ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Tod on February 27, 2010, 03:45:19 pm
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14 days post-completion of surgery and I am now finally home resting. Beats the heck out of the hospital. I will probably stay on the first floor a couple of days first before attempting the stairs.
Despite the long, long surgery, and the associated wounds and bedsores, I have healed quite nicely. An advantage being at a med school and a daily briefing case. Also true for having various teams to assist in other areas of recovery...I go back Weds for some vocal cord injections to restore my voice and ability to drink normal liquids.
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Tod ~
Let me the first here to celebrate your return home. I know you had a hard experience but as you noted, you're doing remarkably well and finally on your way back to normalcy. May I say it? Welcome home! :)
Jim
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YAY TOD! You are home! Make sure to rest alot and do what your docs tell you to do. Take care and keep us posted on how you are doing.
Erin
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Tod,
You are confusing me. You spend 32 hours in surgery, 14 days in the hospital, have wounds and bedsores, and apparently you can't talk or drink normal liquids. And yet somehow you sound pretty cheerful. I find that admirable, and I'm sure your positive attitude is going to get you back on your feet.
I agree, the second floor can wait, enjoy being at home on the first floor for a while. :)
Best wishes and more power to you as you recover.
Steve
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Tod,
Just posted on the thread where you were in the hospital, so glad to see you are HOME. There's no place like home, there's no place like home. :) :)
Hopefully you have some one spoiling you, and encouraging you to move, walk, rest, etc.
Will be interesting to hear more about the vocal cord issues. I guess from 32 hours with a tube down your throat that could do it. I was thinking stroke, but now I've changed my mind. (I love trying to diagnose)!
Hopefully your bed sores aren't too bad, just something that can be fixed with that sticky duoderm type stuff (home health nurse here- I've seen my share).
PM me if you need advice on those sores! I'm sure they are about gone, if you are walking and moving.
Keep up the great recovery.
Maureen :)
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Plus maybe some Elastogel to boot! This could probably be considered just a nurses post. LOL!
Cheryl R
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Hi Tod
I just read your new post. So you went from ICU to home? So glad you are doing OK. We need to start a "Tod the survivor" or "the slaughter of Bob" thread for you so we can all keep up.
Rest and Heal, God Bless You :-*
Sue in Michigan
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Yay! Doesn't home feel so great!! Hang in there with your further recovery--it does take awhile. Don't get frustrated, and come to the forum to find answers! Best to you,
Jill
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Tod,
Click those heels together, there is no place like home, there is no place like home......I too am confused, can you go over your surgery, ect. I am still W&W and it sounds like your surgery and outcome was difficult. If you can, I would like more info.
thanks
LisaP ;D
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Tod -
glad to see you are home and keeping a positive attitude.
You deserve a medal for what you've been through.
Don't worry about the 2nd floor - my surgery was only 7 1/2 hours and I didn't climb the stairs to the 2nd floor of my house until at least 2 weeks post op.
Take it easy. Rest and rejuvenate.
Jan
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There is nothing to be confused about...I am simply an unusual case with a large tumor wrapped around my brainstem. It was an apparent mess., quite sticky and bloody.
Anyhow, 28 hours of actual surgery, 32 hours in position, followed by two weeks in ICU, one night in a regular room, and then home.
Vocal cords damage & facial nerve weakness on the left side, treatment for that tomorrow and removal of my sutures. Hopefully I will have a voice back tomorrow and a return to normal swallowing. We'll see.
Always remember that each case is different. I am lucky to have dedicated and talented docs that worked on me.
Each day is a new success. Made it up the stairs five times yesterday. twice around the cul de sac. It is not easy, and I have lost significant muscle-mass, but life is good.
Does this help?
tod
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Also, let me add, despite everything that occurred, my outcomes are about exactly what i expected them to be. Intellectually, at least. The physical reality has been disconcerting at times.
