Athletics and Post AN Life

[texsooner]

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

[Seal]

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

[Seal]

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

[Seal]

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

[Jim Scott]

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

[Seal]

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

[leapyrtwins]

Steve -

thanks for the wonderful update.  It sounds like things are very, very good.

Glad to hear it!

Jan

[Lizard]

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

[Seal]

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

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

[nancyann]

Steve (Seal):  thank you so much for the positive words you express....
your tenacity is catching !!!
keep moving forward...

Always good thoughts, Nancy

[Lizard]

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 

[Keri]

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

[CHD63]

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

[Seal]

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

[niveklmartin]

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