Recovery after CM surgery

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Recovery after CM surgery

Postby cm_family » Thu Oct 27, 2011 7:40 pm

Hi,

My sister had surgery to remove CM at Stanford CA last week. It's been 9 days. Initial symptoms before surgery were some loss of fine control with right hand and right leg. But she was fully (well almost) functional. Looking at MRI(s), doctor concluded that she had at least 3 episodes of bleeding based on swelling visible in MRI and time line of symptoms.

After surgery, her whole right side is numb. She doesn't feel any sensation. From outside, it looks like she has control over her muscles, hand and leg. But because of numbness she can't control anything. She is at Rehab which she hates.

All doctors say sensation will recover in about 6 months. We are interested to listen to any experiences.

Thank you,
Regards
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Re: Recovery after CM surgery

Postby Elizabeth » Thu Oct 27, 2011 9:44 pm

I'm sorry to hear that your sister sounds as if her deficits are much worse after surgery. That is always a possibility...but one we're all hoping to avoid. I was much worse immediately post op, but so thankful to be alive..My deficits were manageable I thought...after all, I lived through the surgery. I worked really hard in rehab and have had an amazing recovery. It took me a LONG time. I'm 10 months out and still getting better, thankfully!! Please encourage your sister to muster her best attitude for the best chance at recovery, and with your family's loving support cheering her on always...she will get better. Patience and persistance is the name of the game. Best wishes!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Recovery after CM surgery

Postby cm_family » Thu Oct 27, 2011 10:30 pm

Elizabeth,

Thanks for sharing your experience. Were you immobile after your stroke? For you, at what point you started noticing difference once you started therapy?
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Re: Recovery after CM surgery

Postby Elizabeth » Thu Oct 27, 2011 11:15 pm

The first 4-5 days were really bad. I was paralyzed on my left side, drooling, couldn't swallow good...so no food. No walking. I couldn't remember how to tell time or how to tie my shoes. 4or 5days later, I started rehab and it came together so I could walk really quickly. Although I was very dizzy and throwing up constantly. I worked crazy hard in rehab. I have a little boy that I was determinded to get better for. I cried and puked my way through rehab...always pushing myself for my husband and little boy. I did all the exercises constantly in my room even after therapy was done for the day. It paid off, within one week they sent me home, walking,talking, with a ton of fine tuning to do at home. All the best for you guys.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Recovery after CM surgery

Postby Elizabeth » Thu Oct 27, 2011 11:17 pm

I think the first 6weeks were the most notable, in terms of spontaneous recovery. Once the swelling was reduced I think I started to feel better...slightly. After that its been a steady, slow process.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Postby Rockko » Fri Oct 28, 2011 6:07 pm

Sorry to hear of your sister's struggles. If I may ask, where was the location of the CM and subsequent surgery? Sounds like the brainstorm to me,,,
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Postby Rockko » Fri Oct 28, 2011 6:12 pm

I meant BRAINSTEM...

(stupid autocorrect...)
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Re: Recovery after CM surgery

Postby cm_family » Fri Oct 28, 2011 6:44 pm

No, it was not brain stem. It was on left side of brain. I don't know the technical term for the location.
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Re: Recovery after CM surgery

Postby PattiG » Mon Oct 31, 2011 2:27 pm

Hi cm_family,
So sorry your sister is having such devastating deficits post-op.
From your description of her deficits, I suspect her CM bleed was deep in her brain.
I too am a Stanford pt. :D & 3 of my 4 surgeries have been w/ Dr. Steinberg (whom I greatly TRUST & respect).
My 4th surgery of 3/9/10 was in my R. thalamus (on top of brainstem) & in comparison to my previous surgeries in less eloquent locations, deep brain surgery recovery has been the toughest & most challenging.
During my thalamic post-op, I spent 2 1/2 weeks of intense PT & OT relearning to walk, etc. Rehab was the toughest job I've ever had, but it was the most important one of all & it was a necessity.
All of our experiences & recoveries will vary & I hope your sisters recovery gets better. She has a GREAT dr. & team on her side that can help provide her with 'tools' to get back on her feet again & to adapt.
Best wishes to you & your sister & feel free to email or send me a Private Message.
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Wed Nov 09, 2011 5:41 pm

Hi All,

Am the sister who was operated on Oct 18 by Dr. Steinberg. My brother (cm_family) did post a question initially.

Thanks for the replies and your support.

My CM was in left thalamus. I am still at rehab (just completed 2 1/2 weeks). I did not think I would be so dependent (due to loss of sensation) after the surgery. Even though I hated it initially, I take PT/OT very seriously and do it enthusiastically .

I am young (45 years) and I trusted Dr. Steinberg fully when he said I was an ideal candidate and my symptoms would improve after surgery.

I would work hard to come out of it and have a loving family to support me.

Did anybody lost sensation and regained it later ? If so, after how many weeks or months ?

Thanks
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