5 mos. post GK increasing symptoms

[loukan777]

My wife was doing really pretty well until about 2 weeks ago.  Then, she had a sudden definite drop in hearing.  A week later she had a mega-headache like she had never had before.  The AN side of her face appears swollen, is so tingly that it borders on painful, and cannot sleep on that side due to pain.  It seems her balance is getting worse and I have seen her stumble or lose her balance more frequently.  She speaks of a "tight cords" feeling in the back of her neck.  There seems to be a problem with the side of her neck on the AN side, possibly affecting her swallowing.  There is also some pain behind the AN eye and a feeling of pressure inside her head in the AN area.  My wife is increasingly concerned about these issues, and I plan to contact UPMC tomorrow.  I have not seen some of these issues in the forum for a post-GK patient, and wonder if anybody has input on these issues.  I know that stress affects my wife's symptoms, but she is de-stressing by saying no to too many commitments, taking the easy way out of Christmas gift-giving, just resting in the Lord - though today we find that her invalid mother is refusing to eat.

[jsanders1379]

her symptoms sound like they could be due to post-GK swelling, which is pretty normal for 5mo. out...I had a bad episode @ 4mo. out and was given a one week course of steroids,which helped- also an Rx for vestibular therapy, which also helped... Good luck

[loukan777]

Thanks for the reply, jsanders1379.  How long does the swelling occur?  Does the swelling go down after a few weeks or months on its own?  She is now taking 5-LOXIN Boswellia Serrata Extract which is supposed to help with swelling after brain surgery.  I wonder if any AN patients out there have found success with 5-loxin to control swelling.

[Elliott]

Hello
Sorry to hear about your wife's worsening symptoms. It sounds like she is going through a tough time. My symptoms are not as bad as hers.
For me the worsening symptoms started about 7 months after radiation treatment ended. Had a scan a man ago 9.5 months post treatment. That showed 2 things.
1 The tumour had swelled a significant amount.
2 There are signs of necrosis in the centre of the tumour.
The doc is confident that all is going well. That eventually the tumour will shrink. But would not give anytime frame. From reading entries on this site it seems the answer to your question is...radiation is no quckfix, as frustrating as it may be, we have to be patient. The good news is that it does have a very high success rate...in the end!
I reckon destressing ourselves as much as we can is a great idea, whether we have a tumour or not. It only makes sense that the body will heal it self better when it is not under stress.
All the best to you two.

[jsanders1379]

My "swelling" symptoms were pretty bad for about 4-6 weeks and then began to taper off..I had an MRI during this time & it definitely showed swelling, but also necrosis in the center...

[NYLady]

Hello Loukan,

I had my gamma knife procedure done the last week of July 2014.  Felt great for about 3 1/2 months, then suddenly one day felt the old foggy headed, off balance symptoms I had prior to GK.  Been that way now for about 6 weeks.  Tinnitus and hearing loss about the same as before.  Due to see surgeon at the end of January or in February for first post procedure MRI.  My AN was small.  Hoping this is a result of swelling and that eventually it will resolve.  Due to the fact that many have experienced these symptoms after GK, I have not even contacted my surgeon and will see how it goes throughout the holiday season.  I plan on calling him after the holidays.  I had a great team at NYU and I am confident this is to be expected.  I can understand the anxiety you and your wife are feeling.  This whole situation is scary business.  My feeling is once you have put yourselves in the hands of excellent physicians, and take care of yourself as best you can, there is every reason to hope that things will eventually get better.....hopefully sooner rather than later.

My prayer is for all of us to be granted the graces of hope, patience and faith that things will improve. 

Best wishes to you both and to all on this wonderful forum for a happy, healthy and joyous holiday season.

NYL

[loukan777]

I so appreciate the comments that you folks have made in this thread.  We did contact my wife's physician assistant (p.a. to Dr. Lunsford), and she received a prescription for the 6-day steroid treatment and a prescription for facial therapy is forthcoming.  My wife did start on the steroid treatment, and there was notable relief in a short amount of time.  Now that she is on her last day of the steroid treatment, the symptoms (headache, tightness in the neck, etc.) seem to be regaining intensity.  So, is this where the hope, faith and patience that things will get better over several weeks comes in?  I appreciate the prayers.  Our Solid Rock is Jesus, our Anchor in this storm.  I am learning to support my wife, listen to her, encourage her, and not try to just "fix her".  We wade through these waters together.  Do people do a second steroid burst if the first one doesn't work?  Again, thanks for the replies in this thread.

[jsanders1379]

My doctors did not recommend a second steroid treatment. I think you have to be patient...it takes a while for the swelling to subside- I felt really bad for about 4 weeks & then it slowly got better..it WILL get better...

[loukan777]

Thank you for the encouragement.  As a caregiver, I am learning more and more that symptoms will be and that I can do little about it.  I pray, but it is different, not a desperate prayer but a prayer of releasing my wife into the Lord's hands.  Stress and not sleeping well seem to increase the symptoms.  My wife's mother is dying right now, and my wife is her primary POA - talk about stress, yet she seems to be handling it very well.  We'll get through this.  I really admire my wife for her strength and for her faith.  Again, I appreciate the encouragement of the folks on the forums, for all the postings for various issues are such a help, and the comraderie (sp.!) is so supportive.  Thanks.  Loukan