Recovery after CM surgery

Discussions about the illness, treatments, doctors, etc.

Re: Recovery after CM surgery

Postby coolbreeze_ca » Sat Mar 31, 2012 4:20 pm

Libby, thank you for your understanding. I think, your doctors are right in advising "no surgery"

I understand that accepting a mistake can come in the way of recovery. And I would work very hard in my recovery and with positive attitude. That's is what is in my hands.

However, somethings are absolutes and not relative. A mistake (Dr. Steinberg's recommendation and I fully trusting him.) is a mistake.

To give some background :

I am single and of asian Indian origin. I immigrated to US 13 years back. Am an electrical engineer and aluminous of Stanford Engg. school. I was fully functional and working full time before the surgery.
Now, after surgery, I can't walk well, use my right hand or drive. Am not independent and not sure if I can survive on my own. My life is totally changed because of this and I am thinking of going back to India.
(it would be very awkward to explain in India that surgery from one of top US surgeons did not turn out well.)

Without surgery, I don't know when/if CM would have bled again and what effects it would have. However, in my opinion, managing that risk is better than to prepone it by surgery. I would certainly bring this up in my next follow up with Dr. Steinberg.
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Sat Mar 31, 2012 4:24 pm

Patti, I saw your post later. I respect your opinion. I fully agree with you/Elizabeth that we should focus on positives.
However, at the same time, I think, I should frankly and openly share what/how I feel. That's what forum is for.
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Re: Recovery after CM surgery

Postby Libby » Sat Mar 31, 2012 6:44 pm

Coolbreeze, Supposedly where my ccm in the thalamus/hypothalamus is in an area where I would probably lose my speech. Ask anyone who knows me. I would not be happy if I couldn't talk. I haven't asked for awhile. I have 15 ccms in my head. I have had 9 bleeds. The thalamus bleed definitely left me brain injured. It took a long time to even become functional, but things got livable. After some years and I truly am brain injured. I have only had the one bleed in the thalamus. I have recovered well from the other bleeds, even the brain stem BUT everyone is different and just because they have a ccm, the exact location can make all the difference. The thalamus is so scary because it is part of the old brain and everything goes through it. Even the neurologists can't predict what symptoms will come from a bleed in the thalamus until the bleed has happened. I don't let myself think about it, but another bleed in the thalamus is my worst fear. Fortunately I have no memory so I don't think of it often ;) What can you do?
My son is an electrical engineer. Must you go back to India?
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 coolbreeze_ca » Sat Mar 31, 2012 11:57 pm

Patti, have you also experienced one sided heaviness during your recovery ? I don't have thalamic pain / hypersensitivity, but lot of heaviness which makes movements burdensome.
I asked Joli/Dr. Steinberg and they didn't have an answer. Joli referred me to pain management group inside Stanford but heaviness doesn't qualify as pain, so they didn't treat me. If you have, what treatment did you try ?

Sometimes I wonder.....if super expert CM doctors don't have an answer or clue, what hope do we have ? I feel very disillusioned after my surgery.

Libby, unfortunately, if I am not independent, I have to go back to India. I live alone. I also bought my first house here in April 2011. So, need to work in order to survive. I have made a life for myself after coming here and it is very difficult to leave after years of hard work but what can one do ?
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Re: Recovery after CM surgery

Postby vandy » Sun Apr 01, 2012 11:51 am

Hi CoolBreeze_ca,

Time for me to chime in here. ;)

I feel for your struggles and understand your frustration with not getting the recovery as was expected by the surgeon. Yet you do also have to understand that healing happens in its own time at its own pace and sometimes it does not happen at all. I had a brain stem bleed, and did not have the most severe symptoms like some people get from brain stem bleeds, yet after 2 years the majority of the symptoms are all still present. I have not received the recovery I expected (nor what the neurologist expected).

So back to your case....You could have had another bleed causing you the same problems you have now or even worse. Could you have recovered from that? No one really knows. You made a decision on what you thought was best at that time when you had the surgery. Was that a mistake? I don't think so. As you said perhaps having a few more opinions from others could have changed your mind at that time not to have the surgery, and perhaps you could have been told by the other top specialists that you should have the surgery. This would perhaps given you even more certainty to do the surgery. Since these are thought patterns on things we can't repeat/re-do, what harm are we doing to ourselves if we continue to rehash the thought of " What if? " There are always risks with surgery, and you take the risk based on whether you think it is worth it. You thought it was worth it. Have strength now and look toward the future. Give yourself 2 to 3 years to heal, see how far the recovery really can go. If you have faith in your brain and bodies recovery it may happen yet. (a former colleague of mine was just retired and went for knee surgery. The Hospital stay gave him C. difficile and he almost died. His recovery has never been complete. Is he sorry about his decision to have the surgery? NO, he had to move on and wanted to have more function in his leg, he ended up with less. He is strong and believes that there will be more recovery as time goes on.)

Like Elizabeth and Patti said earlier, you must not look back and question your decisions, but remain optimistic and look at the progress you have already made. You are a fighter and are strong. You came to America to be a winner, and you are. So keep this attitude in your mind and say that this recovery is also something that you can do. Believe in yourself as you have done in the past. Ask for assistance from your employer and friends. Perhaps some of them can help you organize a fundraiser and secure your home for the future. There is always HOPE and there are people that care.

