Left Thalamus Cavernoma

Discussions of issues related to living with cavernous angiomas

Left Thalamus Cavernoma

Postby Lynn » Sun Jul 06, 2014 3:29 pm

Hi! This is my first time posting on the forum, I found reading everyone's stories helpful during my diagnosis and surgery. So, I wanted to share my story in case I could inspire and help someone else.

One morning in December of 2013, I woke up to my entire right side feeling tingly. I knew that something was wrong, so we headed to the emergency room. After many tests including an MRI they found a cavernoma in my left thalamus.

I would like to say that I was completely surprised but I wasn't. I was already familiar with everything angioma since both my mom and sister have the disease. However there is nothing in the world that could have prepared me for this diagnosis. It was one of the scariest moments of my life.

I spent three days in the hospital for observation and was sent home to rest for four weeks. We did a new MRI then and additional bleeding was found in the same cavernoma. I also had a lot of swelling so we did a large dose of steroids. At this point I have numerous symptoms, numbness and tingling on the right side, nerve pain, trouble walking, foot drop, extremely tired, a little bit of speech issues. Besides a couple weeks of steroids, I also take Lyrica for the nerve pain.

At the end of January, I start rehab (PT and OT) twice a week. I make tremendous strides over the next month or so. But at the beginning of March I start to feel tingling on my left side. I contacted my doctor right away, we do a new MRI and find even more bleeding (5cm). My neurosurgeon recommends surgery but I need a specialist. He recommends three doctors, one a few hours from me (I met him, but he wasn't the right one), Dr. Spetzler and Dr. Steinberg. My films were sent to both doctors, they both said I needed surgery. However Spetzler communicated with my neurosurgeons office and Steinberg called me directly on a Saturday. I missed his call but I called him back on a Sunday evening and he spent twenty minutes on the phone with me and my family.

The decision was made for me, Steinberg was the right choice. And two weeks later I was in California to have surgery. Choosing surgery was one of the hardest choices I've ever made. But in my mind it was between getting the cavernoma out of my head or letting it kill me. Before I made my choice I spent many hours reading the angioma forum and Facebook page. I also knew the risks and outcomes from talking with Steinberg. The worst seemed to be that I might have to start over with my rehab. I figured if I was able to relearn to walk once then I could do it again.

Surgery went well, I was out of the hospital in three days. Walking with a cane very slowly. I needed a lot of help from my husband and family the first few weeks. But slowly I was able to take care of myself, each day I was better just a little. I started back at rehab two weeks after surgery. My walking has greatly improved in the three months since surgery, my other symptoms are also getting better but I still have nerve pain, numbness and tingling, trouble writing and slight foot drop. The tingling on the left side was gone after surgery.

I haven't been able to drive or work since December 2013. I'm hopeful I'll be able to get back to work someday but right now I'm trying to focus on healing. I know that some of my symptoms may never go away. But I am hopeful that I'll be able to get back to some of the things I used to enjoy. I have good days and bad days. But I keep going, because I'm alive and well. I figure if I can survive brain surgery then I can do anything.
Lynn
 
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Re: Left Thalamus Cavernoma

Postby Elizabeth » Sun Jul 06, 2014 5:10 pm

Welcome!
Congratulations!!!! Thank you for sharing your story. I hope your recovery continues to progress smoothly and steadily! The decision to have surgery was a courageous one. Wishing you all the best.
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 dana » Sun Jul 06, 2014 6:20 pm

Hi Lynn,

I am so happy to hear that your surgery was successful! I, too, have a cvm in my left thalamus; however, up here in Canada, no doctor will touch it. Several times, on this forum and on the web, I have read about people who have been successfully operated on in very difficult areas of the brain. This is not to say that I am over-simplifying, or minimilizing recovery and a life time of challenges. By success, I mean the bleed has been stopped and life expectency prolonged.

I am wondering if your doctor would be willing to hear my information? I basically have the same issue as do you; however, in September of 2013, I suffered a massive hemorrage and was hospitalized for two months. My cvm continues to produce micro-bleeds with symptoms. My next MRI is on August 25th.

Take care and thank you for sharing!
Dana
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Re: Left Thalamus Cavernoma

Postby PattiG » Sun Jul 06, 2014 11:19 pm

Hi & welcome, Lynn!
Congratulations on a successful surgery & yes, focus on healing. :)
The brain is an incredibly slow healer, so keep up w/ the hard work & determination w/ neuro rehab.
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
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

Re: Left Thalamus Cavernoma

Postby dana » Mon Jul 07, 2014 1:22 am

Hi Patti,
So I am curious...was the resection successful in the right thalamus, or do you still run the risks of more bleeds in that area? Thanks.
Dana
dana
 
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Re: Left Thalamus Cavernoma

Postby PattiG » Mon Jul 07, 2014 3:37 pm

dana wrote:Hi Patti,
So I am curious...was the resection successful in the right thalamus, or do you still run the risks of more bleeds in that area? Thanks.
Dana


Hi Dana,
My right thalamic surgery was successful in removing 100% of the CM, so no risks of further bleeds there. Unfortunately, I have innumerable CMs throughout my brain which do carry risks. :( So I'll always have the worries of future bleeds elsewhere. sigh...
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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Posts: 1083
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: Left Thalamus Cavernoma

Postby dana » Mon Jul 07, 2014 3:55 pm

Hi Patti,
I can't imagine...that's what bothers me...the potential for further bleeds, which I am sure I have already expreienced, just not to the same extent as last September. Do you work outside the home?
Dana :D
dana
 
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Re: Left Thalamus Cavernoma

Postby PattiG » Mon Jul 07, 2014 5:27 pm

dana wrote:Hi Patti,
I can't imagine...that's what bothers me...the potential for further bleeds, which I am sure I have already expreienced, just not to the same extent as last September. Do you work outside the home?
Dana :D


Dana,
I've been a CM pt. for 26 yrs & while I'm not 'immune' to the fears, I more or less just make the best of it & avoid dwelling on the 'what ifs'. ;)
I've not been able to work for some time, so I do what I can within my limits.
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
Moderator
 
Posts: 1083
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: Left Thalamus Cavernoma

Postby Elizabeth » Mon Jul 07, 2014 11:04 pm

Dana,
Patti is an amazing women...living her life courageously and graciously! She has traveled(and still is traveling) a much harder road than most will ever have to or could imagine. She served as my "mentor of sorts" while I dealt with my challenges. Her ability to cope with hard things awes me. I tried to emulate her courage during my darkest day, although my best effort is pale in comparison to her strength and coping ability. The wisdom she shared with me was exactly what I needed to help me be my best. I encourage you to heed her advise on "not worrying about the what ifs"...much easier said than done.....I know! We can't control the what its, but we can control our thoughts. Worrying about the unknowns will only make you anxious and miserable. Try to enjoy things that you love as much as you can. Some of the lessons from all of this have been liberating for me. I only do things that I want to do now...life is too short to waste time.
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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Posts: 1618
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Left Thalamus Cavernoma

Postby PattiG » Tue Jul 08, 2014 2:15 pm

Elizabeth,
From my heart, thank you. <3

Lynn,
May you continue to improve & move mountains (as you already have).
And yes, some days will seem better than others, but on 'bad' days give yourself a ((hug)), knowing tomorrow may be better.
Hoping we soon hear more on your amazing recovery. :)

Best wishes always,
Patti
Last edited by PattiG on Tue Jul 08, 2014 6:11 pm, edited 1 time in total.
Reason: Staying w/ the topic
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
Moderator
 
Posts: 1083
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

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