Author Topic: 4 weeks post op update  (Read 2491 times)

kiwi

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4 weeks post op update
« on: April 14, 2010, 03:15:07 pm »
Hello

Just thought I would chime in with a four week update.
The positive things at 4 weeks are that I am back to work fulltime now and I am managing to walk my two dogs over the farm I live on.  This is a feat as it is hilly terrain and I am out for a hour in the evening.  I am trying to do all the things I use to within reason of course.  The Negative things is that I have developed a CSF leak which resulted in a big goose egg on the side of my head.  I had this for about a week and a half and then within 3 days it disappeared.  Saw my ENT yeasterday and he said while it is a good thing the egg has gone he concerned about Meningitis.  He is hoping that the leak will fix itself at this stage so it is a case of watch and wait.  I will see him again in a week.  Hopefully the fluid will stop coming out of my nose soon, and this would have just been a minor hiccup. The other options for fixing this leak don't sound too appealing. 

After having a large tumour removed successfully with minor facial issues and even less balance issues, this CSF leak has really got me angry and upset.  I thought I was done and dusted and the stress on myself and family were over but it feels like it is starting all over again.  I'm not sure if I can deal with this anymore, I know I have too.  I know people on this forum have dealt with worse than me and I really am in awe of how positive you all are after such physical and mental trauma.  Also my facial issues,although minor, are still taking its toll on me emotionally and I know its still early days but its really making me self conscious.  I have gone into hibernation for now, which is quite easy to do from where I live, also I work from home so I dont have to socialise with anybody.

Well now that is out in cyberspace I feel a bit better, thanks for listening.

Jacqui
3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010

Jim Scott

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Re: 4 weeks post op update
« Reply #1 on: April 14, 2010, 04:07:40 pm »
Hi, Jacqui ~

Thanks for your comprehensive four-week post-op update.  Overall, you seem to making an excellent recovery - with the exception of the CSF leak, of course.  I can understand why that would be upsetting at this point.  I can recall that, at 4 weeks post-op, I was just getting back into my normal routine and developing a CSF leak would have been depressing.  I can only hope (and pray) that your leak resolves by itself.  Your self-consciousness is also easy to understand.  That you're able to work and regain your abilities in privacy is a benefit not everyone can enjoy, so you're fortunate in that respect.  I think you're going to be O.K. Jacqui, but, as always, it takes time and the requisite patience.

Thanks again for the update and we hope to see more in the weeks to come.  :)

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.

Tod

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Re: 4 weeks post op update
« Reply #2 on: April 15, 2010, 06:02:03 am »
Jacqui,

My surgery started on the day your tumor was diagnosed and so I am coming up on almost nine weeks post. I certainly understand where you are coming from on the self-consciousness issues. The left side of my face was completely non-responsive for seven weeks and I have both swallowing and speech issues. Going out in public was not high on my list, eating in public was not even on my list. Fortunately, I gave in to the inevitable - I was out doing multiple appointments with my wife and I got hungry. It turned out to be a successful experience and led to more such experiences.

What I am saying is "give yourself some more time." This healing business is actually hard work. The way I understand it, you have had less than nine weeks to adjust to having a brain tumor, and only four weeks to heal from surgery. Give yourself a break and celebrate the little things..

Celebrate that you can walk your dogs all over your farm. Seems a pretty good and happy thing to me.

Celebrate that you are back to work. I am teleworking some, but it looks like I have at least another month before the doc cuts me loose...you are doing well.

Every step you make towards recovering your pre-diagnosis life is cause for celebration.

You are doing well, just keep at it.

Best of luck to you,

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.

kiwi

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Re: 4 weeks post op update
« Reply #3 on: April 15, 2010, 02:56:52 pm »
Thanks Tod for your encouragement and thanks for the smile you put on my face when referring to the date of my diagnosis.
We from downunder write the date DD/MM/YY, so I am sorry for any confusion.  I was diagnosed 2nd Dec 2009.  My surgery was postponed - twice - over the course of our summer.

You are right though I need to get out and get going....so my mum is taking me out on Sunday for lunch! This will be interesting.

Jacqui

3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010

Tod

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Re: 4 weeks post op update
« Reply #4 on: April 15, 2010, 04:44:35 pm »
Darn Jacqui...I write it both ways...but only if I spell the month out. ;-)  Even then, there has not been that much time since diagnosis. My MRI was on new year's eve...I'm still sorting through things. From what I have read, many folks here  oftentake a good long time to come to terms with a brain tumor.

So, just be good to yourself.

-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.

Lizard

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Re: 4 weeks post op update
« Reply #5 on: April 15, 2010, 07:41:48 pm »
Great to hear from you and hoping that you keep progressing, don't forget to listen to your body when it tells you to slow down...but its also great that you are out there challenging that balance!

Congrats on 4 weeks!  Looking forward to hearing when that blasted CSF leak is healed!  Been there, at least you aren't experiencing the spinal headache  :D
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

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