Author Topic: side effects post-treatment  (Read 4556 times)

Hzo

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side effects post-treatment
« on: May 25, 2010, 02:22:28 pm »
Dear all,

It has been 2 months from yesterday that I had my surgery at the Duke and Raleigh Hospital, NC. I am feeling better, and I thank you all very much for your help and support. Without your support I would not have been like I am now.

I originally wanted to have my surgery at the HEI, and they already gave me an appointment, but it was too late as I started to faint many times and had a couple of partial seizures. The neurosurgeons in Puerto Rico suggested me to find the shortest way, and I could not reach California.

Dr. Fukushima accepted to do the surgery. The tumor was actually larger than it was found on MRI (more than 3.3cm). He left a residual to save my face, my balance and my hearing.Now, I still have some issues with my balance and I still can hear, but it is reduced, probably, to 50% on that left side. I usually have fullness and strong tinitus on that side, and that bothers me a lot.


Speaking of the side effects, I just wanted to ask you a few more questions. Now, I have dry eyes, especially on the left side where I had the surgery, and that eye is itching a lot, especially, when I have a cold. However, I sometimes have a lot of tears on that eye, and the itching bothers me a lot. Any suggestions?

Also, I will start to work after one month. Do you think my recovery period would be enough?  My work is challenging,  and I still cannot stay in front of computer for more than 1 hour and ½ now. In addition, I am concerned the tumor may grow faster with the stress. It is possible?

How about the effects of the weather? Is there any theory that areas with cold weather would not be good for AN than any area with hot weather? I know this question sounds silly, but I just wanted to know if you have heard or have had any experience related to the rapid growth if this tumor.

Your suggestions and help are always welcome and appreciated.


Thank you again.


Mi

Jim Scott

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Re: side effects post-treatment
« Reply #1 on: May 25, 2010, 03:09:12 pm »
Mi ~

Thanks for the update.  I know you agonized over having surgery so I'm glad to learn that you went ahead with it and apparently had a good outcome. 

To answer your questions: You can try using OTC eye drops for some relief for your dry eyes.  My eye on the 'AN side' (my left) is occasionally dry but rapid blinking usually helps it.  If not, a few drops of 'Refresh' or other conventional eye moisturizer stops the itching.  

When to return to work  is always problematical and a very individual decision  I would suggest you consider part-time work, at first.  See how you handle it and increase your hours as you feel able, if your employer allows you this option.  Not all will. If part-time isn't feasible, you may want to wait a few more weeks before returning to full-time work.  Ask your doctor about this, too.

I'm not aware that hot or cold weather or stress has any provable, direct effect on an acoustic neuroma's growth rate - but then, I don't know who Justin Bieber is or why I should care about him.  ;)

I hope your recovery continues apace but I would guess that going back to a stressful job full-time may be a bit premature so you may want to re-consider that option, if possible.

Jim

  
« Last Edit: May 25, 2010, 04:27:21 pm by Jim Scott »
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.

CHD63

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Re: side effects post-treatment
« Reply #2 on: May 25, 2010, 03:51:23 pm »
Mi .....

So good to read your post.  I had been wondering how you were doing.  It sounds like you are doing well.  Are you still in North Carolina now?  Or back in Puerto Rico?

Re:  your balance.  Are you doing any kind of balance exercises or working with a vestibular therapist?  Until your other vestibular nerve takes over completely on your non-AN side, you will feel the dizziness/disorientation.  Even just walking, walking, walking in a safe environment will speed up this process.  There are many good examples online for exercises, as well.  http://www.cs.umb.edu/~dqg/newone/exercises.htm is just one rather short one.

Re:  eye dryness.  I did not have this issue but Jim has given you some good suggestions and others will chime in here as well I am sure.

Re:  going back to work.  Much depends upon the type of work you do.  If your balance is critical to safety on the job, you need to be confident you will not fall before returning to work.  If your work is mostly at the computer, you probably will be able to return OK in a month.  Like Jim said, if you have the option of returning part time, that would be best to see how you do with the fatigue.  Next best thing would be to see if you can arrange your schedule so you have the opportunity to take frequent rest breaks.

You did not say this (other than saying you cannot stay in front of the computer more than an hour and a half) but I am wondering if you are still having what we call gaze stabilization problems ..... not being able to keep your eyes still and/or focused.  I had that problem for a long time following surgery ..... and still have it when I am overtired or stressed.  Again, there are several exercises available to strengthen your vision.  Let me know if you would like me to PM you with some specific ones I used.

