Questions and Information About Cavernous Angioma

I just had surgery with Dr. Spetzler

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I just had my surgery for left parietal lobe cavernoma on June 18th in Arizona with Dr. Spetzler. My husband and I flew down to Phoenix on Wednesday the 16th from Ontario. Had the Pre-op testing (eg, bloodwork, ECG, paperwork, etc), MRI, and appt. with Dr. Spetzler on Thursday at Barrow Neurological Institute. Everything became more real when I saw my binder with my name on it. I thought, "Wow, we're actually doing it". At 7am Friday we went to Pre-Op again to get ready for surgery that was scheduled for 9am. The nurses were very nice and reasurring. They hooked me up to an IV and then at 8:50am a neurosurgeon, anesthesiologist and a surgical nurse came in  to explain the procedure to me in good detail and their roles and the approach that would be used. Then the anesthesiologist said he would give me something to calm my nerves, although I surprisingly wasn't overly anxious as I kew I was in the best hands. (I was scared of course but strangely not freaking out). But what he gave me pretty knocked me out immediately. All I remember was kissing my husband goodbye and then the next thing I new was that I woke up in post-op with Dr. Spetzler looking down at me. I think he was telling me how it went but I don't remember. I just remember taking his hand in mine and putting it to my cheek and saying thank you-then I passed back out. He probably thought I was a bit pathetic:(  My husband told me that after the surgery, Dr. Spetzler came to tell him that everything went well. Although he did say that the CA was "very tenacious" and it was a bit tricky to get it out as there was a big vein in the way that they had to deal with first. But he did get it all out he said. The surgery took four hours, longer than they said it would take initially. Afterwards I went to ICU where I was hooked up to lots of monitors, and was given morphine, but was awake. The meds made me sick to my stomach so I switched to Percacet which I've been on since. The next day (Saturday) I ate and walked around the halls many times on my own. My speech was a bit messed up as they anticipated due to swelling and the location of the surgery (speech centre), but they were happy about how well I was doing. That afternoon, Dr. Spetzler came in and said, "you can be discharged tomorrow".  He said, "that I know you are paying this out of pocket so you can have the post-op MRI at home so you don't have to pay for it here". He also knew that I was going to stay at the hotel across for a couple days before flying back to Canada, but I was to come back to emergency if anything happened or I felt bad. He was trying to save us some $$$ by discharging me as quickly as possibly, which we appreciated. He would not have let me leave had I not been doing so well. I asked him some questions one being, "will the CA come back"? And his response was, "it is possible but the chances are low". He said that "anything is possible"....and off he went.
On Sunday morning the resident doctor came to check on me as he did each morning and told me that he didn't think I would be going home that day as it had only been 48 hrs since surgery and he thought that was too early. I said, "whatever you think but Dr. Spetzler said I could go home today". He said he would check with him and hours later I was discharged.
My nurse that I had for 3 days named Steve, was awesome. I asked him some questions about Bret Micheals being there but he said he wasn't supposed to talk about it. But he did say that he stayed down the hall and that he was really nice, and shorter than he expected. Steve also said he wheeled Bret Micheals out when he was discharged with his body guards in the back elevator. Kinda cool!
After surgery, my head was killing (no kidding huh  ??? ) for almost a week around the incistion site. I've iced it around the clock which has helped. They used glue instead of staples which is sparkly, so I don't have any staples or sootchers to take out. Every day my speech is getting better. Typing and reading is laborious though. Articulating in conversation is a challenge but I know these things will take time. Otherwise, I am fine; walking, doing things... I just take it easy.
A nurse from ICU at Barrow called last night to see how I was doing and how I found the care at the hospital. I didn't have one negative thing to say. I am just glad it is over and I am home.
Four days after surgery (on the following Tuesday) we flew back home and no-one could tell I just had brain surgery. The incision is hidden under my hair so my neighbors or anyone else cannot even tell. Especially my kids who we didn't tell as they are too young to understand. We just told them we were going on a Anniversary trip to a hotel. They were so upset that they couldn't not go to a "hotel" :D  Not really lying becuase the day before the surgery was our 10th wedding anniversary (June 17th).
So, that is my story and I don't have energy to say more (I have to confess my mom has helped me type some of this, but not all).
I have no regrets. Even if we will be paying for this for many years to come. Thanks for listening, and I will continue to be on the webboard to support those who need it when I can, just as so many have helped me in the past.
Linda.
PS. I wanted to add that the day before the surgery a lady came to see me at the hospital. She asked me if I would be willing to donate any tissue for research purposes (the Ca). She asked me if I've heard of Angioma Alliance and explained that she works with AA, I said, "yes, I definatley have". I then signed a form and told her they could take whatever  they needed (the CA that is). Anything that would help Cavernoma research. I just not expecting that and thought that was amazing. Anyone else been asked that before surgery?
Thank you so much for sharing your story.  That was amazing.  I hope your speech continues to get better.
WOW! Congratulations! I'm so happy for you and your family. I hope that I will be able to share my successful surgery story too after I have surgery with him in September :) Best wishes on your continued recovery....the worst is positively behind you!
Linda, congratulations! Do keep us posted on your recovery. If they let you out that quickly, it sounds like you're doing very well!
I am so glad everything went well!
Linda i´m so glad everything went well and you´re on the road to recovery.
Have a wonderful summer and keep us posted :)
Great to hear that it went so well for you there!  I spent about five weeks there last Fall so I can certainly visualize your story.  Between my two surgeries, three weeks in the neuro ICU, and two more weeks in the the neuro rehab ward, I was ready to get out of that building. I'm glad that you got back to your family so quickly and can just concentrate on your recovery now.  Take care of yourself!
Hi Linda,

