ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: daydreamer71 on August 12, 2008, 11:53:20 am
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Hello all!
I've been reading posts since finding this site in June with the intention of introducing myself but for whatever the reason, this is the first time I've posted a question. Call me silly but I didn't know if my little (15mm x 17mm) AN was that big of a deal compared to some of the stories I've read here. Anyhow, with surgery 2 weeks away, I'm finally ready to start asking questions.
My main concern right now is what to expect after surgery. I've been told a 3-4 day stay at the hospital is typical but what should I expect when I return home? Will I need someone to stay with me for a day or 2 after surgery, for a week? My fiancee is self employed so having him stop in to check on me is not a problem but do I need to call him for every potty breaks? ;D
Secondly, I read somewhere (not sure which AN site) that I can't wash my hair until the sutures are out!? :o Ok, that sounds really gross! LOL!!! Any beauty secrets on that one? Better yet, someone please tell me it isn't so!
Oh, I guess some personal stats would probably help you answer my questions. I'm 37, pretty healthy (other than I could lose about 10 lbs. but I've been "stress" eating, and oh yeah, this booger in my head ;D) and tend to be too independent. I'm trying to be positive about this...sometimes I think people close to me are more worried than I am but hey, I can't change it. Let's just take it out and hope for the best.
I thank you all in advance for any info you can give me. My local doctor has only seen 2 other AN patients in his 30+ years in practice so the only info I've been getting is from what I've read online. My consultation at the University of Michigan was great. I've got 2 wonderful surgeons so I feel very confident...I just wish I had 1 here to play 20 questions with some days. Thanks again!
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Daydreamer71:
Hi and welcome. I'm glad you decided to 'de-cloak' (Star Trek reference) and post a question.
Post-surgery, when you're discharged from the hospital (assuming no complications arise) you may be on a 5-day regimen of steroids, often prescribed to help reduce swelling, immediately post-surgery. The steroids can play havoc with your sleep cycle - so be prepared. They didn't affect me that way, but I don't seem to be typical in some respects. You'll be fatigued, which is to say, have an onset of extreme 'tiredness' with little warning, forcing you to sleep or rest quite often. This usually subsides in a week or two but can take months to totally disappear. You may need to practice regaining your balance functions, which can also take some time. You may require a physical therapist to assist you in this area. Some AN patients do. You may probably already know that you may have unilateral deafness in the affected ear. Most AN surgical patients do, but not all and not always a 100% hearing loss. A lot depends on the type of surgery and whether you had any usable hearing, pre-surgery. Your doctor can give you more information on this specific issue. I'm sure I'm forgetting something but these are the more important points regarding your post-op experience as it relates to your first week(s) at home. You will need at least some help for housework, etc and don't expect to be driving for at least a few weeks.
Generally, you can wash your hair with the sutures still in. I'm a guy so in typical guy fashion, I just covered them with thin plastic food wrap while I shampooed, but the ladies must have even better ideas, I'm sure. :)
Thanks for joining us and I trust we'll be of help to you. Please post your actual surgery date on our 'AN Treatment Calendar' or ask a moderator to do it for you. http://my.calendars.net/AN_Treatments (http://my.calendars.net/AN_Treatments)
Jim
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Welcome, daydreamer71! As I'm sure you have read in the posts here, everyone's experience is different. I would encourage you to have someone around at home or very close by until you are confident you can manage by yourself. Immediately after your discharge home you'll be a little unsteady on your feet and you will tire easily.
As far as your hair goes, there are several dry shampoo products you can use. I used a gel and it worked very well. I also wore pretty scarves. I wash my hair daily and I didn't think I could go for any longer than 48 hours without a shampoo, but the gel made my hair both feel and smell clean.
Good luck and keep us posted on your progress.
staypoz
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Welcome Daydreamer71,
Your AN is borderline small/medium. No matter the size, an AN is a big deal. But, the bigger the tumor, the greater the risks of nerve damage during surgery.
