Author Topic: Just when things are getting back to normal something else comes up  (Read 4923 times)

wendysig

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Hi All,

I'm having a little pity party for myself in spite of trying not to, since so many of you have worse problems.  I've had problems with my knees for a long time due to several old  injuries and have now been diagnosed with osteoarthritis in both knees.  One of the things I've greatly enjoyed and that has really helped my balance problems (ballet exercises) is at least temporarily off limits to me and since Staten Island is so hilly (I've been told to avoid walking in hilly locations) that is a royal pain in the rear.   I live on a hill that  runs for about a mile and my house is in about the middle of it.   I now have to drive to a park just to take a decent walk.  On top of that, I've also been told the three - four miles I like to walk is too far.  It's also back to PT for me to strenthen my thigh muscles.  The doc offered me prescription pain meds (my knees have been killing me) but I turned him down.  I hate taking pills unless I really have to, besides, I have plenty of stuff left over from my AN and BAHA surgeries.   I've done some exercises I'll have to do in PT and find  they are fairly painful.  UGH!  This makes me feel like an invalid and I hate that feeling.  Sorry  to complain so much about something not AN related, but I really just needed to vent.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

cin605

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Happy Mothers Day....I hope you feel better soon.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

suboo73

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Hi Wendy,

I read your post and immediately thought of my daughter, who at the age of 17, broken both her leg in single car accident and dislocated both of her knees.  She has a torn PCL in the back of her right knee, but not bad enough for surgery - some football players even have this.  Anyway, i can imagine your pain, and yes, you are allowed to have a pity party, we will listen!

I am so sorry you have to give up the ballet, i am sure that was helpful for your balance. (my daughter did this too, before the accident.) I also find it hard to believe that you should avoid walking 3-4 miles - wouldn't that strengthen your legs and knees?  My daughter has started riding a bicycle and apparently it helps her knees and thigh muscles.

Do you take glucosamine? My husband swears by this and arthritis runs in his family. 
My thoughts and prayers that you find some relief for your pain.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Keri

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I'm sorry too, Wendy. That's so disappointing, esp when it seems exercise would help, and the weather's getting nice and all that. I hope you can get some relief and that the PT's can help you know what works, and after a bit of a break, maybe you can get back to walking and the ballet. And don't feel bad for venting; running helps me with the balance problems and I'd be upset if told I couldn't do it. I guess it's hard to give up things that are good for you.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

LisaP

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Wendy,

It's ok to get down some times, I do, just dealing with an AN is enough so when something else comes up its hard to handle as small or as big as it may be.

So hang in there, it's ok, just to let you know that I recently had a bout of nausea that lasted from April 27 nonstop until May 4th and then it stopped.  It was caused by my AN, fatigue, my job and the fact that I threw my parent a 62nd anniversay party on the 26th of April.  I find that if I do too much I pay for it the next day but in this case over a week.


LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Kaybo

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Wendy~
This just stinks - I am so sorry.  I am with Sue - I would think that exercise would help...Have you gotten a 2nd opinion about what you can do to help the problem?  I hurt my knee running & have just started YOGA & LOVE it - there are so many variations so if you have one part of your body that is hurt or weaker, you can do that instead.

Always feel free to vent!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Sue

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Is it possible for you to find some place to swim or do water exercises?  That's a lot gentler on the knees.  But it can be inconvenient to find a swimming pool and the expense can be limiting also.  Walking is free!  I am sorry for you and the current situation.  I'm sure you feel like your choices are being taken away from you...NO FUN.  >:(

Hang in there,

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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Kaybo

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Good suggestion, Sue!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

wendysig

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Sue and K - Thanks for responding - I am planning on calling the YMCA later today. It's not right around the corner but not unreasonably far away.   I spoke to my husband about this latest problem and thought this might be the answer.  The Y offers a lot of activities, swimming among them and as you both point out a gentler form of exercise and great for all over body toning and  strengtheninig.  I know how to swim but am not a strong swimmer -- maybe I should look at this as an opportunity to improve my swimming skills rather than a setback.  When one door closes another opens.

