ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: mk on April 24, 2011, 12:03:08 pm
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Hi all,
I won't have access to internet starting tomorrow, so I am starting this thread for updates. I have asked Vas, my hubby to use this thread to post updates.
Next time I will post I hope to be a postie-toasty.
Marianna
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Marianna ~
Thanks for starting the thread. We'll look for your husband's updates. Our thoughts and prayers will be with you on Tuesday.
Jim
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Marianna,
I want to wish you the best of luck in your upcoming surgery and recovery! Can't wait to hear the good news!
Eve
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Hi Marianna
Good luck Prayers with you
Ann x
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Prayers coming your way...
K ;D
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Best wishes. You are going to rock it.
Steve
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Praying all the way!!!
Clarice
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Thinking of you Marianna ... Hope all is well and we hear from your hubbie soon.
Ann
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I'm waiting anxiously to hear how your surgery went, Marianna. Wishing you the very very best.
TW
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I'm also waiting...and thinking about her a lot...hope to have some news soon!
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Hi folks,
This is Vas using Marianna's account for a first update
Marianna had the surgery yesterday. It lasted 10 hr.
Coming out, the doctor said that he was happy with the way things went
She is currently in the ICU
I will post more news when I have them
Regards to all and thanks for your kind remarks
Vas
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Vas,
Thanks for the update. 10 hours is a long one, and sooo glad to hear the doctor said everything went well.
Gentle hugs to Marianna :)
Maureen
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Hi Vas
Today I was thinking Marianna all the day and I was waiting anxiously for your update!
So glad to hear that everything went well!
Best wishes for the recovery! And I want to wish you your wife will be soon with you and your children.
Maraki
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Hi, Vas - and thanks for the update.
Definitely a long surgery but the doctor's comment about being "happy with the way things went" is very encouraging. I know (from experience) that she'll sleep a lot for the next day or two and you won't know much but whatever you can pass along to Marianna's friends on this forum will be much appreciated.
Jim
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Vas .....
Thanks so much for this news ...... many of us have been anxiously waiting to hear. 10 hours is a long surgery but so glad the doctor was pleased. That is very encouraging.
Tell Marianna we are all pulling for her during this recovery time.
Many thoughts and prayers, not only for Marianna, but you as well!
Clarice
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Thanks so much for the update...tell we are all pulling for her!! I wish you both PATIENCE during the coming days & weeks...
K ;D
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Great news so far! Surgery went well, so that is out of the way and now comes recovery. Hope it smooth, uneventful and painless!
Eve
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Vas,
Please let Marianna know that Blessings and prayers are reaching all the way from Oregon to you and your family for a speedy, uneventful
recovery! Time to pamper her big time! So glad she has you to care for her. She is truly blessed!
jackie
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Thank you so much, Vas, for the update.
Please tell Marianna she is in our thoughts and prayers; you are too.
Best,
Jan
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Thanks for the update, Vas! We are all relieved the surgery went well and we are anxious to hear how Marianna is doing in recovery.
Best wishes,
TW
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I understand that Vas is not with Marianna as she has her surgery. Her Mom is with her and Vas is with the kids. I am hoping that all is well, and I have the most faith in mk and Dr. A.
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Hi folks,
Yesterday Marianna was released from the ICU and is now residing in a regular room in the Hospital
Her recovery is progressing more or less as expected at this early stage.
She has some numbness on that side but she retains feeling.
She is also able to open and close the eye, albeit with small difficulty.
Her biggest malaise is the post-operation nausea, which is still present and restrict feeding of solid food and sitting upright for too long.
It is correct that I am not with her (her mother is) but I talk to her twice daily and she seems in very high-spirit
I would like to thank everyone for their kind words and wishes.
Yesterday when I mentioned to her that I keep the forum up-to-date she was quite pleased, which indicate that she also has a soft side for the forum participants
Best regards to all
Vas
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Thanks Vas. I'm sure it is tough for you to be away from Marianna. Thank you so much for updating us. Tell Marianna Nikki said- take the gravol!
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This is good news. Out of the ICU and no major side effects. We all hope for Marianna's continued and quick recovery.
Best wishes,
TW
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The news are wonderful! The symptoms you mentioned are expected after the long surgery and she certainly needs some days to recover from narcosis.
Please keep us inform for her condition!
I hope the best for her!
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Vas
Thank you so much for keeping us updated on Marianna. Please let her know that I am sending the infamous "healing hugglezzz" and sending wishes for a speedy recovery!
Phyl
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Vas,
Glad to hear all is progressing as expected. The nausea is difficult but will subside over a couple of days. That coupled with swelling and other side effects are probably making her feel incredibly uncomfortable. In a couple of weeks she will wonder what all of the fuss was about.
