Nancy L - home after 8/6 retro at House Clinic / St. Vincent's

[sgerrard]

Well okay then, now you are really a postie! 

Steve

[NL]

Hi Everyone,

Thanks so much for all of your replies and continued postive thoughts!

I'm happy to report that my recovery seems to be back on track. I really think the "bad day" I had last week was just that - one bad day. Maybe it was just my body letting me know it will now react differently to meds, or just clearly defining to me the limits of my activities!

I have to say that because I'd been doing so well, I was a little hestant to post the set-back. But once again, I felt that it's the combined value of ALL experiences, good and not so good, that makes this forum such an incomparable resource for all ANers. (Cindy - just knowing that I gave you a possible "heads-up" on your migraine med made it worth posting!)

Having my stitches removed after being in for almost 2 weeks made a world of difference! I realized that the "tightness" I felt in my neck at the bottom of the incision was from the stitches pulling tight where there had been a slight swelling (the reason they kept them in a little longer than usual). It wasn't painful, just tight. As soon as they were removed, I could roll my head around and turn my head from side to side freely - and it felt great.

I was also able to go back to the firmer and thinner "cervical neck pillow" that I always used pre-surgery. It's so much easier for me to sleep through the night when my head and neck feel properly "aligned." (Just a note to others prone to headaches - I started using this pillow about a year before surgery, and it completely stopped the "early-morning" headaches I used to get!)

The biggest boost I got was the "hair improvement." For two weeks I had to apply antibiotic ointment to the incision twice a day, so after shampooing I'd just tie up my extremely curly (unmanageable!) hair into a one-sided frizzy ponytail. Now I could lose that look and actually wash AND style my hair! I've finally started to look and feel like someone I haven't seen in two weeks.

The doc said I could start driving as soon as I could turn my head from side to side and back up without feeling dizzy, and at this point I'd be able to do both.  But even though I'd be "medically" OK to drive, I'd be very afraid that as soon as I arrived at my destination, I'd have to curl up in the back seat and take a nap. So for now I'll just be happy to take a walk or two through the neighborhood, and I'll just save that tank of gas for another week!

Wishing everyone the best with their recoveries, follow-up results, and decision-making!

Hope you're all having a great weekend,

Nancy

[Debbi]

Hey Nancy- always good to read your progress reports!  Glad your bad day was just that - one bad day.  We all get them, but that doesn't make them any easier.

Glad you got the stitches out - that's a big step in recovery. I took my first spin in the car (up and down the block) at about 2 weeks, and then didn't drive again for at least 10 days.  Even though I was "medically" okay to drive, I just didn't feel up to it.  As you said, I was concerned that I'd get somewhere and be too tired to drive home.  You'll know when you are ready - no need to rush it.

Hope your recovery continues to go well, Nancy.

Debbi

[wendysig]

Hi Nancy -
Glad to hear you're feeling better and finally got your stitches out.  I didn't have any external stitches, but for some reason, still can't turn my head very far  to the left -- guess I'll have to ask the doc about that.  Anyway, getting back to you -- I'm very happy for you that your recovery seems to be back on track and hopefully the rest of your recovery will be uneventful.  You will know when you are ready to drive.  I went for a short drive at about three weeks and loved the sense of freedom it gave me but decided I will only drive when I really need to until I can turn my head more.  You'll know when you're ready to drive and see for yourself how exhilerating it feels to be behind the wheel again!

Best wishes
Wendy

[Omaschwannoma]

I just read your recent post and sounds like you are healing just fine.  Glad you found your headache issues are easily dealt with and I hope they go away for good!  What is the name of your cervical pillow, this sounds interesting?!  Wishing you great health and quick recovery doing what you were able to do b.s. (before surgery)!  

[NL]

Hi All,

Today marks three weeks since surgery, and I have to say that the last few days have been my best so far. The first week home I felt like I had the sleeping pattern of a newborn, the second week was more like that of a toddler's, and yesterday I only needed one extended nap - so it feels like a little progress on the fatigue front.

Debbi and Wendy - You made me realize that I don't have to have a real destination just to take a drive! I wanted to do something new (at least new as a postie) to celebrate the three-week mark, so after reading your posts, I took a drive around the neighborhood (accompanied - I'm not ready to fly solo yet) at a nice leisurely pace. Total distance travelled - 1 1/2 miles...baby steps! Thanks for the idea of just taking it out for a mini-spin.

Karen - The pillow I use is made by Tempur-Pedic. I picked it up at Bed, Bath, & Beyond, but here is the T-P website so you can see what they look like. The one I use is the "neck pillow" in the second row. They come in two sizes depending on your height, so they'll fit properly under your neck. I find it's especially useful if you're a "side" sleeper.

http://www.tempurpedic.com/pillows/
http://
I go back to the doctor tomorrow to see if there's any real sound coming in on the AN side, or just what I "think" I'm hearing. Either way I'll hang tough for a while to see if anything changes in the next few months. If not, I'm prepared to go BAHA! (I heard they even have connections for MP3 players - anyone familiar with that?)

So thanks for your support, as always.

Hope everyone else is doing well!

Nancy

[Debbi]

Nancy-
So glad you are continuing to feel a little better each week!  The recovery isn't fast enough to suit most of us, but it pays to remember that each day bring some new, although small, step towards the "new" you!  Thanks for continuing to post with updates - it is so good to read about other's journeys.

Debbi, cheering you on from NJ

[NL]

Hi Everyone,

I don't have much of an update - but that's better than another setback!

The doctor says to wait another week before resuming "normal" activites, but didn't specifically mention exercise. I've been afraid of overdoing it again and have been taking it pretty easy, but I'm looking forward to getting back to my pre-surgery workout - mostly hiking and Pilates.  I'd been "in training" for the surgery beforehand - and that was a great motivator - so now I'll just train for getting back to regular life! But I really think because of this journey it'll be a better life...because I now have new friends , different priorities , and I'm done deciding on a treatment! 


Hey Debbi - You're right that it's so good to read about other people's journeys - it's one of the great things about this forum.  When I was going through my decision-making process last May, you were posting your first few weeks post-op.  It was amazing to me - one day you were going in for surgery - and a few weeks later you were driving down the highway! Your positive attitude and energy (though you warned about fatigue!) were so encouraging to me as I considered surgery. Sometimes we have no idea how many others we may be helping by sharing our stories. I really appreciated you sharing yours!

Sending lots of good thoughts to all!

Nancy   

[JerseyGirl2]

Hi, Cheri,

I arrived in L.A. the Saturday morning (1/5/08) before my Wednesday (1/9) surgery and returned home on Saturday (1/19). We stayed at Seton Hall through the 18th, and spent that last night at one of the hotels near LAX since we had an early Saturday morning flight back to New Jersey. I was ready to come home at that point.

You mentioned "referrals of local docs for follow up appts." -- House didn't do that in my case (I already had a local otolaryngologist), so I'm not sure of their policy. Frankly, the "follow-up appointment" with my local doctor consisted of a single 5-minute visit a couple of months after my surgery during which he complimented the skill of the surgeons, said my scar and the recovering BAHA implant site looked just dandy, and that he would handle the 12-month MRI prescription. End of visit.

I'll reply to your PM a little later today. Take care and try to relax as your surgery date approaches.

Catherine (JerseyGirl2)

[JerseyGirl2]

Cheri,

In my last message I should have added the comment that I'm sure your doctors won't release you for a return flight home if they don't feel you are ready! You'll have appointments with all your doctors on the day prior to your scheduled return home, and, of course, they'll be visiting you every day that you're in the hospital. During the time between your release from the hospital and your return home -- when you'll be staying at Seton -- it's very comforting to know that the hospital and Clinic are very close at hand!

Catherine (JerseyGirl2)

[NL]

Hi Cheri,

As Catherine said, the doctors won't release you to go home unless you're ready. And others would know better (since I do live in LA), but it seems most people are told to stay at least ten days after their surgery. I would just plan on whatever Dr. Friedman suggests and you'll be fine.

As far as my own experience goes, the headache I had at two weeks was a bad migraine (now I think brought on by doing too much), but proper migraine medication would have stopped it from getting to the point that it did. If you have a history of headaches,, you can always talk to Dr. Stefan at your pre-op about what to take (or what he can prescribe) should the same thing happen. (Not that it will but it never hurts to be prepared!)

And glad you like the pillow! I wasn't sure I was going to keep it at first either! It turned out to be worth the cost, but I held on to the receipt for a few days (or should I say nights) until I was sure!

Nancy

[vcschaub]

I arrived in LA on Sunday. Had my preop visits on Monday and surgery on Tuesday. I left the hospital on Saturday. My husband stayed at Seton while I was in the hospital. When I left the hospital we stayed at a hotel in Westwood. I had my stitches out the following Wednesday and flew home on Thursday. Sooooo, I was in LA for 2 days before surgery, five days in hospital, and five more days until I left, so a total of 12 days.

[cindyj]

Hey Nancy, Catherine, Cheri and vcshaub,

All this House talk is so informative and helpful.  I'm taking it all in.  As I told Nancy, my husband is going to stay at Seton and my mom at a nearby hotel.  I will join my mom in the hotel after my husband leaves a few days after surgery...maybe.  Vcshaub, what hotel did you stay at in Westwood...is that on the outskirts of LA?   

Think I need to go get one of those pillows you guys are talking about!  But sounds like a may need to take out a small loan for it???

Thanks for letting us invade your post, Nancy!

Cindy

[Kaybo]

Cheri~
An otolaryngologist is just a fancy name for a plain ole ENT - it took me a year to be able to say that word so I throw it around any chance I get!!   

K

[NL]

Cheri and Cindy,

Though I love my tempur-pedic neck pillow, it felt much too firm for the back of my neck when I was in the hospital. I brought it with me and tried it the first night in my room, but since the back of my neck was sore from surgery (remember I had a retro), the only pillow I could get comfortable with was a soft feather-type one that I could mold around my neck. They also keep the back of the bed raised slightly so you're not laying flat, which helps. I think most people feel a little more comfortable sleeping slightly propped up - I know I used a couple of soft pillows for the first week or so at home, too.

Cindy - I picked up my neck pillow for about $80, thanks to the $20 off coupons that are always coming in the mail from Bed, Bath & Beyond (or Bird, Bath & Beyond in post-op speak).

Cheri - Hope you're able to find a local neurotologist for your follow up visits. You're right that ENT's don't specialize in AN's. I've personally found that some know a lot less about AN's than the average AN patient. I had seen two different ENT's several times each during the year and a half before my diagnosis to try to find the cause of what began as fullness in my ear, along with tinnitus a few months later.  After I learned they could be symptoms of an acoustic neuroma and mentioned it to one of them, he said there was no way I could have an AN since my hearing was so good! Both ENT's were absolutely shocked when I called to let them know my MRI results (finally ordered by my PCP). They said they'd never considered an AN without significant hearing loss.

Someone once said on the forum that we need to help educate ENT's about AN's - I completely agree and I'm trying to do my part!

BTW - I've been driving around town for the last week or so, but today drove for the first time on the freeway...aahh!!

Nancy