Lisa - ANs do have a way of sucking the strength out of you when you overdo things. Sorry to hear you had not been feeling well, I remember reading about your long bout with nausea and am glad to hear you're finally feeling better.   Thanks for letting me vent my frustrations.

Sue and Keri - Thank you  for your responses.  The doc has no objection to my walking, just the conditions and the length of my walk.  He feels  that the route I'm taking (lots of hills) , which I find kind of fun and challenging, is doing me more harm than good and a mile is plenty vs. three our four miles..  Until recently, the past two weeks or so, my walking didn't really seem to be effecting my knees but they are badly inflammed.  He explained that walking uphill is a little hard on the knee joint, but walkiing downhill is even worse since it puts a lot of pressure on the joint.  One of the reasons I chose the route I've been walking is the hills.  Walking downhill especially is a big challenge to the vestibular system. especially when you walk quickly.  I feel like the improvements I've had with my balance are mostly  because of my walking and ballet.  He also wants me to stop ballet because of the stress it puts on my ikness.  I have to advmit some days my knees really hurt after ballet, but I've felt the benefits outweighed the pain, since it is short lived as a rule,  plus, my daughters' dance teacher has been so wonderful about  making time for me.  I have also found that if I stop doing either of these for very long, my balance problems get worse, so the prospect of my balance getting worse again  is kind of depressing.  On the other hand, the doc told me he feels that much the pain I'm having  is because my inner thigh is not as strong as my outter thigh and is causinig my knee cap to track incorrectly, so maybe, I'll at least be able to take a ballet class again someday.  He also said if PT doesn't help improve the pain, we can discuss an injection of something called Sinvisc One which replaces the fluid in the knee that lubricates the joint.  He also recommended glucosomine condriotin (Spelling?). 

I've been  looking for a silver lining in all of this and the only one I can come up with -- and it's a good one -- is that maybe I'll finally get back into really good shape by working hard in PT and swimming if I decide to join the YMCA.  I'm also thinking that joining the Y could be a fun thing to do as a family -- when I mentioned it to my older daughter (14 going on 15) she said a few of her friends are members too.  I would much prefer that she spend time at the Y than Wendys or the mall, even if its's time she spends with her friends instead of me.   ;D

Thanks again,
Wendy


1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

CHD63

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Ditto on the water exercises!  I have had osteoarthritis for many years and would have given up a long time ago had it not been for the deep water fitness classes I took.  We wear belts and cannot sink in deep water ..... doing all of the typical "land" exercises, only in water .... no jolting to the knees from gravity, etc.  Our instructors have always geared the class so that each individual can pace him/herself as needed .... push yourself as much as you can or want to, etc.  This is through our local YWCA .... the YMCA did not have the program.

Here's hoping you can find a class nearby.  Or, simply buy the water belt and a noodle and do your own thing in a pool somewhere.  I'm sure there must be exercises galore on the internet (did not take time to check).

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

wendysig

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Re: Just when things are getting back to normal something else comes up
« Reply #10 on: May 11, 2009, 12:41:25 pm »
Hi Clarice -

Thanks for your advice.  There is no YWCA here just the YMCA.  The water exercises sound like they could have promise so I hope they offer them here.  As you say, there are lots of exercises on the internet too.  It's just a matter of making myself do them.  Since I find the exercises the doc mentioned to me painful I doubt I'd do them faithfully without someome like a PT pushing me though.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Jim Scott

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Re: Just when things are getting back to normal something else comes up
« Reply #11 on: May 11, 2009, 03:59:50 pm »
Hi, Wendy ~

Of course I was dismayed to learn of the osteoarthritis diagnosis in your knees.  Ouch!  However, I'm pleased to read that you're seriously considering the water exercises at the YMCA.  I know they have excellent programs.  My (now adult) son learned to swim there.  I wouldn't assume that ceasing your ballet class and long walks will immediately generate balance instability.  It might have some effect but as long as you keep active your balance should at least remain stable.  If your knees are being damaged by the ballet and lengthy downhill walks, you really don't have much choice but to pull back on those activities, as you intend.  I hope this situation is temporary and that the swimming exercises will be effective as well as a way to stay connected with your teenage daughter.  Please post updates.  Thanks.

