Author Topic: 5 week update and a few questions...  (Read 3844 times)

sarahinPA

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5 week update and a few questions...
« on: September 01, 2011, 01:56:22 pm »
Hi Everyone!

I want to start out saying Thank You once again to everyone here that has answered so many questions of mine and given such encouraging words to me through this process, you all have been a blessing to me!

Tomorrow is 5 weeks post op, im feeling pretty good, with some minor aches and discomforts. As you all know, I am now SSD, and this hasnt been too much of an adjustment for me, but the tinnitus does get kinda bad when I am in public like at a retaurant. I have seen that some people use ear plugs to help with this, What ear do you put the plugs in? The AN ear or the good ear? and does this help??
Im having the numbness in my ear, and its mostly manageable, and soemtimes I can ignore it, which is nice.

I am having slight discomfort on the AN side of the head, incision looks great and no infection, but slight soreness kind of all over. Didnt have this right out of surgery, and am hoping its just healing and hope it will go away over time? The past 2 days my allergies have been bad, leaving me to sneeze like a million times, sneezing led to pulling of the muscles in my neck/head, causing some pain and discomfort in the incision area...this stinks!

my neck is still sore, but  i stretch it as much as possible, to help work those muscles that extend into my head, near the AN site to help with this.

I have been getting headaches that remind me of a head cold, they intensify when i change sitting to standing, but go away or get better with movement. Doc doesnt seem to think its a big deal, and has ruled out CSF leak for me. Trying to keep myself moving, as my legs still hurt and my underarm from laying on the table for 12+ hours during surgery, but stretches are helping.

IF anyone has any suggestions on how to strengthen the neck musles that lead to the back of the head mucsles, id be hapoy to hear, I feel most of the discomfort is coming from the tightness of these muscles as they readjust and heal.


Sorry for the long message, ive got a lot going on I feel!


PS. how long was everyone on lifting restrictions and activity level? My family has a camping trip scheduled for end of september (ill be 2 months post op) and Id love to be able to float down the river in my kayak that weekend.

Thanks!!! 
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

CHD63

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Re: 5 week update and a few questions...
« Reply #1 on: September 01, 2011, 03:21:21 pm »
Hi Sarah ......

So glad you are feeling well enough to consider kayaking at two months post-op.  Everyone is so individual on when it is OK to resume normal lifting/strenuous activities.  Because you have had a somewhat complicated recovery, I would call my doctor if I were you, just to make sure he/she feels you are sufficiently healed.  The last thing you want to do is precipitate a CSF leak.

As for the earplug ..... even before I was totally SSD, I had my audiologist custom fit me with a musician's earplug for my "good" ear.  I have an Etymotic.  See:  http://www.etymotic.com/hp/erme.html  I even have a funky colored one, just for fun.  Mine has a 15db filter and that is perfect for me, but you can also get 9 or 25db filters.  I carry it in my purse and put it in my good ear immediately whenever I am in a noisy environment.  I even used it in the plane when flying a couple of times since surgery.  I am so concerned to maintain the health of my only good ear, that I am probably overly cautious, but it is an easy thing to do.  The two absolute worst places for me are in noisy restaurants and movie theaters.

Sorry about your continuing neck muscle issues.

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

Cheryl R

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Re: 5 week update and a few questions...
« Reply #2 on: September 01, 2011, 05:15:46 pm »
Sarah, I don't see why you couldn't kayak if it something you are used to doing.    Just have someone else carry it to the water and be careful b
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Cheryl R

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Re: 5 week update and a few questions...
« Reply #3 on: September 01, 2011, 05:20:38 pm »
Sarah, not sure what made my reply go nuts.     Just watch the bending and straining and I assume you don't mean white water kayaking.        I'd be careful if a real windy day.     The paddling might be a bit hard on the neck if you have a one person kayak.         My husband has a one person one so have seen it being done alot.       If you are concerned then do ask your dr what he thinks.                           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

mk

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Re: 5 week update and a few questions...
« Reply #4 on: September 01, 2011, 07:22:19 pm »
Sarah,

I also had the sore neck and discomfort around the incision area. I felt very uncomfortable because of this for at least a couple of months post-op, and it caught me entirely off guard, since I hadn't really read about this and I didn't realize that it could happen. My neck was so sore that I couldn't move my head to the sides fully, and this prevented me from driving, even though I didn't have any balance or dizziness issues.
Anyway, I think that it is a combination of the muscles/nerves healing (remember that they were cut during surgery), together with the positioning during surgery which traumatized the rest of the muscles (my arm and shoulder were also very sore). Ibuprofen didn't work for me, but I found that Aleve took the edge of the pain. I used ice packs for the nerve pain on the back of the head, and warm compresses for the shoulder. I also bought a memory foam orthopedic pillow.
At 3 months post-op I was feeling much better. I can still feel my muscles pulling even now, and the incision area is tender - But from what I have read on the forum it can take up to a year for the nerves/muscles to heal. As always with these surgeries, patience is the key. You are still only 5 weeks post-op, so you will start seeing many improvements as time progresses.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

sterry

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Re: 5 week update and a few questions...
« Reply #5 on: September 08, 2011, 07:26:41 pm »
I get full body massages every two weeks, before surgery and now after.  I think being SSD makes me turn me head a neck a lot! And it sure helps :)
Susie
Left AN 3.7 cm. 10-23-09 
HEI Dr. Friedman, Dr. Schwartz
Translab
Doing well

leapyrtwins

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Re: 5 week update and a few questions...
« Reply #6 on: September 10, 2011, 07:01:25 am »
PS. how long was everyone on lifting restrictions and activity level?

Check with your doctor.  Different docs have different rules.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Rivergirl

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Re: 5 week update and a few questions...
« Reply #7 on: September 10, 2011, 08:45:46 pm »
I am 4 months post op and bending causes more head and neck pain. I limit myself on the lifting part, the brain is a tender thing I am taking my time with the strenuous activities.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!