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Tod
I totally understand what you mean when you say that intellectually your outcome is what you expected but physically is a whole other story. You have a wonderful attitude and the body has amazing capabilities to heal. I also went straight from ICU to home so it is not completely out of the realm of normalcy-as you said Tod each of us and our circumstances are different. Frankly, the fact that you are even functioning after 32 hours of surgery is a testament to your strength and ability to heal!
Erin
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The physical reality has been disconcerting at times.
I am guessing that is an understatement! Bravo for you - you've had a hell of a journey and yet you are still managing to find things to smile about.
Debbi
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Tod, Considering your surgery was mid February, I'd say you are doing rather EXCELLENT! Amazing that your facial nerve is still intact-sounds miraculous actually.
I too had a vascular tumor,wrapped around the brain stem. Lost 2 pints of blood, unfortunately lost my facial nerve connection :'(
But there was no stroke so all was good
Shortness of breath from the anemia was a big symptom for me. (I refused blood transfusion).
Anyway, keep up the positive CAN DO attitude, continue resting, walking, drinking (what you can ;) )
You'll make it :)
Maureen
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Moe, they had me donate two units prior to my surgery in case i needed. that probably helped me quite a bit.
I got a voice today. Unfortunately, I can't use it for a week. I can swallow though. I can drink. Cool liquid diet tonight,.....food tomorrow.
Things are going well. And tonight I celebrate my on Zach, who turned 19 yesterday, and spent the day doing hospital duty for me. It was a longer day that expected, but he never complained (at least not to me.)
In other news today, I can close my eyes. This is actually big news...while I cannot independently close my left eye, I can close both together which I really had not been able to do.
Big day. Plus my sutures are out of my head, which is is also big.
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Tod,
Good news about the eye closure! And good thing you donated your own blood.
Never mentioned or recommended with my surgery. Most tumors are not vascular, but mine was. Go figure.
Enjoy your birthday with your son Zach. I'm sure you are both realizing that every day counts. Make it special. Good luck with food tomorrow. :)
Baby steps continue. ;)
Maureen
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Dear Tod,
I just found you on the Posties this morning. Congratulations on your homecoming and all that you've been through. Take it easy though and don't tire yourself out pushing up and down the stairs. Sounds like you like taking the trips around the Cul de Sac. You've taken long strides since Feb 12th. Keep it up! Life is good. You've got a great story to tell!
Take care,
Mei Mei
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Hi Tod,
It's now March 22nd how are you coming along?
LisaP ;D
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Hi Lisa, thanks for asking.
Actually, the last few days have been kind of sucky. Nothing major, just frustration at the lack of progress and headaches (probably from too much time at the computer) because of my vision. Physically, I am progressing pretty well. Saturday I walked a full two miles in the neighborhood. I am still using a cane when out of the house because of my balance, but i need it less.
I am also experiencing some pain/discomfort again in my hips and other places as healing continues. Save for the two spots on the back of my head where I think they clamped me down, all my wounds have healed pretty well, most of them completely. I have a few marks and blemishes from bed sores or tape, but I wear those, and and my scars proudly.
Really, the vision is the worst of it. My neurosurgeon called me last Thursday night about it and is of the opinion it is bruising on the nerve and swelling and so not to do anything until I see him May 10. Unfortunately, I had a some days of intense discomfort feeling like there was something on my eye. I went to my PCP and he could find nothing. On Saturday I went to the doc-in-the-box, and he found nothing after a pretty thorough exam. Turns out he recognized me from MCV, he's on the rehab team there and had evaluated me twice - both times feeling I was too strong and growing stronger too quickly to justify rehab services. Even though some of the other docs didn't fully agree, he feels pretty well justified at this point. Anyhow, he thinks it may well be phantom pain on the nerve I am experiencing and there is not much that can be done other than to take good care of my eye and not wait to go see a doc if I think there is something wrong.
After reading the Eye Care forum Saturday afternoon, I asked my wife to pick up some drops without preservatives, and 48 hours later, there seems to be some improvement. The burning is certainly lessened. I have set up an appointment with neuro-ophthalmologist for evaluation and just to ensure I am doing the right things with my eye care.
