ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Nickittynic on October 16, 2009, 06:54:18 pm
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Hello!
I'm Nicole and I'm new here. I've lurked a few times pre-op but didn't join until today because I wanted to say "thank you!" to everyone. I was having a rough day today and reading about the normalcy of everything I have going on helped a lot!
A little background on me-
My AN story started on 8/14, just one week after my father-in-law passed away after a two year battle with a cancerous brain tumor, when I called out of work for what I thought was the flu. I went to the Minute Clinic, essentially to get a work note, and they couldn't find anything wrong with me but told me to go to the ER if I didn't get better the next day. I don't know why I got a fever that night, or why I decided my headache (I'd had them almost daily since April) was bad enough for the ER, but the staff there was good enough to figure out my symptoms warrented a head CT and subsequent MRI.
I got connected with docs at Johns Hopkins, and though my only symptoms really were headaches and some mild facial weakness (normal hearing in both ears!), we decided to proceed quickly with surgery because of my young age (23 at diagnosis) and the size and position of my tumor (5cm, pressing on the brain stem). I had retrosigmoid surgery on 9/22. They were able to remove all of the tumor and anatomically preserve my hearing and facial nerve, however the nerves are "stunned" so I am deaf in the left ear and the left side of my face is paralyzed. The docs seem optimistic about at least the face coming back but only time will tell.
Right now I'm in PT 3 times a week to work on balance and strength in the left side (I wasn't expecting my *whole* left side to come out wonky!), and hopefuly next week I'll be getting a gold weight implant so I can get rid of this darn plastic wrap on my eye. OT starts at the end of the month. I'm very happy to have advanced to walking on my own, showering on my own while standing, and now sleeping laying down again. My goal is to get back to work (I'm a night shift nurse on a mother-baby / OBGYN / newborn nursery unit) around 2 months postop, but I feel like I have a long way to go before I'm ready. As it is now I'm staying with my parents while my husband takes care of my two kids, aged 1 and 3, and brings them over to "visit" me. I can't wait until I'm allowed to lift again so I can hold my baby!
Looking forward to getting to know you all and thank you again for inspiring me through a rough day today!
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Nicole .....
Welcome to the Forum! What a journey you have had so far! So glad you have already had successful treatment for a whopper of an AN. It sounds like you are doing amazingly well for the size of AN you had. I know it will seem like a long time, but let your body do its miraculous healing ..... do your exercises and then rest ...... rest and then do your exercises. Soon you will be able to hold your precious children again.
My thoughts and prayers for a quick, uneventful recovery.
Clarice
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My goodness - you had a doozie! I'm so glad you checked in - sounds like you are well on your way and that you have great care. You are very fortunate that the AN was found before some really awful things happened due to the size. Turns out, that 'ole brain stem is pretty important!!
Try to be patient - this recovery can come with lots of ups and downs, but lots of folks here have really sailed through with no "events." (Love that reference!). It helped me to ask questions and check in with this group because it brought me close to folks who have been there - something that unless you're close to it, or been through it, it's tough to relate. I'll bet you'll be holding that baby soon - in the meantime, focus on you and getting your strength back.
Hang in there, Nicole! You are among friends here!!!!
Kathy
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Hi Nicole and welcome from another nurse (quite a few of us on here, actually).
It sounds like you're headed in the right direction - slow but sure. We've all had to learn a little bit of patience during this AN journey - and for some of us, it was not an easy thing to learn!
Now that you're walking on your own, I'll bet your strength and balance will improve quickly. And chasing after two little ones will help too, I'm sure! I had a 4 year old and a 10 month old at the time of my surgery, so I know how hard it is to not be able to do all the usual Mommy things for a little while. You may not be able to pick up your kids right now, but they can still climb on your lap for a snuggle - it's great medicine!
Sorry you had a rough day today - I hope each day gets better and better!
Lori
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Hi, Nicole.
I wanted to join the welcoming committee ;D
I just read your blog and saw your post op pictures. You sure have been through a lot, but as Lori said, you're headed in the right direction.
Looking forward to getting to know you, too.
Jan
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Hi, Nicole ~
Please accept my welcome. I saw your post on another thread with a link to your blog, so I went there and read a lot of it. The entries were informative and the photos were excellent. Although a few were 'graphic', trust me, there was nothing (post-op) we haven't all seen before (usually, in a mirror)! We know what it's like after AN surgery.