What procedure will you be having? And if you don't mind sharing, what were your symptoms that made you go to the Dr.? How are your hearing and face? Any headaches or dizziness?
There are many factors that affect your recovery post-surgery, such as your age, health, and surgical approach. You are young and healthy--these are certainly in your favor. Middle fossa and retrosig require that the brain be moved aside to get to the tumor, resulting in a longer recovery period than translab.
I had retrosig for a 1.5cm AN in June. Almost 2 months post-op, I still have dizziness and balance issues. Also have headaches. But it all seems to be getting better.
I stayed with my sister and her family for 2 weeks after being released from the hospital. there was always someone around to help me out and in case of an emergency. I was sent home from the hospital with a walker, which allowed me to get around on my own. But after 2 days, I relied more on the wall and furniture to help me stay on my feet. I did use a cane for another 6 weeks after that. I did need help with such activities as serving my meals. And for a good month or so I had trouble bending over--it strained my neck a great deal causing nasty headaches.
For 3 wks, my head was too swollen to wear my rx glasses. So I postponed reading til then.
I was able to shower (including hair) on my own 6 days after surgery thanks to the spa chair I found at Target. My staples didn't come out until 10 days post-op, but that didn't interfere with my hair-washing.
Those 10 extra lbs. you mentioned will come right off during your stay in the hospital. I call it the AN diet plan. I couldn't keep anything down until 1 week post-op.
What's your exact surgery date?
If you go to http://www.my.calendars.net/AN_Treatments you can put your surgery date on the AN event calendar. This way we can send you good vibes on your big day.
I'm sorry you had to join the club, but glad you found us.
Syl
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Thanks so much for the quick replies.
Looking back now, the first sign I had of a possible AN was about 3 years ago when I woke up and couldn't hear a phone conversation well on my left side. An ENT specialist noted my problem was due past ear infections and allergies (my regular dr. was considering putting tubes in my ears about 10 years prior). Jump ahead to April of this year and again, I woke up 1 morning and I could hear even less. Assuming it was allergies again, I went to my regular dr. for drops/antibiotics. I jokely said "let me guess, I've got a tumor" and he gave me the weirdest look. Needless to say, it wasn't as funny anymore. :( So after a hearing test & MRI, it was discovered I had an AN.
Other than the loss of hearing on my left side, I don't have any other symptoms...possibly slight balance issues but I attribute them to getting older so who knows. I'm not stumbling but I do tend to head for the bleachers with the handrail when I'm at the kids' basketball/volleyball games instead of bouncing up the bleachers like I used to do.
I'm glad I will be able to do something with my hair. Not that I'm overly vain (pretty much a tomboy) but I can only handle a day without my hair looking/feeling pretty gross.
I live with my fiancee, and with the exception of 4 days every 2 weeks, we have our teenagers, ages 13, 15, and 16, at the house so the only time I would be alone is from 7:30 a.m. until 3 p.m. I do have the option of having my mom, aunt or uncle be at the house but if it's not necessary that would be a bonus. I hate to disrupt people's lives but they are all more than willing to help if I need it. I have a very strong support system, I just tend to want to do everything myself.
I hope that AE diet works. ;D This is off topic, but I lost 55 lbs. 2 years ago and the last thing I want to do is gain it back. Needless to say, I'm back at the gym to try to get back where I was.
I don't know which procedure I'm having yet but I was told they are going to try to preserve what hearing I have left which at my consultation in May, I still had 75% hearing. I'm from a very small town (pop. 1,513) and the smallest county in Michigan, so I'm used to calling my local dr. and actually speaking to him occasionally. I have not spoken to a dr. since my consultation in May and at that time they weren't sure which approach they were going to take other than it would be surgery and not radiation.
Surgery is set for August 27 at the University of Michigan with Dr. Thompson & Dr. El Kashlan.
