What a challenging, painful week this has been!

At the Tongren Hospital, most neurosurgery patients who participate in the Kunming Walking Program start standing balance practice about 15 days after surgery.  Dr. Zhu Hui has an interesting rationale for this fast-track protocol that I’ll cover in another post in the near future.

Yesterday was my 15th day since spinal surgery, so I went to the hospital to try to get back into the flow of the program. I managed to stand up successfully for 4 minutes without passing out  …  🙂

Standing 15 days after surgery (to left Dr. Zhu Hui)

Yes, after being in bed for a few weeks it takes a while to get back your balance.  At least I was able to stand up bearing 100% of my own weight without a binder or pressure stockings, so my blood pressure is holding up pretty well.

However, I ran into some unanticipated and very painful difficulties.

Unfortunately, the back-of-neck incision site of my surgery is still really painful, even though it looks to be healing fine.

How do you like the haircut?

I suppose this is understandable considering how many titanium rods and screws have been added to my spinal column!

Anyway, after I stood for the first time yesterday, I had such a severe reaction that it felt like I was breaking my neck again, so I had sit down right away and be taken back to a hospital bed to recuperate on my side for a couple of hours.

My Dad and I suspect that there’s still quite a lot of inflammation inside my neck, which has forced me back to bed at home for at least another few days or maybe as long as a week.  We’re sort of flying blind here, although my good friend Nu Jia from Guangzhou tells me she had pretty much the same experience after virtually identical surgery.

So the bottom line is that my Dad has me under house arrest right now, as I am unable to move my head freely left or right and almost any sort of exertion provokes severe pain.  But at least I have stopped taking painkillers for the time being, just relying on Acetephetamin to take the edge off.  We have both morphine sulfate and Tramadol in reserve, but I only want use them as a last resort.

When I first moved to China in March, the neuropathic pain was so severe that I got sort of addicted to painkillers … not the cleverest idea, of course, but in the circumstances they kept me from going completely out of my mind.

I must say I’m a little bored with bed rest, but I need to get these pain levels down before I seriously start the walking program again.

Every day in the afternoon I have Xiao Kong, one of my physical therapists, come over to the house in order to stretch me and work out my arms with weights.

Physical therapy aside, I have to say this is my favorite time of day because I have a lot of fun joking with 25-year-old Xiao Kong.  The Chinese are pretty reserved in their conversations, but Xiao Kong is such an adorable guy that you just want to eat him up like a cupcake!   So I mess with him a little bit, asking questions about his girlfriend, about what he does his free time, what kind of drinking games he plays, etc.

These topics are generally not talked about in public by the conservative Chinese, and I’ve never seen somebody’s face get so red so fast before!

 Xiao Kong working out Froggie and me!

Anyway, overall I’m sort of treading water right now, trying to be patient for the surgery inflammation to subside while still battling intermittent bouts of severe neuropathic pain.  I think the neuropathic pain comes as a sort of Dysreflexia response to the acute pain in my neck, but who knows?

(10th Blog Post by “Bert & I” on Behalf of Recovering Ali)

Ali continued to make progress on her 2nd day back home in Kunming.

“Bert & I” are pleased to report that this will be our final independent post, as Ali is able to sit up again and plans to take back her blog editor’s chair … maybe after a little nap.

Off-duty Blog Editor …

Overall, there is good news on most fronts, albeit with the proverbial ‘two steps forward –  one step back’ pattern.

Top of the steps-forward list is that Ali is now off all opiate-based pain medication and with seemingly minimal withdrawal symptoms.  Acute neck pain from the surgical wound continues to ease unless provoked by lower body muscle spasms, and she is finally getting adequate sleep.  Ali is sitting up again today in her wheelchair wearing a protective collar, but she sleeps without the collar.

Topping the steps-backward list are recurring bouts of agonizing pain, triggered by random spasms that seem to launch from her legs and throw her head back violently against neck brace + chair headrest .  Unfortunately, also, some percentage of Ali’s pre-surgery neuropathic pain remains, although overall the trend continues to look promising.

