ANA Discussion Forum
General Category => AN Issues => Topic started by: chelsmom on June 03, 2009, 08:48:56 pm
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Hello Everyone.
Thank you for all your prayers and good thoughts for my daughter. I'm sorry it has taken so long for me to get this update posted. I left my computer at the hotel and I just retrieved it today and while they have her sedated I thought I could get this done.
Her surgery on Monday was 14 hours-translab. The surgeons took their time as they were dealing with a lot of scar tissue from the previous surgeries and a radiated tumor that was very sticky or as the Doc said, wanted to stick to all areas. They were able to get a better view of the tumor this time as the embolizing of the vessels prior to surgery greatly reduced the bloodiness. This combined with going translab vs retro allow these amazing surgeons to removed what they believed to be 99%. They left a tiny bit on the facial nerve but we are all thrilled with the outcome. She is still in ICU and now has a feeding tube through her nose. The last surgery left her with no swallow reflex, which eventually returned after 100 days, so until they can do a swallow evaluation they don't want to take any chances of her aspirating. She is in a lot of pain and really not able to tolerate the swallow test just yet. I was told that they will be moving her out of ICU in the next day of so.
Since her last surgery her neurosurgeon retired but as Professor Emeritus and as what is called 'Being on Recall Status' her still consults and is co-surgeon on many surgeries. He was going to try to be here as a co-surgeon for her but his schedule just didn't allow that to happen. He did conference call with the new team, Dr. Bergsneider and Dr. Canalis, on Friday prior to surgery for over an hour to make sure that all the info he could pass on to them along with what was already in the system would give her the best chance for a great outcome. The new hospital with the state of the art technology is amazing. Her care has been wonderful and we again feel blessed to have her here.
I will update more later as she is starting to wake up and mumbling my name.
Thank you again for all the thoughts and prayers,
Michelle
PS. Raj, she is 20 years old.
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Michelle~
Thanks for taking the time to report - I know you have been busy, just being there for her...you must be exhausted. So glad that the procedure went well and that they were able to get most of the tumor. I am sorry that she is in such pain now though - can they not give her something for that??
Continued prayers,
K
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It sounds very promising, Michelle. I am very happy to hear this.
Steve
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Michelle,
thanks for the update. I'm sure you are exhausted. So glad they got 99 % of the tumor. I requested 99.9% removal so I was pretty close, and they didn't have to cut the face nerve, Thank God. :)
Here's praying for a non- eventful recovery.
I had an 11 hour translab and had the headache from #$%! for quite a while. It did go away after 6 weeks. I was on vicoden, percocet too (stronger).
They gave me IV morphine immediately post op, and I started throwing up, so I don't know if it was the morphine or the brain surgery! I was amazingly coherent the first day post op and decided not to ask for the morphine, because I did not want to continue to get sick....... ???
So keep that in mind- (IV morphine) for her when you are at her side.
Best wishes for speedy recovery.
Maureen
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Hello chelseasmom,
So happy to hear the progress on Chelsea and hope and pray for a quick recovery free of issues! Prayers continue for you and your preciaous daughter and your family.
Jackie
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Michelle,
It sounds like the surgery went extremely well. The doctors prevailed by being able to remove that sticky tumor.
I wish her well and look forward to your updates.
Kate
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Hi Michelle.
I'm happy for the update and hope that Chelsea will recover soon :)
Kenneth
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Michelle
thank you SO very much for taking the time to update us on Chelsea. I've been waiting for an update and appreciate you finding the time and energy to do so. I'm glad this surgery is over and hope that each day, Chelsea is going to show the improvements we all await. I send my love, my healing hugglez and will continue to monitor here for updates as Chelsea means so much to all of us here. Will also give Captn Deb a heads up as well as she hasn't been on and I know you all hold a very special place in her heart.
Please hang in there... get some rest.... and please let Chelsea know we are all cheering her on.
xoxo
Phyl
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Michelle -
thank you for the update. Chelsea has been through so much at the tender age of 20, but your post gives me great hope that things will turn out positive for her.
God Bless her, and her wonderful surgeons, you and the rest of your family.
As Kay said, you must be exhausted; please take some time to take care of yourself.
Tell Chelsea that lots of us, who have never had the pleasure of meeting her in person, are cheering her on.
Best,
Jan
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Michelle, Thank you for the updates! Chelsea is an amazing person for her young age, amazing!
