ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Seal on February 01, 2009, 08:29:11 am
-
Hi Everyone,
I was wondering if anyone could provide some feedback on athletic activities after the AN removal. Granted, it will take many months for the brain to recalibrate to one nerve for balance, and being SSD will have its limitations as well. What I am trying to find out is just some info on basic things like going for a bike ride, running, or any sports requiring some degree of balance. If anyone has some feedback both good and bad, it would be appreciated.
Thanks,
Steve
-
Hi Steve,
My balance nerve was not cut, just messed with I guess, so I am lucky to have few balance problems. At 6 months post op, I run about 5 times a week (same as before) bike, hike, and do all of the things I want to do. As people reply you will see that even those with balance issues manage to return to the things they love to do.
Good luck,
Marci
-
Steve, everyone is different with balance and recovery.....my experience with activities has been good. I started running about 4 weeks post op and currently run 2 to 3 times a week. I recently completed a half marathon(5 months post op). About 6 weeks post op, I started bike riding(road bike) and do that once a week for several miles. I also played in a golf tournament 2 months post op and did fine. Put your mind to it, and you should be able to get back to doing everything you did prior to AN removal.
Patrick
-
Steve:
I'm not 'athletic' now and wasn't when I was young, but I am active - and always have been. That means I can't offer you any advice based on experiences with returning to athletics after AN surgery/radiation, but I can offer some general advice from my long-term post-op experience, as well as the experiences of other AN surgery/radiation patients who have posted on these forums.
As you know, healing and recovery are very individualized and there simply is no definite timeframe. However, I was doing 'physical' things within a few weeks of my surgery (no heavy lifting, though). I've read of AN patients who have run marathons, half-marathons and some ride their bicycles fairly regularly. Now, I haven't ridden a bike for 35 years or more (although I'm curious to find out if I still can), and just thinking about running a marathon (or even a half-marathon) makes me want to lie down. However, I amble around quite a bit with no problems and helped my adult son move last fall (some heavy lifting was involved, this time) without suffering any real problems, except when I tried to imitate guys in their 20's, jumping off the back of the pickup truck we used. I landed wrong, lost my balance and ended up sprawled on the lawn. Fortunately, only my pride was injured and it healed quickly because no one saw me do this. :)
As others are certain to tell you: with motivation and some effort on your part you'll be able to do the 'athletic' things you love to do within months, possibly weeks.
Jim
-
Hi Steve.
I'm 4 months post-op and had the balance nerve cut during translab removal of the tumor.
The first month I did nothing physicial streneous besides playing with the nintendo wii fit balance board.
Now, I run 3-4 times a week (up to 6 km). But it isn't funny, because I feel off balance still. But I can do it, and I have to push myself a bit to become better. ;)
I tried swimming as well. Crawl wasn't funny, cause it involves a lot of head movement. Breast was no problem at all.
I also ride my bike, but not in rugged terrain. That would be to dangerous. I read one place about a young guy mid-thirties, who went skiing 3 months post-op. We are all different, but I guess most of us manage quite well after 3-6 months.
Best regards, Kenneth
-
Seal -
we seem to have our fair share of athletes on the forum.
LADavid is a runner, so are Jeanlea and Patrick - and I'm sure I'm missing at least a few more. I used to be a runner - long before my AN - and I'm working hard on getting back to that point. I'm currently in the walking stage, but hope to be running again by the time the warm weather hits Chicago.
Lots of us can bike - me included ;D
And stoneaxe started a thread not too long ago about standup paddle boarding.
It can take some time to get your balance back, but it can be done. And IMO the more you do, the easier it becomes.
Jan
-
Hi Steve, I started riding my recumbent exercise bike two weeks after surgery and am doing great with it. My husband and I ride long distances but mostly tandem, so I don't anticipate any problems with that. I hope to make it back on my single bike this summer but was having balance problems with it before my surgery last fall. I work out several times a week using Wii Fit. I use it for the short run, the aerobics, the hoola hoop, and the yoga. The yoga is very difficult for me due to balance issues, but I think it helps me to try. I still have some pretty major balance issues, but I won't let it get in the way of trying activities. The important thing is for you to feel comfortable with the sports you attempt. Just be honest with yourself. Some things may take more time that you would like. Each day I remind myself that it's still better than the alternative.
Good luck.
SUE
-
Steve,
Everyone's recovery is unique, but as you can see there are many of us who are very active. I've become more active after my AN surgery. My balance nerve was cut during my translab surgery. I ran/walked a 5K three days before my surgery. It was my goal to run it the next year, and I did. I began to take running more seriously and have run a half-marathon and was on a 4 person team that ran a 50 mile relay. Another favorite exercise of mine is bike riding. I've also gone kayaking, swimming and hiking.
Best of luck to you.
Jean
-
My surgery was Nov 19, 2008, so I'm 2 1/2 months out. I've been jogging and doing yoga for about 3 weeks now, and have been working the balance games on the wii fit since before Christmas. I rode a horse again last weekend. I was a little rusty because I haven't been able to ride regularly since last spring, but my balance was perfect just doing the basic walk/trot/lope and some circles--I wouldn't want to try to barrel race yet. :-D I never expected to be able to do this so soon!!!!!!!!! I had a 4.5 cm tumor, and I guess I had already adjusted my balance. I even swung my baby around in fast circles this morning without getting dizzy. Maybe you'll be one of the lucky ones too. :-)
Vonda
-
Okay, so I've never really been a runner outside of high school, however I've been camping with my daughter 3 times since my May 8, 2008 surgery (about 9 months) which was pretty physical putting up and tearing down camp, tent, etc..and have been bowling once. I haven't tried riding a bike yet, but I was never an avid rider before. I feel like I could do anything physically, but I wouldn't know differently until I tried.
I would think that there's a good possibility that you could do just about anything you wanted, albeit maybe a little slower than before working up to full strength...
Regards,
Brian
-
Thanks for all the feedback as usual!! I was getting a little too much negative information lately about post - op balance issues, and I needed to get some real world experience. Thank you all, and your comments definitely make me feel more comfortable.
You all may find the following interesting. I just got off the phone with Dr. Wilkinson of the House Institute. I was very impressed with his no-nonsense approach, but more importantly, he helped to narrow down the field of options for me to a likely probability of translab. Since my hearing is gone, the translab gives better approach and accessibility, especially concerning the facial nerve. The "good news" was that my hearing loss over the last 3-4 years was probably in tandem with my balance loss. The interesting thing was that my good ear has already probably compensated for my lack of hearing and balance in the other ear. So there is the possbility that my progression post operative may be quicker since my good ear has already be compensating for a long time. So along with your comments and the info from House, I am feeling more confident that I will eventually return to my pastimes that I enjoy so much. Here in town, we have a group of bikers that do 20 miles every morning at 5:45AM in the good weather. On a fast morning, we will do those 20m in under 55 minutes, and we ride two abreast at speed in a peleton of up to 16 riders on good dasy. So you can understand my concern about balance and not wanting to endanger to other riders. It will take time, but I think I'll get there. Heck if Vonda can whip her baby around in circles, than I'm sure I'll get back on a bike eventually.
Steve
-
So there is the possibility that my progression post operative may be quicker since my good ear has already be compensating for a long time. So along with your comments and the info from House, I am feeling more confident that I will eventually return to my pastimes that I enjoy so much.
I am confident you will too, and your reasoning makes good sense.
Steve
-
I rode a horse again last weekend. I was a little rusty because I haven't been able to ride regularly since last spring, but my balance was perfect just doing the basic walk/trot/lope and some circles--I wouldn't want to try to barrel race yet. :-D I never expected to be able to do this so soon!!!!!!!!!
That's great news! I'm glad to hear you are managing motherhood and horseback riding so well, and so soon. Keep it up!
Steve
-
hey steve, glad to hear that you been receiving the positive side of post AN life.
for me, my balance nerve was also cut but i had already lost 80% of my balance and my other ear had already compensated for it. I only experience my first and only wave of nausea and dizziness - that was the first day of my ICU where the nurse lifted the bed and me up for the first time. I had no problems with balance since, except for "wonky head" where i feel like floating and out of touch with the space around me. Kinda hard to describe but I was able to walk briskly after 2nd month and doing yoga after 3rd month.
like everyone said, everyone's experience is different, but at least there are some positive side to this whole AN thingy which you can at least hope for. Good luck!!!
-
Thanks for this thread.
Believe it or not, this very issue is a HUGE factor in determining my course of treatment. So much so that I worry I might make my decision based on how a given treatment will affect my athletic endeavors (which are a huge part of my life and happiness) as opposed to what might really be in my general best interest. I am a really avid marathoner and triahlete, and not being able to be active is really distressing - it is such a huge outlet for me and I know how awful I fell when I cant be out and moving! I also am registered to do my first ironman race in August of this year. . . though I know others will always come along I had a lot emotionally invested in this and REALLY want to do it if at all possible. I have been leaning toward doing radiation but wonder if I really was able to forget about this race and about being able to continue my normal day-to-day activites if I wouldn't be more inclined to do surgery. i guess this is where the part about different treatments being right for different people comes in, huh? I just don't want to make the wrong long-term decision based on my short term goals.