The strikingly strong spasms are occurring in the absence of the drug Baclofen, which Ali plans now to reintroduce at 50 mg daily until the surgery healing process is further along. Otherwise, Baclofen use in the Kunming rehabilitation program is strongly discouraged because of its adverse effect on muscle tone.

Ali has been instructed to perform a range of exercises each day while still recuperating from surgery, and a member of the Kunming Walking Programme rehab staff will be visiting daily at home to ensure she stays active with the prescribed routine.

To prevent formation of blood clots in her legs while spending to much time in bed, Ali is wearing three times daily for an hour what can only be described as giant, pulsating air boots that extend from the bottom of her feet all the way to her upper thighs. These hi-tech boots massage her legs in order to prevent deep venous thrombosis, as recent analysis of her blood has revealed that she is more prone than average to clotting.

Happily, Chinese physicians as well as nurses still perform house calls!  Friday, for example, Ali’s first full day back home, one of her surgeons and two nurses (one of whom was off duty) came by for 4 hours to work with her.  Blood was taken, and Ali received oxygen during the visit, as she was not feeling well. The visiting doctor lectured Ali on not eating enough, which is not so surprising as the pain medications have been suppressing her appetite. They insist she eat more protein to promote healing, and so for good measure they brought along an  I.V. food bag and hooked her up.

Some feast!  🙂

While waiting for the 4-hour I.V. “meal” to complete, Ali’s mother, Uschi, entertained the medical support staff with her now locally renowned, Nespresso-based cappuccinos + cookies.

Mom’s cappuccino is very popular with visiting nurses!

Indeed, Ali is at risk of having to add an extra room to the apartment as American hospitality proves increasingly popular with her new Chinese friends.  Actually, plans are underway to create “Café Ali” right at home, where regular movie evenings will be hosted weekly.  She plans either American movies with Chinese sub-titles or the reverse. Or maybe Indian “Bollywood” with double sub-titles!

Other local news is that neighbor Sandra Lindberg has taken in yet another stray dog (she’s up to 4 now … no name yet for the latest) and came by yesterday to introduce the puppy to Ali, who has been thinking about acquiring another cat, as her beloved cat Bonsai remains in The Bahamas.  She really enjoyed her new visitor.

New neighbor pays a visit …

Sunday brother Mattias departs for Beijing and then back to his family and home in Atlanta.  He has been in Kunming for the past two very critical weeks and has been a constant source of both comfort and inspiration for Ali.  Indeed, Mattias slept beside Ali for seven consecutive nights while she was in hospital.

With warm, Kunming hugs to all that have been following Ali’s ongoing adventures here in Yunnan Province, China.

(9th Blog Post by “Bert & I” on Behalf of Recovering Ali)

Ali was discharged from hospital today — Day 9 post surgery.

  

Saddling up … and ready to ride again!

She drove herself out the front door of Kunming Tongren Hospital in her C300 Permobil chair and straight into the London Taxi driven by brother Mattias for the short ride back to her apartment. She’d hoped to drive herself in her C300 the whole way (about half a kilometer) home,  but facing torrential rain and flooded streets she welcomed the lift.

Discharge involved a final CT scan + ultrasound of her legs to guard against the risk of venous thrombosis. The handling required for either a CT scan or MRI is always tough for Ali, and today proved no exception. So she was pretty tuckered out by the time she returned home and was helped back into her own, much-beloved Flex-a-Bed.

Hopefully back to rehab next week …

And then she went to sleep for the longest unbroken rest she has had since well before her surgery on the 14th of May.

Tomorrow (Friday in Kunming) Bert & I hope to turn the reins of her blog back over to Ali  so that readers can start to get a first-hand account of what she has experienced.

The nursing care at Tongren Hospital has been excellent by any standard, and her neurosurgeon, Dr. Liu Yansheng, has fully validated her decision to choose him for this most exacting of neurosurgical procedures.

The only “surprises” from the surgery were the extremely high intracranial CSF pressure and that her vertebral lamina had been worn paper-thin, evidently by the sustained high internal pressure.

Kunming team leaders, Dr. Zhu Hui and Dr. Liu Yansheng, can only recall one other similar case of such high pressure of more than 1,000 similar surgeries. In other words, Ali did not have much time left before the damage would have been irreversible, with mortal consequences.

