Tommy had surgery at Stanford on April 2nd and we flew home on April 11th.  Really long plane flight; we left at 2:30pm PA time, changed plans in GA and landed at 11pm PA time in Wilkes-Barre, another hour and we were home.  Tommy did well on the plane with just a little numbness in two fingers and his tongue on one side.  Normal from what we hear but we’ll still let Teresa and Dr. Steinberg know on Monday.  He says that he has some sort of foggy feeling in his head and says that music sounds like it has no rhythm.  He’s still getting that carsick feeling when riding in a car even when he drives.  Symptoms sound familiar to anyone?

Thanks to our support group,
Carol   

PS  I’m so glad we didn’t have to do this all alone!

Hi Carol,

Glad to hear you and Tommy made it home.  There's no place like home.

My brother had both sides STA-MCA in May of 2005 at Stanford by Dr. Steinberg. He said he didn't necessarily have the "exact" same symptoms as Tommy however, he said he had a bit of a "fog" but he said he had to remind himself he had two brain surgeries. He said it got better daily but said it took a couple of months but he also said he had good days and bad days in the beginning but ultimately they got better.

He said he didn't get "carsick" but that he had a "sick" feeling which was determined to be from the Tylenol three he was taking for pain. Apparently, it was tearing his stomach up. His doctor took care of that by changing his meds.

My brother said that really nothing made much sense to him immediately after his second surgery but again reminded himself he had two brain bypass surgeries.  He said he listened to music but can't recall if he really heard it or whether it had rhythm (maybe that's the fog he refers to).  He said music today has rhythm.  He listens to music while walking and says it allows him to pick up his step. He also mentioned some tingling and temporary numbness in his extremeties at first. He thought that was the result of a long plane ride and the layover and the next plane ride. He thought he sat too long on the first flight which was almost 4 hours before the layover.

It is different for everyone. He said that he believes how one feels is very individualized and depends on where one is with the disease at the time. Kevin was in pretty bad shape before he got to Dr. Steinberg.  He had had two strokes, a dissected right upper internal carotid artery and a hemorrage.  He is lucky to be alive and is doing very well today thanks to Dr. Steinberg and the MM team.  Today, one would be hard pressed to know that Kevin had ever gone through all he has been through.

It took a couple of months for him to feel totally like himself again.  I personally felt he had made a remarkable recovery in a couple of months.  I could visibly see the daily improvements but honestly, I saw him take three steps forward and the next day two steps back.  It was a bit of a roller coaster ride in the beginning but that was brief and my goodness, the ultimate outcome has been absolutely wonderful and much better than I or he could ever have imagined.

There was a time when my brother couldn't speak and didn't know who I was or where he was.  It is only by the grace of God and the hands of a skilled surgeon that Kevin is alive today, can speak with very little difficulty and be who and what he is today.  It amazes me that a body can go through so much and come out on the winning side.

Perhaps others have had the same symptoms as Tommy and will share their symptoms and be able to shed some light on some of Tommy's specific symptoms.

Keep us posted on Tommy's progress.

Hugs,

Lore

Carol,
The music thing really hits home for me. I had a 1.5cm hemorrage in the right temporal region. I found out later that this section of the brain is the music center. I played the guitar before my stroke and surgery but now cannot "feel" the music and lost alot of the motivation. The rhythm is the hard part.  Occasionally I'll still play but I'd say it hasn't returned fully. Hope all goes well and remains well.

Russ