Best Wishes,
Tim
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Vas,
The first few days most patients take large doses of steroids that make them very nauseous. Steroids and anesthesia are two main culprits for nausea. I would ask her doctor how many more days she needs steroids. They made me very nauseous. Otherwise, great news!
Eve
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:)
Hi Folks
Marianna will be discharged from the hospital today
Her recovery rate is more than pleasing.
She has been weaned-off the medication (steroids & morphine) and she is only taking Tylenol by mouth. She feels much stronger and is able to travel small distances without the walker. Yesterday she also came up & down a flight of stairs, albeit being helped by the physiotherapist.
Post operation, Marianna developed a very mild facial weakness, unnoticeable to the untrained eye. The doctor expects it to slowly resolve over time. She also has a small difficulty focusing vision, but this is already improving with each passing day being better than the day before.
Furthermore, she is experiencing some recovery in the trigeminal nerve functions which alleviate some mild but very annoying ailments like the chronic dryness in the eye
All and all we feel the situation is as good as it could possibly be
I would like to than everyone for their kind words and comments.
This is probably my last update.
In the following days Marianna will be contacting the thread herself :D
Best regards
Vas
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Dear Vas - just wanted to join the others here in thanking you for posting the updates. I am overjoyed to hear about her recovery! Lots of love to your entire family and continued wishes of good health.
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Way to go, Marianna!
So glad all went well and you will soon be home and continuing on a good recovery path! Home is good!!!
Thoughts and prayers continue.
Clarice
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Congratulations on a successful surgery, Marianna!
Hope you are home now, resting, being pampered, and taking nice gentle walks, and long slow rests in between. :)
Maureen
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Marianna, I have been following along with the updates from Vas with extreme interest. I could not be happier for you Marianna for the recovery you are making. I sent out a big group e-mail for you prior to your surgery for prayer request for a successful surgery and post op. Many people that you don't know have asked of you and are concerned about your condition. I pray that your recovery continues to go well! Take care!!
Windy
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Marianna ~
I was delighted to read your husband's last update (5/2) and learn that (a) you're being released from the hospital and (b) your issues are relatively mild - and improving, daily. Your recovery reminds me of my own, and it was quite rapid - as I trust yours will be. Thank Vas for us - and please take it easy. Recovery isn't a contest and there is no prize involved. As we often advise:'listen to your body'. Meanwhile, we're all cheering you on and jubilant in the knowledge that you did so well. :)
Jim
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Hi everyone!
I am back! Thank you so much for your kind thoughts and wishes.Thank you for supporting Vas and for all your advice.
Everything went really well. drs. Akagami/Westerberg and their team did a miracle. Dr. A. left a tiny bit that was stuck on the facial nerve, inside the IAC, but he is not worried that it will cause any problems. He said that I only have very mild weakness, which will fully recover (I can't even tell). The nerve was badly wrapped around the tumor.
Worse was the nausea, and yes, Nikki you are right about the Gravol.
Clarice if I remember well your big day is coming up too. You will be in my thoughts.
I will post a more detailed update once the lines stop jumping up and down ;)
Marianna
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Hi, Marianna:
I can't express how happy I am that you came through your surgery with flying colors! You give so much to this forum, we all consider you to be family and were worried for you (even while staying positive). It sounds like you had a remarkably successful surgery.
Please get some rest and heal quickly.
Warm regards,
TW
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Ahhhhhhh, so good to see your own post, Marianna! It sounds like you are doing amazingly well. I plan on following your lead! :D My surgery is a week from tomorrow.
How well I remember the jumping lines from my surgery three years ago. In fact, it took me quite awhile before reading a small print book was very comfortable. Wonder if that will happen again this time!
Thoughts and prayers continue that your recovery is "textbook."
Clarice
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Yay Marianna...onward and upward Girlfriend, onward and upward!
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Good news!!!
Jan
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You get 'em, girl!!
Now rest and listen to your body!
K ;D
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Marianna I can't believe that! The recovery is amazing! I am so glad to read from you!
I wish you the best!
Maraki
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Hi everyone,
thank you for all the advice. I still feel a bit off, but went for a nice walk in the sun this morning - a bit at a time. Today half of my skull feels totally numb, but I remember reading this on the forum.
Here are some more technical details, in case anyone is interested. I asked Dr. Akagami specifically if he thought that removal was more difficult because the tumor had been radiated. He felt it was easy to peel off in some areas and sticky in others. He said that it is easy for surgeons to blame radiation when they have difficulty but he doesn't think this was the case.
Facial nerve was wrapped the wrong way (above the tumor instead of below). It was thinned and stretched, but obviously the team did a terrific job monitoring it and stimulating it.