I'm sorry you're having to struggle with your recovery but many of the issues you're dealing with are very likely going to be temporary and I trust that, with youth on your side, you'll have a good recovery, although probably nowhere near as quickly as you would prefer. It's encouraging to read about your progress and I want you to know that your 'story' is likely going to be somewhat inspirational for future AN patients. Even with obstacles, healing does happen and you can return to normalcy. It must be tough to miss your kids and also to see returning to your profession as a distant goal. However, you're determined and clearly optimistic, with good reason, I might add, and I believe you'll be working as a nurse again before you know it. It won't be easy - but it will be worth it.
Please consider these forums a resource and post here as often as you may feel compelled to do so. Ask questions when necessary and definitely know that we understand what you're dealing with because most of us have 'been there', to some extent. We're cheering you on from afar and you and your family will be in the prayers of many. Thanks for posting. :)
Jim
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Hi Nicole
I just wanted to say that it sounds like you are doing great for 3 1/2 weeks post op! I know for me, this forum was such an amazing resource post op. It is great resource for someone going thru something like recovery from AN surgery. It sounds like you are working hard to regain your strength-just remember not to push yourself harder than your body is ready for. Alot of recovery is about learning to push enough to make progress with giving your body the rest it needs. Good luck and take care!
Erin
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I too saw your blog on the Halloween post and went on it to check out your Mohawk! I had surgery the day after you but yours was a much, much BIGGER one! It sounds like you are doing very well week 3.5 considering what you have been through and how large your AN/mrengioma was. I can only imagine how it is to have gone through surgery, still be going through this post surgery stuff, and to have young children. (my girls are older 10&13 so it m, de things much easier and I don't pick them up anymore ;D ) Here's wishing you make a speedy recovery especially with your facial nerve and hoping you can pick up those adorable children soon!
Cheryl
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Hi, I cannot imagine how rough this is for you being so young and with small children I am much older and should stop and think I have to stop pitying myself and be grateful and to realize that there are others out there with much larger AN's and going through more difficult situations. I am just suggesting maybe looking into a Vestibular Therapist I do not fully understand but I have noticed a lot of people seeing PT/OT but not too often mentioning a VT, I personally found the Vestibular Therapy extremely helpful..
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Welcome from one newbie to another. My surgery was 9/24. I know it must be hard not holding your children, but you will you every day something will be alittle better. Sometimes it's hard to see it, but I know most days I feel alittle better and have even started to do 15 minutes of my walking tape in the house (at a slower speed). I am a student nurse and am hoping to return for my third semester in January. The trick is to try to stay positive and remember there are always those less fortunate than ourselves. This forum is wonderful for support, information and to remind us that we are not alone. Have a great day!
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hello and welcome to our family. You are in great hands here.
JO
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Thanks for the welcomes, everyone! Following and posting along here as already done great things for my mood!!
Unfortunately my son is sick with a cough right now, and since I've already caught one of their colds since leaving the hospital, I'm in "quarantine" for awhile until he's not coughing anymore.
pbjork - Thanks for the suggestion of a vestibular therapist. Actually, the therapists I worked with in the hospital were PTs that specialize in vestibular issues, and that's what I've been referred to for my current PT. Plus they gave me an excellent "homework" book which I've been practicing (though maybe not as much as I should..). My main issue now is more the left sided weakness than the dizziness, so I'm hoping PT will help?
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Hi, Nicole,
Welcome to this forum! I also find a great source of information and inspiration. I had AN surgery twice: in 1988 for a giant AN and in 2007 for its regrowth. I also ended up with one-sided weakness after the first surgery for the same reason as you and it got worse after the second surgery. Both times it took me two years to get to the point when it is not noticeable to the outside world but I can still feel it.
I feel that once you have it, you will always have it even in a minor form although after two years I reached a point when it does not stop me from doing anything that I want. Exercise can both heal it and camouflage what is left but I have to do it religiously and never stop. Once I stop, weakness returns. One type of exercise that helps is resistance or weight training, not endurance training, like running or walking and not flexibility training like yoga or pilates. They all have their place in an exercise program, don't get me wrong, I do all of these for various reasons. I learned though that if I skip my weights even for two days I have trouble walking on day three and appear to have scoliosis because my right shoulder is lower than the left. So, before I go to bed, I do weights even if I am extremely sleepy or tired. Right now they are the most important part in my exercise program because they give the most results in a short term. I am not prone to being obsessive-compulsive but I learned that I need it the hard way.When I travel, I put ankle weights in a suitcase. My husband once objected, but I said that I want to walk like anybody else!
