Rear ended by a drunk driver then effed in the rear by the medical system.
November 20, 2009 10:09 AM   Subscribe

Bone graft gone wrong. Testicle swollen, major pain, difficulty walking, Doctors not helping. Need advice.

I am trying to get some information for a friend. Below is as much info as I have. Any help would be appreciated.

Jan 2003
My friend Kin was stopped at a light in Philadelphia, PA when he was hit from behind. The drunk who hit him had 9 prior DUI’s. Not surprisingly, he carried no insurance, had no registration or license. He was driving with stolen plates.

Kin was treated by a Dr. K at a hospital and diagnosed with a sever neck issue (don’t know exact diagnosis). He was told surgery would not help his condition. He was in severe pain. The Dr recommend a Morphine pump to help manage the pain. Kin begged the dr to “go back in” and fix the issue. The Dr refused. 

2004: Eventually, Dr. K referred Kin to Dr. F for a Discgram. Dr. F decided surgery would be beneficial and recommended replacing two vertebrates (C5, C6) with titanium.

While awaiting surgery, Kin worked with pain management specialists. They prescribed Oxycontin (20mg then increased to 60mg). Here is where Kin began his addiction to Oxicontin. 

Aug 2005: Dr. B from a Philly hospital performed surgery. Disc was replaced with piece of titanium that was to fuse. After the procedure, Kin’s condition worsened. For the next 18 months Kin repeatedly told the Dr B he was not right – could feel pieces of titanium move. Pain increased significantly. Kin was now taking 6 or so Percocets daily to manage after weaning himself off Oxycontin.

September 2007: Kin was referred to Dr. G (orthepedic surgeon at HHS in New York). Dr. G immediately recommended surgery. He suggested removing the titanium vertebrates and replacing with bone (with from a bone graft from Kin’s hip) . Kin agreed.

After the procedure, The Dr. G said the screws securing the titanium vertebrates (from the original surgery) we so loose, he was able to take them out by hand. Thats what was causing Kins pain – loose screws! Dr. said his neck should heal well and he should experience a vast reduction in pain.

Over the coming months, Kins neck felt 90% better. Occasional flare ups but nothing compared to what it was. Kin was ecstatic, he was fixed. – so he thought.

Prior to the neck surgery, they removed a piece of bone from his hip to use as the material to replace titanium vertebrates. Kins hip was not healing. He was back in severe pain. The Dr said it would take time to heal. Kin waited. He was now back up to 6-8 Percocets daily.

By Feb 2008 pain was so severe, Kin had trouble walking and was taking copious amounts of Percocet to function. His testicles swelled. He reported everything to Dr. G. Numerous tests were done: MRIs, bone scans, cat scans, and xrays. No Diagnosis or prognosis was given.

Kin moved to CA – he needed better weather. Every cloudy day in Philly amped up the pain in his hip (his neck was now a non-issue). 
Even though he alerted his insurance company he was going to move, they waited until he was moved in to tell him they would not cover him in CA. Disability insurance dropped him as well b/c they secretly video taped him directing the moving truck into his driveway.

Kin repeatedly contacted Dr. G to tell him about the incredible pain in his hip. He was getting very limited attention. He was falling thru the cracks. They finally referred him to a Dr in CA (a 5 hour drive – and he needed to go back twice). The Dr saw Kin, took various MRI’s CAT’s and other tests and then NEVER SPOKE TO Kin AGAIN!. The Drs Assistant simply told Kin they could not help him.

June 2009: Eventually, HHS agreed to see Kin again, Kin flew to NY for 8 days of pre-arranged tests and procedures. Once there, they totally changed the itinerary they had agreed to. They sent Kin for a RFD(S) treatment. A Dr W did this non-surgical procedure. After, Kins pain amped up 20 fold. Again, they said to give it time. That was over a 4 months ago. The pain has not subsided. He is up to 12-15 Percocets a day. He has gone to the local emergency room in CA for help. They were astonished at the films of his hip– a large arrowhead shaped growth with spurs on the bone. It seems like the bone and nerve grew back in such a way as to cause the pain. They said they had no one at their hospital who can help him.

These days he has limited contact with HSS, they rarely return his calls/emails. In the last call, they advised him to go off Perocet and to try Subutex, which he is trying. And they also advise him to get a dorsal column stimulator (installed in his body) to help mitigate the pain, he will not. There is no longer any discussion on how to heal Kin, only how to manage the pain. When Kin asked if there was a way to kill the nerve, they said that’s what they tried with the RFD(S) procedure and it did not work.

Kin has ballooned up to about 250 pounds. His blood pressure is way high.  Although I have been very concerned and distantly involved over the 4 years this has been going on, I am now more concerned than ever, As the hope of getting fixed gets more and more remote, Kin is spiraling into a very dark place. 

So I am looking for any recommendations, referrals, advice on what Kin can do.
> Has anyone experienced this kind of bone/nerve issue?
> are the any Dr’s or programs that are specialists in this field (west coast)?
> Does anybody know of a service that can function as a health advocate?
> What about this dorsal column stimulator? What are the real percentage of people who have significant pain reduction?
> malpractice suit? know any lawyers in NY?
posted by pmaxwell to Health & Fitness (8 answers total) 1 user marked this as a favorite
Mod note: Name of driver removed. Do not use askme for vengence/google-bombing.
posted by cortex (staff) at 10:23 AM on November 20, 2009 [1 favorite]

talking to a lawyer sure couldn't make things any worse...
posted by jrishel at 12:10 PM on November 20, 2009

Better do it soon, though; statute of limitations may kick in.
posted by Chocolate Pickle at 12:23 PM on November 20, 2009

When these doctors say that there is no one who can help him -- that is, that there is no fix -- they are in all likelihood telling the truth. The reason your friend no longer hears from the hospitals is probably because there is nothing more for them to say.

