ANA Discussion Forum
General Category => AN Issues => Topic started by: Kathy M on December 18, 2008, 08:44:26 pm
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Hi All!
After 2 consultations, I have made my decision for microsurgery in Cincinnati, Ohio at the Brain Tumor Center, University of Cincinnati Medical Center with Drs. Tew and Penzak. The big day is 1/13/09 and I am looking forward to getting on the other side of this thing (although the panic comes and goes!). Retrosigmoid approach for my 3+ CM AN. I am taking time off work between Christmas and New Years - perfect timing to get myself, my family, and my house ready. Thanks to all of you for your advice, calming me when I've been a basket case, and for sharing yourselves with my daughter, Kristin, too.
Any thoughts on how to best prepare for this before and after surgery will be appreciated, as always!
Kathy
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Good call, Kathy. Dr Tews is co-chairman of the ANA medical advisory board, so I have to say nice things about him. ;)
Congratulations on making the decision. Now you just need to go on auto-pilot for a couple of months, and let the whole thing unfold. I'm sure Kristin will take care of you. :)
Steve
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Hi Kathy,
Here was a thread from a while ago in which people discussed what to bring to the hospital.
http://anausa.org/forum/index.php?topic=34.0
I hope it helps.
All the best,
Kate
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Hi Kathy,
I just had a retro on 12/10, and I think that bringing several pair of those nice comfy, snuggly socks is a definite. I would also bring chapstick-hospitals are very dry, as well as cold. I also had my family bring my orthopedic pillow from home. Your neck and back will be in a strange position during surgery, and at one point in my stay, my back hurt way more than my head! The hospital got a heating pad for me as well--heaven!
Priscilla
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Before you know it you will be on the other side of that bridge. I had my surgery 2 months ago and it is so weird to think that the surgery date has come and gone and life is pretty much back to normal. One of many things that helped me is to have a goal. Believe it or not my goal was to look forward to my next AN support group meeting and to encourage others that were facing what I had gone through. My wife took a pad and paper and wrote down every medicine and time that was given to me. This was a big help due to the shifts the nurses had. The biggest help for me was to give control of what was going to happen to GOD and rely on HIS strength. Hang in there and we look forward to hearing from you after your surgery. You are in peoples thoughts and prayers.
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Kathy,
I live in Cincy and started researching surgeons recently. Dr. Tew is very respected as is Dr. Pensak. Dr. Tew is the director of UC Brain Tumor Center / Mayfield Clinic is highly respected and on of the best here in the Midwest. You're in very good hands.
Not sure if you live here or are traveling in to have your surgery. If the later, I'd be happy to help with local info etc... I know you'll come through this just fine.
Mike.
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Kathy,
I know you and I will both do well. In our e-mail conversations I did not realize you had a daughter. I have 3 sons and they are being very quiet about all of this. I am sure they are scared. I think I will show them this website and maybe they can get some of their questions answered. Boys are so different about this type of thing.
Jill
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Kathy,
I know you and I will both do well. In our e-mail conversations I did not realize you had a daughter. I have 3 sons and they are being very quiet about all of this. I am sure they are scared. I think I will show them this website and maybe they can get some of their questions answered. Boys are so different about this type of thing.
Jill
Not to hijack, but this spoke directly to me. I have 1 daughter (8) and one son (3). My kids were 7 and 3 when I had my surgery. Both have done remarkably well with the surgery and recovery. My youngest even was telling people that I got into a fight when (about my scar). What has been said here, and is remarkably true, kids are able to adapt easily. Both of my kids visited me in the hospital. Both knew something major was going on, but both took it in stride. I can't speak for older kids (don't know how old yours are), but my impression is that kids are very much like men (or the other way around) in that they just want to know that you're gonna be there after surgery/radiation. As long as you reassure them that this won't be the end, then the rest they can deal with. Their fear comes from feeling like you won't be there for them. Once they are convinced that everything will be fine in that department, then the SSD, or palsy, or whatever is minor in their minds.
Good luck to both of you..
