ANA Discussion Forum
AN Community => AN Community => Topic started by: Tinu on October 26, 2006, 08:05:32 pm
-
I'm sorry, I don't know where else to go. I'm trying to be so strong for my DH and his mom. A year and a half ago my mother in law was diagnosed with AN. It wasn't very big, 1.8 cm, and due to her age, they decided to watch it.
Now last measurement is 2.5 cm, still not huge, but in the past 6 weeks she's gone from completely mobile and active, to completely immoble, confused and can't even write. Last Friday we brought her to the ER because she fell. Now, she's at the best neurosurgery hospital in the area. They're going to put a shunt in tonight to relieve some intercranial swelling she's had recently. After that, we'll see about when to have the surgery to take the AN out. Both drs agree that it needs to be taken out now.
I'm scared. I just want her back to normal, and be able to recognize us after all this is done.
-
Tinu - Hang in there. I'm 39 and I was just diagnosed last week. Ask the surgeons lots of questions .... find out how many ANs they have removed, etc. Good luck!
-
God be with you Tinu. I'm sorry you have to turn to this site. The people on here are very helpful and super nice though. Not that any type of similar scenario's, this place is a good place to turn. Our prayers are with you and your family.
-
Tinu, keeping you in my prayers! Ask the doctors how many AN surgeries they have performed. Just because they are neurologist doesn't mean they see any. On the bright side there have been some people on here who were in worse shape and are doing ok after surgery. I hesitate to use the word just fine as I don't think any of us are 'just' fine since our treatments we learn to adapt and move on as best we can! She will need lots of love and patience to get through this..remember to take time out for you and your family too!
-
We're in Boston. Mom got moved to the White building in MGH. Her doctor is McKenna, which I've read on here has some really good reviews from people here. I'm not sure who the surgeon will be though, but I'm sure there's probably one or two he works with on a daily basis.
-
There are several of us here treated surgically at MGH. My surgery was with McKenna and Barker (the neurosurgeon at MGH) 6 weeks ago. And I can't say enough good things about both of them. I just had my final post-op visit yesterday with Dr. Barker and I'm doing great! I know some people have complained about their bedside manner (which, frankly, is not my first consideration when choosing someone to open up my head!), but I've found both of them to be helpful, concerned, and they really listened to me.
If I can be of any help or answer any questions, please let me know. If your mother-in-law does have Barker as one of her doctors, let me know - there are a few hints I can give you to make navigating his office a bit easier.
Good luck to you and your family! Your mother-in-law is in great hands with MEEI/MGH.
Katie
-
Tinu,
My thoughts and prayers are with you and your family. I'm sure everything will be fine or better than it has been for you all. You didn't say how old your m-i-l is. It is okay to be scared. I think all of us were at one time or another. We are hear for you.
Hugs,
BrendaO
-
Tinu,
I too had AN surgery at MGH and I am doing fine. MGH is a top notch facility.
Wishing your mother in law the very best outcome.
Jane
-
Tina
It can be really scarey when changes happen so fast. Once the shunt is in place hopefully you'll see some rapid improvement with the balance, and confusion.
Know that you're in my thoughts and prayers. Got my offical socks on for good luck too. Take good care of yourself so you can be strong for your family. Please keep us updated.
Hugs
Raydean
-
Thank you everyone. She's having the shunt placed in now. We're just waiting for the surgeon to call us and tell us everything went well. *crosses fingers* She's 71, I forgot to tell you guys that.
McKenna originally wanted to watch it a year and a half ago when they first found out about it, she took it to mean they just didn't care. Needless to say, until she started having alot of problems and we forced her to go back 4 weeks ago, she hadn't gone back.
God, just seeing her that way in the bed, so helpless, it just tears me apart, but I know I have to be strong for my DH and my daughter.
-
Hello Tinu:
Your mother-in-law should be just fine. The more trouble she had with balance before surgery, the easier it should be to recover. Hopefully the shunt will help with the other symptoms. The brain does not like to be compressed with the extra CF fluid.
Best of luck to all of you. Kathy
-
Well, the surgeon never called us last night. My DH spent a few hours staring at the phone waiting for it to ring. I told him that in this case no news is good news, although I would have appreciated it if they would have called us.
-
Hi Tinu:
I'm 20 weeks out from surgery to; first, 'de-bulk' a huge (4.5) AN followed by 26 low-dose ('fractionalized') radiation treatments intended to kill the remaining tumor cells. Pre-op, I could hardly walk a straight line anymore and slept a lot (unnaturally, so). I had lost 30 pounds - and I wasn't on a diet. Incidentally I'm only 8 years younger than your Mother-In-Law (63) and I came through the whole experience quite well. The neurosurgeon said that when he opened up my skull, the CSF ''gushed" out but my displaced brain quickly repositioned itself with only a very slight nudge from him. I had no post-op headaches and regained my equilibrium fairly rapidly. I was driving, with my doctors permission, 4 weeks post-op. I certainly recognized everyone I knew and except for some crabbyness while I was getting back to 'normal', nothing really changed. I underwent 26 low-dose radiation treatments (September 11 - October 16 - weekends off) with no adverse effects and now, some 5 months post-op, I'm doing great.
