Our Story

My name is Alycia. I am new to this site. My husband has been through so much in the last few months. It is has been an emotional rollercoaster...wanted to share our story.

Mike and I have been married for five years. We have two beautiful boys...Tyler (4) and Nathan (3). Mike is the nicest guy you could ever meet...to him "a stranger is just a friend he hasn't met yet". He served in the military for five years. He went on to open his own residential apprasial business, in addition to opening two other businesses. He was very involved in the community, serving on the Rotary and Historic Preservation Society. We was an avid skiier and sailor. He is the most loving husband and father.

October 11...the worst night of my life...but God was looking over him. Everything seemed to fall in to place for Mike to live. Mike went to bed early...I thought he was just tired because he took the boys hiking that day. I fell asleep on the couch downstairs (which I never do). Mike came downstairs in the middle of the night to get Tylenol from the kitchen. He woke me up and said "my head hurts SO BAD" and then collapsed and started seizing. In shock and panic I called 911 and his sister who lives two doors down. The paramedics arrived. They worked on him in the house. They were on their way to Gates Hospital when they decided to turn the ambulance around and take him to the local hospital to make sure he could handle the transport. This was Mike's first miracle because he flatlined at the hospital. They were able to revive him and stabilize him for transport. He went to Gates where they found a ruptured level 4 SAH....I didn't even know what an aneurysm was at that time! They were able to successfully coil the aneurysm but did not think he would make it through the night...he did.

It seemed like Mike had every possible complication during his next few weeks in the ICU...he was minimally responsive, multiple vasospasms, a stroke, pneumonia, could not get off ventilator, had to have an emergency craniectomy, tracheotomy....it is all such a blurr. Eventually he pulled through and was able to be moved to the floor and then acute medical rehab. Just before he was going to be discharged home in December, he presented with chills and fever. He had a UTI but when they scanned him, they also discovered hydrocephalus. He was transported back to Gates. His surgeon tried a surgery that would not require a mechanical shunt, but it was unsuccessful. Days later, he underwent another surgery for a mechanical shunt, and then back to medical rehab. On New Years Eve, he finally came home...I thought "What a wonderful way to start 2011!" While I helped him walk into the house and greet his children, I cried and cried tears of joy!

Mike did absolutely phenominal in his recovery! His doctors were in absolute AWE! He was a miracle! He was off the trach and was eating normal foods. He was able to independently get around the house and do daily tasks on a walker. His speech, cognition, and memory were minimally affected...therapists were trying to find things that challenged him. His personality was the same...Mike loves to laugh and make others laugh...his sense of humor through everything he was going through was such a testiment to his strength and kept us all in good spirits. Our house became a home again.

After a couple weeks of being home, we started to notice that his balance was becoming increasingly unstable. We contacted his surgeon and she ordered a CAT scan and set up an appointment at her office. The news was bad and this was the first time Mike understood what was going on....he had hydrocephalus in the 4th ventricle that required an additional shunt to be placed. The ventricle was strangulated by scar tissue and was not draining through the original shunt. He was immediately admitted to the hospital...he was so scared and I assured him it was going to be ok. The next day he underwent a shunt revision. The surgeon came out and said he did great! After coming out of anestesia, they did a CAT scan and found that they missed the ventricle with the catheter...they had to take him back in and re-operate. Devistating! He just said I cant do this again and we had to tell him he had to...my heart broke. The second surgery was a success. He was at the hospital for a couple days and then back to rehab again. While in rehab, he developed bilateral facial paralysis...cant blink, close his eyes, smile, tightly close his mouth, or make any facial expression. We took him back to Gates by ambulance. They did every test and had every expert look at him....no answers. They put him back on steroids thinking maybe the brain was swollen even though MRI did not show this and sent him back to rehab. He came home again March 18th.

So here we are....Mike is worse than he has ever been. The paralysis continues and is greatly affecting his speech and ability to eat. His affect is so flat and he is disengaged with everyone...his friends, me, the kids. He is so atrophied from being in bed for most of the past 6 months. He is getting around on a walker but isn't nearly as strong and stable. He sleeps and sleeps. We just saw the surgeon yesterday and her best guess is that when the 4th ventricle decompressed the catheter changed position in the ventricle and is pressing on the brain stem causing his symptoms. MRI shows no cranial nerve damage but physically he is demonstraing that there is cranial nerve damage...cant wrap my head around that one. I asked about pulling the catheter back and she said surgery is too much of a gamble..he could die or cause further damage.