Re:  the weather.  I have not heard of anyone mentioning anything related to symptoms being worse either way ..... very cold or very warm.  It makes some sense that if you are too hot, your vision may be affected, but I do not have anything to really base that on.

As for possible rapid regrowth:  it is vitally important that you not postpone or skip any of the follow-up MRIs, until you know about that.  I am not a trained medical professional, but typically any fragment left behind does not grow rapidly because the blood supply to it has been disrupted.  However, that does not mean it could not grow rapidly.  Thus, get those MRIs and report any significant change in your symptoms to Dr. Fukushima or your neurosurgeon in Puerto Rico.

Many thoughts.  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

leapyrtwins

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Re: side effects post-treatment
« Reply #3 on: May 25, 2010, 05:59:31 pm »
Mi -

when you return to work, I suggest you return part-time if you are able to.  I returned to work part-time 2 1/2 weeks post op and found it to be the best solution for me since I was still very fatigued from the surgery.  I was able to work in the morning and then go home and nap in the afternoon, which made all the difference in the world  :)

I returned to work full-time 4 weeks post op and felt much better.

Good luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Hzo

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Re: side effects post-treatment
« Reply #4 on: May 26, 2010, 07:56:01 am »
Thank you very much for your reply guys. Your suggestions make sense. I would agree with all of you on starting to work part-time. I just thought about it yesterday, since I realize I cannot do anything without taking a nap either in the morning or in the afternoon. Iin addition, the work is a research and I need to stand up either in lab or in clinic for long beside the computer work.  It may not be safe yet. I am still feeling exhausted.

Yes, I will try to use the drops "refresh", and I hope it helps.

Yes, I forgot to tell you that my eyes are not yet stable, and there are some movements of them which I feel dizzy and unbalanced. I have read some suggestions online that it can be corrected with eyeglasses,, but I did not take it further since I just had my eyeglasses renewed before the surgery.

I did not go to any vestibular therapist or do any kind of balance exercie. I thought walking for about 1 hour a day enough, and that is what I have done so far. I would like to follow this more with you, Clarice. Would it be fine to send you PM ?

I am still in North Carolina now, but will  start to work either in Puerto Rico or Philadelphia after one month.  That is why I asked you about the possible effects of the weather. I am still debating on the place to go, since i am concerned about the regrowth of the tumor. I wiill have an annual MRI follow-up though. I hope everything would be fine.

Again, thank you very much for the good advice and especially the support.

Mi

turbomom

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Re: side effects post-treatment
« Reply #5 on: May 31, 2010, 07:20:49 pm »
Hello,
I just finished reading your post and I wanted to add my two cents worth. I am having my AN surgery with Dr. Fukushima on July 7th at Duke/Raleigh Hospital. From your post it sounds as if all went well and that you are recovering nicely.
I find your comment about weather interesting because I have wondered the same. Whenever we have lots of rain with a change in humidity and barimetic pressure change, I have a noticeable change in my hearing. The ringing is worse and my face actually feels tingly(I don't usually have the tingling). So, no your question is not silly. I think the weather has some play on these tumors!
If you don't mind, can you share with me how your first two weeks post surgery went. I chose to have my surgery over the summer since the kids are out of school. Did you need someone to help you at home, like maybe a parent, or could you do most everything on your on. I am also hoping to fly to Texas one month post surgery..... I hope I'm not being too over-eager about the feasibility of the trip.
Anyhow, I glad your recouping nicely and as time passes I pray the little issues will clear up.
Lisa :)
tinnitus, mild hearing loss, occasional light-headiness, rare imbalance. Diagnosed on 07/09; 14x9x8mm intra and extra canalicular of left ear. Repeat MRI on 1/15/10...waiting for radiologist to read, but on quick review little growth shown.

CHD63

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Re: side effects post-treatment
« Reply #6 on: June 01, 2010, 08:19:41 am »
Lisa .....

Quick reply about flying.  Many AN patients have flown to California and back for surgery, returning as soon as 10 days post-op with no problems so you should be fine one month out ...... barring no complications following surgery.

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

leapyrtwins

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Re: side effects post-treatment
« Reply #7 on: June 02, 2010, 07:09:34 am »
Many AN patients have flown to California and back for surgery, returning as soon as 10 days post-op with no problems so you should be fine one month out ...... barring no complications following surgery.

Clarice is right, but when you can fly post op depends on your doctor. 

I had surgery locally and my doc prohibits flying for 6 weeks post op.   

So, please ask your doc.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways