Recovery after CM surgery

Discussions about the illness, treatments, doctors, etc.

Re: Recovery after CM surgery

Postby coolbreeze_ca » Thu Apr 05, 2012 8:23 pm

Mark, thanks a lot sharing your experience. I would go thr' all the information.
Did you use any representation or applied personally ?
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Re: Recovery after CM surgery

Postby markkara » Thu Apr 05, 2012 8:33 pm

Coolbreeze,

I applied personally (so far). The pros and cons of applying personally or using representation are discussed in the books, particularly the 9 Step book.

Mark
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Thu Apr 05, 2012 8:38 pm

I am very disappointed by this :

I am going to India for a vacation. So, I asked for medical reports at Stanford in case doctors need to refer it. There are gross mistakes in 3 or 4 reports.

1. CM was on left side so problems before and after surgery all are on the right side. I only had one CM. Left side is not involved at all. Reports keep mixing up right and left side. Some symptoms are mentioned on right and some on left.
2. Symptoms before surgery are much more exaggerated than they actually were. I never had any sensation problem/numbness on face, arm and leg before surgery. Also, never had foot drop or slurred speech.

These reports are done : operative is by Dr. Steinberg himself (probable he must have just signed), discharge summary by a resident doctor and initial visit report by Joli. I asked them to correct it.

Am wondering how such a gross negligence from hospital like Stanford is possible ? Anyone had this problem before ?
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Re: Recovery after CM surgery

Postby PattiG » Thu Apr 05, 2012 8:54 pm

coolbreeze_ca wrote:Am wondering how such a gross negligence from hospital like Stanford is possible ? Anyone had this problem before ?


coolbreeze,
I am truly sorry you feel you've been treated negligently, but those are your feelings...

My experiences of 3 surgeries @ Stanford (out of 4 surgeries total) have been quite the opposite of your descriptions & I can only speak highly of Dr. Steinberg & team.

Best wishes to you in your recovery,
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: Recovery after CM surgery

Postby Elizabeth » Fri Apr 06, 2012 12:21 am

Im sorry you are frustrated about your reports. I always request copies....and almost always find errors. It's more common than you can imagine. As a nurse, I can't believe how much incorrect documentation goes on. I asked to have some corrected, but let most of it go. One crazy neuro had written "back to baseline", 3weeks post op...no rehab yet...I was furious. Enjoy your vacation and know it will all work out. You're alive...and that's awesome!!
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 Apr 06, 2012 1:41 am

Elizabeth/Patti, thanks for your wishes. I hope, vacation would recharge me.

Patti, am glad you didn't have any problems. I did surgery at Stanford because it is world class. I studied at Stanford and know their quest for excellence. I badly want to believe that. But things did not go very smoothly since surgery. Eventually, hopefully, my recovery would help me to restore the confidence.
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Re: Recovery after CM surgery

Postby Vernswife » Fri Apr 06, 2012 1:35 pm

Some of Vern's records are incorrect as well. I didn't even know you could question what they wrote. It hasn't seemed to be anything major.

As for SSD, Vern was approved before he was eligible. I took a very pro-active approach to this. I didn't get representation. I gave them every single thing I thought they may want. Every medical record and the book they make you write up had every job and job duty he had since he was 16 years old. I think God really looked out for us... my only advice is to give them more information that they even want. Best of luck :)
My Husband has multiple angiomas with an associated venous angioma all located in his brainstem. Large bleed leaving him disabled December 2006, another bleed April 2012 in his medulla. He's still on the road to recovery
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Re: Recovery after CM surgery

Postby coolbreeze_ca » Fri Apr 06, 2012 10:02 pm

Vernswife, thanks a lot for info about ssdi.

Regarding incorrect medical records...I would not have come to know, have I not asked for it for my India trip.
Maybe, as Elizabeth says, it's good to get it immediately.
The process to correct it is not simple especially after some months. I had to initiate the process by submitting a form which would be reviewed by upper management, legal team, and then neurosurgery dept. Addendum would be then added to it. It doesn't have quick turn around.

But I simply couldn't accept the such wrong records. If I need any treatment and need to go to doctor in India, they would take these records as their basis for treatment. Of course, now I don't hope I would get it corrected before I come back. And that is my source of frustration.
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Re: Recovery after CM surgery

Postby Elizabeth » Fri Apr 06, 2012 10:22 pm

Yes, I agree. I wad afraid the poor documentation would provide "evidence" to my insurance company that rehab was NOT needed. It wasn't a problem, but I feared it would be. I also think wrong documentation is not good for disability cases. They were so confused reading my records...probably contributing to delays and such. I think you will do fine in India, if you are able to articulate the mistakes. At least you are aware they are there...and this is not the first time its happened. Good luck!!
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 josh » Thu Apr 12, 2012 12:46 am

coolbreeze_ca wrote:
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.


Hi Coolbreeze,

I know I am late to this thread here but wanted to chime in and say thank your for sharing your experience and I appreciate how you are angry and upset by this. I can imagine. Your story is a vital one to share, and I have been fairly close to your position it seems but did not make the step for surgery.

( btw we are fellow Stanford engineering alums! )

In my case I recently quit my high stress 24x7 55-60 hours of a week silicon valley gig because I really could not handle it felt sick quite a bit, and my brainstem CA/CM has not been helping. I knew that I could not maintain that gig, nor the high profile career path that I had been on previously. With the hopes of being able to resume my life at full speed I was looking forward to the possibility of surgery and when my CM seemed to be presenting this possibility by erupting a bit from my brainstem I was very excited.

But but but ... the neurosurgeon in UCSF I have been seeing under conservative management restated that I should not do the surgery though it was possible, giving me odds of doing it now like 10-15% new permanent deficit and 7% not having the CM fully resected, much better to live my life with the quality I have and manage my symptoms. It was said that I am whole now, but will not be necessarily after I am operated on. I am "Neurologically-intact" or code for I can use all my vital systems.

So I appreciate your story, and I have been eager to pull the trigger, and wrestling with this conservative wait and see mode. Further I had been considering going to Stanford for another opinion and understand from your story and others here that I should be wary of an eager neurosurgeon. I am convinced that for anyone it is a difficult high risk procedure even the best and it seems that the advice for me it to only do it if I get worse and the risk/benefit tradeoffs make more sense in my case.

So thank you for venting and sharing your story and it can help folks like me not pull the trigger. I wish I had more for you about recovery and living with it, disability etc. I do have a support system for which I am grateful and at this point looking to rejoin the work force in some more limited role like consulting, more remote work, etc, still trying to figure this out though.

Regards,

Josh
Diagnosed at age 35 after brainstem hemorrhage in December 2010."1.0 x 0.4 x 0.9 cm focal lesion in the anterior aspect of the medulla most consistent with cavernous angioma." MRI in March 2012 shows growth and symptoms worsening (sigh). MRI in Sep 2012 maybe shrinking! New bleed in 2014,CM bigger,recovering OK *meh*
----
The Chronicles of a Rebel Brain http://brainrebel.blogspot.com/
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