Another question...I'm 4 hours from U of M, how many post-surgery trips have you made to your surgeons?
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Another question...I'm 4 hours from U of M, how many post-surgery trips have you made to your surgeons?
Although I had both surgery and radiation, I believe I can answer your question with some credibility.
I saw my neurosurgeon a week after my surgery (June 7, 2006). He removed the surgical staples and gave me a neurological exam. I saw him again a few weeks later as a follow-up. Then, I had an MRI every six months which was always followed by a brief consultation with my neurosurgeon. He gave me a quick neurological exam, asked me how I was doing, etc and I asked him any questions I had, which were few. I did that for two years. My last MRI, earlier this month, reflecting the results of the FSR (radiation treatment) showed continued tumor shrinkage and necrosis. Hence, my neurosurgeon has decided to allow me to have an MRI annually from this point. I also see my PCP on an annual basis, although I'm in good health. I do this to humor him. ;).
Generally, you'll see your doctor at least a few times following your surgery. Exactly how often will depend on his protocol for post-op AN patients and your rate of healing. Remember, there is no definite standard for post-op visits. What you're going to get here is an approximation based on other's experience. Still, it should be of some benefit to you. One hopes.
Jim
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Welcome to the forum officially now that you've decided to join in on the fun instead of watching on the sidelines. ;) I'm sorry you have an AN, but I'm glad you've joined in.
Each of us experiences something a little different from surgery. I'm now back at work, driving, etc.. and I'm almost 100% back 3 months or so post surgery (I've been back for about 1 month). But, that's not to say that the road was not bumpy along the way. I went back in the hospital for 4 days at about 1 month post surgery due to having an allergic reaction to one of the meds I was on. Had that not happened, I was set to be back at work prior to then and was progressing well. Debbi had an infection and a PICC line for 2 weeks (?) because of it. Others, Jim was back doing "normal" things 2 weeks post surgery. By all accounts, others have had quick recoveries as well. We all react differently to surgery, the complications or lack thereof, etc..
You've decided what your going to do, and ya certainly sound like you are determined so you will be fine. Post surgery, you'll need some help a week or 2 after you are at home (put the fiancee and kids to work and milk it as long as possible!) and you will probably want to sleep a lot. Other than that, you will just need time to let your body heal from surgery. We all learn a lot of patients along the way, and you will probably do that too.
Good luck on your surgery! I'm confident it will go well for you during and afterwards. Lean on the people in this forum for help when you need it. That's what we're all here for and why we keep coming back.
Brian
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Hi Daydreamer and welcome,
I know you'll find this a useful place to lurk and post in the time before and after surgery. I had a 3 x 4cm AN that originated from my trigeminal nerve. I was practically asymptomatic and the tumor was found because I have a fabulous primary care doctor.
Because of size and location I was not a candidate for Gamma Knife and so had retrosigmoid surgery hoping to save both facial and hearing nerves. My surgery was not long (maybe 41/2 hours) and I am now 3 weeks post op and have had no serious complications. I have facial numbness which is slowly improving, some decreased hearing, and very mild balance and fatigue issues. I exercised like a demon the two weeks before surgery; I don't know if this has had anything to do with my recovery time but it sure did help my mental state. I am walking a couple of miles a day and hope to start running as soon as I feel strong enough.
The first couple of days in the hospital were rough but the drugs were good and I progressed very quickly to a pain-free state. I was home within 48 hours but I am told that is unusually short. I definitely needed my husband at home with me for the first week, and probably would have been fine after that but I couldn't kick him out. ;) As much as you might want your independence, my advice is to line people up who can help you and who you are comfortable with and if you don't need them you can always send them away.
All of this is to say that everyone is different and will experience different things, but in the long run, you will be fine. I think you will also find that patience (not my strong suit) is absolutely imperative. Some folks (like Jim!) have a pretty quick recovery, others take longer, but we all get to the same place eventually.
