2.5 mo. post-GK radiosurgery

[loukan777]

My wife was diagnosed with an AN back in April 2014.  In the afternoon on July 10 this summer, my wife and I consulted with Dr. Lunsford and several of his staff at UPMC in Pittsburgh.  The next morning, we arrived at UPMC at 5:15 a.m.  My wife was called into the outpatient GK unit at 5:30.  She was hooked up to an IV and started on a twilight type of anesthesia.  We had watched the frame attachment procedure on YouTube prior to our visit to UPMC, so we knew some of what was coming.  Apparently a lot of people dread the frame attachment from what I hear, but Dr. Lunsford minimized that by having him and 3 other doctors attach the screws simultaneously, thereby greatly shortening the process.  The globe was attached to the frame, the AN-specific MRI came next, and then the globe was removed.  After the MRI, Dr. Lunsford and a team of doctors met for about an hour, plotting the computer program for the GK for my wife's AN.  Dr. Lunsford came to my wife prior to the GK, somewhat pleased that there were pockets or cysts in her AN, which he felt was a positive sign that the AN would shrink post-treatment.  My wife went into the GK for about 40 minutes and was taken to a recovery bay.  The frame was removed, a head dressing applied, and after some rest, she was released.  Total time in outpatient was 6 hr. from beginning to end.

We went back to the hotel and my wife slept for about 3-4 hours, sleeping off the anesthesia.  When she awoke, I brought in some food and we ate our meal together.  The next day, my older son and his family came from eastern PA, to spend a couple of days with us.  My wife enjoyed the pool and the lounge chairs by the pool with the grandkids.  The next day, we went sight-seeing in Pittsburgh.  We had an enjoyable, busy day, and really enjoyed my son's family.

It seemed that we overdid over the weekend, just put too much into the 2 days, because my wife was exhausted mentally and emotionally as we travelled back to Wisconsin on Monday.  It took a couple of days for her to regain herself.

Now, 2.5 months post-treatment, my wife has been on a roller coaster ride of symptoms.  The symptoms are basically the same ones as experienced prior to treatment, though sometimes more intense and more frequent.  These include left-sided hearing loss, balance issues, facial numbness and tongue numbness.  She has had only about 3 headaches post-treatment, some lasting 36 hours despite Tylenol (tried Ibuprofen once, but didn't help that much) - just had to ride the storm out.  As noted by some other people with an AN, it seems that fatigue, stress and weather do affect the symptoms.  I tell people that when we take a walk, my wife hangs onto me because of the balance issues, and I like that!!  :-)  Also noted in some of the posts is that people post-treatment may experience irritability or short fuse.  That is very difficult for me.  Several people in the forums mentioned faith and prayer as very important.  Were it not that I had started down a 3-year program called Christ-Quest 1.7 yr. ago, having my program mentor be there for me, this path as caregiver would have been much more difficult than what it has been.

We have a 21-year-old son with high-functioning autism, some cognitive issues, and psoriatic arthritis.  So, I am a double-caregiver.  Lately, my wife has struggled with irritability with some of his issues, short-fusing.  It is not good for either of them.  We are exploring an option to get him into an adult foster home part-time or more, which is very difficult with our Christian faith concerns and my son's strong Christian beliefs and his mental/physical issues.  It seems that peace in our home is a high priority with my wife being post-treatment, peace for both her sake and my son's sake.

Thank you to all who have posted in the AN forums.  You have been such a support to me, and in turn, to my wife.  May God bless you all.

Loukan777   

[loukan777]

Have you heard of a head cold affecting the AN?  My wife came down with a head cold two days ago, and the symptoms seem to have greatly increased.  Her tongue is burning on the AN side, there is pressure in the head on the AN side, the AN side of the face is very numb feeling, and she speaks of tight cords in the back of the neck.

[ewhitese]

I encourage you to seek respite help for yourself, as the care giver you are taking on a double load that could be lightened with some help from outside.  Maybe members of your church would be willing to come and help with house work, meals and such.  Your son may have access to some assistance through the various local and national associations for disabled people.  You probably already have some of those things in place.  I am a one year post toasty Gamma Knife also UPMC alumni.  I am also recovering from post surgery side effects.  For me month 3 through month ten post surgery were the hardest to deal with as far as being symptomatic.  I feel as though my headaches, balance issues, vertigo, fatigue are starting to subside.  I have lost 90% of my hearing in my right ear and tinnitus is extreme, these two symptoms will most likely be permanent for me, but I am learning to live with it.

You mention the head cold, I am a chronic sinusitis patient which did not occur until my AN symptoms started to become an issue.  In fact I was diagnosed with AN through prep. for sinus surgery.  I am a walking barometer now, doesn't matter if we are experiencing high pressure to low or low pressure to high, the weather gets me, headache, fatigue, nausea, balance.  like I said not as severe as it had been but still there.  I can compensate with Tylenol, pain meds. or clariton, allergy relief meds.  My connection to the weather I think is my sinus condition.

