Day 48 - Just Like Starting Over

Today is supposed to be a nice day and we are 75% of the way through the second course of antibiotics so I'm hoping we can wash her hair again. With any luck, the dizziness will be subsiding and the next 33 days will be smoothly haloing.

We are supposed to join some folks from work for a meal out tonight but this morning is turning out to be a bad stomach day. Nothing but toast with her medication this morning. She usually feels better by lunchtime but it totally saps her morning. Right now she is trying to do some homework for her online class while her belly gurgles.

Friday was an even rougher day for Jan. She wasn't feeling any better after the tightening and said it felt just like she's starting over with the halo. The dull, aching pain of bolts pressed into your skull can't be pleasant. Poor technique on the NP's part doesn't help any.

It also doesn't help that the antibiotic is causing her stomach problems. Just two and a half more days of antibiotics. The only bonus is the pins won't get infected as long as they are in her system.

I got her to eat a little cereal with milk along with her medication before I went to work for a while. I can do almost everything from home but there are many distractions here at home. I can't help but go check on her every hour or so and ask if she needs anything. Unfortunately, she's a light sleeper, the steps are wood and my shoes wake her up if I go down the stairs. I was hoping most of the day at work would let her rest undisturbed with the safety net of Tessa being home on a snow day.

The clinic finally called with an appointment. It is March 5th, 12:45 PM. I'd have preferred a bit earlier in the day but I'll take what I can get. We still haven't had any information on the local imaging appointment but we have another four weeks to get that setup. I will not let it slip away, trust me.

The patient advocate lady called back, apparently because the radiology director stirred up a few folks. She said she had spoken to the NP and thought everything was fine. Jan told her she was complaining about the resident that put her in the halo. The NP is just a pain in the neck, literally. She's backing the resident 100% with her refusal to even attempt any comfort measures.

The attending or whatever who was allegedly supervising the resident is supposed to call me but nobody has a date or a time. I give him until Monday evening before I decide he is useless.

Jan begged me to take the halo off of her again on Friday night. When the level of frustration is this high and the quality of care from the professionals is so low it almost seems viable to put the collar on her and take our chances. Bilkmore talks a good game of patient care and compassion but it has been sorely missing in every single encounter with anything neurosurgery related. I didn't start out this angry and frustrated. They started it with complete disregard for the human being inside the halo, starting at 2:00 AM on December 15th. From there it has been a defense of my wife's health and well being in the face of many obstacles, most erected by the very people that profess to be helping her.

Speaking of collars, I've still not heard anything on the bill where one of my questions was about them charging for two collars when we only received one. Incidentally, for those keeping tally, the Aspen collars can be bought online for between $50 to $60 while the hospital billed them at $110 EACH!

The good news is she only had one pain pill in the last five days and that was for the ride to Nashville with all the rough asphalt. She's been managing with Tylenol (acetaminophen) since Tuesday. She still asks for them but I try to get her to realize that narcotics aren't for everyday pain. If she asks twice, I'd give her one but I'd rather her think about it before habitually just popping one of the harder medications.

I absolutely will not allow the pins to be tightened again. If there is any evidence of bone regrowth and stabilization I will see that halo removed, voodoo witch or not. There is a point where healing is adequate and the diminishing returns of staying in the halo any longer add nothing to the outcome.

Day 46 - The Long Road to Bilkmore and Back

Jan had her second visit to the Bilkmore Neurosurgery Clinic today. This is a long one so get some coffee.

It snowed at least an inch on Wednesday in Bowling Green. Jan was fearful she would not be able to make the trip to Bilkmore if the roads were slick. I assured her the interstates would be top priority for both states. Our driveway melted off thoroughly without any help so I knew the interstates would be clear. We did not have any trouble reaching Bilkmore. The problems always start AFTER we arrive.

The double whammy of sinus infection and antibiotics had upset her stomach more than on Tuesday. She didn't eat much on Wednesday and I was concerned about her. She still wasn't very hungry this morning and was afraid to eat much before traveling. All I could get down her was some toast and jello. We did manage to get her hair washed without being dizzy which alleviated a lot of her anxiety. She was worried but we got through it. After the visit she was hungry and we got a Wendy's burger. So far, so good!

I gave her a pain pill, the first in three days, before the trip to Nashville. They tightened the pins and I'm sure she'll need a valium soon. I've come to the conclusion that the pins, once tightened on Jan 5th, shifted the entire halo around her head up by about a quarter inch. All of the pins have an opening below them. Yet again Dr Sloppy has demonstrated his lack of experience by doing a poor job of selecting sites! This may be accepted medical treatment but it is barbaric.

Jan says it feels like the halo gained a few pounds after tightening. When they tightened it, she could hear the bolts crack when the torque wrench reached the torque value. I can only imagine what if feels like and I don't think I'd like to experience it.

My sister, the nurse, told me about filing a complaint with the state medical board against Dr Sloppy. I found the form at the TN Medical Board website and am filling it out. It probably won't do any good but I'm going to put it down on paper. It is the least I can do to repay him for all the lovely work he did on my wife. His dedication and attention to detail... OK, you can see right through my sarcasm, can't you?

