Recovery after CM surgery

Discussions about the illness, treatments, doctors, etc.

Re: Recovery after CM surgery

Postby coolbreeze_ca » Thu Apr 12, 2012 2:08 am

Josh,

Good to meet another Stanford Engg alums ! :)

I harped and mentioned few things quite bluntly (I don't have anything personally against Dr. Steinberg. He is very warm and nice) . However, I feel, if my story can save at least one person the mental/physical trauma my family is going thr' currently, it is worth it. IMHO, conservative surgeon is much better than adventurous one and great surgeon should know when not to cut. Also, I learnt the hard way that location trumps even the best of best.

Ironically, my Stanford connection landed me in a trouble :(. I was not my analytical self but kind of blindly trusted. I did it not just for an aggressive career path, but I live alone, and was dating someone. Now, my life has turned up side down.

Fortunately, my sharpness, cognitive skills, memory are not affected. So, I can still work in a capacity of electrical engg. though there would be a lot of physical limitations and reduced hours.
coolbreeze_ca
 
Posts: 39
Joined: Tue Oct 11, 2011 4:42 pm

Re: Recovery after CM surgery

Postby coolbreeze_ca » Thu Apr 12, 2012 6:14 pm

Another perspective/experience noteworthy to tell :

When my CM was diagnosed first, I was referred to a neurosurgeon (from PAMF). He is young (just 3 years into practice), very nice, doesn't have much CM experience (or does surgery), couldn't answer many of my questions but told me that I would end up worse after surgery as it involves thalamus. As he himself is trained in Stanford, he referred me to Dr. Steinberg. I asked Dr. Steinberg why PAMF surgeon thinks it is dangerous, and he confidently told me that because he is a junior doctor and doesn't do these surgeries. So, I didn't pursue it.

Point is, an expert surgeon might tempt to look at a difficult location as "technical challenge or simple for their skill level" and overlook patient welfare (not purposefully). So, when we take multiple opinions, it's important not to overlook any red flags even though they are raised by somewhat amateur surgeons. Also,
patient experiences are far more important than what doctor tells you as they don't have exact idea about how life is affected by deficits .
coolbreeze_ca
 
Posts: 39
Joined: Tue Oct 11, 2011 4:42 pm

Re: Recovery after CM surgery

Postby Libby » Thu Apr 12, 2012 6:50 pm

Well said, coolbreeze. I totally agree.
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.
User avatar
Libby
 
Posts: 571
Joined: Sat Sep 25, 2010 3:08 pm

Re: Recovery after CM surgery

Postby ChrisR » Wed Apr 25, 2012 3:25 am

Hi coolbreeze_ca,

I don't post here often--just read a lot. But I did want to chime in.
First I want to say that I totally understand your remorse. My wife had surgery for what she was told was one brainstem CM by the go-to guy for brainstem CMs. She was warned by another surgeon that it was likely multiple CMs and not worth resecting after only one bleed. We went with the aggressive surgeon and it now looks like the thing may have grown back or wasn't fully resected. I'm worried all the time that we damaged the integrity of the lesion/made it harder to remove/put her in greater danger in addition to the few deficits (minor compared to yours) that the surgery caused. There's a lot of room for remorse.

However, we don't spend much time worrying if the surgery "was worth it." The answer is unknowable no matter how you feel today. If I recall correctly, a certain catcher for the BoSox had a minor bleed and before getting surgerized had another, much larger bleed that left him in bad shape. Maybe you caught the lesion right before a devastating event--there's just no way to know. And if the surgery was successful in completely removing the lesion than you have the gift of looking forward to improvement every day, whether that healing is physical or mental. Those of us with lesions in tact worry about getting worse all the time, and believe me it can be its own form of disability.

Do take advice from the membership here about therapy. The brain heals slowly, but it does heal. Not only that, it finds different pathways for navigating old tasks. This may take even longer. Therapy can push this process along faster, and you may look back one day and think, "wow, I can't believe how bad it was and how great I am now in comparison." I read quotes like that on here all the time.

