Marianna's updates

[mk]

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

[Rivergirl]

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~

[Tumbleweed]

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

[moe]

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

[rayden1]

Hi Marianna

You are doing great by the sound of it.I am so happy for you.

Take care lots of rest

Annx

[yardtick]

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 

[mk]

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

[Anomar11]

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

[MandaPanda]

So glad to hear you made it home for Mother's Day! So glad to hear another success story!

[mk]

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

[Keeping Up]

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 

[CHD63]

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

[Tumbleweed]

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

[mk]

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

[Tumbleweed]

Thanks for explaining all that, Marianna. 

Best wishes,
TW