This experience has confirmed everything that has been said on this board: Researching the treatment team is the most important part of this journey. I was given terrible stats and most of my consults were very depressing. One doc gave me 100% chance of paralysis. The rest were giving 30-50%. Plus all sorts of very scary stuff (tracheotomies, swallowing problems etc). With the help of my friends here I learned that you have to be your own advocate - this is why I am so grateful for this forum and I hope that I will be able to help as much as possible, since now I am a part of the elite group with graduates of both treatment methods - ;D
Marianna
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Marianna,
I just had to come and give you MASSIVE healing hugglez!!!!!!!! So good to hear from you and sending wellness wishes right atcha! :-* :-* :-*
xo
Phyl
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Hi, Marianna ~
Like everyone here, I'm delighted with your obviously excellent surgical outcome. I'm also very appreciative of your kind words for the ANA forums and it's members. I look forward to your continued improvement as you recover and your continued presence on the forums as you use your knowledge and experience to help other AN patients, especially the newly diagnosed who are often scared and confused and can use the guidance and comfort of another person who has been where they are now worried about having to go. I know you'll be a huge asset to us all.
Jim
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Marianna
Awesome update - congratulations. You certainly did your homework for both treatments and got a tremendous result from the surgery notwithstanding some very dire predictions from some of the other specialists. Dr. Akagami has certainly shown ability on these boards - I think we have three great outcomes for board members here.
So happy for you.
Ann
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There have been quite a few more positive stories on the ANAC forum, and I have heard many more here in Vancouver. The care at VGH was awesome. They kept me two nights at ICU to make sure the nausea had subsided.
Here are some more details for the research types, based on what I asked Dr. Akagami. On the question of translab vs. retro as it relates to the facial nerve, he feels that translab exposes too much of the facial nerve at once, thus making it more prone to injury that's why he prefers retro for the larger tumors. My understanding is that he uses a pretty big incision for retro. He doesn't use brain retraction which can cause injuries to the brain/cerebellum, but lets the brain to retract with gravity. The team
uses nerve stimulation during the surgery, in addition to the monitoring. I was also given a prescription of an antibiotic, aminocyclin, to take the night before surgery and afterwards. Presumably there is some research showing that it has some protective activity for the nerve.
I am having the sutures removed tomorrow, hopefully this will help my neck move a bit easier. Other than that, I am almost entirely off medication.
Marianna
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Marianna,
Your husband and your posting have been so positive as I am facing surgery and if I don't read another's story yours is what I will take in with me, I hope to do as well, you sound like you have a great attitude. So glad you are doing well and it was a success~
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So glad to hear you're recovering in leaps and bounds, Marianna. And thanks for the fantastic information you've provided. I'd always thought that brain retraction was both necessary for retrosigmoid approach and traumatic. You really chose a fantastic neurosurgeon who knows his stuff and doesn't "paint by numbers."
I wish everyone on this forum could read your posts in this thread, but many will no doubt lose it in the crowd of other threads. I, too, have tried to stress to people facing treatment that the choice of their treatment team and facility were the most important decisions they could possibly make. It is totally worthwhile to travel, if one needs to, in order to get the best care. This is especially true for any type of brain surgery, whether radiological or by incision. It saddens me when someone on this forum chooses an inexperienced doctor in their small local market for convenience sake and suffers a poor outcome that damages them unnecessarily for life. I admire your determination that drove you to find the one doctor out of the many you consulted who would take you safely through this perilous journey and deliver you safe and sound at the end. Good for you. You worked hard for it and you deserve it.
May you continue to recover rapidly. We are all so happy for you!
Best wishes,
TW
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Hope your recovery is moving along without any major bumps in the road, Marianna.
Some days it will seem like one step forward, and then two steps backward the next day, (or maybe not), so just listen to your body and pamper and rest ~ take advantage of it while you can~!
Maureen
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Hi Marianna
You are doing great by the sound of it.I am so happy for you.
Take care lots of rest
Annx
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Marianna,
Nothing like reading how successful your surgery was. I'm sure you are very relieved. You must miss your babies and it being Mother's day in a few hours your heart might be a little sad now, but just think of your joyous reunion.
I'm curious as to how OHIP covers out of province surgery and treatment. When you are feeling up to it PM me with the details.
I'm so glad you are doing well,
Anne Marie :-* :-* :-* :-*
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Well, I am flying back tomorrow, just on time for mother's day. I am so thrilled to see my little ones. It has been a very difficult time and overwhelming for everyone, Vas, my mom who was with me throughout, my MIL who came to help out with the kids, but we managed to make it. I think I have a major case of wonky head - but improving everyday.
