Author Topic: Getting out of bed  (Read 9873 times)

SDTom

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Getting out of bed
« on: September 21, 2013, 02:51:16 pm »
Let me start off by by saying I'm not thinking of taking my life or even close to it. What I am talking about is movement. When I am lying in bed and with very little movement I almost feel normal. When I move at all I am reminded that I am far from normal. How do I do something that I know will be unpleasant? (dizziness) I will have to say that my problems pale in comparsion to some. My wife and children are supportive and I currently am on SS because of my wifes efforts.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

CHD63

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Re: Getting out of bed
« Reply #1 on: September 21, 2013, 03:40:48 pm »
Hi SDTom .....

Many questions for you ..... but first of all, are you pre or post treatment?

When one of the vestibular nerves is compromised, the other one must take over.  The brain rebels at this.  Depending upon your situation ..... e.g. if one of your vestibular nerves was already removed ..... the more you exercise (as in walking, for instance), the more quickly your brain will accept the one-sided vestibular function.

Let us know more about your particular situation.

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

CHD63

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Re: Getting out of bed
« Reply #2 on: September 21, 2013, 03:47:02 pm »
I should have looked back at your previous posts before replying ..... sorry!

You have had a rocky road along this AN path.

I can identify somewhat (see my signature below).  I know that the more I exercised, the better the disorientation became.  It is really tough to make yourself get up and move when everything seems out of control.

Are you (or have you) taking any therapy from a trained vestibular therapist?  I took therapy for months because I have no functioning vestibular nerves.  I still revisit my exercises from time to time, as needed.

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

SDTom

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Re: Getting out of bed
« Reply #3 on: September 21, 2013, 04:20:51 pm »
Hi Clarice,
Thanks for your response. I have had physical therapy but I don't believe the person had specific vestibular training. As I said before I don't think my situtation is as bad as some others - I am just not dealing with it as well I as I should.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

Tod

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Re: Getting out of bed
« Reply #4 on: September 21, 2013, 05:47:29 pm »
Tom,

You have clearly had a rough journey.  Let me suggest that the most fundamental thing you can do to improve your balance, and possibly your life, is to walk. Walking upright is dependent on the vestibular functions, and the more we walk, the more those develop. Daily walking can do wonders...it certainly did for me. As you say though, getting out of bed is the hardest thing to do.  All you can do is force yourself and try to develop some coping mechanisms, such as finding a local horizontal line in your bedroom to allow your brain to orient itself. It might be worth it to have someone run a straight line of blue or green painter's tape midway or higher up the wall, so that you can rapidly find it each morning. That may help.

The most important thing to do is this. Get out of bed even when you know it is going to suck. Eventually it should suck less.

Hang in there.

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.

SDTom

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Re: Getting out of bed
« Reply #5 on: September 25, 2013, 08:31:55 am »
Hi Tod,
I think your advice is good. I think part of the problem is I am not as ambitious as I thought I was. It is a lot easier to feel sorry for myself than to do something that I don't see results from right away (if at all). Hopefully that part will improve with time.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

Sheila1977

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Re: Getting out of bed
« Reply #6 on: September 25, 2013, 08:03:32 pm »
I had such a hard time seeing improvement, it starts out so frustratingly slooooooow.  So I started looking back using the day of surgery as the benchmark.  As each week, then each month passed, I could see how definitely there was improvement and all I could do was wait for it.  So I recommend doing everything you can do, eat healthy, walk, rest and start moving when you are able to, but be patient with your progress.  Hoping you will find improvement soon.
s
7mm AN June 2011
Almost doubled in July 2012
Translab Sep 2012 at Kaiser San Diego

Tod

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Re: Getting out of bed
« Reply #7 on: September 25, 2013, 08:56:41 pm »
Tom,

Feeling sorry for yourself can become a bad habit. The same is also true for wanting to see results immediately. Remember, you are in this for the long haul - your life.

I am three and a half years post surgery, 18 months post radiation, and I still see improvement. And people still comment on ongoing improvements in my voice. Last week at my board meeting, a lobbyist commented that I sounded back to normal. My sister mentioned it multiple times this evening on the phone. I still get discouraged occasionally as I am tired of coughing every single day,but I just am not ready to give up.

Hang in there.

-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.

Gloria Nailor

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Re: Getting out of bed
« Reply #8 on: September 27, 2013, 09:53:03 am »
Stop downplaying your situation, there is always someone worse off than you but that doesn't mean your situation is easy to accept or you have no right to grieve.  We have all lost a part of ourselves in this ordeal, but I have gained other things instead.  I don't mean you should wallow in your emotions but accept them and deal with them.  I only have minor balance issues so I can't totally understand how you feel, but I do know that once I accepted the "new me", life became much easier and I became happier. I hope you can find someone to help with your physical issues. It can be discouraging at times to deal with them, hang in there!
4/2011 diagnosed with 3 cm AN on right side
6/15/2011 retrosigmoid craniotomy which resulted in SSD, severe facial paralysis
7/2011 gold weight placed right eye lid
5/2012 tarsorrpapny right eye
6/2012 woke up with a smile
1/2013 cranioplasty because a screw came out of my head!
6-7/13 regrowth, GK

SDTom

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Re: Getting out of bed
« Reply #9 on: October 03, 2013, 09:16:48 am »
That is encouraging to know things might improve. I think I having the hardest time accepting that what I have today may be as good as it gets. Once I  am able to move past this point things should get better.
I will have say that the little bit I have been able to help others is very satisfying. Unfortunately I don't know as much I thought. 
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

MDemisay

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Re: Getting out of bed
« Reply #10 on: October 03, 2013, 02:13:07 pm »
Dear SDTom,

That is the key! To be able to help another makes us forget about ourselves for a while, and that makes this consarned journey that much more bearable...It is helpful to help someone else even if you can't help much, you still can type and read and understand.

Now there are a great many more people with symptoms like your own who have been down the incredibly difficult path you must be on, I myself have said why get out of bed today, but as the days wore on I realized that it started with me, if I didn't do it, no one was going to do it for me! You CAN DO IT!

Start with small goals like getting out of bed, then move to longer and longer periods out of bed, then out of the room, then out of the house, you'll soon discover that you'll get your land legs back and you won't feel so dizzy.

Small steps at first, then bigger, then bigger.  It takes a while till you get your confidence back.

You'll be in my prayers tonight.

 Listen to Tod, Gloria and Sheila they have good advice here.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

SDTom

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Re: Getting out of bed
« Reply #11 on: October 05, 2013, 10:44:11 am »
I hope I did not misrepresent things. I don't think I have not gotten out of bed. It's just I am not dizzy when I am in bed. I do move about the house without a cane (I only use the cane when I leave the house). Things are getting better but I have been going thru this since I was 43 and am 46 now. I am not very patient and do expect results a lot faster and with less effort. I do feel bad for my wife and kids as I sometimes feel they have been cheated. I do appreciate the advice I gotten and people listening to me.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic

Tod

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Re: Getting out of bed
« Reply #12 on: October 05, 2013, 02:33:23 pm »
Tom, just hang in there. You have been through a lot and your body has its own calendar for recovery. Keep doing what you are doing and walk as much as you can.

One way to look at things. There is a rule of thumb, and I don't know how true it is, that for every hour of general anesthesia the body needs a month to recover. I know that in my case, with the 32 hour surgery, followed by three other procedures about 90 minutes long it took every bit of three years to get to feeling really normal. And along the way the radiation set me back a bit as well.

I understand being frustrated and impatient. I really do. Just hang in there and keep getting out of bed. Keeping up what you are doing and add to it.

-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.