Please feel free to send me an email (you'll find the address if you click on my name) and we can talk further.
Today I drove for the first time, visited my therapist (long story) and regained a small amount of feeling in my lower lip. I am dancing the happy dance.
Best,
Marci
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My main concern right now is what to expect after surgery. I've been told a 3-4 day stay at the hospital is typical but what should I expect when I return home? Will I need someone to stay with me for a day or 2 after surgery, for a week? My fiancee is self employed so having him stop in to check on me is not a problem but do I need to call him for every potty breaks? ;D
Secondly, I read somewhere (not sure which AN site) that I can't wash my hair until the sutures are out!? :o Ok, that sounds really gross! LOL!!! Any beauty secrets on that one? Better yet, someone please tell me it isn't so!
The first few days at home I couldn't have done without someone there full-time. Mostly because I didn't want to do the extra walking to get water to take meds, fetch a snack if needed, etc. I could walk if needed (like to go to the bathroom), but I didn't want to move more than I had to. By about 4 days post-op, that was much better, but I still wasn't driving for a month.
As for the hair, I have to say it was pretty gross at first! LOL! You can't wash until the big head bandage comes off (for most people, this is when you leave the hospital - mine was a couple days after), but with a gentle shampoo and a very gentle touch I could wash my hair even with the sutures in after that. I have to say, it took several days of washing 2-3 times in a row to get my hair feeling clean again! My mom (who was staying with us to help take care of my young children and is a nurse) actually did my hair washing the first couple of days.
If you have a handheld showerhead, that actually helps *a lot*. You can sit down in the tub to wash, because your balance will probably be funky at first - especially when you go to close your eyes and lean your head back! Another suggestion is to get the "No Tears" baby shampoo. That way if you can't close your eyes (because of balance or nerve issues) you don't have to worry about getting shampoo in them.
Katie
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Katie, thanks for the tip on the handheld shower. I'll get 1 put in before I leave. Now that I think about it, when I close my eyes now, I get a little tipsy. I guess that just must be another AN symptom.
Jim, thanks for the heads up on the return visits. I know everyone's situation is different but it's nice to have an idea of how many long car rides to expect. :( I'm not sure who will dislikes the 4 hour drive more, my fiancee or me. LOL!!! I hate riding in a car. Not that I get sick; I just don't sit still well. I'm nearing 40 but put me in a vehicle and I'm 5 all over again. When are we gonna get there!?! LOL!
Marci, nice to hear you're out walking & driving already only 3 weeks post-op. Patience...not my strong suit either but I guess I won't have a choice there.
Jim, I'm sure my fiancee & kids will be very helpful but I'm so used to taking care of everyone else. This is gonna be tough to let someone take care of me but who knows, I may actually enjoy the pampering. ;D
What about wearing contacts again?? I've read a lot of posts that say there is a problem with dry eye. Any of you able to wear contacts or do I have to find a pair of glasses that I just love? :P
To all, thanks so much. This site is so helpful. ~ Shannon
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Hi Daydreamer-
Belated welcome to our merry band of ANers - glad you found us.
I'm going to second what others have said in that you should plan on having help at home for a little while. Like you, my role in the family is that of caretaker - I was always the one taking care of everyone else and quite happy to be in charge. Then I crashed head first into reality and realized that I needed to let go of control, at least for a little while. (It's not as bad as it sounds, trust me! :))
I can also pretty much guarantee that you won't worry about your hair for the fisrt few days! As many here may remember, I was obsessed about the whole shampoo thing before heading into surgery - when I woke up 6 hours later, I didn't care that I looked like Pebbles with a ponytail on the top of my head and a great big turban on.