I do weights every other day : M, W, F, S and next week it is T, TH, Sat. The entire cycle repeats over an over again. It works better than just 3 days a week. My routine consists of dumbbells and ankle weights. I do these at home but a gym is also great, whatever works for you.
My ankle was also very weak. I took PT twice - one for vestibular retraining and one for walking. The second time I learned that my ankle was weaker on the sides than front-back because when I walk or run, I exercise front and back more. So the therapist got me on Dynadisc- you just step on it and wobble for a few seconds. While you wobble, the sides of the ankle are working. I purchased it and do it at home. My foot was also affected much more severely after the second surgery. I am not sure if yours is but if you need exercises, let me know. When I do my ankle weights, I include foot and ankle exercises that I got from PT and Internet.
One-sided weakness (or hemiparesis ) can affect a body three ways:
1) gross motor and fine motor movements (handwriting, grabbing, holding, etc , or walking)
2) fatigue - moving the affected limbs takes so much more effort. My incredible fatigue has lifted only when my hemiparesis got to a certain level.
3) balance - your weak side cannot support you and you can fall easily. Any ANer has a double whammy here, no balance nerve and the weak side is not to be relied on! My balance is so much better now that my right side is strong.
Your age is in your favor. You should recover much quicker than I did. i had my first surgery at 25 and I remember how my handwriting was affected. I did everything with my left (non-dominant) hand, I even wrote with it. There were plenty of opportunities back then and I was amazed at how good I became at writing with my left hand. Now that I am in my 40's I cannot do it. My handwriting is not pretty to look at but it is legible and it exists. I purchased a netbook for typing instead and walk around everywhere with it.
Sorry about your forced isolation from your baby. That must be incredibly hard. Hang in there! Everything will work out, just give it time. If you have any questions, shoot. Hemiparesis after AN surgery is not common, but it happens. It can be dealt with. As soon as your doctor give OK, start with some form of weights and you will be on your way to recovery. I know it is not advisable too soon after surgery but all doctors (and all patients) are different on this.
Eve
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Thanks Eve! That's a lot of great information!
I haven't found too much on hemiparesis (I'm not even sure if that's what they are calling my weakness or what exactly the standards are for it to be called that?) following surgery. My shoulder slumps down, too! My hand seems to be a lot more affected than my foot, though I did notice when trying to put flip flops on (mom treated me to a pedicure!) that the unaffected side went right in while the left couldn't "find" the sandal, like it bounced around from side to side - weird.
I'm lucky in a few things 1) my age, 2) my mom and dad are both personal trainers and my mom teaches a number of exercises classes so I have access to a lot more than most people, and 3) my non-dominant side was the one affected. My handwriting is okay (wasn't that good to begin with!) but I noticed while doing a coloring book with my kids that I didn't do so hot "staying in the lines". I'm hoping that's more of an issue from having plastic wrap (moisture chamber) on my eye than my hand! Can't wait to get my gold weight so I can loose the plastic! Anyway, I think I'm going to borrow one of my mom's Bosu balls to practice on noe that you mention the wobble disk.
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That's great Nicole! Everything is there to help you with your recovery!
I was not able to find much on hemiparesis, either. I found information and what helped in pieces. Some of it experience, some of it PT, some exercises for stroke survivors (although they are more severely affected) and some of it, believe it or not, websites devoted to dancers, like ballet in particular. I figured they are in occupation when they break their feet. What exercises do they do to get back in dancing? I feel that if I had all the information right away, I would have recovered months faster and it would save me days when I was so frustrated because I did not know what to do. Although I shouldn't complain: I had more of hemiparesis after the second surgery and am still recovering within the same timeframes from it.
As far as the "bounce" goes, this is what helps: sit on a chair or couch and try to pick up a small fist-size ball with your affected foot. The ball can be soft and squishy. My son has a myriad of soccer balls of all sizes, so I picked up one. You can even do this exercise while watching TV. There are no weights involved, so it should be OK with your doctor but ask him just in case. Just don't hold your breath, breath as you normally would. As a greater level of difficulty, do this without looking at your foot ( that is why TV is great - it makes you look straight). It will be just a matter of time before your foot "finds" your shoe and gets into it by itself. This is practiced by dancers, so why not us!
Eve
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Welcome Nicole.
You sound great for 3 weeks post op. It is nice to have family that loves and cares for you. THAT will make the difference.