Anyway, thanks for contributing your stories!!
-
You all may find the following interesting. I just got off the phone with Dr. Wilkinson of the House Institute. I was very impressed with his no-nonsense approach, but more importantly, he helped to narrow down the field of options for me to a likely probability of translab. Since my hearing is gone, the translab gives better approach and accessibility, especially concerning the facial nerve. The "good news" was that my hearing loss over the last 3-4 years was probably in tandem with my balance loss. The interesting thing was that my good ear has already probably compensated for my lack of hearing and balance in the other ear. So there is the possbility that my progression post operative may be quicker since my good ear has already be compensating for a long time.
Hi, Steve,
I totally agree with your line of reasoning. I certainly believe that my hearing loss and balance loss were in tandem for many years and that my good ear was working above and beyond the call of duty. The transfer of balance was so gradual that I honestly cannot recall any time during the years prior to my diagnosis that I ever remotely experienced any episode of dizziness or vertigo. My only symptom was gradual hearing loss, and I was expecting to be told I just needed a hearing aid -- got my AN diagnosis instead! I experienced no post-surgery dizziness or other balance issues and just spent about 10 minutes with the physical therapist "walking the halls" a day or so after surgery. He said I didn't need any further help and to just keep walking and do the exercises on the sheet he gave me (which I had no problems with whatsoever). I do hope your situation will be comparable -- it truly makes recovery a lot easier.
By the way, Dr. Wilkinson is one of the newer staff members at House. He completed the Fellows program there and assisted with my translab surgery in January 2008. He also treated Donnalynn of this forum when she suffered some complications from her AN surgery that same week. He's great! Best wishes as you continue your AN journey.
Catherine (JerseyGirl2)
-
The first part of my previous post is a quote from Steve's ("seal") earlier post. I obviously haven't gotten the knack of displaying quotations correctly, so I'm sorry this looks odd.
Catherine (JerseyGirl2)
Fixed by Steve. :)
-
I had my AN removed in June 06 and had two subsequent surgeries for a CSF leak (later in June and again in July) as well as menigitis. By August 2006 I was back in Karate (and work) and excercising daily. Obviously I was not back to my normal self but very much active and by October 2006 I tested for my 4th degree black belt and I passed (form, sparing and board breaks). I was in my late 40's so I believe if you are active before your surgery you should be able to get back in the swing of things afterwards. I have SSD and at the time I had double vision, however, it has been 2.5 years since my surgery and I can do almost everything as I did before my surgery. I no longer spare in karate as I don't want my head to get hit but I don't let that keep me from doing what I enjoy doing! I don't have any balance issues and the face issues I have I just deal with it.
Everyone is different and I have learned to be sensitive to folks who may have a harder time with recovery. A lot of "stuff" impacts folks in recovery so my advise is to hang in there, try to be positive and not get frustrated if things are not the same, it will get better with time.
-
Hey There,
I had CK in August 2007 for a 2.5 cm AN. I was able to resume a full workout routine (including running, biking, and yoga) after about 13 months. Granted, I think I could have started sooner but the balance issues really cleared up for me at around that time. More details about my post-treatment progression in the "post-treatment" section of my website below (in my sig line).
Feel free to PM me if you want more details.
Regards,
Francesco
-
Your symptoms were just like mine. I had a mild imbalance also before I had surgery. My vestibular nerve was not crushed as the doctors had thought so I had to learn to walk again for about two weeks. I admit it was no fun plus I had a spinal fluid leak and bacterial meningitus that followed. I was in the hospital for 17 days and went back to work two weeks after that. I admit I should have stayed out longer but that is not me. Anyway, I can bike, run, and just got back from snow skiing. My friends said the tumor certainly has not affected my ability to ski. I am a good skiier and glad I am able to still do that. I was not prepared for the facial paralysis that I have though.
-
Hey Steve
As Jan said, I do run and have been since about three months after surgery. But according to my physical therapist, running is actually easier than walking because you are basically just putting your feet down under you. But I rarely going out and run on my own and when I do I never turn my head while I'm running. I wouldn't even consider riding a bike. A couple of months ago, I was throwing a football with my daughter and I had to reach/jump for a pass. I totally lost my balance and fell over -- fortunately on sand. I think it's different for everyone. For me it is difficult since up until surgery I had at 60, the balance and agility that I had in my 20s. I still sprinted. I played flag football. Then after the surgery, I feel accomplished when I walk a straight line. I don't want to scare you. But I do want you to know the facts that no one shared with me.
Best wishes.
David
-
according to my physical therapist, running is actually easier than walking because you are basically just putting your feet down under you.
Wow, who knew ???
Thanks, David.
Jan
-
Hi David,
I'm sorry to hear that you did not get all the way back to your pre-op level. As I read things on this forum, the only consolation is that the experience is different for everyone. It would be nice to know exactly what the outcome will be with my surgury planned for early March, but I guess that the unknown is part of the "fun" of this journey. My current condition sounds alot like your condition. I could get away with riding my bike right now, but turning my head would definetly be a no-no. I'm even feeling unbalanced on the stationary trainer set up in the cellar. Since the holidays, my ability to walk a straight line has gone progressively down hill. When I walk through the house, I look like my 2 year old when he has a full diaper with a nice healthy "wide" stance. My neurosurgeon is remaining very positive on a full recovery, but I'll stay prepared for whatever the outcome is. Hearing loss and tinnitus is part of the deal, but I'll consider myself VERY lucky if I get my balance back and the facial numbness subsides. Thanks for the feedback.
Steve
-
I went on a trip to Asia 2 months after the surgery and went to the gym, jog, play tennis after 6 months. Now after 16 months I'm doing everything including lifting weights. So life should be almost back to normal after 6 months.
-
I love kayaking.. and go out every chance I get .. strangely enough, I did not start until post op... so I'm not really sure what I lost... I even have the "yak" out after dark .. sure it was tippy at first.. but today I kayak at night better than I walk ! ... you just might need to put more practice in it....
I look at it this way ... I had 40 years to practice walking ... it took me a few years to get it down right at first :o.... now I'm starting over... I'll be good in another 40 years... LOL .... ;D
-
Before my AN surgery three years ago, I was a couch potato, except for seasonal swimming. Just over two years ago, I joined a health club and now do things I had never dreamed of (or wanted!) to do. Everything from cardio machines to various weight machines. As I had scoliosis surgery when young, & have two rods in my back, I was actually afraid to do much in the realm of athletics. After AN surgery, I figured what the heck?! Go for it! :D
Kathy
-
How about altitude problems anyone?
I'm not scheduled for surgery yet (still deciding), but if I do, it'd be May or June I guess. Our family wants to do a horse pack trip in the Sierra's in early August. Will I be able to go? I see from the posts I should be able to ride (even if they strap me on :)) I think the altitude would be up to 5,000 or 6,000 ft.
Carolyn
-
Hi Carolyn,
If your surgery is in June, an early August long horseback trip sounds quick, but if you are an experienced rider and ride often, this might be o.k. for you. I think you should not make the decision before your surgery, but wait until after to see how you feel, etc. And, certainly, do include your physicians in such a decision.
Admiring your style,
Kathy ;)
-
I would like to think I would be able to be just as active post - surgery... when ever that is!! I do push myself a bit though I must admit!
Steve - have you managed to sort out your insurance and book another date with SBI?
-
Hi,
Everything worked out for the best. I have AN surgery scheduled for a week from today with McKenna and Barker at Mass General in Boston. McKenna has one over 1000 ANs, and he was House trained. So alls well that ends well......... things happen for good reasons!!
Steve
-
Hi Steve,
Late reply to your post. Hope it helps. Given your attitude I don't think you'll have any problems getting back to an active life. My AN has actually made me more active. I'm in better shape physically than I have been in at least 20 years because of a need to push myself for vestibular therapy so that a more normal life could be possible. One of the reasons I really like Standup is that I can push hard without the same concerns for injury that I would have on dry land. Falling in the water doesn't hurt. While I haven't gotten back downhill skiing yet I feel like I could, no more moguls though. I've been on my bike but was cautious and felt like it could go wrong quick. You're mileage will vary of course.
http://anausa.org/forum/index.php?topic=8379.0 (http://anausa.org/forum/index.php?topic=8379.0)
And from the sound of your love for fishing (something I share) here's something else you'll appreciate to do on a standup board. "Walking the dog" http://www.youtube.com/watch?v=B9j7Oatucw8 (http://www.youtube.com/watch?v=B9j7Oatucw8)
P.S. I'll be very interested to hear how things work out for you. I'm scheduled to meet with Dr McKenna on May 6th to discuss options. Unfortunately my tumor is growing again so i'm kind of back to square one with this whole thing.
-
Oh, man, stoneaxe, that video is awesome for those of us with vestibular therapy exercise needs. My eyes are crossed watching it!
Back to Boston now for stitch removal. Yippee!