My voice is improved, but still week. I have my first speech therapy visit on Friday and a follow-up Monday with the ENT that did the vocal cord injections. I can swallow liquids well enough, but certain foods, primarily because of the incredibly dry mouth, remain out of reach, and swallowing still requires focus. My jaw is so stiff and weak that eating takes a very long time with most foods. Which is good...it is forcing me to change my eating habits. It is a shame thought that that I can taste so very little.B But shucks, I can't complain too much...I've lost 30 lbs since surgery and I think can lose still more without slowing my recovery.
Most days I do pretty darn well. I just did my mile walk for the day (it is an easy day). I cooked for myself this morning, and I get by without too much help or interference each day. I do get concerned, maybe scared, about my progress, because I just don't know how long this will take to find a new normal. To top it off, I really don't want to complain, vent or whine since an awful lot of people went to serious efforts to give me a new shot at life....it would seem very rude to gripe about having to do my part.
Today is a good day to live. No matter how it goes, I would hate to miss it. ;-)
Tod
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Tod
Recovery from AN surgery is not easy-there will be good days and then not so good days. It takes time for things to heal. Given what you have been thru,it sounds like you are doing pretty darn good to me! A neuro-ophthalmologist visit is a good call-I went to one post surgery and found him to be extremely knowledgeable about ANs-which in Maine where I live is very unusual! If nothing else, it will reassure you that indeed it will just take time for your vision to get back to normal. You have an admirable attitude Tod but it's ok to get down every once in a while(you would not be human if you didn't!). Try not to worry about the baby steps in progress- you need to think in terms of months instead of days and weeks. Keep us posted on how you are doing Tod-I know we are all here cheering you on!
Erin
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Tod I just found your post today - sorry for coming in late. I suffer fatigue and after teaching a full day of kindergarten students I hit the hay pretty early.
I wish you well. I wish you a speedy recovery. I felt happy when I read your last post. When I feel like complaining I am going to think of what you said. Life is good!
One thing I did want to say that if you feel like there is something in your eye or it stings it is too dry. it is so important to protect your cornea. Laci-lube (preservative free) is a good thing to put in your eye as required. It makes your vision a bit blurry but I could still cope. As my nerve recovered I could use something less thick Refresh Celluvisc individual vials. Twist off the lid and then pop it back on again. I can get three drops out of one vial. It has been almost 2 years and I use one drop an hour (hey not complaining).
Are you taping your eye at night? There are many tips for eye care. I used swimming goggles in the shower (putting the strap way down low on my neck). Lots of neat tricks, ask many can help. don't reinvent the wheel. Take good care of the eye. My ophthalmologist explained that if you scratch your cornea it is like a scratch on a window and will be permanent.
Good luck and know that we are here for you.
Michelle ;D
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Erin and Michelle, thanks. I have a hard time believing it is just too dry. I have been using a lot of drops trying to keep it lubricated. Even with the gels it can be like this. I will give the Lacri-Lube try and see if that helps.
Tonight I stepped back into life to do an Eagle Board of Review for one of my favorite scouts, so even though it tired me out a bit, it sure feels good to be a part of these things again.
Tod
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Hi Tod, Congratulations on your successful surgery! I find your positive attitude stimulating, especially after the ordeal you went through. Just remember to listen to your body, give it rest when it tells you and keep going with the walking. As for finding "normal" post op, I'm not sure there is such a thing, it's just a different normal which unfortunately I have not yet embraced. Still hoping for better! A suggestion for your eye- ask the eye doc about puncteal plugs. They are very tiny, do not hurt going in or when taken out, and 20 minutes after I got mine in I had amazing relief. The drops didn't help enough but the plugs were terrific. I recently had the lower one removed because my eye was too wet :). I now have just the top plug, no drops and eye feels good. Wishing you a smooth recovery :) :)