Finally, this is not a push for or against surgery. But be fair and honest with yourself. Feeling really upset and angry is understandable, healthy, and therapeutic--to a degree. Just keep in mind that your current condition has nothing to do with your powers of reason or decisions that you made. You are not one of the greatest neurosurgeons in the world--your doctor is. He gave you advice and you took it. That's perfectly reasonable and the absolute best thing you could have done. Not because it turned out better or worse than the alternative (there's no way to know that), but because it was what you felt was right and you went through with it! Engineers don't make cerebral vascular treatment recommendations; neurosurgeons do. The neurosurgeon you picked is one of the best, working off of years worth of rigorous studies, practical experience, and a very impressive track record. I have 4 (four!) surgeons I consult with whenever we have an issue, and everyone has the highest praise for Dr. Steinberg. It wasn't blind trust you were going on, it was sound reasoning (no matter the outcome). My point is not that Steinberg did a good or bad job, or that you made the right or wrong decision, but that we do our very best to control for as many things as we can because the stakes are so high--and then at some point we have to let go and roll the dice. You know how surgery turned out; you have no idea how conservative management might have turned out. Maybe you're alive right now because of Steinberg, maybe you're unnecessarily disabled. You can't know for sure. But you can take heart knowing you made a perfectly reasonable and brave decision, and now have the tools for moving forward--even though it will be a challenge.

I have nothing but the most sincere empathy for your condition. I really do wish you the best. Dealing with this condition is hard enough on its own. Add personal life, work, and even citizenship and it becomes a total nightmare. I just want to offer some thoughts on regret, and maybe suggest thinking forward rather than backward if you can.

Very best
ChrisR
 
Posts: 151
Joined: Fri Jul 22, 2011 12:44 am

Re: Recovery after CM surgery

Postby coolbreeze_ca » Wed Apr 25, 2012 10:24 am

ChristR, thanks for your wishes and encouragement for my recovery.

Am not questioning Dr. Steinberg's authority. This might be applicable to other expert surgeons
as well. As an experienced surgeon, it is IMPORTANT (and their duty) to give very realistic idea about risks
involved, probability of deficits (temporary or permanent), ballpark timeframe for rehabilitation and healing
before giving surgery recommendation. They are in a position to give it as they have seen many such cases.
(I was asked to fill very generic consent form which didn't give any specific info)

I am extremely upset as he did not give any idea about risks (e.g if CM is in thalamus, I am bound to loose sensation.) and gave a very positive prognosis. Also, am in a very difficult personal situation and have very limited support. I only had minor symptoms and I certainly would have preferred to postpone surgery by a few years, had I known about recovery.
coolbreeze_ca
 
Posts: 39
Joined: Tue Oct 11, 2011 4:42 pm

Re: Recovery after CM surgery

Postby ChrisR » Wed Apr 25, 2012 12:19 pm

I completely understand your point. Surgeons do seem to withhold information if they think it will bias the patient against an operation that they believe to be necessary. My wife's father had surgery/radiation/chemo for cancer and he was very miserable during the months of procedure--claims to this day he would never do it again and wishes they had told him how miserable it would be before he signed up. He lost the ability to sing (one of his favorite pastimes) for 5 years.

I, on the other hand, am really happy he went through it because he made it to our wedding as a result.

Similarly, our surgeon downplayed the severity of the "slight temporary deficits" following brain surgery. They weren't slight and lasted longer than we were comfortable with. It is angering and I understand why you feel the way you do.

My point was more about your second claim, that "I certainly would have preferred to postpone surgery by a few years, had I known about recovery." I absolutely understand why you feel this way, why you want to go back to the state of things before the operation. I'm only suggesting that it might be more helpful to look forward to recovery rather than backward to decisions already made. You are assuming that if you had waited you would have had years to prepare for (or even avoid) an operation, and lived your life normally. But you must realize that this was not guaranteed. You could have had a devastating bleed just a month after your scheduled surgery, leaving you worse off than you are now. There's just no way to know.

I don't write this to disagree with you--in fact, I feel many of the same things you do. But to say that with all the other concerns, emotions, and challenges you have on your plate, regret is a lot to add and involves an impossible guessing game of "best case scenarios."
ChrisR
 
Posts: 151
Joined: Fri Jul 22, 2011 12:44 am

Re: Recovery after CM surgery

Postby coolbreeze_ca » Wed Apr 25, 2012 6:55 pm

ChrisR, I understand your concern.

As you say, there is no way to know. However, there are examples of thalamic CM people (Libby and Debi) who have managed it conservatively as their doctors advised against surgery and they are better off. I said, I would have preferred to postpone surgery based on that.

Thalamic CM surgery doesn't have a good track record. I have not come across a single case that fully recovered to the baseline. I asked Dr. Steinberg about it in the first follow up. Why Dr. Steinberg would recommend surgery with the pretext of "improvement" especially when my symptoms were minor is beyond me. Only I could reason out is, he was super confident about it and overlooked risks (not purposefully).

Unfortunately, my strong conscious doesn't allow me to pretend that it was a right thing just because it happened.
coolbreeze_ca
 
Posts: 39
Joined: Tue Oct 11, 2011 4:42 pm

Previous

Return to Questions and Information About Cavernous Angioma

Who is online

Users browsing this forum: No registered users and 1 guest

cron