Great meeting you and the boss,
Nancy
-
This story about a race includes an AN patient post-treatment:
http://www.idahostatesman.com/sports/story/740000.html
-
Well, it is more than one week after the surgery, and the improvements are obvious. I have maybe 90% of the facial numbness gone now, and I can tell that the balance is different and actually improving already. So we begin the slow climb back towards the new normal. It should be an interesting summer!
-
I thought I would bump this up again. Tomorrow will be three weeks from the Grand Event. Generally, I am feeling pretty good, and the progress seems to be at a normal pace or slightly ahead. I am lucky so far with minimal headaches, and the facial numbness has receded. The real issue is the balance which continues to improve. In fact, I feel good enough today to actually start thinking about the bike. The first step will be to start spinning again in the cellar on the windtrainer. However, I still have enough fatigue that a daily nap seems to still be needed. Today, I slept a solid 1.5 hours after lunch. Nap is good. So I might try a good easy spin on the stationary set up this week and see what that does to me. If I can handle it, I will continue. If not, I'll back off and try it in smaller chunks of time. I really did underestimate the fatigue factor though!!
Steve
-
Steve -
you aren't the only one who underestimated the fatigue factor. I was definitely guilty of that :P
I think your plan to start with the windtrainer and then move to the stationary bike before switching to your regular bike is a good one. I don't have a windtrainer, but I used my stationary bike regularly before I moved to the "real" thing.
The biggest issue I had with my regular bike was balance - especially when turning corners. Any sudden moves of the head aren't good either - takes a big toll on your eyes and creates dizziness. The first time I got on my bike, I promptly rode into some bushes ::) Then I gave up - which was my biggest mistake.
It took me an entire year to get back on my bike - I just wasn't brave enough - but when I did, I found with time that my balance and vision issues improved rapidly.
So my best advice is take things slow, but be persistent. You'll be back to riding again before you know it.
Good luck,
Jan
-
Steve, I agree with Jan...I think that's a good strategy to start on the trainer. If I had one, that's what I would have done. I'm an avid biker and it really worried me that I might not have good enough balance to do it again. I too was a bit wobbly for 2 to 3 weeks. I got my confidence up by walking for long stretches, then started running some and then finally got the courage to get on my road bike at about 3 weeks post op. I took it in small chunks just a few miles at a time and also made sure and stayed away from heavy traffic roads. Once you do venture out on the bike, I'd recommend taking someone with you. My wife basically wouldn't allow me to go by myself(didn't like it at the time, but really was the smart thing).
Anyway, everyone is different...but it sounds like you're on the right path. Good luck.
Patrick
-
Steve~
I agree - start on the trainer! Even though you are probably already doing it, try walking or running some too as that will help compensate for the balance. Maybe even (it might be a bit soon for this) by trying some "different" situations - types of surfaces - sand, rocks, uneven ground, etc. - to try to start really challenging that!
K
-
Steve and all,
Sounds like you have a good plan and it seems to be working for you. I'm about 18 months post-op with nerve removal and my balance has moved pretty far down on the list of priorities.
Not that I'll go sar far as to say I've recovered completely at 18 months (I've noticed how long it takes for the brain and nerves to adjust) but these are the only issues I have remaining daily with balance:
1) I "drift" a bit when I walk far distances. Just a little bit to the left or right as I go.
2) If I am throwing a ball or frisbee, I have difficulty running under it anymore. I find that when I look up and ose the horizon I get very disoriented. In fact its about impossible for me to run straight without looking straight ahead anymore.
3) I have never been afraid of heights but I am now very uncomfortable even on ladders (probably as much psychological as physical)
As I said, day to day these don't really stop me from doing anything - just something I have to keep in mind during activities. Hopefully you'll get a full recovery and these will be moot - just throwing them out as something to watch out for as you progress.
Rick
-
I jumped back into my physical routine about 3 months after my AN was removed. I had double vision at the time and didn't let that stop me. It has now been three years and I am back at tennis as well. However, I have noticed even though I had double vision surgery in 2007 my left eye (the one that had surgery) does not react as well as my right eye. In karate I noticed when I do reverse kicks or use my left side for any side or reverse kicks I just can't see or react as quickly. Since I just started playing tennis again I've noticed that my backhand is not nearly as strong since my surgery due to my vision or delayed reaction to seeing the ball. My husband is telling me he doesn't think it is so much my vision but my delayed reaction. I haven't tried golf (I was never good at golf but love the game) yet but I have a gut feeling that will be even more noticable since my left side seems to be on a delayed time restriction : )
-
Rick,
Thanks for the feedback. Today marks four weeks after the Grand Event for me, and I'm still working on 1) balance, 2) morning headaches, and 3) fatigue. Today was particularly challenging especially waking up with a decent headache and balance was unusually bad. Hopefully this is just one of those days on the road to recovery. Anyways, I plan to start walking almost everyday unless my energy goes down and I need to back off a bit. If the walking works out, I'll try the stationary bike next. My biggest concern is probably still the fatigue. So I'll try to listen to what the body is saying and try not to overule it with too much excercise just yet.
From the comments both you and TP are still having issues with eyes and tracking movement while doing your respective sports. I'm wondering what a pitching deck in 2-3 waves will feel like while I trying fishing this summer!!
Regards,
Steve
-
the 2 - 3 ft waves seem like great therapy - yikes! don't fall in with the fish.
-
yoga- although it can be frustrating at times when you cant balance like others around you, it does help me working on my balance issues. also if your balance is way off i have noticed that using an elliptical machine works well because i have stability with my arms and legs and i get a good cardio workout. i cant run on a treadmill because i have a fear of falling off from my balance.
good luck and remember to push through and it will come but always be safe
-
This is now ten weeks since the AN surgery, and I have been back to fishing for at least the last three weeks. The pitching decks are interesting, and I believe that it is great vestibular training. Strangly enough, I am not uncomfortable while standing or sitting on board. Walking on the pitching deck is a challenge as well as even the floating docks. Last night with the strong nor'esterly winds, the docks were really heaving, yet I didn't feel TOO much worse than normal. I believe now that the more I work at the balance thing, the better progress I make. Of course, fatigue can really affect the quality of my balance, and I still have good and bad days. Overall however, I think that I'll be trying the bike soon, and I've been told that bosu balls are great trainers to improve one's balance. So hopefully, a combination of all the above will help push results. Sara, a friend of mine is a yoga teacher, and I will be looking into yoga this fall. The good news is that after a few hours of fishing on a moving deck, the dock and dry land are a breeze! Everything is realtive I guess. The only reason for not pushing the biking yet is because I need to conserve my energy for 1) three little kids & wife 2) work 3) all their activities that are in front of mine !! All in due time...............
-
fishing... biking??? biking... fishing???? sounds like fishing is winning out!
glad you're doing better. 10 weeks already, wow!
keri
-
Fishing is definitely winning out! I think Bob is on the right path for regaining balance because I have seen huge improvement in my balance as I have continued to spend large hours on the open ocean. We have been doing many inshore fishing trips, and I recently did a 24 hour offshore trip in pretty significant seas ahead of a developing nor-east storm. The rocking motion of the deck seems to be the best vestibular training that I can imagine. The pitching deck is not hard at all, but I did notice a significant loss of balance in the dark at night. So I had to take extra caution moving around the boat at night. Otherwise, I think boating, paddle board, or whatever is a great way to bring back the balance loss from the AN ear. I've also been scooting around town on the moped, and I'm ready to get back to biking. Training starts this week in earnest. I just want to let others know that with time, life does get to be fun again. Yes, there is a new "normal", and the SSD gets interesting. However, I've learned to take advantage of the SSD too. When life gives you lemons,.......make lemonade!! Plus the offshore trip last Wednesday night was successful with several yellowfin tuna and 12 very large mahi mahi for the grill. Summertime is a wonderful time!!! ;D ;D ;D
-
Great - good for you! But I get seasick reading your post!
Glad all is going well and that you're having a great summer.
Keri
-
I would like to add something about what not to do just after AN surgery. The kids were jumping off the back of the boat where we like to anchor and spend the nice suumer afternoons. They talked me into doing a big cannonball off the back of the boat. I recommend that us posties do not do cannonballs for a least a few more months. The headache lasted for about a half hour after my excellent cannonball. The kids loved it, but I paid the price. ;D ;D
-
Steve
I'm glad to hear that the off shore fishing helped your balance issues. My boat has been sitting in the driveway all summer because of my AN surgery (6/04/09). I'm probably going to start off with a kayak fishing trip (soon) and work my way up to taking the boat back offshore.
Also, on the athletics issue, I have been running since 6 weeks postop and have had no problems with it. The AN side of my head usually throbs (not real bad) for a little while after the run, but when it goes away I feel great. I also tried bowling a couple of days ago. The first game I was scared to death that after I released the ball that I would fall flat on my face in front of about 100 other bowlers. I had a terrible score after the first game, but I bowled three games and by the end of the third game I was almost as comfortable bowling as pre surgery.
P.S. I have been afraid to ask my Dr. about scuba diving(not sure I want to hear the answer). Has anyone read anything or know anything about scuba diving after translab surgery???