Remember people are never independent !!

You are part of a society, of a group. There are others that can help you. Don't feel ashamed to ask.

Think about why you came to the US and why you want to stay. Gain strength from your past and go for it. I know you can do it. Keep the faith !!

Henk :ugeek:
Last edited by vandy on Sun Apr 01, 2012 11:58 am, edited 1 time in total.
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Re: Recovery after CM surgery

Postby vandy » Sun Apr 01, 2012 11:57 am

Oh..... to show you a fundraising possibility:

http://www.firstgiving.com/fundraiser/henk-vanderwilt/angioma_vanderwilt

Create a page like this for yourself, and we as a group can send some funds to you. Have your friends and family promote this through their social media sites like twitter and Facebook. You can get the support to go on.

Let me know once you have set up your account and I will be glad to make the first donation. ;)

Henk :ugeek:
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Re: Recovery after CM surgery

Postby PattiG » Sun Apr 01, 2012 3:24 pm

Patti, have you also experienced one sided heaviness during your recovery ? I don't have thalamic pain / hypersensitivity, but lot of heaviness which makes movements burdensome.
I asked Joli/Dr. Steinberg and they didn't have an answer. Joli referred me to pain management group inside Stanford but heaviness doesn't qualify as pain, so they didn't treat me. If you have, what treatment did you try ?


Hello CoolBreeze,
No I don't have a "heaviness" feeling in my left-side, but more of a muscle tightness sensation, along w/thalamic pain.
Since it's not a pain issue, one of their neurologists can probably address this best. :?:
I neglected to mention that while in the OR before my surgery began, the monitors registered my upper left-side extremeties 'quit' for some time from thalamic bleeding.
I live in rural S. Oregon and shudder to think of what could have happened to me if this bleed happened @ home, 400 miles away from Stanford...
I fully understand your frustrations & empathize with you. It's not an easy road & there are no easy solutions.
Henk offered some great input & suggestions.
Take care, stay strong & know you can do this.
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.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Sun Apr 01, 2012 3:47 pm

Henk, Thanks for your perspective, encouragement and information about fundraising.

My point was I didn't do necessary due diligence or even thought that I would not return to the baseline. That was my mistake. Similarly, I think, it is responsibility of the surgeon to explicitly spell out all the risks (Ideally this should be emphasized more) and be cautious than paint a very rosy picture. I certainly didn't expect this from doctor of Dr. Steinberg's stature. It was again my mistake not to take it with a grain of salt and find out more. Or maybe, I am not used to american way (onus lies on patient to find more.)

My father was very upset and suggested that it should be "mandatory" to take 4/5 opinions of experts for such risky (life altering) surgeries when there is no emergency so that patients are compelled to do due diligence.

It might seem as I am harping on it but would be useful to people considering surgery.

Regarding my recovery, I would do my best and with utmost positive attitude.

Patti, thanks for your input and I met one neurologist (Dr. Navaro) in Stanford but it didn't go anywhere.
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Re: Recovery after CM surgery

Postby vandy » Sun Apr 01, 2012 4:50 pm

It might seem as I am harping on it but would be useful to people considering surgery.


You are absolutely right. That is exactly what this forum is for. To learn from each others experiences.

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Re: Recovery after CM surgery

Postby Elizabeth » Sun Apr 01, 2012 5:44 pm

Coolbreeze,
I am sorry to hear of your on going struggles. I fully agree with you in getting multiple opinions prior to such a risky surgery. "Deep" brain surgery is much different than a superficial one. I also think the surgeons paint a much more optimistic picture than the reality many face. I think sharing your perspective is valuable to others that think surgery is just a quick fix. There are no easy choices and there are risks of surgery and risks of waiting.

I had done a tremendous amount of research prior to my surgery. And I was very glad that when it went wrong I had no regret as I felt that even with the "new"deficits...I'm still better off. I am currently "seizure free" and able to go off of Keppra. That was not a guarentee of surgery, but a very lucky bonus. If I had believed the surgeons about my post op condition...I too would be disappointed. The reality is that deep brain surgery is very invasive and a huge decision. Sometimes I hear others on here contemplating surgery, and your advise is completly relevant.While it would be nice if it was the surgeons job, but you are right...the due dilagence is with the patient. Realistic expectations are very important prior to such a risky surgery. For those that assume they will be no worse off afterwards, I too would offer words of caution. Sometimes I feel like I should not share my story to others having surgery, because I don't want to scare them...but the reality is the risk is always there albeit lower for an "easier" surgery. For me it came down to, what's worse....more bleeding or surgery? I still think more bleeding would have been worse in the long run for me.

I truly hope you continue to look to the future with optimism, and your recovery continues to your complete satisfaction. You still have a long way to go...it takes forever. I was doing extensive rehab for at least 10 months. (A far cry from the "no rehab" I was quoted prior to surgery!) I am still working on some things and I have more recently faced set backs which are discouraging to say the least. I absoultly refuse to accept there is nothing more I can do. I am constantly looking at new options, trying new things to improve my condition. By all means, assume your recovery is not over...although I see how the financial burden is creating fears and limitations. If you are not able to work, have you applied for disability? The system really stinks, but with some persistence you should eventually prevail.

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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