Time for you to rest now. Your daughter is in good hands.
More thoughts and prayers coming your way.
Sincerely,
Sue
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Wow..she is so young. I wish Chelsea all the best in her upcoming recovery period.
-Raj
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Michell ~
Yours was the very first post I read when I logged onto the site/forum a few minutes ago and it made me smile to learn that your brave daughter, Chelsea, has come out of what seems to be a successful Translab procedure.
Please try to find some time to rest. You're a great mother but you're also mortal and need to rest, when possible. Of course my prayers and those of many others are going out for Chelsea - and for you - as you both struggle through yet another AN surgery....hopefully, the last for Chelsea. That you're so pleased and comfortable with the doctors and hospital is a positive note. I expect that our 'adopted daughter', Chelsea, will be fine, in time, and once again able to resume the fulfilling life that I'm sure lies ahead. :)
Jim
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Hello AN Friends,
Again, thank you for all the encouragement and well wishes. Here is what we know so far.
The facial nerve is intact but did not respond to any nerve stimulation early in the surgery. This morning they removed her compression bandage and after a neuro-check she was rated 3-4 on the Brackman scale for facial nerve damage. She does not know this yet and the surgeons are hopeful, as we all are, that this will correct itself over time. As of now her eye closes and she has sensation to the touch on her face. She is talking out of the side of her mouth instead of the whole mouth. It looks like we will be here for a while perhaps another 5-7 days is what the estimation is. She is not cooperating with PT/OT or swallow specialist because of her pain level. When she gets too much pain medication it effects her breathing so it's been a fine line. Hopefully in the next few days she'll be able to move around.
She will be heading down for an MRI in a little while so the docs can see how it looks and evaluate the success of the surgery. I will keep you posted.
Thanks again,
Michelle
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Dear Michelle,
Hugs to you and Chelsea and you tell her that her AN family is rooting for her. She's a trooper and so are you.
Love,
Sue in Vancouver USA
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Michelle,
You are wonderful to take time to keep us updated. I'm sending those healing hugglez in Chelsea's direction ... and a few hugglez for you as well. I'm cheering you all on as always and please give her my best wishes.
Please hang in there.
xoxo
Phyl
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Praying that God will ease her pain and please let her know that the facial paralysis does getter better with time. Bless her.
Angie
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Michelle,
Thanks for the update. The headaches will hopefully get better in time, as the facial problems. Sorry to hear about that.
She sounds so strong and positive, I'm sure she'll breeze through whatever it takes to get her feeling and looking better this time around. As you know, just gotta get through the setbacks which you have dealt with to the maximum degree in the past.
Keeping her and you and your family in my thoughts and prayers for a nice steady recovery.
Take care of yourself too ;)
Maureen
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Michelle,
Thanks for the update. I've been on pins and needles waiting to hear how Chelsea was doing. As you know, Chelsea means alot to us. I'm glad they got the rest of the tumor this time. Maybe the facial nerve will respond soon. You have an excellent team of doctors and I'm sure they'll handle anything that comes up. Chris went thru the swallowing problem too but it does resolve itself. I hope the headaches are a thing of the past. Keep the updates coming, if possible, and if you need to compare notes...we're here.
Tell Chelsea we are cheering for her...