Thanks
Joe B.
-
Hi
I recently attended a talk by a neuro surgeon on "insertion of shunts following AN for hydrocephalus or CSF leak", he said anyone with a shunt inserted should not go scuba diving but he has heard of people doing so and not telling the instructors !!!!.
regards irenuk
-
How about altitude problems anyone?
I'm not scheduled for surgery yet (still deciding), but if I do, it'd be May or June I guess. Our family wants to do a horse pack trip in the Sierra's in early August. Will I be able to go? I see from the posts I should be able to ride (even if they strap me on :)) I think the altitude would be up to 5,000 or 6,000 ft.
Carolyn
SEAL (aka Steve)
I am totally impressed reading this. What a great can do (and inspiring) attitude you have. You have started a great thread!
Carolyn asked a question about altitude. I was just at Crater Lake at 6,000 feet and I was surprised that I had issues as I thought I was in the clear - being 2 years post op. I had total “wonky head†... we came off the mountain the same day. (I had no desire to stay up there and explore on this 2nd visit to the crater.) The next morning, at much lower elevation not far from sea level… I had a wicked headache- (which I almost never get.) I wonder if was the vestibular issue or Dura fluid pressure. I was freaking out on the road up to the crater-, which I never used to do (I actually did much rock climbing, in my youth, so heights were never a previous issue and even this month I was up a ladder painting the house- wearing a snowboard helmet in JULY). Just looking down was so hard (and freaky) for me. I took an over-the-counter diuretic in the morning, just in case it was fluid issues as I had swollen hands and feet… the headache dissipated.
If you are going on a trip to high elevations you may want to discuss this with your doctor and the possibility of taking prescition diamox with you- just in case.
http://en.wikipedia.org/wiki/Acetazolamide
This is used in severe cases of altitude sickness.
Steve every case is different. I can power walk, ride a bike with no hands, and ride a bike and sight see at the same time (and yes chew gun too)
Here is an old post with photo
http://anausa.org/forum/index.php?topic=5584.msg56072#msg56072
But I cannot "RUN" as the up and down bouncing does it to me. Funny I can bounce on the trampoline but not run. I can easily do sideways turns, now I can put my head up and bat the volleyball but I cannot get down on my knees and then get up again without getting dizzy. Looking down at my feet or getting down low on my knees does me in- each attempt. I am trying to get vestibular therapy so I can plant flowers again and yes maybe even "run"… (That too has a saga I hope sorts out soon) It is just so wild how different all of us are with this. LADavid can run but walking challenges him- I am the opposite.
I am just going to keep trying until I get it…
If you do not succeed at the bike right away- just keep at it. I am convinced that the brain is very plastic and you can train it to compensate… if motivated enough.
Thanks for starting this post- it is a good (and inspiring) read.
DHM :) (aka the old "4")
-
I am happy to report - at 2 1/2 months post op, I have been driving our boat, pulling my husband wakeboarding, and driving the jet ski - on smooth water - for 3 weeks now!! I do not plan to revive my wakeboarding due to the hard falls, but I am thrilled to be the boat driver again!!
I also played sand volleyball last weekend. You definitely would not want me on your team...Everytime I was in the front row and looked up at the ball - I fell over! It was mighty funny to all who watched. I played again yesterday and did not fall once! I missed the ball quite a few times, but I did not fall! At least now, I have an excuse for being a bad player!!! ;D
-
good for you, alicia!
-
I'm so pleased to learn how many post-surgery/radiation AN patients are resuming physical activities they enjoy. I truly believe, barring serious post-op complications, that the motivation to do the things you love doing (running, boating, swimming, etc) is a major factor in helping post-op AN patients resume their normal lives. Congratulations to all who have been able to return to the activities they love and bravo! to those still trying and making progress. :)
Jim
-
Plus the offshore trip last Wednesday night was successful with several yellowfin tuna and 12 very large mahi mahi for the grill.
Seal, now I'm jelous! ... I done several Cod trips in the last few years.. no major issues (there was one balance lost, I set the hook the same time the boat pitched on a big wave and on my butt :o )
I Sea Kayak all the time now since my AN .. never did before hand... so can't compare... but I do fine... (not at first ;D )
-
Jim,
I think you hit the nail on the head. Motivation plays a big role in getting back to what we enjoy. I bike and work out to stay in shape, but I love to fish and be on the water, especially this time of year. So whether it is running a marathon, going for walks with the children, or simply working out at the gym, we probably will all succeed and excell at those things that we love to do the most. The rest is icing on the cake. I know that I can lament about being SSD or the loss of some balance, but we just have to move on and enjoy our favorite activities with a little different perspective. For example, I noticed that I can sleep soundly on board while fishing over night by just putting the good ear down while in the bunk catching a nap. So that is one big positive that helps!
Good to hear that you are making progress Joe B. on the recuperation road. Keep in mind that I am at least 2 months ahead of you on the recovery, and that is a pretty big difference. I was also lucky to have a couple of friends who really pitched in to help prepare the boat for the season and make life easier for me while on these fishing trips. They also serve to push me and help me along to get back to full activity levels by not leaving me alone. They are always there bugging me, supporting me, and helping to push the envelope along as things improve. For instance, my offshore fishing partner is great about letting me get that extra half hour to hour nap in the middle of the night, know that i need it. Its all those little things that help too. I'm sure you'll be back on the water soon. ;D.
-
Hi Everyone,
Last week was my five month post operative anniversary, and I just wanted to update the athletic endeavors to give a more complete and realistic time frame to a pretty good recovery so far. I think we all go through re-evaluation of our family, life, and priorities when we go through this necessary process, and this summer was probably a good example. Instead of forcing myself back into serious biking and daily workouts, I choose to spend more free time with the family, kids activities, and of course fishing which is my passion. At five months, I believe there is more recovery to come, but maybe others can jump in on this part. My balance is still not where I feel top notch, and that has led me not to try and force myself back into serious bike riding. However, the balance doesn't matter on the boat since in open waters, the boat is pitching enough already, and my balance issues seem minor compared to the rocking deck. I had also seen an uptick in headaches recently. Maybe I've enjoyed by white wine a little too much or maybe its again part of the healing process. Each one of us is so different in this regard. However, I am pretty much doing anything that I really want to do, and for those other things, well I'll just get to them when I feel up to it.
Last weekend, we fished the top of the Gulf Stream, well south of Nantucket for mahi and yellowfin tuna. Then on the way home, we also dropped down some jigs on our favorite cod spots for nice market sized codfish. I believe fresh codfish is extremely good for the recovery of an AN postie!!! We will get in one more overnight trip to the North Atlantic canyons before the cold weather comes in! Biking can wait!
Steve
-
Hey Steve! Welcome back! good to see you!
Well, you were a couple of hours, by boat, south of me. Shame you didn't sail into Boston... the Tuna and Bluefish (sport) fishing is great up this side of the State. :) Glad to hear you are doing well and thanks for the update! hang in there and plu-eze, don't be such a stranger.
Phyl
-
4 months post op...This past weekend, I flew to the Husker/VT game. I consider this quite athletic as I was tailgating at 8am for the 2:30 game and did not leave the parking lot til 9pm! Sitting through the whole game - if you call it that - was quite stressful - not due to my AN, due to the playing. The day before the game, we went ziplining through the Appalachian mountains - it was awesome! I highly recommend it!
-
Seal - I like your perspective on things... I'm glad you're enjoying fishing and family time. Regarding the headaches, I read somewhere that Ernie (tampa ernie) who initially had a super quick recovery was also getting some headaces as well (later). I hope this is just a passing stage for both of you.
Alicia - tailgating for hours followed by jumping up and down at a football game sounds like plenty of exercise! hope your team won! I'd also like to hear about the ziplining... although i have a mental picture of hanging on to a zipline as you go across some deep gorge.... that sounds pretty scary! but very scenic.
keri
-
Seal...you need to make some Ahi poki from that yellowfin...nom, nom... :D
I'm having a blast back in the surf again post op. My balance is almost back to normal...close enough that I can't tell the difference most of the time. Only concern is my left eye not closing during a wipeout. I wear goggles in BIG surf now to prevent damage.
(http://i197.photobucket.com/albums/aa317/stoneaxe/newenglandsup/PICT0823.jpg)
I didn't use to have to worry about that.... ;D
I think the worst thing we can do is let this thing defeat us. Rise to the challenge and make the best of it. Everyone is different and I'm real lucky things turned out so well for me but if you don't push yourself you'll soon find that pushing the button on the remote is a workout..... ::)
-
Seal -
although we are all different, you are right - at 5 months there usually is still more recovery to come. Take heart though, it sounds like you are doing very well ;D
Your balance should keep improving over time and eventually IMO you will be able to get back on your bike. Once you do, take it slow until you get used to it.
I'm sorry to hear about your headaches; do some research on the Forum - there are lots of posts related to headaches and what has worked for others.
Good to "see" ya,
Jan
-
:o
WOW!!!
DHM
-
Great photo Stoneaxe!