Jim   
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

wendysig

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Re: Just when things are getting back to normal something else comes up
« Reply #12 on: May 11, 2009, 09:07:31 pm »
Hi JIm,

Thanks for your reply.  Although I'm hoping to eventually return to ballet I'm also hoping I'll get to enjoy the YMCA.  I am not that much into exercising for the sake of exercising and ballet and walking are things  I've come to enjoy.  Although I enjoy swimming to some extent it's not my favorite sport either, but I guess we all do what we have to do.  Hopefully the payoff will be being able to return to the things I really do like to do and of course, a lot less knee pain.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

wendysig

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Re: Just when things are getting back to normal something else comes up
« Reply #13 on: May 12, 2009, 07:37:45 am »
Hi Donna,

Thanks for your reply.  I've always been impressed with the strength of your spirit and now even moreso.  It is amazing that you have arthritis in your hips and still stay as active as you do.  I haven't seen you post about Jim lately, but hope he is still doing well.  Please know that you that you and your family continue to be in my prayers. 

When I went to the doctor last week, although the diagnosis did not come as a complete surprise, as I have had  knee pain of varying degrees for some time,but  it is only very recent that it  has suddenly gotten much worse.   I did find actually getting the diagnosis somewhat depressing anyway.  I have decided not to let it keep me down though.  I bought new braces for each of my knees yesterday and found a park with a pretty level pedestrian path, some slopes, but no real hills and made an appointment to start PT.  I am not sure what the local YMCA has to offer for water exercises but plan to go there today to check things out.  At the very least, they do have a pool, so I will at least be able to swim there.

I tend to believe my arthritis is injury related.  I fractured both of my knees when I was nine years old -- I was playing tag with my friends and ran out into the street and I had a collision with a kid on a bike.  Since then I've reinjured both of my knees in falls (possible AN related?), once badly enough to loosen the knee cap in my left knee and end up in a cast for six weeks.     I've never heard of eatiing for your blood type (I'm A+)  but will look into that and see if it is a help.  Quite a few people have mentioned Glucosomine condoitin and I plan to pick that up today too.  Potatoes and eggplant are two of my favorite things, so I hope I don't have to give them up.   I really HATE taking pills, which is another reason I am unhappy but like I said to Jim in an earlier post, we do what we have to do to keep going, and hopefully get better.  Anyway, thanks for your advice, I can use as much as I can get, especially from people like you who know what I am dealing with.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Dawn

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Re: Just when things are getting back to normal something else comes up
« Reply #14 on: May 12, 2009, 09:08:52 pm »
Hi Wendy,

Just reading about your OA in your knees.  I see your looking at the YMCA...not sure where on the island you live but the JCC on Manor road by Susan WAgner High School has a great pool there as well as the college.

Which Doctor did you see?  Where are you going for PT....you know that is what I do for a living right....lol

Let me know if I can help you in anyway with exercises or something like that.  But I recommend pool exercises to all my patients...it is the best exercises b/c of the water it takes all the stress off the joints and you will be able to get more out of your exercises.  Well keep me posted, sorry took me a while to chime in but haven't been on in a while.

Stay strong..

Dawn
Diagnosed 12/08...4mm Left AN in IAC...Wait and Watch for now...Next MRI scheduled for 8/09 Doctors not sure if its AN, Lipoma or Hemangioma????

Also diagnosed with Chiari I Malformation - looking into options for that