Rita
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Michelle,
May I offer you some words of encouragement as I know that at this point in my recovery my mother and dad could have used alot of it as they were worried sick. I also had the feeding tube as my swallowing reflex was completely paralyzed and all swallow studies showed that it wasn't working at all and I even choked on my own saliva and the doctors would not even allow me to have ice chips in my yuck, dry mouth for 3 months. It was all I could do to brush my teeth without aspirating on the liquid. 3 months later after many failed swallow study tests I PASSED and the tube came out! I also had 6/6 complete facial paralysis with a facial nerve that would not respond to stimulation during surgery and with a grim diagnosis for improvement. I am 2 years post op on July 5, 2005 and I have current pictures posted somewhere. I am now at a 2/3 house brackmann and just now able to blink on my own although I still wear my external weight for extra help. I am still exercising those face muscles to get them stronger. Don't let her think it is hopeless. It's not. Another thing on her side is her young age. Although it is AWFUL that such a young girl has to go through all of this her age will play a huge factor in her recovery as we all know that younger bodies and minds heal quicker than us (shhhhhhhhhh...) 40 year olds...yes I'm almost there. Yikes. It is even documented in many facial nerve recovery studies that age, nutrition, intact facial nerve vs. cut facial nerve, etc. are things to consider when looking at recovery. She has been through sooo much and as I sit here and read your post it takes me back to when I was in a similar place. It instantly made my heart race as I read your posts. I really thought my life was over. I was 38 with two little kids. My vocal cord paralyzed, my swallowing paralyzed, my face paralyzed.......I felt ruined and worthless. Today 2 years later I am in a happy place and feeling much better. It wasn't a cakewalk as you already know since this is her second surgery but with the love of my family and kids I emerged from a very dark, suicidal grim life to a beautiful happy and God-filled life. My hopes for you and your daughter are that through your times of tribulations that it will bring you even closer and that someday she will look back on ALL of this and say...."whew. Glad that's over." I know that God has a special plan for this girl of yours and he knows that she has the will and determination to conquer this thing. I sit here and wipe away tears because writing this brings up so many emotions for me personally and tears for what you and your daughter must feel right now. It isn't fair I know....I asked a thousand "why me's" but REMEMBER....God has a plan. Stay strong, stay focused, take baby steps, have faith, have patience......sorry for that nasty, curse word......I hate that word and continue to be the GREAT mother that Chelsea is so blessed to have. Keep us updated and I will continue to pray for her recovery.
I remember how yummy it tasted to have flavored lip balm.........it was the closest thing to food that I could have. Go get her every flavor you can find. It will be a nice treat trust me!
Angie
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Please update us when you can.
Angie
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You're not alone.
Angie
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thanks for the update . i hope her progress continues for the best
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Michelle~
We prayed for Chelsea and YOU too in our Bible class today...
Hope things are going OK.
K
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Michelle
Please know that you, Chelsea and the rest of you family are in my prayers. Especially since she is so young, I hope she has a full reocvery. Please keep us posted on Chelsea's progress.
Best wishes,
Wendy
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keeping those wellness wishes coming Chelsea's way! If anything any of us have learned over the past years, its her resilancy (did I spell that rite? :) ) and hoping each day becomes easier and easier for her... Michelle, thank you, as always, for keeping us updated and hope you are getting rest as well.
xo
Phyl
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Sweetie,
Both to you and Chelsea,
Eric and I both are thinking of you. I am glad it is over and you know it takes time to start recovering the nerves. I wish there was more I can do but you know as a mother I completely understand, and Eric understands the swallowing issues. I think it makes him feel grateful for his own situation. Our thoughts are with you and I wish I could do more. And I know in a few months you will both look back at this time and think remember how I was back then, and how much better it is now!
Peace, Robyn
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Has anyone heard how Chelsea is doing. I think of her and her mom often.
Thanks.
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I was just wondering that earlier this week. I hope she's ok. does anyone know?
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I am thinking of Chelsea, her mom and her extended family, too.
More thoughts and prayers coming your way.
Sincerely,
Sue
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Michelle,
I hope and pray for Chelsea.
Too young o go throuigh all this crap. It's unfair!
lotsa hugs and staff
laz
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Good Morning Everyone,
Thank you all for the support, warm thoughts, and much appreciated prayers for Chelsea.
I'm sorry I've been a slacker about updating on her progress. I'm not sure if I had reported earlier that besides Chelsea's situation, my mom was diagnosed with kidney cancer and had surgery to remove her kidney a week after Chelsea's surgery. So, I've been busy playing the smiley face, upbeat nurse for both of them. When I seem the least bit tired or preoccupied they both start worrying about me and not focusing on their own recovery. I don't want that and especially because I'm fine. I just need to get out more ofter and go walking to burn off some of that pent-up energy/stress. My husband has been a great nurse to Chelsea also. He is a teacher and therefore has the summer off which allows him to give her all the attention she needs. My mom is at her own house and a couple of my siblings have stepped up to take care of most of her needs.
As far as Chelsea goes. She was released from the hospital on June 17th. This was a lot shorter stay (just under 3 weeks) than the last surgery (3 months) in the summer of 2006. Her facial nerve has been affected on her right side. Her eye closes but does not blink as often as the left eye therefore we keep it moist and covered. Her vision is blurry so keeping it covered helps her see better. Her swallow is good enough that they removed the feeding tube in her nose on the Friday before she was released. The doctor really was not comfortable with going this route as he wanted her to have the peg-tube (feeding tube in her stomach) and wait until she passed the swallow test with flying colors. She put up a stink and said she was not going to do that again-and won. So far so good. She just has to be careful.