-
WOW is right. Very cool shot from the paddle's perspective. If you have to wipe-out, at least you're doing it with style!!! Thanks for that info Jan. Having read many posts, I just assume that there will be more good stuff to come at six months, eight months, and even a year out. I have not complaints and feel very blessed. As a matter of fact, many friends and family have refered to the whole event as miraculous, and I heartily agree. Hopefully, people can read this thread to see how quickly progress does come. Sure there are those days of fatigue, dizziness, and headaches, but they are usually harbingers of healing and improvement. With good rest, the next day is usually a better one. I did notice a big improvement in August when the whole family just went away for a long weekend, turning off the work stress, iPods, and late night TV. The quiet and relaxation helped remove alot of stress, and I had a big bounce in improvement from that weekend. I beleive the minimization of stress is critical to helping the body recover as well. And Keri, I am a month ahead of Alicia, but I would not want to attempt a 12 hour stint of tailgating just yet. A couple of glasses of wine seems to be my limit for right now!!! ;D ;D ;D
BTW, on that long weekend, I did get on the shortboard for some serious speed on the windsurfer. My balance was very good, but my mind said go while my body said no. At least getting in a couple of runs was a big mental boost. The worst part though was skipping over the choppy bay waters. At 25-30kts, that was more than my head could deal with at the moment...............
-
Let me clarify...there is not much drinking on my part yet...still too nervous of the whole nerve trying to heal issue. So tailgaiting consists of getting up early, watching the guys set up "camp," sitting in chairs, grilling, and walking a mile to the portapotties!! So you guys are much more active than I have been ;)
-
Well, just to keep the update rolling, this week marked the six month without an AN in my right ear. I continue to see improvements in overall strength as well as balance. The headaches seem to be a bit more prevalent lately, but I can handle them. Maybe its the wine in the evening that Alicia told me to have with every dinner!!! However, a good morning dose of caffeine along with a minimal amount of ibuprofren sometimes late in the day, and I'm good to go. On the athletics, I have still not returned full time yet to biking. I have done the stationary bike, and the excercise felt good. However, it did increase the pressure a bit and brought on some more headaches. So for the moment, I am walking and slowly building up to the point that I can do the stationary bike daily. Priorities of work and kids (and fishing) continue to take priority at the moment. So I'll focus on the stationary bike when the real winter sets in for good and the boat is put away for the season. Offshore tuna fishing is done, but we hope to get out to Block Island for some late season stripers as well as cod fishing. My ten year old wants to do some ground fishing before the season is over in mid-November. Balance on board continues to be fine, and walking and turning quickly continue to improve. So in short, the six month mark continues to show improvements, and I look forward to getting back to daily excersizing once other priorities like kids soccer games, work load, and fishing opportunties subside. All and all, life continues to improve!
-
Hi All,
Well the eight month update was not anything worth writing about due to all the yearend and holiday chaos and madness. So this is the update for nine months post-op. The few times that I have tried to do some serious cardio type exercises, I end up running into the kitchen looking for the ibuprofen for the headache that follows. The higher blood pressure of a good workout seems to give me some decent headaches although they are easily handled by over the counter medicines. So for a Christmas gift, I received a Bosu ball, and I have already seen improvements in my balance in just the first week of using it. In this 8 to 9 month period, I also seem to have found some serious improvement again in balance. Just walking and doing normal everyday activities seem greatly improved for some reason. This seems to be confirmed by others who have also seem continued improvements in the 8th and 9th months. So the wintertime right now is a bit of a crimp on walking and/or running, but I intend to bit the bullet and start doing daily spinning (stationary bike) in the cellar augmented by the balance training with the Bosu ball. I'll update this thread these next few months to track the progress as I drag myself back into shape. The target right now is a century ride next September (100 mile ride). With some luck, I should be able to get there.
Happy New Year,
Steve
-
Steve -
good to see you ;D Thanks for the update.
Sorry to hear about the headaches, but good to know you've found an alternative exercise method to avoid them.
The Century ride sounds like a great goal to shoot for.
Happy pedaling,
Jan
-
Good for you, Steve. I hope the headaches get better.
That's great about the 100 mile bike ride. Have you talked to Patrick (texsooner)? He does stuff like that.
Keri
-
Hey Everyone,
Well the count is now 11 months, and I will soon celebrate one full year of being bugger free and an official ANA postie! I've tried to document a bit of the recovery over these past 11 months with hopefully highlights and lowlights of the recovery process. I have been doing some indoor spinning on the bike, mounted on a wind trainer. WIth the winter weather, that is just about normal around here. Last week I had a big event and biked about 20 miles solo for the first time in over a year. My wife was more nervous than I was, and I needed about 15-20 minutes of riding until I felt comfortable again with every wobble and bump in the road. The bike is a titanium frame with those small little tires; so every action has a counter action to it. To my surprise, I actually felt great after the ride, and of course all my muscles paid the price the next day. The interesting part was that I had no headache issues after the long workout like I had in the late summer and early fall. So obviously, there continues to be healing and progress going on inside my big, fat Irish skull. I do admit to resting maybe a bit too much and not pushing the envelope earlier as I had planned. But I guess we would all agree with the value of sleep, rest, and letting the body restore itself. I am still having some headaches, but they seem to be gradually subsiding. I maybe resort to a couple of ibuprofren every 2nd or third day. As the weather continues to improve though, I hopefully will get onto a solid biking schedule and continue to work through the process of getting back in shape. Last summer, I was back to my fishing both inshore and offshore, but that is really not to "aerobic" as sports go. As I look back to last summer, the fatigue factor was also much, much greater than it is today. So in conclusion for those newbies, I would have to just say: be patient. The improvements, though incremental, do continue to come along. Hopefully, I can celebrate my one year anniversary with a nice 40-50 mile ride! One last detail is that work has been intense with the current economic environment, and the stress levels are high which raises the tinnitus, wonkey head, and dizzyness feelings at night. But I find that good sleep on the weekend with maybe an extra "nappy-po" thrown in can get me ready for Monday morning again. Nap is good. Happy Spring everyone.
-
good for you and happy almost one year anniversary! i hope you get that 50 mile bike ride in. if you have any doubts you might, go to the 'let's run or walk or something' thread in AN community - we're all trying to help each other meet our exercise goals! it works well. when i say something like 'tomorrow i need to go on a long run' and come tomorrow, i'd rather sleep in, the fact that i put it out there really helps.
anyway, i'm so glad about the biking and so glad you've made such progress.
keri
-
Looks like I'm joining this conversation late, but I'll put in my two cents!
My balance was pretty horrible because the tumor was in my cerebellum, so I couldn't walk without assistance for like 3 weeks or so. However, my balance is getting better and my sport playing is too. Almost two years out now and I feel comfortable sprinting and pivoting and the such. I have double vision due to a 6th nerve palsy and blurriness in my left eye because I need gel in it due to a 7th nerve palsy. I think those effect my sports playing more than my balance because I don't think I would be that bad if I could actually hit/catch a freakin' ball! Heck, I don't think so, I know so. But I think your balance will get totally better, it only helps to be out there doing stuff.
Oh yea, I can still weight lift like a beast because I don't really need depth perception for that. Don't know if that counts as a sport to you.
Good luck!
-
Well, what a difference a year makes! One year ago today, I was coming out of intensive care at Man's Greatest Hospital in Boston (MGH), and I was a postie trying to prove that I could do all the basic requirements needed to get home as soon as possible. Instead of being unplugged from multiple lines in the ICU, this morning I was on my bike at 5:55AM doing my usual 20 mile morning ride with by biking buddies. There IS hope and a future after AN surgery. All you need is some patience and true appreciation for the journey all the way back. I'll be the first to say that life will never be the same, but on the other hand, I can recite a list of ways that my life has improved as well!! The biking is still needing some time to get back to near normal, but I also know that at 53 yrs old, the body doesn't bounce back as quickly as it did at 25. I also have to count my blessings when I compare my journey to one of our regular bikers who is in the struggle of his life with a cancer diagnosis about six months ago. So I think we all can agree that things are pretty darn good compared to the alternative.
On the athletics side, I find that my reaction times are pretty much what they were a year and a half ago. At speed, the biking on those thin race tires seems comfortable, but as the speed slows down, things get a bit wobbly. Its sort of like what others describe when walking slow as compared to a quick pace. Granted our balance will never be the same, but all in all, its more than serviceable, and I can say with certainty that I am now doing everything that I did prior to the onset of the AN symptoms back in 12/09. Right now, I am not in top condition to ride hard with some of my buddies, but as I increase my endurance, I'll post here to give a window on how the progress takes place. I see that Patrick in TX is doing a big ride soon, and I wish him luck. Right now, 20-25 miles seems like alot, but I know that will increase through the summer. I do find that the bouncing either in the vehicle or on the bike still is a bit rough to handle, and I still do not want to make quick head movements either side to side nor looking back over my shoulder. Hopefully, I will see continued progress with these minor issues as I gain in strength and experience back in the saddle on the bike.