I know this is a potentially unhelpful answer, and not directed specifically to your questions, but based on the consistency of the opinions your friend has recieved from a number of doctors it sounds as though letting go of "the hope of getting fixed" and focusing on what can be done to manage his chronic pain over the long term will have to be the way forward.

IANAD and IANAL. I suppose there might be some nugget of malpractice in the details of your friend's unfortunate medical history, but if so it's not apparent here. Not everything can be cured, and not everything that is not cured plays out that way because of negligence. Legalities aside, moving forward means accepting that you cannot change the past and turning your efforts to making the best future you can for yourself. This might mean a dorsal column stimulator (or not), but it sounds like it will certainly mean some kind of counselling as well as care from a chronic pain specialist.
posted by onshi at 1:43 PM on November 20, 2009

I am totally not a doctor and I have no experience with this. But when you said that there was a large arrowhead shaped growth on his hip with spurs, I'm wondering why they can't do anything about that. I don't know where on the hip this is, but is hip replacement surgery an option? Can they not shave down the spurs (like you would treat bone spurs in other areas?) Could this be related to (or actually) hip osteonecrosis (death of hip bone related to impaired blood flow.

I'm just thinking of questions...these may have already been addressed by physicians. I'm sorry your friend is going through this. I hope he finds relief!
posted by MultiFaceted at 2:23 PM on November 20, 2009

Call the Steadman Clinic in Colorado and see if you can set up an appointment, they are probably the best ortho docs in the US. They are also one of the only places that take on these kinds of cases and see a lot of people who've had multiple failed surgeries or surgical complications that the original surgeon has refused to deal with. AS your friend has discovered, most surgeons won't even touch another doctors screwup, I've been there, done that and it is very hard to deal with people refusing to help you when you know they can.

If he can't make it to Colorado (and I really recommend that he does) there are Steadman trained physicians in CA, you can call them and discuss your condition and they'll recommend someone. They are great.

And he really needs a lawyer. He'll probably have to meet with a bunch to find one with the expertise on staff or retainer to take on the case.
posted by fshgrl at 7:55 PM on November 20, 2009

I would definitely not jump straight to lawyering up. Your friend has a limited amount of energy, and can choose to focus that energy on exacting some kind of retribution -- from whom, I don't know, given the multiple villians in this story -- or on getting himself better. The story as it is told above raises a few red flags for me; your friend is relating a series of wrongs that were done to him, the doctors involved were actively malicious or apathetic, I just get a sense that there's more to this than I'm hearing here.

I would say that your friend should go to one more MD and get a neutral opinion. Your friend should bring as much documentation as he can of everything that has happened, and provide his history in as factual a way as possible. Like, "here's what happened, how do I get better" not "here's what happened, now who's at fault and how did they screw up and how can I make them pay."

Then, if that MD also says that there is nothing that can be done surgically to correct the problem, your friend should start looking into chronic pain specialists. This does not mean that your friend is doomed to live with this pain forever. This just means that chronic pain with a cause that is not related to something that is actively going wrong physically is a very different animal from acute pain, and needs a different kind of treatment.

The story as told above sounds totally heartbreaking and like a horrible ordeal for anyone to go through. And I think that your friend's energy is better spent letting go of the idea of retribution, acknowledging where he is at right now, today, and finding himself a path toward healing. A good chronic pain specialist is not only going to get your friend's pain medication under control, but is also going to get your friend some other tools to help manage this pain.

Also, if he is "spiraling into a dark place," he definitely needs to be seeing a therapist. He's been through a lot, and probably needs some help processing everything. A good therapist might also be able to help him work out some solutions to the thick tangle of problems that he has going on right now.
posted by jennyjenny at 10:21 AM on November 21, 2009

Who prescribes his pain meds? For the chronic pain, he should see the best pain management-certified psychiatrist in his town. Ideally, he should see one who specializes in prescribing medications and one who does pain management training (deep breathing, relaxation techniques, etc.). The latter do not make pain disappear magically but it gives one a sense of control that he probably feels like he lost a long time ago.

Narcotics do not work well for chronic pain, especially pain with a neurological element. The amount of narcotics he is taking appears significant considering social stigma and the number of pills he takes a day. However for someone with pain levels like you describe, the amount doesn't sound shockingly large if he is substituting Percocet for Oxycontin and not taking them together. Even if he were taking both Percocet and Oxycontin, the amount would not surprise a pain management psychiatrist.

I'm not a doctor but I have lived with chronic pain for a long time. I've done so navigating the horror that is Philadelphia's "esteemed" medical establishment. When I had given up hope and considered going out of state for treatment, I found a practice that could help me. It took several years and several tries to find it. Unless he's living in the middle of nowhere, I'd urge him to persevere and find specialists close to home, at least in-state.

A thought sparked by a comment above... his attitude or presentation of his condition might be scaring doctors off. If it were me, I'd limit my "pitch" to the specialist to his present hip problem and leave out all the background. The more dispassionately he describes his current complaint, the more positive a response he might get from specialists. If the neck or car accident are no longer issues, it's best to leave them out because a skittish doctor will think malpractice or lawsuit looming in the background. In my experience in Philly, the elite specialists make it clear they won't take on cases if one is involved in, or hints at, litigation.

I do not mean to insinuate he isn't "doing it right" when he seeks a doctor. I've been there, and I know how incredibly hard it is to maintain composure or keep the story short when one is in pain and angry. Moreover, every time I see a new specialist I feel as if I'm auditioning or trying to sell the specialist on my complicated case.

These are just my impressions, having dealt with back and head pain and specialists of various dispositions and skill levels.
posted by vincele at 1:24 PM on November 21, 2009

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