May I suggest that you call the surgeon's office and ask if you can email one or the other of them with questions? I emailed my surgeons regularly both before and after surgery and they were always extremely prompt about answering me right away. Every surgical team has their own "procedure" in terms of how long before you can wash your hair, when the sutures come out, etc. They would, I'm sure, be happy to answer your questions. I believe that most brain surgeons are very used to communicating regularly with their patients - just ask for access. In fact, I beleive Wendysig even had her surgeon's cell phone number!
Debbi
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I never thought to ask for an email address for the doctor. I will give it a try but until then, this group is helping a lot.
I finally found out which type of surgery I'm having, the retrosigmoid. I'm scheduled for a 6 hr. surgery. Is that typical? Sounds like a long time to me.
On a lighter note: I've got a golf scramble 2 1/2 weeks after surgery. Do you think I'll be able to drive the cart? ;D
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Hi again,
They say about 6 hours but it really depends on whether the tumor is "sticky" or if it peels off easily as well as many other factors. On this forum I've seen it range from 3 hours to 16 hours. You will not know until after whether you can drive the golf cart so have a plan B just in case. I couldn't have done it but I have a feeling Jim would have had no problem. Jim, did you drive a golf cart??
Marci
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Daydreamer~
I think that it is great that you hope to be playing golf 2 1/2 weeks after surgery. I hope it is best ball so that if you need to sit out a few you can! I'm afraid that the fatigue is going to set in or that if you play the whole thing, you will be VERY sorry for at least the next day, if not longer. I also would be concerned about the swinging and how it might affect you...I didn't play for a good while after my surgery (& then had to wear a patch b/c of the depth perception issues - I also don't count "whiffs" anymore!! LOL!!), but it was the middle of winter. I am on the optimistic side, but I am also a realist and I don't want you to be too disappointed. I think I'd have a sub ready that can step in if needed, just to be on the safe side. Maybe you were kidding about the scramble, not just the driving??
I had a translab and it was 14 hours so 6 sounds OK to me! ;)
K
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I really didn't plan to golf anyhow...I haven't been golfing in 2 years and prior to that only 2 or 3 times a year. I just wanted to drive the cart. LOL! I see myself going stir crazy after a week in the house because I don't sit still much. I think this is going to be a learning experience as far as patience goes. :(
Marci, when you say you couldn't drive the golf cart was that because of fatigue, balance?
Maybe I need to think a little more into the future. I love softball. Is playing next year going to be an option? Have any of you gotten back to doing normal outdoor activities such as softball, tubing, skiing? Is there something you did in the past that there is no way you could do since the surgery?
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Hi,
Yes, it's the fatigue and vertigo. Also, your ability to turn your neck comfortably. I had been very studious about doing gentle neck turns everyday so when I got in the car and turned by instinct I was fine. In my surgery my vestibular nerve was not cut, only moved, so I don't have major balance issues. Of course maybe driving a golf cart is a kind of physical therapy that will help lead to driving. :-\
There are three things I haven't yet been able to do (though it's early days): running, cycling and singing. I have every confidence I will get back to my pre-surgery fit and active self but if I have to go a bit slower I can live with that. Other folks on this site have returned to kayaking, running, and various other activities.
In the end, you will just have to see how it goes. Keep goals for yourself but be willing to adjust. Hope this helps. Others will chime in I'm sure!
Best,
Marci
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Daydreamer~
I think softball next year will be fine. For me, everything took a while, but only because I had a lot of issues to overcome. However, there is not a whole lot NOW that I couldn't do. I was a PE teacher before and did everything - there are things I don't do WELL now b/c of depth perception or the stroke, but I can still do them if I want to! I had my surgery so long ago that I know it is so much better now & people don't have the problems that I had! You'll be fine!!
K ;D
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Kaybo, thank you. 2 weeks ago, this entire thing was just a minor inconvenience, now I realize it's a bit more. (I hate taking life so seriously). From today forward, I will realize I can't change what happens, I will make the best out of everything that happens. I WILL make this work for me.
