It's not going to get any easier to post here, so I might as well take the time now.
That sounds upbeat, huh?
Sadly, problems with sitting at the computer are amping up. My neck and head-pain flares up and my hands and fingers ache from typing. The brain gets tired and soon after, I'm headed for a nap.
Yet, I think each day of things I want to write here.
It has been a tough week for me concerning news of my surgeons in NY.
All "Chiari-type" patients reading this will know what I mean. Others, my family and friends, may not know.
Last week, news began making the rounds on the internet that the two main TCI surgeons, Dr. Milhorat and Dr. Bolognese, had not shown up to do surgery on a patient who was already in the OR, anesthetized and head shaved, etc.
This event is simply not being reported the way it happened, not the full story. News reports that have been picked up by Fox News, MSNBC, CNN, NY Times and others, have all been very one-sided.
The result of the hospital-OR event was that North Shore Hospital suspended these two surgeons from surgical privileges at the hospital for two weeks. That began April 17.
After two weeks, the suspension was extended.
This explains why my April 28 surgery was postponed.
Alot of the back-story seems to point to political and personal issues. And much of it is second-hand knowledge and speculation. Biased quotes from disgruntled patients are used in these articles which all combine to paint a false picture of evil, rich and heartless doctors.
As an ex-reporter and journalist, I have to think the reporter from The NY Daily News must be receiving her pay by the word, as she posts new articles once or twice a day, on this topic. If you happen to find these articles, please read below where readers are posting their comments. Overwhelmingly, the comments are blushingly positive for TCI and Drs. Milhorat and Bolognese.
I know Dr. Bolognese much better than I know Dr. Milhorat. I saw Dr. M only briefly during my Invasive Cervical Traction, where he found what no other doctors had recognized up to that time: that besides the 4-place C1 fracture, I had also suffered at the time of injury "dislocation of the occipital condyles" (my skull had broken free from the spine and slid forward and downward, eventually fusing itself into that "wrong" spot).
So, I will mainly speak for Dr. B, his integrity, his compassion for his patients, his expertise.
He honors his patients like no other doctor I have seen, anywhere, anytime. He treats us with dignity and respect and doesn't talk "down" to us as all other neurosurgeons seem to do. He knows we have pain, he knows we have reasons for our pain, he wants to find the reasons and offer hope, if hope is possible.
I help moderate a large, international, online support group (www.chiariconnectioninternational.com). I have been moderating there for two years. I have mentored and helped advocate for many chiari patients, and others with related conditions. And I can say without a shadow of a doubt that I know hundreds of TCI patients who say that Dr. Bolognese has saved their lives, or those of their children. Dr. B gave us hope, respect, and erased feelings of helplessness. He replaced despair, rejection, self-doubting with love and medical knowledge.
As of right now, Dr. B is still under suspension by the hospital. Dr. Milhorat gave notice of his retirement two days after the news broke last week. The papers say he has been considering retirement for a long time, and the hospital has been searching for a replacement.
How does this all affect me? Well, I don't want to come across self-centered here, since there are thousands of patients affected by this. However, perhaps my situation can serve as an example of the mental suffering going on right now across the world with the fate and future of a beloved doctor held in limbo.
My surgery was rescheduled for June 4. That is almost two weeks away. I am having my doubts that the surgery will now take place. Ever.
There is no other doctor I will trust with my skull-base area. I have worked with Dr. B for 3.5 years to get to this point. My trust and faith are in him.
So, if I go without the cranio-cervical fusion, what does this do to me, physically? I have cranial settling, and this never gets better without stabilizing hardware and fusion fixation. My neurological situation only gets worse.
The skull is very heavy. They say it weighs on average 25 lbs. This weight does not get lighter, and for me, the spine holding it up does not get stronger. Everything keeps progressing, keeps settling.
The CTO vest is somewhat supportive, to keep the head from going sideways and forth and back. But it doesn't lift up and decompress nerves that are impinged by the collapsing of bones.
I foresee a lifetime left in a halo brace. Unless God intervenes and I am healed, or I get this fixation surgery.
All the things I'd hoped to be able to do, including going shopping, driving again, visiting my aging mother, seeing my son in his home with his wife, it will all not come about.
And I am one of legion. So many people are suffering, and so many are watching their children suffer. What about all the surgical patients who have no follow up, if this all "goes down" in a bad way? What happens to the dreams of other patients and the mothers and dads who dream of a normal, happy life for their kids due to surgical intervention by Dr. B?
We NEED Dr. Bolognese! And I am praying that God will intercede on his behalf. And on behalf of all the suffering patients who have nowhere else to go. For TCI and Dr. B are the ones who take the tough cases, the complex cases that other docs turn away. Dr. B is the last option. And without him, the future is very bleak.
I will not argue here, at least not yet, the defenses for these doctors and what happened. I do not know all the facts. But I do know that money is the greatest motivator. Other neurosurgeons who do not get the patients who go to TCI can be motivated by the money they personally have lost. They can be motivated by egos, and not liking these super-specialists because of their fame or their cutting-edge techniques that lead to medical discoveries.
One thing we can be sure of, when money is involved, the truth is usually less than easily seen.
Please pray for Dr. B today. Please pray for me, that my surgery with him will proceed on June 4. Also, my friend Charnel has her surgery set for May 19. Another e-friend has a surgery set for May 22. Another for in June. And so it goes. Please send up prayers for them all, and all the present and future patients of the kindest and most genuine doctor we've ever had the blessing to know!
I'll keep you posted.
