Friday, December 4, 2009

Uh oh. I wasn't expecting this.

A possible wrench in the works. I think you'll recall yesterday's note regarding the Neurology department. . .

Then I went back and sat down with Dr. Raab again. We discussed a very interesting subject together with Dr. Thalheimer. In the past the hospital treated a few patients with severe debilitating MS with stem cell transplant. Apparently the Neurology department was not included in the previous process and they got pissed-off about it. Now the neurology department wants in on any process where a stem cell transplant is considered for a neurological condition, such as myself. So Friday at 10:30am I have to meet with the neurologist to discuss this. I already know what's going to happen. . . . . same as my own neurologist, no neurologist that I am aware of would support a risky stem cell transplant for MS. This is closed-minded thinking and it will take several more years to change the attitude of the general neurological community to support doing this procedure for MS. So I will do my best to try to educate the neurologist (Dr. Storch-Hagenlocher) that this is the right thing to do. I feel mentally well-prepared for the talk because I feel well educated and well-versed on the subject. I'll let you know in the next post how it went. If they have a problem with it, Dr. Thalheimer has graciously volunteered to discuss the issue with them.

But the most important thing. . . . Based upon my discussion with Raab and Thalheimer, I don't think the neurology department has the power to stop my treatment, even if they disagree with it. In Raab and Thalheimer's words. . . "It's your decision to have this treatment." God I hope that I will have the last word. I really appreciate Dr. Raab and Dr. Thalheimer's support!

So today I met for a few hours with Dr. Storch-Hagenlocher. She is exactly what I expected. Closed-minded and rigid-thinking as nearly all clinical neurologists are regarding this type of therapy for MS. The meeting started with it very clear that she was against any treatment of the stem cell type that is not fully approved and mainstream for MS. And although I figured that was the way she would be, I also come to find out that she can raise enough stink to derail my treatment. She hasn't thrown the wrench into the gears yet, but she's holding the wrench over the gears.

I quickly came to realize that reasoning with her about the clear scientifically established benefits of this procedure was getting nowhere. She was having nothing to do with it and considers this an entirely experimental procedure, of which I disagreed. It's not "entirely" experimental. Clinical benefit is not only demonstrated, it is "consistent." That is a scientific Gold standard. So then I had to be somewhat more forceful in my approach. The remainder of the meeting was not hostile, but it was somewhat terse.

So I had to make clear about my personal considerations for the procedure. . .

- This procedure has 80% probability of positive outcome (for my SPMS)

- I fully understand the risks, and find it acceptable for me, personally

- I am definitely going to do this to save my future quality of life for me and my family

- Then I hit her with the Zinger. . . . "If you refuse for me to get this treatment in a advanced clinical environment here in Heidelberg, then I'm just going to go somewhere else to get it, like India." Her eyebrows bounced up on that one. "So if you refuse me the best care in scientifically advanced Germany and then force me to go somewhere that 'might' have inferior care, how does that help me? All you're doing is putting me at greater risk of complications or death with your refusal. Is that what doctors are supposed to do?"

(Important note to all my Indian friends. . . This comment was made for effect only. My backup plan has always been to seek treatment in India, if necessary.)

So I think this last one must have made some distinct impression on her. Her position now is that she wants me to have an MRI scan (her assistant is trying to set it up for Monday - waiting for the call right now). Once the MRI scan result is in then she wants to sit down and discuss it with Dr. Thalheimer. I beleive the MRI requirement is her way of making a CYA move. I really don't care, so long as the treatment goes forward.

Following the discussion Dr. Storch did a physical exam on me. Pretty damn obvious from her exam that I have clinically evident MS.

And I know for a fact that Dr. Thalheimer is on my side. I just sent him the following e-mail:

From: "George Goss"
To: "MarkusThalheimer"

Hi Dr. Thalheimer,

Today I met with the neurologist, Dr. Storch. It was not an easy meeting. At the begining of the meeting she was 100% against the SCT, just the same as every other neurologist in the world is going to think the same way. It is not possible for Dr. Storch to have a wide-open mind regarding this efficacious procedure (as you and Dr. Raab understand that this can be a very successful procedure). However, as Dr. Storch and I discussed over time I think she realizes that I am going to have the procedure no matter what, even if I have to go to India to get it (but of course I prefer here in Heidelberg now).

So in the end I agreed to get an MRI (which I'm sure will verify my MS condition) and when the results are in she would like to discuss this with you. So now she seems not 100% against it, but it is necessary that we satisfy her demands.

The way that I am thinking about this is that I am happy to provide Dr. Storch whatever she wants, but I don't want it to change the schedule that we have already set. She understands that I am serious, knowledgeable and 100% committed to doing the procedure, no matter what. Perhaps after the MRI when you discuss with her it may be possible to move past this.

I hope to get an MRI scan on Monday. Her assistant is trying to arrange the schedule.

By the way. . . as I was discussing the schedule with her I told her that I had already started the Neupogen. She was very surprised (maybe shocked) to hear that and asked who authorized that. My response to her was "not to blame Dr. Thalheimer or Dr. Raab because I pushed to start this now. She can blame me 100% for this because I am the only one responsible."

Thanks so much for your help, Dr. Thalheimer! I'm really hoping we can keep this treatment on track. Otherwise my whole life is going to be turned upside-down.

Best regards,

- George

The last thing Dr. Storch said that gave me some positive indication that this all might work out OK is that she said to proceed with the schedule for Neupogen mobilization and apheresis procedure. Looks like her mind is now somewhat open. My objective with the MRI is to get her to stop holding the wrench over the gears. I'll let you know what happens next.

For now. . . next Neupogen injection this evening. No bone pain yet, but probably coming soon.

And BTW. . . after taking the prednisone this morning, I feel 'awake.' Otherwise I don't feel any different (yet).

Please keep your fingers crossed for me. I appreciate it!

- George

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