P.S. Played softball tonight & had a great time. Next Thurs. will be last game before surgery but NOT my last game...promise! :D
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Daydreamer~
Good attitude - which in my opinion is right up there with a strong faith and prayers in the healing process! You CAN do anything you put your mind to!
K
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Daydreamer,
Today, almost 4 weeks post-op, I ran during my 2 miles walk! Now I didn't break any speed records and I didn't run the whole 2 miles, just on and off, but it felt so good!
Marci
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Congrats Marci! Keep me informed of progress no matter how big or small because it helps me a ton! I'm pretty competitive so if you can do it, so can I. ;D Ok, maybe not the running part...softball was created for those of us who don't like to run much. LOL!
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If it makes you feel any better, I am terrible at all ball sports. I duck in terror when playing volleyball, softball, you get the picture. My husband says I'm the other team's secret weapon. I even get nervous walking past the golf course....
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Hi Daydreamer71,
So glad you decided to post and ask questions before your surgery - the answers you get here in the next two weeks will be invaluable!
You already have a great attitude and sound pretty active, which will definitely work in your favor.
I had a retrosigmoid to remove a 1.9 cm at House Clinic in LA nine days ago, so I can only offer info from my present perspective, but here goes.
Definitely have your fiance or other family member around the house with you at least the first 4 - 5 days you are home. Everyone is different, but I came home on a Sunday and didn't feel comfortable being alone in the house until Wednesday. It's like Katie said, you can get so fatigued that it becomes a major effort to walk into another room even for a glass of water or your meds. I kind of camped out on the couch with supplies around me like when I have the flu - which is about where my energy level was at. I'm so used to doing everything myself, that the worst thing for me the first few days was asking for help.
They also said my surgery would be about 5 1/2 to 6 hours, but it was done in 4 1/2, so it all depends on how the tumor behaves (sticky or not) when they get in there.
The only pain I had in the first five days or so post-op was in my neck muscles at the bottom of the incision, so be sure you have a comfortable pillow ( I found softer and squishy better) that you can use to get your head in a good position when you sleep. When you're sleeping in the hospital with the big bandage is the hardest. Putting a rolled up hand towel between my non AN cheek and the pillow kept my head from turning too far to the side and put less tension on my sore neck muscles.
I also washed my hair for the first time yesterday, and having the "no more tears" baby shampoo was helpful, along with a shower chair. My balance is fine now (it was not before the surgery) but since it took a while to do my hair, it was nice to have a chance to sit. I didn't have time to get a hand-held shower, but I'm sure that would also be a great help.
You found a great place and a great "time" to log on here. Off the top of my head you have all the recent surgical experiences of Sue L and myself in August, - Marci, Wendy, and Kathleen from July, Syl from June, and the very first surgery update that I followed along with Debbi back in April. There are of course many more, but these are a few that helped me to get where I am today - nine days post-op and feeling good.
Hope this helps!
Nancy L
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What about wearing contacts again?? I've read a lot of posts that say there is a problem with dry eye. Any of you able to wear contacts or do I have to find a pair of glasses that I just love? :P
Shannon - I was able to wear contacts about 6-8 weeks post-op. Part of my issue was the eye on the AN side didn't want to close all the way due to temporary parallysis on that side as things healed. Once I was able to close that eye (what I thought was) all the way, my doctor allowed me to wear contacts again. It was on my list of questions every time I saw him post-op. Get yourself some glasses you like because it could be a little while before you are able to wear contacts again. You will be able to wear them again (nothing but positive thinking), but you will need your glasses for a little while. Prior to surgery, I NEVER wore my glasses and always my contacts (even wore them to sleep for a month or so at a time; go figure!) so wearing my glasses took a bit of getting used to.
I'm sure you can drive the cart 2 1/2 weeks post op, but I'm not sure about playing golf that quick. I'm 3 months and I've just begun thinking about doing some "normal" things that require balance, sight, etc.. Given some time, I think all that will come back though.
Brian