Till the next update:
Steve
PS: my wife has said no hard core biking this summer -- just more quality time with the family. I think that includes fishing and hopefully offshore fishing!!!!! Can't wait for the first tuna filets on the grill!
-
but I also know that at 53 yrs old, the body doesn't bounce back as quickly as it did at 25.
At 53, Be happy if it bounces back at all! :D
Your progress sounds excellent, and I'm sure you will be doing even better next year, after your leisurely summer of fishing and schmoozing with the family. 8)
Steve
-
Seal, good for you on getting back to your bike riding and other activities you enjoy. I also know what you mean to count your blessings as I too know some people who are not as fortunate and are struggling with some serious illnesses. I am grateful for my health and able to be active.
I also know what you mean about the speed and balance on the bike. I'm much more comfortable riding at 20 mph on the bike than I am going very slow....I get wobbly sometimes coming into a stop and starting back up from zero. It's weird, but when I look over my left shoulder to check potential traffic coming from behind, I can not maintain a straight line (I usually swerve left). Also being SSD on the left I have a hard time hearing cars coming from behind to pass. My biking buddies know this, so they usually have me riding up front and they do the lookouts for traffic coming from behind.
Anyway, good going on the bike riding and hope you're able to continue and increase the miles through the summer. Good luck and keep us posted.
Patrick
-
Patrick,
Good luck to you on the big ride. I don't have the power yet in the legs, but that should come by summertime as long as I can stay consistent. I'm having all those same issues that you mention about looking over the shoulder, etc. I am bit more lucky because I'm SSD on the right side. As you know, most of us look over the left shoulder to check for traffic. So that helps. Riding with a group is definitely better, and my buddies are very much aware of my issues too.
Talking about bouncing back though Steve, I rolled into the driveway yesterday morning going too slow when I hit the crushed pea stones in my driveway. My lack of speed only accentuated the wobbles, and I beautifully and majestically keeled over to my left side ending up in the privet hedge by the driveway. It was like a slow motion video; you know where you are going to end up and just hope that it doesn't hurt too bad!!! So luckily, that was the extent of my "bouncing back" as I jumped back up before the neighbors could see me!
Steve
-
I just thought I would add a couple of notes to my return to consistent biking workouts. With the weather breaking now here in the Northeast, I've been able to ride consistently for 2-3 weeks now. I'm noticing a reduction in the minor headaches that I had been experiencing form 6-8 months and thereafter. So I can only chalk it up to the fact that I am getting better excercise. I did have problems at 6-8 months when I tried highly aerobic bike rides or other things. But I can say for sure that at 12 months now, there is a big difference in how the body reacts to excersie compared to that 6-8 month stretch. So, there is continuing improvement over this big operation that we sometimes seem to want to ignore and push into the background. The AN surgery is a big deal with a longer than usual recovery time, but things do get MUCH much better. For example, I noticed that my balance today on the bike was as good as say almost two years ago. The only issues that I have are the bumpy parts of the morning ride in the part we lovingly refer to as the Paris Rubais section. Instead of cobblestones, we just have alot of bad pavement, and the old head does not like to get bounced around at speed on those bumps. I'm interested to see if with time this diminishes and goes away. At the very least, I have a new found amazement for our brains and balance system! When its working well, it truly is an amazing part of our human nature. Thanks for reading; I'll get off my PBS Nature talk now.....
Steve
-
Hi All,
This update is now the 13th month after becoming an official postie in the wild wacky world of ANs. The weather has continued to improve, and the biking has become pretty consistent now with the exception of bad weather days like last night or this morning. I am averaging around 100 miles per week now, and I see defiinite and incremental improvements in my balance. Sure I still have those off moments that we all do when we turn quickly one way or the other or if we are very tired at the end of the day. Also my spring allergies caused some problems too, but nothing too drastic. So to keep this brief, the excersize has reallyl improved my overall strength, endurance, as well as continued balance improvement. The balance improvement is even evident in just my walking during the day. I guess like everything, the progress always requires a bit of work on the part of the patient! With the summer fishing season approaching, the offshore fishing on a pitching rolling deck along with the continued biking should only be benificial to my overall balance. I can't imagine better therapy sessions than what I'm doing now. Next week is the one year follow up with the surgeons at Mass General. So hopefully all is well on the inside of my head as well as the outside.
I'll update this again as I see any continued improvement. What I find interesting for those reading this thread is that everything that both the forum members reported as well as the doctors continues to be true. This recovery continues to improve over the stretch of many months. The key is being patient and listening to your body, letting it get the rest that it needs to heal itself.
Steve
-
Steve ~
Thanks for the 12-month update. Clearly, your biking exercise has brought you noticeable improvement and that is very encouraging. Your advice regarding patience during the healing/recuperation process is well taken. I trust that your upcoming MRI scan will show the results you want and that your recovery will continue apace.
Jim
-
Hi All,
Well, this would be my 16 month update from that infamous date that we all have etched in our memories! The one year scan back in the spring confirmed that the great team of McKenna and Barker at MGH did in fact get the entire tumor. So the update on progress is pretty much the same as earlier this spring. With consistent biking this spring and summer, I find my balance is probably as good if not better than 2 years ago before the effects of the AN had set in. Of course, the balance will still always go a bit south when I'm tired at the end of a work day as well as in the darkness. However, the biking and boating combined has helped enormously in returning me to a very high level of activities with the peleton and my young kids. Some of my buddies have even drafted behind me to really look and see if I am having any balance issues on the bike, and they can't detect a single issue. With the consisten exercise, I've also dropped over 10lbs now, and I"m back to my normal riding weight. I'm sure that has to help the balance too. The tinnitus seems to still come and go in the intensity levels, but since its always there, I've found that my mind seems to just blank it out. THere are still some muscle issues in my neck from time to time and also the occasional minor headache. All in all though, life couldn't be much better. I'm very very blessed.
Best wishes to everyone!
Steve
-
Steve -
thanks for the wonderful update. It sounds like things are very, very good.
Glad to hear it!
Jan
-
Steve,
Great news, isn't it great to be back to the activites you love, helps the new normal to feel much more like the old normal.
Yay for you!
Liz
-
Hi All !!
Well it seems amazing how time flys, but this is now past the year and a half point from that great day that my surgeons removed that nasty AN. At this point, I seem to feel that maybe I have hit my plateau and that there well not be anymore progress. However, I have also read from other accounts that some of us still continue to see changes and improvements even 2 years after the surgery. I think that this may be a good point to reveiw the positives and negatives of a post AN patient at the year and a half waypoint!
Negatives:
1) Can't hear anything from the right side..... but sometimes that's a good thing!
2) Occasional headaches still seem to pop up from time to time. Mostly associated with stress and just being tired
3) There seems to be good days and bad days with the balance. Not terrible, but noticable.
4) The dreaded darkness --- walking in the backyard at night is a whole new adventure! Again, we've all adusted to it though.
5) Tinnitus - no explaination needed
6) Conversations in a crowd are impossible. However, I nod, wink, and smile........and then ask my wife later what they said ;D ;D ;D
The Positives:
1) No doubt that excercising has greatly improved my balance, especially with riding on the road bike, bosu ball, and even just walking
2) Eating healthy and cutting out bad foods definetly has helped. We eat mostly fish in the summer anyways, but avoiding fried foods, and other similar things has helped
3) Nap is GOOD. I cave into the occasional nap when I can, especially the weekends. And I do it without GUILT!
4) Consistent sleep (see #3) is great. During the week, I get up at 5:30AM for the bike ride (one hour/20miles) and then I try to get to bed by 10PM latest. Weekends I play catch up as needed
5) Headaches are rare now. Talking about SSD, when I go good ear down on the pillow, I can sleep like a rock
6) Three kids that keep me so busy that I don't have time to feel sorry for myself!
So in conclusion, everyone comes through this experience with different levels of success after the AM removal. However, I think we all have the power in our hands to also pro-actively improve our situation and work with whatever was dealt us. I'm now looking forward this winter to a complete indoor season of bike training, balance training, and core building just to see how much I can improve the current level of fitness and balance. It should be interesting!
Happy Fall Everyone!
Steve
-
Steve (Seal): thank you so much for the positive words you express....
your tenacity is catching !!!
keep moving forward...
Always good thoughts, Nancy
-
Thanks for the update, it seems everything is in perspective now and you are functioning at a high level. So happy for you!
Liz
PS I must say, once I was able to work out again (17 mts post op due to horrible headaches) it changed my who outlook and I feel GREAT! I think it has saved me ;)
-
Great to hear your progress! I think being / staying active is so important if you're able.
In two weeks I'll run my 4th marathon; a week later, I'll turn 50; 3 weeks after that I'll try to run my 5th marathon! The AN hasn't slowed me down too much. The SSD is a pain, but it can be very useful for sleeping, I agree!
Keri
-
Keri .....
You are amazing!!! I have not run since my last child left toddlerhood! The thought of running anywhere these days is ...... :-\ Keep it up!
Clarice
-
Great to hear your progress! I think being / staying active is so important if you're able.
