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Friday, February 8, 2013

I have done all I can do, and this is the best I can do."

I saw this title on a site I go to now and again.   The site was about business, the question put to the group: "How do you handle this?"

Immediately my thoughts turned  not to business but to various consulting rooms, various doctors.

"How do you handle the words, "I have done all I can do, and this is the best I can do.""

I have had a number of doctors say this to me.

The reaction is a combination of anger, despair, frustration, more.

What am I supposed to do now?  Is he saying this because he is too frustrated with not being able to help me?  Is he just being lazy, uncreative?  If he gives up on me where else can I turn?

I am not a Pollyanna.  I tend towards the pessimistic rather then optimistic. 

But I have to tell you this story:

The neurosurgeon who put in my implant also took it out when I developed an (unrelated to the implant) infection.  The implant had taken away approximately 85% of my pain.  Losing it was a monunmental loss.

He agreed to do a second about six months later.  That one did not work at all.  It turned out not to matter, because I also lost that one to an infection.  (Also unrelated to the implant.) 

I waited a few months and then asked the main, the only question.  "When will you put it in again?"  It was hard to let go of the memory of the fantastic, and somewhat unexpected, benefit of the first one.   The lack of help from the second did not diminish my enthusiasm, the sure knowledge I would be helped again as soon as the next one was placed. 

"I can't put in another one."  "What!"  That was never a thought in my mind.  Saying "No." had never occurred to me.

"You have been operated on too many times in the same area.  There is too much scar tissue.  It's  impossible."

No.  No!  What was I going to do now?

Before the implant I had no hope.  I agreed to it in the first place because there was nothing left for them to do.  I had honestly never expected it to work and then, when it did, I never ever wanted to have it removed.  (In fact I argued about it, insisted, "You can't take this out, I don't agree to it!" even when the infection made it a medical necessity (and I essentially became choiceless.)

"I have done all I can and there is nothing left I can do."  I was without the implant.  I knew what he said was probably true, between the 2 implants, two removals of the implant and a surgery in the same place years before when they tried to cut the root of the trigeminal nerve, how could there not be a massive amount of tissue in the way?  Nevertheless the implant was all the hope I had left.  It had been tried as a last resort: all other surgeries (available at the time) had been tried, all the therapies, all of the meds they could think of.

Ti say I was bereft would be a gigantic understatement.  Nothing keft. How am I going to deal with this.  Doctors had told me, years before, that 'rational suicide' was acceptable in my case.  I had gotten past that point.  Was that all I had left?

Dr. Barolat cared about me and had worked as hard as he could to help.  He had done all he could do, it was truly the best he could do.  There was nothing left to try.   That's it.

No.  It was not.

Dr. Barolat came to me one day and said "I have an idea."  It would be another implant but placed on the covering of my brain.  It would be 100% experimental.  I would be the 13th person in the world to have it.  I did not have to think long and hard about it.  Experimental or not, there was nothing left for me.

The implant worked.  Not to the same degree.  In fact I was not sure it was helping until I had to turn it off a few months ago.  But it helped enough to make a good difference.  (And I have turned it back on and am waiting for it to kick in again.)

Just because they tell you "I have done all that I can do, there is nothing else." it may still be too soon to give up, to accept the "No.".

What have your experiences been?  Have you been told "No." only to find out there are still "yesses" to be had?


  1. Not sure if my previous posts went through. I am 24yo. Was diagnosed with lupus and crohns disease when I was 11. I have been on ev pain med available and recently was put on a new pain protocol. I now have a butrans patch and injections of buprenorphrine for breakthrough pain. I went from pain being a 7-8 to now being 0-3. This has been a miracle and although it ia very expensive I had to go through an approval process with my insurance but thia has been a miracle. My life has revolved around drs medicine and pain. I am in fact in the hospital right now awaiting results from a bone marrow aspiration due to having whacky counts. I am lonely scared and far from home now. If anyone would like to contact me just to say hello new friends are welcome this has been a hard lonely stay. Feel free to email me at

    Ty evone for listening.

  2. Hi Katie,
    I am so sorry you have been going through this, and for so very long.
    It is wonderful that your pain has gotten down to that level of 0-3,
    It is my fervant wish that you have good results from this testiig and it is not too hard on you.
    I have been in the hospital, many years ago when I was having a lot of surgery to deal with the pain, in California although I lived then in NYC so I know the lonliness and feeling scared.
    My thoughts and prayers are with you and please let me know how you are faring.
    I don;t get to this page everyday but I will try and check in when I can.
    Many hugs to you. Katie