Recovery after CM surgery

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Re: Recovery after CM surgery

Postby Michelle2000 » Thu Nov 10, 2011 3:59 pm

I'm sorry you're experiencing loss of sensation. My son has a similar thing, though it affects him less. He has no sensation on the left side of his head, but he retains muscle control. It still causes him some weird and unexpected issues, but not as much, I imagine, as with a large area of the body.

He had a brainstem CM resected a year and a half ago. After a month or so he experienced tingling or tickling in some places on his face and by his ear. It drove him nuts because he couldn't do anything about it. We were excited that it might be a sign of recovery, but sadly it has stopped, and he has no new sensation. His ped neuro doesn't expect it to return. My son's eleven now and over time has developed a pretty good sense of humor about his numb face. He was even hoping for a cavity on the left side so he could get it fixed without novacaine.

I hope your sensation returns fully!

Best wishes,

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: Recovery after CM surgery

Postby PattiG » Thu Nov 10, 2011 5:27 pm

Hi coolbreeze_ca,
I sent you a Private Message...
Assuming you are @ Stanford Rehab, you've got a great team on your side!
Best wishes to you,
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 » Thu Nov 10, 2011 5:57 pm

If my sensation doesn't come back, I would really regret doing the surgery even though it is with Dr. Steinberg.
I was fully functional before (walking/writing with some difficulty), working, exercising etc. Who knows if my CM would have bled again and when.
Now, am wheel chair bound. I can walk a few steps with walker but that is it.

Am still at acute rehab and then home therapist will come for a few weeks till I go to outpatient rehab. I would work hard for next 6-8 months.

But I am single and have a very limited support system.
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Re: Recovery after CM surgery

Postby Elizabeth » Thu Nov 10, 2011 6:16 pm

Coolbreeze,
I am sorry to hear of your condition. My experience was very trying too. I was much, much worse after surgery....but better now 11months out. I can only encourage you to remain completly optimistic. Only imagine and think you will make a full recovery. If you don't think it will happen, I think there is little chance of it. Also, surround yourself with a like minded team. I fired my first rehab team after coming home....for their attitude. They were telling me to lower my expectations on a full recovery....NO WAY!! I found a new better team, and they knew I was determined to get better, and with their help, a ton of hard work, and many months...I am almost all better. :) you can do it, stay the course, and remain optimistic. You can contact me anytime , and I will do my best to cheer you on. My support system at home was not ideal(my husband was amazing, but we needed more help,because I was in really bad shape, and we have a 2year old) it was really, really hard! but I found a ton of support here, so come back anytime!! 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
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Fri Nov 11, 2011 3:56 am

Elizabeth,

Thank you so much for the support and kind words. I will try to be completely optimistic and remember your words if I am down.
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Re: Recovery after CM surgery

Postby Elizabeth » Fri Nov 11, 2011 7:09 am

Perfect!!! :) :)You can reach out to me anytime...I get how hard all this recovery stuff is, but I hope it gets easier for you all the time.
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
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Re: Recovery after CM surgery

Postby PattiG » Fri Nov 11, 2011 6:21 pm

Hi coolbreeze_ca,
I echo Elizabeth! :)
You've had an intense surgery & been through so much...now is the time to be extra kind & gentle to yourself (in between the hard work of PT, OT, etc.) ;)
During my own thalamic CM surgery rehab days, a wonderful nurse told me to: "allow myself to grieve for loss (temporary or permanent), but to not allow myself to get caught up (for long) in the loop of sadness & to focus on the good in my life."
Hang in there & applaud yourself for your accomplishments (however slight they may seem).
Thinking of you, 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.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Sat Mar 31, 2012 2:04 am

An update about this. It's about 5.5 months after surgery.

1. I have temp and touch sensation at many places. However, my pain sensation is still not normal.
Numbness is definitely reducing.
2. Right hand is a bit more functional.
3. I started walking back in Dec. but my gait is not normal. I have a foot drop sometimes. I am working on that.

I am doing rigorous PT and OT.
I have a lot of heaviness in the whole right side. Is it due to injury or weakness or mild spasticity or reduced sensation ? Anyone experienced that ? Will it reduce with time ? Any treatment for it ?

Dr. Steinberg thinks it is because of reduced sensation but am not sure.

Now some venting and an honest opinion....

Of course, I did a mistake of not meeting multiple surgeons and then decide. But Dr. Steinberg was very wrong in selling this surgery to me. He was so confident that I would improve and would recover fully to baseline in 6 months at most. I didn't second guessed him. I squarely blame him for my current state.
I am much worse than before at this time (I only had minor symptoms before surgery) and would continue to work hard to recover as much as possible.

I know that I can't go back but it would be useful to other people considering thalamic surgery. "In my opinion", such surgery is justified only "after" one ends in wheelchair. Only then risks are less than reward.
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Re: Recovery after CM surgery

Postby Libby » Sat Mar 31, 2012 1:02 pm

Cool breeze. I am profoundly sorry for you, but I also have so much respect for you. It is almost impossible for people to admit an operation was a mistake. I totally understand this. You just have to believe it is the right thing because it is done. I find your honesty so brave. I have not heard good results from most thalamus operations (not that there are that many). I was told not to have it operated on. It does eliminate bleeds there and absolutely my worst bleed was in the thalamus. Put me on disability, no more teaching, lots of tough things. BUT I don't want an operation to make it worse either.
I just wanted to tell you how I applaud your honesty, and I am pulling for you. I do believe you will get some better, but brain healing takes forever.
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: Recovery after CM surgery

Postby PattiG » Sat Mar 31, 2012 3:45 pm

Cool breeze,
My right posterior thalamic surgery was also devastating & required neuro rehab to relearn to walk & do basic tasks and I am coming to terms with the 'new me'.
So I truly empathize with what you are gong through...
My left-side is numb and I have what's called thalamic pain http://stanfordhospital.org/clinicsmedS ... ePain.html, with hypersensitivity.
As Elizabeth previously mentioned, it's important to focus on the positive and what you can do and will possibly regain. I know it's not easy...
Personally, I cannot & do not blame anyone for my deficits. I could not imagine living with my progressively bleeding, symptomatic thalamic CM as it was, but that's how I am.
There are some excellent neurologists @ Stanford http://neurology.stanford.edu/ & the Bay Area to work with you.
Don't give up on HOPE & the miracles of our healing brains.
Best wishes to you,
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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