Left Thalamus Cavernoma

Discussions of issues related to living with cavernous angiomas

Re: Left Thalamus Cavernoma

Postby Elizabeth » Tue Jul 08, 2014 4:18 pm

Patti,
No thanks necessary..you are the single greatest inspiration that helped change the course of my life.. And I am forever greatful!! You are living life in a way we should all aspire to. :) Thank you for being such a role model!!!
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: Left Thalamus Cavernoma

Postby Lynn » Wed Jul 09, 2014 12:32 am

dana wrote:I am wondering if your doctor would be willing to hear my information?


Hi Dana-

My local neurosurgeon helped me send everything to Steinbergs office. I'm pretty sure that both he and Spetzler will review out of country requests. Steinberg is at Stanford and Spetzler is at the barrows in Arizona.

Good luck with everything!
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Re: Left Thalamus Cavernoma

Postby Lynn » Wed Jul 09, 2014 12:54 am

PattiG wrote:The 'nerve pain' you mention is most likely what's known as central pain syndrome, CPS.
http://www.ninds.nih.gov/disorders/cent ... l_pain.htm. I hope Lyrica offers some relief for the pain.
I too had a (right) thalamic CM resected by Dr. Steinberg in 2010. Mine turned out to be way more involved in my brain than anticipated & unfortunately created more deficits post-op, including central pain syndrome.
Best wishes & cheering you on,
Patti


Hi Patti-

Thanks for your reply! I started having CPS symptoms before surgery and they got worse after surgery. We increased my dose of lyrica and I think I'm getting close to being able to go down to my original dose. The lyrica doesn't completely take my symptoms away but it does help some. I fortunately don't have a lot of side effects except maybe a little bit of sleepiness.

Best-
Lynn
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Re: Left Thalamus Cavernoma

Postby Michelle2000 » Wed Jul 09, 2014 3:01 pm

Lynn,

Thank you for sharing your story.

Best wishes on your continued recovery!

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Re: Left Thalamus Cavernoma

Postby dana » Wed Jul 09, 2014 6:09 pm

Hello Lynn and Ladies :)
I contacted Dr. Steinberg's office and received a very prompt reply. I have already sent my films and reports. Thank you to all of you for all of your support, information, and words of wisdom. All of you and this forum have made a world of difference!
Dana
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Re: Left Thalamus Cavernoma

Postby vandy » Fri Jul 25, 2014 5:41 pm

Hi Lynn,

Welcome to the forum. Thanks for sharing your story. Congrats on the surgery and we wish you an excellent recovery. Remember the brain heals slowly so it may take some time for all to go back to a more normal situation.

Best wishes,

Henk :ugeek:
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Re: Left Thalamus Cavernoma

Postby PattiG » Fri Feb 10, 2017 4:31 pm

Hi Lynn,

Skimming through older posts & wondering how you are doing?
HOPING you continue to improve & that life is good! :)

Best wishes,
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.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
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Re: Left Thalamus Cavernoma

Postby Lynn » Tue May 09, 2017 3:03 pm

Hi Patti -

Thanks for checking in, I appreciate it. It’s hard to believe that it’s been so long since I originally posted. A lot has happened, I’m still in PT, have deficits and pain but I’ve come a long way.

Some of my accomplishments:
    I work part-time (20 hrs a week) outside of the house
    I’m able walk my dog each day
    I went on a girls’ trip to Disney for a week
    Stopped using my walking stick
    Went swimming
    I'm driving again

Things I’m still working on and may forever be working on:
    Terrible nerve pain on the entirety of my right side
    Loss of sensation (numbness) on my right side
    Foot drop
    Muscle weakness
    Fatigue from effort and medication

I have good days and I have bad days, but I always try to remember that it could always be worse.

I saw your story in Stroke Connection and it was great to see some light being shed on CPS. It also breaks my heart to read about the pain you have because I know what it feels like. It may not be quite as bad but I have days where it’s a real struggle to make the effort to things like take my dog around the block or do chores. Distraction is definitely one of the ways that I deal with the daily pain.

I wish you all the best, keep in touch.

-Lynn
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Re: Left Thalamus Cavernoma

Postby Elizabeth » Wed May 10, 2017 12:50 am

Congratulations!!! You have been hard at work and accomplished much! Great news! Cheers to a continued recovery and to more good days than otherwise!
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: Left Thalamus Cavernoma

Postby PattiG » Wed May 10, 2017 6:30 pm

Hi Lynn,

Thanks for the update.
I'm in awe you're back at work, able to drive, no longer using a walking stick and able to walk your dog.
So many accomplishments in a relatively short time and such HARD WORK regaining them. Congratulations!!!

Take care and keep up the good work. :)

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.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
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Location: Oregon

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