I too have had a tough time with frustration, anxiety, irritability, depression and short temper.  It is hard not to get caught in the depression cycle because we feel the regret of what we have lost or the slowing of time as we sit and concentrate on our symptoms because there is nothing else we can physically do at the moment.  I started a diary of my symptoms and how I was effected by them for close to a year.  Around six months I was reading through them and realized I was clinically depressed, from the tone of my writings.  I would not have realized it if I hadn't written so much.  I did not go the medication route, just made the mental decision I was not going to let my tumor have control of that part of me.  I looked for ways to add humor to my life concentrated on being positive in my interaction with people and sort of worked my way out of it.  I still have my moments, my wife did not have time Friday after work to stop at the bank for cash, she was preparing to attend a fall festival in our community Saturday and needed me to give her the cash I had in my wallet.  We do not keep separate bank accounts and the money in our home is in a common pool so whether the cash comes from her or me is irrelevant it comes form the same sources and all combined plus I was going no where myself all weekend.  But I found myself highly irritated that I had to give her "my cash", and I obviously did not hide my frustration at all.  This is an example of temper and short fuse issues that are not based on reality and normally would not be an issue at all.  I am aware of my temper short fuse issues and regained my self control quickly because I am aware that it happens.  Six months ago I would not have been able to control it and would have needed to be alone for awhile to think about it and get myself under control.

Our brains are trying to compensate for the loss of hearing, balance etc., we are feeling pain in strange places and finding new things that don't work like they did some coming on out of the blue others slowly creeping up on us and all of a sudden we realize something isn't right.  To deal with all that and continue to do the things we did in the past sometimes just doesn't work, our brains are over worked and worn out.  I am blessed with a wife who has been wonderful through this whole adventure, she has stepped in to compensate for my short comings, has been understanding when I "have my grouchy pants on" and lets me go when I need to escape everything for awhile.  The reality is we will experience times that we are angry for no apparent reason either to the people around us or ourselves, which in itself makes us angrier.

You are in a challenging position at this point, your wife needs your understanding and your son will be effected by the changes as well.  I am slowly returning to activities I have avoided for a year.  I know that no two people will react the same in this recovery process but there is light at the end of the tunnel.  Gamma Knife Cyber Knife recovery is generally a shorter time frame than traditional surgery and if you research this sight in those topics for personal testimonies, you will get a feel for the types of symptoms to come and how others have dealt with them.  I gleaned an understanding of the symptoms as they were occurring to me and gave me some comfort finding a name for them and learning ways to compensate for them.  Share the information  you find with your wife, she will appreciate the fact that you are learning about the things she is experiencing.  One of the worst feelings in this whole mess is the feeling of isolation and the seeming lack of empathy of those around you.  There is no physical evidence of our issues accept when we acknowledge them to other people and the worst is when people compare their minor aches and pains to our blown up symptoms.  Sometimes the best thing my wife did for me was to just let me alone, trying to make things better is irrelevant when we know there is nothing to do but wait it out.  And sometimes just having someone listen to us is enough.

There is a category on this sight for caregivers, I have only read some posts there in passing but the archives are extensive for the sight, may be a good place to look for advice as well.  You are not alone, there are, amazingly, lots of us in the same predicament you and your wife are in.  Don't stop asking questions the more you learn the more you will find you don't know and will lead to more...you get the point.  Keep strong and pay attention to your personal need for rest and watch your stress level you will get frustrated as well, exercise is the best stress relief, walking will help stress and is low impact that you and your wife could do it together, I believe I concord my balance issues with a daily walk that we worked up to be four miles by end of summer.  Paying attention to those two things rest and stress is key to keeping your emotions in check.  Look for ways to deal with what is to come and you will be prepared with the tools you need to work through them.

I know that nothing I have written here is new and most of what I wrote about can be seen in others writings as well.  I thought it would be good to tell you some of my story personally.  Your family is in our prayers and we all in this AN community are pulling for you, we get it.

Ed

[loukan777]

Ed,
I really appreciate you spending the time to reply to my post.  You are very encouraging and posted some good direction.  The more I understand about what my wife is going through, the better for the both of us.  I am concerned about the coming months since I understand that new things can kick in in the 3-6 month post-treatment time.  My wife had a brain MRI for a non-AN issue recently and UPMC checked out the images and gave us a good report that the AN is stable and not needing medical attention for the AN.  That was some relief.  I believe God is really doing something with me in the way I am supporting my wife, not getting too stressed out, not trying to fix her, but just being there to support her - your prayers are much appreciated.

The forums and the ANA site have been invaluable for me.  They have equipped me for being a supportive caregiver, plus have enabled us to go the GK route instead of open surgery.  I still dig into the site and the forums for answers to questions that I have.

As far as respite for me, I really don't have many opportunities.  Church on Sunday is about the only time I get out.  I don't have any close man friends except for a local pastor with whom I call and he calls me - and we laugh!!

Again, thanks for the time you spent in your reply.  It's people like you who really care that helps to keep me going.

Loukan777