This picture was of the whiteboard in the exam room. The people that schedule these things told us to get there a half-hour early to get the x-ray. I knew they were lying because I could hear them speaking! We arrived at 11:18AM, were signed in and all paperwork filled out by 11:21AM (they documented it as that time) and then we had to wait 20 minutes for the shuttle. They sent us to the main x-ray lab but they were backed up again and wanted us to go, literally, 300 yards down the hall to the other x-ray lab. I went off on them!

A nice lady at that x-ray lab got Jan a wheelchair and even rolled her down with me trailing her coat and essential travel gear. She asked something about the x-ray and I let her know I'd never be back to Bilkmore once we were done. They had done nothing but jerk us around from the very first ER visit and I was not happy. After we reached the other lab she went and found a director and he had a little meeting with us.

We expressed our displeasure with the whole series of events and he said that was not the Bilkmore way. He agreed that 13 days was not very quick turn around for a call to a nurse. He said we should have heard back from the patient advocate since it had been a full month. He also said he would let the chief of neurosurgery know and there definitely would be something done. He stated this was a top priority with Bilkmore. I hope he is right and I'm going to be sending the medical board complaint in tomorrow's mail.

The following picture was on the wall of every exam room. Kind of ironic considering the difficulty we've had with everything Bilkmore. I do not believe we've had excellent care. I don't believe what Jan has experienced qualifies as adequate care. Guess what number I'll be calling once we get an appointment?



We finally arrived back at the clinic around 12:40PM and it was almost 1:00PM before the nurse practitioner arrived and she left almost immediately saying she had a meeting! She left us with an RN that had never tightened a halo and she acted intimidated by it. I was just about to tell her to stop when the NP returned and said the meeting would have to wait.

She told Jan the pins were tight but I watched her turn the first pin, the left front one nearly a full turn before it clicked. She started with that one the last time and turned it a half-turn then. That is not an indication that a single pin is loose. It is an indication that the first one tightened will always be the loosest one.

For instance, think of a bicycle wheel with spokes. If you only had four evenly distributed spokes and they are even the slightest bit loose, tightening only one to a specified value will make the others tighter and shift the hub, in this case Jan's head, from the center. No mechanical skills at all with these people! No wonder the pins are ripping the flesh.

Then, when she tightened the lock nut she didn't hold the pin while torquing the lock nut. If you do not hold the pin while tightening the lock nut the torque value is invalid. It will most likely be tighter due to additional torque on the lock nut. Very poor technique and bad assembly procedure. I'm way more precise with my valve adjustments than they are with the human body! I kept my mouth shut for Jan's sake, despite my desire to scream.

The NP said the spine is still in alignment and we are doing a good job of keeping the pins clean. What's new? I'm angry and frustrated, not incompetent!

I let Jan do as much of the talking as she would and could. If there was resistance to Jan's wishes, I piped up with a more outrageous demand and made her seem quite reasonable. The NP/voodoo witch again said the vests never fit well and to just take it. Could she care any less? You know what? If you don't try to improve the fit I can guarantee it never will fit properly! How would you like to wear an off-the-rack suit not quite your size for three months without even attempting to tailor it?

Jan asked to have a CT scan done in Bowling Green on the next visit and the nurse started saying it wasn't time since this was only her second visit. I quickly informed her it was 7 weeks and she had previously said we could have had a scan on this visit if we wanted. I strongly (maybe loudly) voiced my opinion that we wanted a CT scan on the next visit and we wanted to get it in Bowling Green! All of a sudden the NP is afraid of subjecting Jan to too much radiation! Wow, what about the four full scans and two neck and two head scans she had on 12/14/2008 when Bilkmore could have used the scans from the Medical Center if radiation is a major concern? Sounds like she's using a straw man argument to me. She is going to get one less scan now than she would have previously.

She then started saying the accident was 12/14/2008 and she could not get a CT scan before 3/14/2009. I corrected her by telling her that 12 weeks is 84 days and three months is 90 days, a week longer. The NP sent the nurse after a calendar. Mind you I've calculated it out several times and have a reminder every Sunday of the week count. She was arguing with me but agreed once she used a calendar. Twelve weeks put it at 03/09/2009.

Jan turned upon the NP's sympathies to explain that we left at 10:00AM and it was now 1:30PM and would be closer to 3:00PM when we got home. Five hours for a "simple" office visit is a long time out of the house for a halo wearer. Surprisingly, she agreed after a brief refusal. I don't think they like working Mondays so she agreed to March 5th or 6th and we would need the scan on the previous day from Bowling Green. A week later than I hoped but not March 14th!

Then, the NP said she would be in a collar for six weeks and she could not take it off for anything but a shower and even then to not move her head. I've read literally a dozen accounts of people having this injury and wearing a halo. Some only wear a brace to strengthen the neck muscles and some don't wear one at all. Nobody I've read an account of has worn one for six weeks without removing it for anything but showers. The NP even said to use two, one for showers and another to change into after. You can be assured I will be diligent in getting the correct answer despite the NP's statements.

To top it off, she will NEVER see the actual neurosurgeon that is on her records. He isn't even in the same building!