We are here for you and some have experienced just what you are experiencing. Ask lots of questions and creep through old threads, there is lots of valuable information. No sense reinventing the wheel.
AN's suck! Glad you found us!
Hugs
Michelle ;D
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Wow Nicole,
I just browsed your blog and me oh my what a ride you have been on! Yikes. I love your sense of humor through all of this.
I too am a nurse. Which is not a good thing! Trying to diagnose everything while you are slipping in and out of reality! The funniest was when you grabbed a stethoscope to listen to your lungs because you thought you were drowning. Turned out just to be atelectasis. Whew......what a relief. We always fear the worst...
I wanted to know what medicine I was getting in the ICU, what were they doing, etc....They probably weren't used to that!
Anyway, you are doing incredibly well for 3.5 weeks post op and have a can do attitude which is great.
With the facial paralysis, this is one of those things that people have a really hard time with. It has been recommended not to do anything for at least 6 months, maybe longer: if you feel inclined to start vigorous PT on the face or nerve stimulation.....DON"t do it. Let nature take its course. You will hopefully and most likely see small improvements. Wrinkles, twitches, movements will come back. Lots of good success stories of the face returning with time. That is so hard though. Because you are young and you are a nurse. You don't want your patients looking at you and wondering, "Did my nurse have a stroke?" "I want a different nurse!"
Unfortunately my face nerve was cut so I am in a different league. It is a slow process and continues to tweek along.
As far as work goes, take care of your body and your kiddies. Don't stress the returning at 2 months. If you do that's great, but you have been through a heck of a lot and your body really needs time to heal.How long was your surgery?
Keep up the great attitude and let us know how things continue.
Maureen
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Moe,
Glad to meet another nurse! That "Did my nurse just have a stroke?" thing is one of my biggest fears. I had already checked with my manager pre-op to see if I could wear scrub caps to cover the scar, but didn't think what I'd do with my face! haha. Maybe they'll keep me in the nursery - the babies won't mind. :)
My surgery was 10 hours. The only reason I say go back at two months is that's what my doctor's signed me out for and I'm the only one with a money-making (and insurance carrying) job right now. :(
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Hi Nicole and welcome. Shame on me for being late in my "welcome" but glad to see you here. I see you have met some of the gang and hoping they are on good behaviour (we have some here that like to drop their angelic halo's..... ;) ).
What a ride you have had and glad to have you here posting so soon after your surgery. Lots of info, support, hugglez and yes, bad jokes (as needed) around here but.... most of all... I have to say, there is a truly, wonderful group of folks here that truly do understand what it is to walk in AN shoes. Looking forward to your updates and participation here.
Again, welcome. Hang in there... wellness wishes to you... and good to have you here.
Phyl
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. The only reason I say go back at two months is that's what my doctor's signed me out for and I'm the only one with a money-making (and insurance carrying) job right now. :(
Oh that does put the pressure on you to get back to work. I'm sorry to hear that. But you're a fighter, you just have to take it easy. I know hospital nursing is NOT easy. I do home health part time, so I have a leisurely schedule.
(paperwork sucks big time though).
Nursery might not be a bad idea ;)
Maureen
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Nicole, I just took a look at your blog and you look awesome!! Way to keep a positive attitude and you sound like you're doing really well for being only 1 month post-op. I'm sorry to hear about your father-in-law, and your diagnosis must've been very scary for you and your fam.
I had (have) total right-sided facial paralysis from my translab in Feb. 09. It was literally 6 months, almost to the day actually, before I saw any movement whatsoever. Then I was staring in the mirror one night waiting for my husband to move out of the way of sink, and noticed the corner of my mouth moving a tiny wee bit. Over the last two months things have improved a ton. I just saw my surgeon on Wed. and he was very pleased. It may feel like things are taking a long time, but I think part of this whole experience for me was to learn patience, b/c I was the most impatient person in the world before all this!
Keep up with your amazing positive attitude and give yourself time to get better :)
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Lyssa,
I'm not known for my patience, either. :P
That's great that you're having improvement and I hope it keeps up for you!
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Hi Nicole,
I am sorry for replying late. It seems to be my pattern lately. I'm blaming it on my "wonky head" these last few day. looks like you have had a successful surgery with complete tumor removal. The side effects after surgery are expected specially with a tumor your size. You are young and day by day you will gain your strength and symptoms will slowy diminish. Patience and positive thinking is the key. I would suggest you continue with as much rehab as you can get to ensure a speedy and succussful recovery. Wishing you the best.
Vivian