Regards,
Brian
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Kathy:
Congratulations on selecting a surgeon and facility for your surgery. This decision is one of the more difficult parts of the AN journey and it's always good to be past it and have confidence in your choice.
I suspect that preparation for surgery is usually over-emphasized a bit and really consists in enjoying the time ahead as much as possible, eating well and attempting to maintain your health and strength. I had very little time to 'prepare' for my surgery and was underweight. I did fine and was home in less than 5 days. I recuperated within a few weeks and things have been all positive since. I put it in God's hands and fully trusted my doctor so there was little for me to 'do'. I took nothing special to the hospital and didn't need much (O.K., I'm a guy). What little I needed my very supportive wife brought or obtained somehow. I do urge all AN patients , especially those undergoing surgery, to have an advocate, before, during and after, if possible. Whether its a spouse, sibling, parent or friend, you really need someone with you as much as possible, looking out for your interests. My wife was with me every step of the way. She didn't leave the hospital for 3 days (she slept in the nurse's sleep area, after my surgeon told the nurses to accommodate her). I deeply appreciated her presence, even when I barely knew she was there. I fully believe that her attention was a benefit to me in many ways and certainly lifted my spirits.
I believe we've covered the various approaches on telling children about your AN and surgery. My only child was an adult (27) at the time of my diagnosis and surgery so I have no credible personal experience to offer but I think 'Pooter' and others have given some solid advice. Of course, a parent understands his or her own children better than anyone else so I'm sure you'll employ your understanding of your children to decide how best to handle this with them.
I wish you a successful, complication-free surgery and a rapid and total recovery. :)
Jim
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Hello Kathy,
Best wishes to you on your impending surgery and recovery!
I had my surgery on Dec 8th. My two most constant companions, aside from my wife, were H2O and chapstick. Stay hydrated. Hospital gowns are a bit lacking, so I really enjoyed pajama bottoms to cut the draft. Something about kilts comes to mind, but proably best left unsaid.
The forum is a great place for information, as you know, so fill the gaps in your knowledge about the process, and the outcomes. Use the weapon of knowledge to your advantage.
Cheers!
Ken
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Thanks so much for all the encouragement! I'm actually looking forward to this - it's been so long and drawn out since my diagnosis, even though it was only 11/14! I draw so much strength from all of you!!
Jill, I have a son, too. He is 23 and Kristin is 19 - they are as different as possibly can be. Ryan is very quiet, smiles when he knows I'm concerned but other than he doesn't say much at all. Kristin is my rock - researcher, cheerleader, shoulder to cry on - I did a LOT of that during my first 2 weeks of knowing this thing was in my head! She knows as much if not more about ANs than I do. I agree that boys are gonna handle things differently. I would try to guide them to what to read - some things on this forum might scare them a bit (they sure did me!!!!). Most, though, have been just the ticket for my peace of mind.
Keep me posted on how things move along for you!!!
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Kathy M -
I'm chiming in late here - so much ice and snow the schools, as well as my work, were closed today and I spent a few hours shoveling ::)
Congratulations on making your treatment decision. There seems to be a lot of that going on lately ;)
Like most have already said, Drs. Tew and Pensak both have very good reputations; you're definitely in good hands.
Don't forget to add your "big day" to the AN Calendar - you'll find a link at the bottom of Steve's profile.
And, hi and welcome to JohnnyDiaz - haven't noticed you around here before. Thanks for joining us :)
Jan
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Kathy, as we've discussed before, I feel like we have a lot in common(age, type/size of AN, retrosig surgery, 2 great kids, 2 great doctors). That should add up to a great outcome like I had. Sounds like you've got a great surgical team lined up with great support on the family side as well. I know you're ready to get on the other side asap....waiting for me was the most difficult part. Know that you've done all you can and now trust your experienced doctors.
Enjoy the holidays.
Patrick
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Hi Kathy,
Glad you have to this point in your journey... i think diagnosis and decisions are the hardest part. Then you just wait, do it, and recover.