In two weeks I'll run my 4th marathon; a week later, I'll turn 50; 3 weeks after that I'll try to run my 5th marathon! The AN hasn't slowed me down too much. The SSD is a pain, but it can be very useful for sleeping, I agree!
Keri
Hi Liz & Nancy,
Thanks for the support and kind words. I know we are not getting younger, and higher levels of excercise differ greatly between individuals. However, I think that Liz nailed it in her comment about finally returning to "regular" exercise, even 17 months post op. I hope and believe that everyone can at least get out the door and start by walking a mile or two. That could quicly lead to 2miles then three. I found that the vigorous excercise continues to be the best thing to ward off the occasional headaches and neck pains. I also notice a huge benefit in my attitude with the family, especialliy the kids. As in any recovery, i believe that sedentary lifestyles is not helpful to recovery while a pro-active excersie approach definitly helps( even leading up to surgery). Now I'll be the first to admit that I've been athletic and active my whole life which helps greatly. In my case, I'm just returning to my previous pace of life that I thought I was going to loose. However, I think all of us in our own way could take advantage of regular excercise be it only daily stretching, walking, or anything. My Mom passed away this summer, but even to the end at 93, she remained active and always believed in the old addage that "moss never grows on a rolling stone!" So we should all do what we can and reap the benefits; they are there for the taking. In full disclosure however, I have no intention of running marathons with these shaky knees! But Keri, if you can pull it off...........well then U go girl! ----- as they say! I had to make the switch to biking from running about ten years ago and it saved me from becoming a couch potato!
Keep Moving!
Steve
-
Looking for answers. I have recently had CK surgery this past January, 2010. Three - 40 minute treatments, 1 day after another. The first treatment was extremely hot, felt like my brain was boiling for a lack of a better word. Once the first treatment was done, I had commented the technician during the treatment process that I was losing the feeling in my hands and legs. Once the first treatment was finished I literally had to be lifted off the table, moved to another area to re couperate. It took about 45 minutes before I could stand, walk or had any feeling in my arms, hands and legs. I became very ill coming down with Pneumonia. Since the last of the treatments, I have been to the ER several times. WBC is between 15,000 and as high as 40,000. Other comprehensive blood work factors are also off and this seems to be a cycle I am going through every 30 to 40 days. I have a Jugular Foreman Schwannoma. 1.8 x 1.6 x 1.9. I am wondering if there are any other people out there with similar problems. My physical and mental ability at 50 years of age has decreased tremendously. I seem to catch anything that's going around and this cycle has become debilitating to both work and have some normalcy of life. Now to complicate matters I am losing the ability to use my hands during physical labor, they will actual lock up and I have to pry them apart, lower legs also. If there is anyone in the forum that is or has gone through this similar situation would like to discuss. Currently seeing a Pulmonary care Dr. Who seems to think that the CK treatments have damaged my hypothalamus and I am currently going through a series of test to hopefully find some answers. ??? any input would be appreciated. This
-
@niveklmartin
Oh my...! ???
I also had CK in January 2010; two hour sessions over five consecutive days. The dosage I received was established to finish off what was left of my AN after Translab Surgery back in Jul '09. 3cm remained on my Brain Stem. Obviously my treatments were different than yours.
Unlike you, I didn't experience any side-effects from the treatments. None at all! I have no idea which way you should even look for relief but certainly hope things get better for you and soon!
Take Care!
;)
Doc
-
It is very difficult when you are left wondering if a certain symptom could be the result of CK. For years, my blood pressure was 115/75, more or less. The first day of CK treatment, my blood pressure went up to 155/100. Although it has certainly came back down and stabilized somewhat since then (7 months ago), I'm now on blood pressure lowering meds, and still frequently have borderline hypertension readings.
Have asked several doctors about it, but no one seems to know why this would be. No one seems inclined to investigate further, either. I guess hypertension is such a common problem now, I'm just supposed to accept it.
I think that, years from now, a lot more will be known about the potential side effects of these various radiation treatments.
-
Hey All!!
Sorry I haven't been around lately, but with family, kids, work, etc., things stay pretty busy ALL the time. I thought I would update this thread to acknowledge that the next Wednesday April 13th, this will be my two year anniversary of the Grand Event at MGH. I think at this point, I can leave this thread at its conclusion since there does not seem to be much change now. No complaints at all. I have been back to biking now for a good year and a half. My love for fishing and the open sea has not changed nor does it need to. I read back over some of the earlier posts, and the comments still ring true. If you put your mind to it, you'll be able to to whatever you did before. Sure there will always be those moments in a dark room or a quick turn of the head. However all in all, I am thrilled to have the ability to still do EVERYTHING that I loved and still enjoy doing. On a very positive note, the whole AN process made me step back to re-evaluate my life and family, noting what is important. So backing off of the heavy duty training or other hard core activities only helped me realize what a wonderful life this is that we lead. I hope that other AN patients that find themselves in my situation back two years ago can read this progression and know that there is a bright solid light at the end of the tunnel. Your life does not have to drastically change, and much of what changes is up to you......in your own hands. The AN is certainly a life changer, but if you make the effort, this can also be a huge positive change for the good!!!!
Best wishes!
SteveK
-
great perspective! i hope you come around some of the time!
i do more than before i had an AN. i think i have less fear; i don't want to say i take more chances, in a risky, crazy kind of way, but i don't get as afraid to try something (i guess you figure if you've done brain surgery... )
speaking of biking, i'm more of a distance runner, but i'm going to try to do a 2 day ride to benefit wounded warriors. it's next weekend. yikes! i wish i had a bit more training time; i'm kind of scared but excited too. 65 miles one day; 45 the next. DC >>> Gettysburg. i'm a slow biker and slow runner, but like to give it a go anyway. i don't want to go too fast and fall and whack my head. but biking is a lot more fun than running, in my opinion.
happy ANniversary! there were quite a few of us about 2 years ago.
keri
-
Steve ~
I cannot add a thing to your genuine, positive comments regarding your recovery. Your outlook is great. Your fresh perspective and sincere appreciation for everything you have is refreshing and uplifting. Kudos for a great recovery and thanks for posting your very positive update. I hope things continue to go well and that you'll consider revisiting the forums to help encourage and support AN patients feeling a sense of despair or just frustration in reaction to a slow or unsatisfactory recovery pace. Meanwhile, I know you'll continue to enjoy your post-AN life. :)
Jim
-
Hi All !!!
Well I haven't checked in very much lately, and I do apologize for that. This was another challenging year having been diagnosed with prostate cancer, going through the decision process, and making the same call as done previously with the AN which was "yank it out now while we still can!!" Again the top team I could find at MGH did a great job; I can't say enough good things about the top shelf professionals at MGH. So just to at least make a quick comment on athletics, I rode my bike hard leading up to the surgery in July, and the hard work paid off. Again, I have been way ahead of the curve. Athletics do pay big dividends both prior and post surgery. Whether it is walking, swimming, biking, or whatever you can do, the activity will only help the situation. I know its not pleasant what we all have gone through, but the exercising can help in several ways, most importantly the heart and soul which is the most important part. I only missed two weeks of fishing this summer, but they kept me off the bike for at least three months (for obvious reasons). Now with the green light, its back to winter training and getting in shape for next summer. Best holiday wishes everyone, and keep MOVING !!!
Steve
-
Steve,
Read through your posts and think it is great! Sorry to hear about the latest obstacle. I was thrilled when I saw this post because I enjoy playing basketball and running, as well as casually riding my bike with my wife. And to hear all the posters and what they have been able to accomplish, gives me confidence that I will again enjoy those things post-op that I did pre-op.
I agree 100% that athletics pay dividends when we are faced with challenges. Exercising is good for the heart and good for the mind. When I have a stressful day, the best way to reduce that stress is exercising. I will either run or play basketball or lift weights, whatever it is, it takes my mind to another place and gets some good endorphins flowing.
Here is to being AN and cancer free!!! ;D
Rick
-
Hi Steve,
It's been awhile since I've been on the forum too. Wow, a challenging year - you weren't kidding. I'm glad for your recovery and hope it all keeps going well. Your perspective is true - when you're able to keep active before surgery and all that, it really helps afterward.
I did one marathon pre AN, and have now done...umm, I think 8. I'm going to try a 50k in a couple of weeks (trail). Then maybe try a 100 mile bike thing next October (I can do a 100k option instead if I'd like).
Not everyone feels so good post op, and I feel for them and am always hoping they can recover well.
Thanks for checking in and sharing. Happy new year!