As everyone here will tell you, we are all very different and so, not everyone will have the exact same outcome, good or not. I trust that, with competent, AN-experienced surgeons, your MIL will come through this O.K. Please don't be scared. I will say a prayer for her, tonight. :)
Jim
-
Wow Jim, your symptoms are very similar to her. She was sleeping alot, till 10 or 11 AM before we brought her into the hospital. She definitely lost alot of weight in the past few weeks before we brought her to the hospital.
I finally talked to her last night, and she has her sense of humor back. She tired quickly on the phone, but she was eager to be able to eat again (she was having some nausea problems post-op). She also said she didn't have any headaches which was great to hear. Now we can finally look towards the surgery and find out when to do that.
Tinu
-
Hello again, Tinu:
I'm happy to learn of your mother-in-laws improved condition. ;D I trust it will continue.
By the time it was found and identified, my AN tumor had displaced my brain (literally pushed it to one side) and had begun to displace my cerebral cortex, which greatly alarmed my neurosurgeon - so much so that, after receiving and confirming the MRI Acoustic Neuroma diagnosis, he scheduled my surgery for 5 days later- and was the main reason for my growing lethargy. My severely diminished appetite and subsequent weight loss was partly due to my loss of taste due to some numbness on my tongue (another AN symptom) and was also related to the fact that my cerebral cortex ('brainstem') was beginning to be affected by the growth of the already-large tumor.
Now, almost 5 months post-op, just about all the pre-op symptoms are gone. I've gained back some of the lost weight (not too much - and I want it that way, as I was probably 20+ pounds over my ideal weight, pre-surgery). Although I have some slight tongue numbness, it's slowly diminshing as the AN-affected nerves heal and my sense of taste returns to normal. I only doze off before my normal bedtime if I'm really tired - and never during the day. I sleep between 7 and 8 hours per night, maximum. Seven hours is typical and just about right for my level of daily physical activity, which is somewhat energetic - but not overly physically demanding (I'm retired but I strive to stay active).
I hope your mother-in-law has a similar recovery and, from your description, I think the odds are good that she will. If she survives the surgery well and is already rapidly returning to her 'old self'...that is a very good indicator. I'm not a physician so this is simply my personal opinion but if your MIL is/was relatively healthy (as I was and still am) pre-op and is personally motivated to get back to her former state of health and physical activity, she likely will be able to do so. Regaining equilibrium is always a challenge for any AN patient but I was able to accomplish it pretty well in a reasonably short time by doing a lot of walking (on uneven surfaces when possible - a real challenge) and in-home exercises when I first got home from the hospital. It all adds up. Age is probably somewhat of a factor in any surgical recovery, of course, as is prior physical condition, but age - by itself - should not be used as an excuse to avoid the effort it may take for your mother-in-law (or anyone else who has underwent successful AN removal surgery) to regain most of their natural physicial abilities in time, assuming no major cranial nerves were damaged and there are no real post-op complications.
I refused to let my age be a hindrance to my recovery. I trust your Mother-in-Law will feel the same. I wish her and your family the very best in the days and weeks to come as she returns to health.
Jim[/color]
-
Tinu,
I went through the same deal as your Mother-in Law: shunt as well as gigantic tumor. I also had the same doctors at the same hospital. Just had another MRI today! Spent the whole day at MGH - my old alma mater! Had some blood work done and a physical. Also had lunch in the cafe.
She's in the best hands. She'll be okay. Just ask Katie and Jane!!
Paul
-
And I'll be there Saturday for my post-op MRI. Let me know if you want to meet for coffee!
Katie
-
Katie,
I would have loved to meet for coffee but I'll be in Athens and Solon, ME this weekend yuckin it up with all the yahoos! My band has a weekend gig up in wilderness at a place called The "Solon Hotel" up thar. It's the opening of hunting season and that's big deal up there! Everyone will be decked out in camouflage and flourescent orange. My friends live on a 267 acre farm with a cape, outbuildings and a huge, post and beam cathedral-like barn purchased for $90k six years ago. Can you believe it? You couldn't buy a tar-paper shack on a 1/4 acre for that much around here!!
Cya at the brunch!! Paul
-
Tinu-
Like Jim I had a large (tho not as large as Jim's AN) 3.2cm with brainstem compression. I also had it debulked and followed up with 30 treatments of FSR all done at Mass General. As I stated before MGH is a terrific facility with some outstanding doctors. Your mother-in-law is in very good hands
Jane
-
Hi guys, sorry its taken me so long to get back. The past few days have been crazy. I talked to McKenna and he doesn't want to do any more brain surgery on my MIL until she can heal from the shunt, so she was just moved to Shaugnessy Kaplan Rehab yesterday. I was so psyched to hear that, since I work at Salem Hospital and can now visit her on my breaks, during lunch, etc.
She is doing so incredibly well! She can write again. She can think independently. She knows what day and date it is (a HUGE improvement from three weeks ago when she was writing checks for 1989). Her biggest personal concern now is how her hair looks, lol.
McKenna said he wants an MRI done in 6 weeks, with a follup visit to see what they will do about the tumor if anything at all. If they do something about it, it will either be radiation, or just taking a small piece of the tumor out, not the entire thing.
-
That's good news Tinu! Sounds like she'll come back from the ordeal.
I spent the whole day at Mass General yesterday getting another follow-up MRI and some other tests.
Paul