But … she appears to have moved just-in-time to commit to the surgery … and so Ali lives to fight another day!

Not bad for 9 days out … 🙂

(8th Blog Post by “Bert & I” on Behalf of Hospitalized Ali)

Ali has had another good day as the pain medication protocol devised over the weekend continues to be effective.

She again worked out from her bed with the Kunming Walking Programme physical therapy team – actually twice today. During one of the these workouts, she managed to sit for 20 minutes at 90 degrees, first propped up by pillows & then just locking arms with her therapists.

Talk about room service!  (Photo by Mom)

With the post-surgery pain finally under control, Ali is bouncing back quickly.

Indeed, the major news is that Ali is pressing for discharge tomorrow or the following day so that she can continue her recovery at home. Her hope is that in her own bed she will be able sleep without the constant wake-ups that are part of hospital life all over the world.

She also hopes to start catching up on her email to respond personally to the scores of well-wishers who have written either directly or posted comments on her blog.

Apropos Ali’s re-emerging sense of humor, she wisecracks this evening that without access to her telecom assets she feels she’s back in the 1990s. Imagine that … virtually back in the Stone Age!  (Nice going Samsung!)

Back on her own turf, Ali is also looking forward to joining brother Mattias and Dad for one of those divine Padron Anniversary cigars that she so enjoys. 🙂

(7th Blog Post by “Bert & I” on Behalf of Hospitalized Ali)

Ali had another relatively good day, no doubt in part because a satisfactory pain management drug protocol has finally been worked out.

Able to snooze at last …

Today also marks one full week since Ali’s surgery.  Her neck brace was removed entirely this afternoon, and her surgical wound continues to heal satisfactorily.  Tomorrow she plans to attempt sitting up in bed at 90 degrees

Physical therapists from the Kunming Walking Programme visited Ali in her hospital room to commence an in-bed workout routine that includes stretches and weight lifting with her arms.

First work-out since surgery …   🙂

Saving the best for last, after nightfall Ali launched into a riff on life as a surgical patient here that nearly incapacitated her brother Mattias with laughter. Evidently she has lost none of her renowned wit and has remained a keen observer of her surroundings despite sleepless nights and severe pain.

Ali also regaled us with “observations” made while in morphine-induced delirium … out-of-body experiences with a horror movie twist that included doors opening from the ceiling and raining large spiders down upon her in bed. (The morphine feed-line was removed yesterday … illustration below.)

Who wouldn’t be hallucinating …

                                 … with this SEWN into your neck?

(6th Blog Post by “Bert & I” on Behalf of Hospitalized Ali)

Neck brace off for the first time … Ahhhh!

After a decidedly wobbly start this morning, Ali ended Day 6 post-surgery in markedly better shape.

Early in the day 800 mg of ibuprofen helped to further reduce inflammation, and by the afternoon Ali asked that morphine be reduced from 3mg/hour to 2mg/hour.

Then by nightfall, she requested that morphine be discontinued altogether!

Ali remains uncomfortable, but her pain is far less than just 24 hours ago, and she even doses intermittently.

The attending medical staff also inspected her surgical incision again today, noting good progress in healing along with an evident lack of infection. Her temperature is normal, and her breathing is stable, with continued good blood oxygen levels.

Frankenstein production?   (Hair will cover!)

In fact, by late afternoon Ali was feeling well enough to welcome neighbor Sandra Lindberg’s beside visit.

Just open for visitors … neighbor Sandra

She also chatted, giggling, for half an hour with her nursing staff, entirely in Mandarin. These are all young Kunming women with whom Ali has developed sustaining friendships.

Mother Uschi and brother Mattias continue to keep a very close eye on all developments and assist actively whenever Ali has to be turned in her bed.

Sometimes only a nose tickle will do!

If this progress holds overnight, the last IV line will be removed tomorrow, which, in turn, opens up the prospect of taking her “home” in another 48 hours to recuperate further in her own bed.

Fingers crossed …  🙂

(5th Blog Post by “Bert & I” on Behalf of Hospitalized Ali)

Elevated pain levels continued to plague Ali all day, perhaps on account of attempts to further reduce her morphine dosing. This afternoon the morphine was reduced from 4mg/hour to 3mg/hour and appears to have been relatively well tolerated.