Rivergirl I read your story - it seems that you have a very competent team and I am sure you will have a successful treatment.
Tumbleweed, of course I totally agree with you. When I put together my personal experience with what I have read on the forum I realize that the best doctors are the ones that are also the most humble, caring and approachable. Drs like Dr. Chang, Akagami, Friedmann and so many others we have heard of on this forum who care enough to respond personally to their patients without having an attitude are the ones who also deliver the best results.
Anne Marie, most provinces have reciprocal agreements for health care (I think that Quebec does not). All I had to do was to show my OHIP health card. I will send you a PM.
Marianna
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Marianna,
Just catching up with your journey. Wow! So happy for you that you had a good outcome! Your posts re: your experiences with both treatments will be a tremendous resource for many. Bet your excited to get home and glad to have this behind you. Take care.
Mona
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So glad to hear you made it home for Mother's Day! So glad to hear another success story!
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Yes, my sweet little kiddos had prepared so many mother's day cards for me! And they made me promise that I won't have to go away again. There are quite a few success stories recently, I hope this can give great comfort to newbies who are researching their options.
Quick update: Still a bit wonky headed, but no balance problems or dizziness. I can ride in a car with no problems. My shoulder though is VERY sore and this restricts my mobility and this is the main reason why I don't feel confident to drive. I did have problems with that shoulder even before surgery, but I think that the positioning for 10 hours during surgery made things worse. So now I am trying some gentle physiotherapy exercises. Has anyone experienced a similar problem with muscles being very sore after their surgery?
Facial weakness is improving, essentially unnoticeable, although yesterday I realized that my right eye doesn't tear. So I guess this is a side effect from the weakness. The back of my head is still very numb, but I was told by my surgeons that this is normal and the sensation will return. However the good news is that the sensation has already fully returned in my face, which means that obviously after the pressure from the tumor was relieved the trigeminal nerve is functioning better.
Thank you all for your input and well wishes in this thread.
Marianna
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My log-in wasn't working from the Mac ... sorry for the delay.
Great news and glad you are home with such a positive outcome. (Hmmmm, maybe I will make it to Vancouver for treatment should this thing ever decide to grow!)
Glad you were home in time for Mother's Day and recovery continues.
Ann
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Marianna .....
Sorry about your shoulder issues! I had that happen after my first AN surgery three years ago. Always sleeping on my "good" side was not good for that shoulder. Had to have a steroid injection into the bursa at one point, plus some therapy. Also, we bought a new mattress and that seemed to help greatly. Wonderfully, our bed here at Seton Hall is so comfortable, it has not been an issue to sleep only on that side again.
Hope the soreness lets up soon!
Clarice
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However the good news is that the sensation has already fully returned in my face, which means that obviously after the pressure from the tumor was relieved the trigeminal nerve is functioning better.
Marianna
Hi, Marianna:
Did you have a loss of sensation in your face before your surgery? If so, for how long? I'm curious because if having surgery corrected a long-standing loss of sensation, this gives a lot of people hope that they may recover some function after having their tumor removed.
I'm so glad you seem to be doing really well in all other aspects, too, all things considered. I hope your shoulder feels better and your eye begins to produce tears again soon.
Best wishes,
TW
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TW, loss of sensation, or hypoesthesia was my presenting symptom, which led my family doctor to order the MRI. The presentation of my AN was a bit atypical, and the trigeminal nerve was heavily involved at its root entry to the brain stem. This also led to dry eye, because of reduced corneal sensation. Most of the doctors I have seen said that the trigeminal nerve is relatively "thick" and resilient and they had predicted that most likely it will improve after surgery. I actually remember the case of another forumite who had surgery with Dr. Akagami, who had trigeminal pain resulting from the tumor and it was immediately relieved after surgery. I read the surgical report and the EMG monitoring team was monitoring both the facial and the trigeminal nerve during the entire surgery. So yes, there is a very good chance of trigeminal issues to be relieved after surgical removal.
I am pretty sure that the altered taste sensation and the dry eye that I have now are due to the facial nerve weakness. I read that the facial nerve controls the taste on the anterior 2/3 of the tongue. And of course it controls lacrimation too. I am hopeful from what I have seen on the forum that these will improve with time.
All the best,
Marianna
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Thanks for explaining all that, Marianna. :)
Best wishes,
TW
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Hi Marianna,
I have been wondering all this time where and where your surgery was and going on the forum today I was able to read all the updates. Thank you and your husband for keeping us updated as I have been wondering what was going on but did not realize that you were keeping updates. I am so glad it's over and it appears that you are recovering well and slowly. Way to go! It's been quite a ride I bet. Glad you are all doing well. All the best.
Vivian