She had been so sick prior to surgery that she had lost a lot of weight. The tumor was pressing on the area that caused her to be constantly nauseated. When she left the hospital she weighed only 107 lbs and is 5' 91/2". She has gained about 8 lbs back and is loving the fact that she can eat whatever goes down and not have to worry about weight gain. She has been eating tons of potatoes and gravy with slow cooked pot roast and about a whole banana cream pie a day. I'm a little jealous.
Because of her facial paralysis her speech is difficult to understand, although getting a little better. We all know that the nerves will take time to heal and if they don't recover with time then we'll have to check into other options. Her balance is off and she will be starting vestibular physical therapy soon. I think she'll do well once she gets stronger and gains some weight. Overall, I think she is doing great considering what she has been through over the last few years. Her spirits are up and she just wants to get back to normal by the end of summer so she can head back to school. She is aware that if things haven't improved by then that she can either take a semester off or tackle it as best as she can. Time will tell.
Thank you all again for the support. I will try to be better about updating.
Have a great day.
Michelle
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Hi Michelle,
Thank you so much for the update. I am well aware of how hard it is to balance the care taking of a post surgical patient. And the time it takes. I didn't update on Eric until a month after his surgery. I was having such a hard time with it. So, I appreciate your taking the time to do that. Sorry about your mom too. I told Eric about Chelsea and he was wondering how she was too. As you know the swallowing issue is not as common as a long term effect so they have this in common. Eric lost 30 pounds during his ordeal also. The first couple of months he only ate pudding and soup. Then went on to sandwiches and that kind of thing. He still has some trouble sometimes with certain things but about a month ago he told me he had popcorn at the movie theater. I flipped and was not happy about it but he said he was fine. I still watch over him on this stuff and forget that he is careful but I am worried about things like popcorn. Eric still coughs everyday when he eats. He just does not have the bad ones as much. I always look at him when he coughs and he holds up the thumbs up to let me know it is not a bad one. The bad ones only occur every few months so that is progress. I am sure that the facial nerve was a disappointment especially at this age, but it does take time to heal. Eric also remembers having to take time off from school. Sometimes I think too bad we don't live closer. They could be a great support for each other.
Tell her that Eric says hi or I know he will when he gets home from work and I tell him she is doing okay. If you need any support we are here.
Robyn
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So glad to hear Chelsea is back at home. Chelsea and her family are in my prayers.
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I'm glad to hear Chelsea is doing fairly well. I had the vision problems as well. They cleared up within only a few months. My tumor also made me nauseated and I enjoyed eating after surgery. You go girl......:)
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Robyn,
I'm glad to hear Chelsea is doing so much better. I'm also sorry to hear about your mom, but glad to hear she is doing well too. It sounds like your husband is doing his share and it's only fair that your siblings help out, when you are so busy, after all, she is their mom too. Remember to make time for yourself before you collapse.
Best wishes to all,
Wendy
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Michelle,
Thanks for the update. i think about Chelsea alot. It's interesting that both you and Robyn mention the swallowing issue Chris had problems with liquids and the feeding tube was the low point he reached that summer. Like Robyn, I look at him every time he coughs when eating and remember.
About the eye: After the 2nd surgery for the rest of the tumor (summer 2006) Chris was told that he had facial paralysis. We didn't see anything different, even an opthalmology resident said he looked fine. However, his doctor said that was just "tone" and common in young people. He had the gold weight put in just days after the surgery. It was worth it. The procedure is reversible and modifiable. It helped him close his eye and blink better. It isn't noticeable and he refused to wear a patch and a moisture chamber.
Unfortunately, Chris still had dry eye problems. He returned to college and studied more, used the computer more and our cold, dry winters here all affected his eye and he had to have eye surgery to bring up the lower lid. Again, it's not noticeable. He still uses moisture drops daily.
Just thought you might want this information, especially when Chelsea returns to school.
Rita
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Keeping Chelsea and Chris, our Magnificent Duo, in my thoughts and prayers. AND the Moms and families....parents of Magnificent Duo's are in a league of their own.
Sue in Vancouver USA