My heart breaks every time I see him and his struggles. I feel so helpless and am beginning to lose hope. I want a better quality of life for him and am sick the doctors telling me that I just need to accept this. I made an appointment for him at John Hopkins and we are going in the beginning of May. I don't know if they will have any answers or solutions but cant give up yet.

Thank you for listening to our story.

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Alycia, I am so sorry to hear what you and your husband have been through. Don't give up. Getting another opinion is a very smart thing to do. I bet that after all your husband has been through and the number of times they have been in his brain doing surgery he has some depression. Maybe you can find a doctor to treat him for that. Do not give up though, it is a very tough road but things do get better.

Take care, Shelly

Welcoem Alycia...and know ... not only is your husband and Survivor...so are you...it is very hard on the caretakers...

I looked at pictures and read your story and cried...I am emotional...at times...this has been such a journey for you, Mike and your family...I think getting another opinion from John Hopkins is a smart thing to do...

I am no answers, but prayers that eventually...Mike will get back his good health...and your family can get back to living life...so come here for support and know someone has you in their thoughts and prayers...me...Cyber ~ Hugs

Colleen, a survivor of a brain annie

Alycia,

I am so pleased you will soon be at JH...you do need another opinion. I pray that many more caregivers will give you feedback here and for a better quality of life for your hubby...and, you and your children. I am a survivor, not a caregiver; however, I have tremendous concern for you all who are, maintaining your physical and emotional health through the process. It is a trauamtic impact on children to see the changes in either their mother or father. When you are at JH, will you please ask them about that and their recommendation for any form of counseling for the boys, and whatever else the experts can bring forward?

Does your husband have home health care? If yes, how often and for what? What has the neuro / PCP addressed on it, or having him returned to rehab? More questions for JH...

Be sure all the med records are on their way to JH; and, please, write your long list of symtpoms / changes, the time between them, and a list of questions...leave space to write the answers...

Do you have family / close friends to help you with any and all at home and trips? Will you be driving to JH or will your hubby go by ambulance for comfort? There is likely a cabulence if help is needed for his comfort... because there are two of you...your hubby who has limitations...and, you the driver with added stress.

I used to secure a cabulence for my auntie years ago...they could keep her in her wheelchair and not add the attempt to get her safely in / out of the car...that was tremendous help to me...not because of my dealing w/her tiny body...but my concern for not moving her correctly/safely. Cabulence is expensive; not nearly as much as an ambulence...tho it is out of pocket, not insurance....unless perhaps it can be medically recommended???

Thoughts and prayers for you all

Pat

Thank you for all your feedback, thoughts and prayers. It is so helpful to talk with people who understand what we are going through. I am feeling good about going to John Hopkins. It seems to be the consensus that it is a good place to be.

We had yet another setback today. It was a warm sunny day in Buffalo...something we have been missing for a while. I took the kids and Mike outside to enjoy the weather. Mike went for a walk and then we sat and watched the kids ride their scooters around the neighborhood. Around dinner time, I started to call the kids in and put the toys by the door. When I turned back around, I saw mike fall face first, not bracing himself at all, on the concrete sidewalk from his seat. Blood was pouring out of his face. My neighbor came to help me and I called the ambulance. He went to the local hospital and then was transferred to Gates AGAIN! Of course, he fractured his scull and has blood on the brain. It is not significant enough to operate right how, but the next 24 hours will determine if he has to have another surgical procedure. They are going to give him platelettes and CAT scan him every six hours to monitor the amount of blood. It just seems like it never ends.... please say prayers! Thank you again for your support

We are planning on flying…it is less than an hour flight as opposed to an eight hour car drive. I have had all his records and scans sent to JH and have had some email contact with the doctors he will be seeing. I have also kept copies of all his records and scans for myself. Thank you for your suggestions and guidance…I will be sure to write out my questions because my brain feels like scrambled eggs these days :slight_smile: I never recieved home health care. I have limited rehab through my insurance and it was suggested to me that he would benefit more from the rehab than the nursing services. I am very lucky to have a very supportive family nearby to help Mike, me, and the kids get through this. I feel guilty when I get depressed or overwhelmed or drained because I am not the one suffering…Mike is. But it happens. Thank you for care and concern. God Bless

Do NOT feel guilty...in addiitona to the emotional impact...you are the mother of two, the planner, the organizer, the learning researcher... You have health, too...and, always, always, remember that for your two darling sons...they need more support now...yes, the trauma of having their daddy fall again and go back to the hospital...there is so much trauma for children...so many people think they do not understand...depending on age, may not understand an explanation of an aneurysm... they do see, they do feel, the changes/the trauma...

Prayers are wrapped around you all...

Pat