Keri
-
Dear All,
I just wanted to return since tomorrow will be my 3rd year anniversary of the blessed event at MGH. Thanks for the previous notes, especially from Jim & Keri. In fact Jim, I think Keri is making us look like a couple of couch potatoes with all those marathons! Anyways, I was back to biking before the holidays, and this winter and spring, I am back to full on training for the upcoming biking season. The cancer scare is in my rear view mirror, and the surgeon at MGH has given me a full green light. I am very lucky to be 2 for 2 with major surgeries at MGH. I know not everyone is as lucky, but I also believe that keeping ourselves as healthy as possible certainly improves the odds. Surgery is difficult enough on a healthy person, but the recovery time is certainly less than normal if your body is already in good shape. At my age now 55, every day is important to maintain a healthy lifestyle from walking & biking to eating well and passing on "most" of the sugar and bad calories. From a personal perspective over three years, it is still strange not to have a functioning right ear, and the scalp area of the operation is still without some feeling. These two issues will never resolve, but that's a small price to pay. The balance issue for those of you reading this is that it is more than serviceable. Yeah sure, there are times that you are in a dark room, a quick turn, or just leaning one way too much that you realize that your "old balance" is just not there anymore. But hey! We're not 22 yrs old anymore either!! So with that understanding, what we have left -- post AN surgery -- is just fine and will certainly suffice. No complaints here. Plus I have definitely found that the better shape I'm in when biking like I do right now only enhances my balance. So that alone is a reason to get out and MOVE!!! Best wishes to everyone, and keep on biking, running, walking, or just moving! With this weather here in New England right now, we have to take advantage of every day!
Regards,
Steve
-
Steve ~
Thanks for the great update! I'm so glad to read about post-op AN patients that have a good recovery. I'm (14 years) older than you and don't engage in strenuous exercises (but do maintain a relatively healthy lifestyle) so I concur with your observation that being in good health is an important factor in experiencing a solid recovery. Recognizing our post-op deficits (balance, hearing) and adjusting to them is also helpful. Like you, I've done that almost reflexively, with excellent results.
Enjoying the slowly-but-surely approaching spring in New England, too. :)
Jim
-
Hi Steve,
It's been a while since I was on here too. Glad to see your progress and your great perspective on things. I'm so glad you've made a good recovery and haven't missed too much fishing time!
I'm still trail running and biking. I'm thankful I am able to.
Keri
-
I was wondering more from a healing skull perspective. My dog and I head butted on the side of the craniectomy and it put me out of commission for a good 10-15 minutes. Extremely painful. I was wondering how much a risk it would be to do anything that could subject my skull to being hit say with a ball or something like that?
-
I was wondering more from a healing skull perspective. My dog and I head butted on the side of the craniectomy and it put me out of commission for a good 10-15 minutes. Extremely painful. I was wondering how much a risk it would be to do anything that could subject my skull to being hit say with a ball or something like that?
I would also be interested in the responses to your question and sorry you were out of commission for that long hoping you are feeling better...
Best Wishes,
-
You may want to start this as a new thread to get a lot more responses hopefully.
Keri
-
Even though they severed the vestibular nerve I was back on my road bicycle about 6 weeks later. I've already logged a 48 mile ride. I have avoided working out mornings before work until my energy level & fatigue levels return to normal because I want to reserve my strength for my work day. The more activities you do post op, the more your good side is stimulated & the faster the brain adjusts. Enjoy your walks, initially & soon you'll be doing everything you used to. I even got a special earphone that pipes both channels to my good ear for when I ride.
MD
-
Hi Everyone,
I really should check in more often, but life with kids seems to always get in the way! ;D Well it has been a great year of biking, hiking, and offshore fishing this year, and with constant bike training all summer, I could say that I am in the best shape that I've been since the summer before my AN surgery. In terms of progress, i believe that the AN recovery process probably leveled out by the second year. The note by MDBluz is right on the money, and MD probably beat me back to the bike by six months. As stated, everyone is different and everyone needs to find their own level of recover, but whether it is walking, jogging, biking, or anything, the increaed level of excercise only helps make the recovery faster. The only thing that I can add at this point being 3.5 years after the AN operation is that the balance needs to be constantly worked at. What I mean is that if you are a walker, walk more. If you bike or run, get back to your level of training before, and you will see a solid improvement in balance over time. When I am away from training for weeks like in the winter, I notice a decline in the balance. However the balance comes right back as I get back into the regular schedule.
Good luck to everyone reading this thread to maybe give a pre-view into what to expect down the road in the months and years afterwards. Keep moving!!!
SteveK
-
You can also buy a bike with three wheels for adults. Haven't tried it yet but I hear it's great for us AN folks!
-
Kayaking and hiking have worked well since surgery and I am very interested in trying downhill skiing again this winter. The mountain opened last week! :)
-
This thread is an inspiration to all of us in early post op! Thanks everyone! We will try our best to keep hoping and moving...Millie
-
Today I woke up a little wonkey so I hit the gym around 7am and returned home for breakfest at 9,ready for a good day.I have been able to return to almost all of my activities including golf,sailing,biking,walking and may even try skiing again.While throwing a football with my son over thanksgiving I was reminded of my post AN issues as I turned quickly trying to make a over the shoulder catch.Good thing I am not a professional football player.I started walking with a walker after surgery and have just gotten stronger with improved balance by remaining active.This is my new normal and it is pretty good.Keep Moving. Peace Dave
-
Dave, you sound very active! Let's hope skiing also works for both of us when we try it again. :)
Karen
-
Anyone try the Wii balance board? It comes with skiing and other inter active games.I first used it at Spaulding Rehab and bought one last year. It is fun,helpful and something you can do at home.I have not used it lately but plan on getting back on it to practice my skiing before hitting the slopes for real as a slow appreciative skier.When my kids get on it they blow my scores away and perhaps get some insight into my balance challenges.When I first joined this forum there were quite a few Wii posts with scores posted.Maybe we should start a new topic (Wii scores) and encourage each other. Older Wii with a balance board can be purchased at many second hand electronic game stores. Peace Dave
-
I don't gave a Wii but thanks for the suggestion. Maybe I'll get one. I bought a balance board that I practice on.
Karen
-
Hi All,
I haven't checked in lately, but this past week's chaos in Boston made me forget that it was now four years since the surgery at MGH. With everything that we've seen this week in Boston, the answer is clear that we have top notch surgeons, medical staff, and care givers here locally. I just wanted to give thanks to our wonderful medical personnel that continue to improve our lives day in and day out. We only see them maybe once up close and personal, but to these talented individuals, this is just another day in the office. We should all be very thankful.
I have nothing new to report after four years now thanks to staying active. The springtime is arriving (slowly), and our local peleton is back on the road and riding in the morning at 5:45AM. The longer rides come on the weekends when we all have the time. As the weather warms up, the rides will get longer, and the balance will get better. The basic message is still the same to those just beginning the AN surgery process. Get moving or keep moving, and you'll see a big difference. There is a reason why they get you out of the bed right after surgery; the more we move, the better we feel. Keep pedaling, running, walking, and anything that gets yo moving. We're all in this together!
Best regards,
SteveK
-
Hi Everyone!
Well, this is coming up on my fifth year anniversary of being AN free. Hopefully my old friends here on the Forum are doing well, and I especially hope that this thread gives some insight to those waiting, watching, and determining their next step on the AN journey.
To give a brief update, I believe all of us find a certain level of comfort with our post operative situation. Headaches seem to fade away after one year in my situation. I believe that it takes that long for the skull plates to truly heal and become one again. The muscles get abused too in different way, but they seem to improve well before the 12 month period. From a life long fitness fan, I can't emphasis enough the benefits of running, biking, and just simply walking that come to the healing process of a post operative body. Here in New England, the ice and snow is receding, and I will be back 100% to my morning biking routine with our peloton. Our only complaint is that we are getting older, and our pace in the morning at 5:30am is not the same as it was 10 years ago. A couple of the guys have had their own challenges medically as well. But we all share the bond of staying active and doing what we can. If you are 25, 45, or 65, or whatever, the difference between doing something and sitting around thinking about it is large. So I hope that we can all get out and enjoy the spring weather that surely must be on the way soon!!!! Life is good, the family is great, and I can't wait for fishing season to begin! Nothing like a pitching deck in 3-4 seas for excellent vestibular training!
Happy Spring!
Steve
-
Hi All,
Just wanted to check in to see if old friends were still actve and perhaps be of some help to new members. This spring will mark the ninth year of the post AN surgery, and life is still great. I hope that some of the younger members can look at this thread and see some hope that things do return to normal, albeit a new normal. In terms of activities, road bike riding is still not an issue, and the boating and fishing offshore is still a big part of the summer. Maybe I'm more judicious in terms of trying to play sports with the older kids now, but that is just being wise as the aging process catches up with us all. I would say the only issue would be taking midnight walks on pebbled beaches is not suggested, especially without moonlight! Otherwise, life is still good, and I hope any of the new members can ready and find some positive feedback in the thread.
Best to all,
Steve
-
Thanks Seal...
Or should I say seal the deal... Thanks for staying in touch with the group. This is quit meaning for the new members like me. I am in the process right now. I need hearing from someone just like you. I am running ever day with a weighted body suit. My goal is to reach 70 extra pounds (suit) by this time next year. Baby steps: add 1lb/wk to the suit. I am on watch and wait. The tinnitus sucks... so I just accept it as much as possible. The second MRI in Jan 2018 will give me more info. The hero members are awesome. My third grand child is coming in March. Life is good or maybe i'll just go crazy. Or both. My choice.
Peace,
Daoisthere