If it isn't healed after 12 weeks, it isn't going to heal. My reading of studies shows that most people wear a halo for 8-12 weeks, depending on age and general health. Most CT scan studies show that most healing occurs between the fourth and eighth weeks with minimal additional healing occurring between the weeks 8-12.

Bones heal much like cuts. A scab forms to cover the damaged ends. Jan's break is deep into the cancellous bone. That's the soft spongy part that has all the blood supply. It is analogous to the flesh under your skin. The two sides of a fracture grow together much like your skin closes the gap in a wound. The cortical or hard bone covering is like the outer skin.

Right now and ever since the accident Jan has been getting a minimum of 100% of the daily recommended allowance of calcium and vitamin D. She hasn't had any NSAIDs because they reduce inflammation, which is the bodies reaction to an injury. Reducing the inflammation retards the bodies natural healing ability. Tylenol and narcotics do not have this effect.

I know, I read too much but when I feel I'm getting better information from the internet than from the person treating my wife, especially when I seem to be getting a consensus, I just do not trust the care she is getting.

Day 44 - Sleeping When You Can't Lay Down

With the sinus infection and the inner ear problems, Jan can't lay flat or the room spins so fast it makes her sick. The dizziness medication doesn't completely alleviate it so we can't wash her hair the usual way until that clears up. It may take 10 days for the antibiotic to resolve it. She did not have much of an appetite yesterday due to nausea but she did eat and take all her meds. She even ate some chicken and rice for supper.

Someone suggested shaving cream to wash her hair and then rinse it out with a damp washcloth. I'm going to be the guinea pig on this since I can always take a shower and if it makes hair fall out, at least I'm not wearing a halo and I can wear a cap! I'm waiting for my hair to dry to see if it looks nasty or just oily.

She is sticking her tongue out at me in this picture. She's been colder than usual, probably related to the infection although she never ran a fever. This is how we keep her warm at night.



The lift chair controls are under the blankets and I have another blanket draped over the halo to keep her head warm. There are also small heat packs you can't see on each side of her neck. Those muscles are always tight and always bothering her. The little TV tray to her left is where she keeps her cell phone, TV remote, a drink, extra medication and the gas logs remote if she gets too cold. She can't see any of it and has it laid out where she can find it by feel.

Despite the awkward sleeping arrangement, she slept pretty well last night on only one pain pill and one valium. That was the only pain pill all day! At least her stomach is settling down. She had bacon and waffles for breakfast and her blood sugar was only 96.

Anyone local to BG knows we got an ice storm overnight. Trees were down across the road and schools canceled. I just hope it all clears up by Thursday morning when Jan has her next appointment on day 46.

Day 43 - Complaint Letter

Late Addition:
Jan thinks the below is a little harsh but I have copies of the documents in question. If I have proof, it isn't being harsh, it is an opinion based on the previous six weeks of experience. Jan also asked me not to mail the letter until after her next appointment on Thursday.


After six weeks and only one visit, I finally printed out the complaint letter. I believe the nurse committed fraud when she filled out Jan's FMLA paperwork because it clearly states under Number of Visits: 10 outpatient visits. How can we get nine more visits in with her current 3-4 week appointments?

On my form for FMLA, she wrote "weekly visits to neurosurgeon radiographic studies, halo tightening, medication adjustment, skilled observation intermittent." I think she blatantly lied, to put it bluntly. She has never had any intention of seeing Jan weekly or even every other week.

The Patient Rights document they have up on their website is so much lip service. So many things were not adhered to on this document that it literally isn't worth the paper it would take to print it.

Note that the bottom of the middle column has this text. This had better be true because the level of care could not fall any lower short of refusal to continue treatment.

You and your family/guardian have the right to
express dissatisfaction regarding the quality of
care without jeopardizing future care.

Day 42 - Six Weeks and Counting

Six weeks today have elapsed since the accident. We are definitely at the halfway mark and maybe a bit beyond. It seems like only yesterday I was standing over my injured wife, her head bleeding and me still trying to get a cell phone signal to dial 911. Ten hours and two hospitals after that she was in the halo. Twenty hours after the accident we were home again from the south instead of from the north. Twenty hours and $36,000 in bills! Reality has set in.

Jan has a sinus infection and that is what is causing her to be dizzy upon laying down. We've got some antibiotics, again! The doctor also gave her a prescription for the dizziness so hopefully, she will be able to get her hair washed again soon.

We stopped at a bike store on Saturday to try and find some of the little mirrors they put on helmets to see behind them. It would have worked great but the mirror attachment is too narrow for the width of the halo. Just our luck. We might try the other bike shop in town to see what they have.

Warning: This picture may disturb some people. It is reduced in size to obscure the detail. Click on it for the full-size image.

I have an extra pin that was left in the bag the halo came in. I placed it in Jan's halo ring near one of the existing pins in her forehead. This may help to illustrate how this thing is anchored to her skull and the depth of penetration through the skin.



Notice that the entire spike portion is in her skull and one-third of the remaining unthreaded shank is in the skin. This is what we clean around at least twice a day at all four corners of her skull. You can see the indention in her forehead. Anyone think this is fun?