I didn't take much to the hospital... was told not too. One little thing that i did take (on the advice of many here) was chapstick! and I couldn't have done with out. I also brought extra water with me and gatorade. Didn't use any kind of make up or face stuff, otherthan those cleansing wipes after a few days. I could have REALLY used an eye patch as my eye wouldn't close and they didn't give me one in hospital (!!??!). They did sell them in the drug store downstairs, but they were awful...too tight. A light robe is a good idea. Deoderant a must.
At home, i needed a chair for showering (used for a about a month). My husband also had a (rental) walker waiting for me (i used on in hospital a few times for walks), but i didn't use it past the second day (we have a small house, bungalow, which helped).
Glad you have your daughter looking out for you. I wouldn't have made a whole week in hospital without my dearest mom.
Good Luck.
Trish in Toronto Canada
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Hi Kathy
Congratulations on making your treatment choice. I also think making your treatment choice is the hardest part of this experience. Now that the choice is made, don't look back and second guess anything. It so\unds like you are in good hands and before you know it,you'll be a postie. Hope you can relax a little and enjoy the holidays with your family.
Best wishes,
Wendy
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Today is the day I'm printing out the list of things to take to the hospital and going shopping - thanks for that list!!! Does anyone who had a retrosigmoid surgery have any suggestions on a good pillow? Mine is really soft, very fluffable, but no support - I'm a side sleeper. I've seen all kinds of variations of pillows at stores, but there's too many options!
Thoughts?????
Kathy
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Kathy -
I had retrosigmoid.
The first few days in the hospital you'll probably have the ever-so-lovely mastoid bandage wrapped tightly around your head, which IMO makes it impossible to sleep on your side. Although I'm a side sleeper, I had to sleep on my back because that was the only way I could get semi-comfortable. Sleeping on my back for a time also seemed to help my stiff neck feel better.
I'd look for a nice, firm pillow with support.
Eventually I was able to go back to sleeping on my side and I started off sleeping on my "good" side until your AN side healed - which was several weeks. Once my AN side wasn't so sensitive I switched to sleeping on it so that my good ear is not against the pillow. I've found that if my good ear is to the pillow I miss lots of stuff - telephone and alarm ringing mostly.
When I really want a good night's sleep - and I don't need to hear an alarm - I always sleep on my "good" side; makes for a better night's sleep.
That's my two cents worth,
Jan
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Today is the day I'm printing out the list of things to take to the hospital and going shopping - thanks for that list!!! Does anyone who had a retrosigmoid surgery have any suggestions on a good pillow? Mine is really soft, very fluffable, but no support - I'm a side sleeper. I've seen all kinds of variations of pillows at stores, but there's too many options! Thoughts????
Kathy:
I underwent the retrosigmoid approach surgery. The large and too-tight headwrap is a burden but can be cut a bit (by your doctor) to loosen it and if you implore your doctor, as I did, he'll probably remove it in a few days (3, in my case). I can sleep on anything but, like the inestimable Jan ('leapyrtwins'), I'm a side-sleeper and it was tricky sleeping on only one side, but I managed. The 'AN side' (my left) was sensitive for about 4-6 months, but eventually healed and I now sleep on that side with no problem. For a pillow, I would choose one that is firm but not 'hard'. However, each of us probably has their own definition of what constitutes 'firm' (or soft) so I would guess that, whatever others may choose or recommend, in the final analysis, you'll have to decide for yourself, which is usually the best course to take, anyway. I hope you find the pillow of your dreams. :)
Jim
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Kathy,
Believe it or not, I actually got a pregnancy pillow wedge that prevents you from turning onto your side (just one side but that's all I needed). That plus my good foam pillow were great. I still can't sleep on my AN side but that's more because of the increased numbness on that side. The neck wrap that you could heat up in the microwave helped me as well. All of these things for home. In the hospital I used what they gave me and the bed had very good support as did the pillow. Hope you do great!
Marci
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Best wishes, Kathy!
You also made it into the weekly update from LADavid: http://anausa.org/forum/index.php?topic=8468.0
We are with you. I'm sure Kristin is too. See you back soon!
Steve
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Good luck, Kathy.
I'll be praying for you. See you soon as a postie! ;D
Jan