long time. Before the surgeries b/c of the brain tumor...after the first surgery b/c it was such a rough procedure and now from this surgery (and some holdover bone graft pain from the first procedure.) What it boils down to is I'm really tired of hurting. I am grateful that there is something that will help me hear again, don't get me wrong...I really am grateful...I'm just miserable. I hate sounding whiny I just hurt and hope somebody can help.  Sorry I whined my way thoug this post! 

Jamie

[Jim Scott]

Hi, Jamie - and welcome.

Boy, you've really had a rough time of it!   I'm very sorry to learn that you experienced post-op complications and pain and now have problems with your BAHA surgery site.  I don't have the BAHA and didn't experience the same kind of post-op issues you're facing so I can't offer any practical advice.  Besides, you're under the care of a doctor, although he seems a bit nonchalant regarding your pain.  I wonder how sanguine he would be if it he was doing the suffering?   

I trust that our compassionate, knowledgeable members will add to this thread to offer you welcome, support and advice.  Please don't feel the need to apologize for not wanting to hurt.  Who does?  Besides, if you can't vent here, then where?  I truly hope your pain can be addressed and lessened or eliminated, soon - and I wish I could do more to that end but I'll add you to my prayers, as will others - and that is no small thing.

Jim

[Kaybo]

Hi Jamie!
Welcome to our happy little family. I don't have a BAHA (maybe some day) but your initial surgery story sounds similar to mine! Where did you have your surgery? Is it a big place that has a lot of experience with AN's & BAHA's??  This certainly doesn't sound typical....nor a typical response...

Feel free to vent here...hope you get some relief soon!

K

[leapyrtwins]

Jamie -

sorry to hear you have issues from your BAHA surgery; this is not the norm and it's disappointing that you have to go through it.

BAHA surgery is typically a very easy surgery - I had mine with local anesthesia - and the recovery is typically easy as well. 

I hope your doctor's suggestions help and that you heal very soon.

Best,

Jan

[Rivergirl]

That is so horrible, what strength you have to keep putting one foot in front of the other and get through this, my prayers to you.

[cobbler]

Hey Jamie

I feel your pain! My neuroma surgery was a breeze - no pain. My main complaint was and still is, the dizziness. It is getting better with time. We tend to forget that this is major surgery and it does take time for our bodies to respond.
I had my abutment placed at the same time as the removal. I had the abutment uncovered 2-17. I have had nothing but pain and swelling. I know what you mean by elephant man! My head is lots of lumpy bumpies. Makes it very hard to sleep as there is not a comfy place to lay your head. This is my third round of different antibiotics. I do trust my doctor, but apparently there are not too many people that have problems with the BAHA so I have to wonder if they really don't know how to handle it?? I plan on calling the Choclear people in the morning and see if they can shed some light for me.

I know how frustrated you must be! Try to stay positive. It is difficult, but I think in the long run, things will be better. HOPEFULLY we will look back on this as just a really long bump in the road called life.

[moe]

Hi Jamie and Welcome,
Yep sounds like you have had a very hard recovery and the BAHA to boot. I'm so sorry to hear that.

About the BAHA~ I would imagine it is just a wait and see king of thing with the antibiotics. He should have given you oral antibiotics too! (My personal opinion). Not much you can do at this point except watch that site, and call them if it starts hurting more or gets more swollen,reddened (fever too).

The first year of recovery is slow and steady with bumps in the road, so keep the faith and you will be good to go down that aisle in Nov. My first year was tough (actually my first few years were tough!), with the facial issues and eye procedures.

Don't be afraid to come here, vent, whine. That is what this forum is for! We support you, and you will soon find yourself supporting others.

Hang in there
Maureen

[CarolineO]

Wow, it sounds pretty frightening.  I have read that there are times
when a person can get infections.  What state are you in?  Perhaps you
could get a 2nd opinion?

My daughter had her abutment implanted in February.  She has not had
any infections (thankfully).  Did your doctor give  you an Oral and topical
antibiotic?

I hope your pain will stop and the swelling will heal.  You are in my thoughts.

Caroline