That is just amazing and wonderful news. I hope and pray for a speedy recovery. God Bless you and your family

Congratulations as well on the 10 year wedding anniversary. At least with this surgery you have a better looking future for another 10+ years of marital bliss.  

God Bless,

Henk :cool:
I just want to tell you how wonderful your story is. It is so great to hear you had a succesful surgery. It must give others a lot of hope. Thank you for sharing your experience and very glad you are doing well. I hope you continue to be very well.
Linda-

I am so happy everything went well!!! You are in my thoughts and prayers.  Your story gives me courage:)
Linda that's so great to hear you are doing so well!!!  So glad to hear you had such a good experience and you're back home with your family!  I cannot imagine getting on a plane and flying that soon after surgery-kudos to you!!!  Please keep us posted and we hope to continue seeing you around here!
Thanks everyone, it really hasn't sank in yet. Maybe it will when I have my post-op MRI done in a month. I wonder, "hmmm... what if he missed a bit??"
I am able to type on my own now-slow but atleast I can form words and sentenses now. It was 2 wks ago today that I had surgery, wow.
Stacey, I would have preferred to stay in the hospital longer, as I was very weak, had my insurance been covering the cost. But I was worried about something happening like an infection or something so I was eager to get back to Canada where any necessary hospital treatment would have been covered. Luckely, I haven't needed it. I don't even have any pain in my head now, unless I touch it or chew. But I do fatigue very easily.
I am in no rush to leave this forum. For 2 years I have told my husband about other's peoples stories from this forum. I feel like I still belong here and at the risk of sounding sappy, I feel I have a formed a fond bond to this place and the people on it.
I do hope that my story gives other's courage. I understand that everyone's situation is different but I have learned from this is not to go with the first opinion you get, which I did for two years.... Many neuro's don't know enough about CA's yet to be able to give expert advice. I know that from experience and seeing too many neuro's who had different opinions. For our families, children, and ourselves, we all deserve the best.
Linda,
    We are in no rush for you to leave the forum.  You still have all your experiences when you had the ccm and we get actually very few people who report back after surgery.  There are many that are anxious to know things about that.  
    You are more then welcomed here, and I am glad you are doing so well.
Quote (libby @ July 02 2010,11:27)
Linda,
    We are in no rush for you to leave the forum.  You still have all your experiences when you had the ccm and we get actually very few people who report back after surgery.  There are many that are anxious to know things about that.  
    You are more then welcomed here, and I am glad you are doing so well.

Thanks Libby!!!
I am so glad that your surgery went well and that your recovery is moving along, too.  Please stay on the forum!  As Libby said, it is good to hear from people that have had surgery and how they do post-surgery.

Best of luck with continued recovery,
Kathy
What a wonderful story....Thankyou!
Linda,
I am so happy to hear your wonderful news.
Best wishes.
Miri
That is wonderful!

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