Holding her own today …

… as morphine falls to 3mg/hour

In addition, Ali’s breathing improved to the point where for much of the day she was able to sustain oxygen blood levels that are nearly normal, even without supplemental oxygen.

Oxygen rising …  94% vs. 98% normal

On the other hand, sleep continues to elude Ali for more than 15-20 minute intervals. 😦

Weekends are notably quiet here at Tongren Hospital, and the nursing staff appears to be considerably reduced compared with busy weekdays. So it’s just as well that Ali’s regular caregiver is pitching in alongside the round-the-clock bedside presence of her mother Uschi and brother Mattias.

Ever-present mother Uschi & brother Mattias

In the welcome news department, it appears increasingly likely that Ali has lost no motor functionality that she had before the surgery, and she seems to have gained some sensory function, which is quite common when the spinal cord has been directly handled in surgery.

Also, so far as we can tell, Ali complains mostly about the acute neck pain associated with her surgery rather than the chronic neuropathic pain that had so disabled her in recent months. Once the acute pain subsides, presumably in a few more days, we’ll get a much clearer picture of whether neuropathic pain has been alleviated, which was a core objective of the surgery.

Still no idea when we may be able get Ali back to her own bed in her apartment across the street … presumably as soon as the middle of next week.

Meanwhile, the nursing care at Kunming Tongren Hospital continues to be highly attentive.

Helping Ali raise her blood oxygen levels

(4th Blog Post by “Bert & I” on Behalf of Hospitalized Ali)

Ali has sure had a rough 24 hours!   😦

Getting her pain medication set correctly has proved to be very challenging and its still undergoing frequent adjustment.

Part of the problem comes down to hospital life in general.

No sooner is Ali resting comfortably than it becomes necessary to turn her to prevent pressure ulcers or to massage her legs to prevent a pulmonary embolism. “No rest for the weary” …

Unfortunately, each time she is physically disturbed, the movement unleashes severe pain.

Meanwhile, Ali is also having difficulty keeping her blood oxygen saturation at normal levels.  So she wears an oxygen mask intermittently throughout the day and night.

Struggling to maintain blood oxygen levels …

On the other hand, her surgical scar is healing well, and neurosurgeon Dr. Liu Yansheng remains highly confident that every surgical objective was accomplished with very minimal damage to peripheral tissues.

On the mend …

And Dr. Liu feels that the past 48 hours have gone pretty much as anticipated, although he plainly regrets it has been so challenging to tame Ali’s high pain levels.

Significantly, it is clear that Ali has lost no functionality as a result of the surgery, which was arguably the major risk.

But it is too early to know for sure that her neuropathic pain has been eliminated, which was unquestionably a major surgical objective. This is simply because the combination of inflammatory pain from the surgery + morphine to control the pain together mask many other sensations.  That said, her brother Mattias, who has been bedside with her round-the-clock, reports that Ali no longer mentions neuropathic pain, rather the acute neck pain triggered whenever her body is moved.

Meanwhile, Ali continues to receive the close attention of her primary physicians as well as Tongren Hospital’s very attentive and professional nursing staff.

Drs. Zhu and Liu and Tan bedside Friday …

(3rd Blog Post by “Bert & I” on Behalf of Hospitalized Ali)

Not unexpectedly, Ali had a tough 1st night in ICU. With anesthesia worn off and the surgery intubation tube still lodged in her throat, she was unable to communicate to her nursing team her extreme pain … and she did not sleep at all. This situation naturally frustrated  Ali and was relieved only when by dawn she thrashed about so violently that her brother Mattias and Mother were called into the ICU to get a handle on her distress.

Rounds of consultations with consulting physicians resulted in agreement to remove the intubation tube and administer morphine round-the-clock for a couple of days until her post-surgery inflammation subsides.  Wthin minutes after morphine administration, Ali’s pain and consequent emotional distress were substantially relieved.

Resting better now…

The backdrop here is that Chinese physicians are trained to make very light use of narcotics of any type, essentially to minimize risk of masking relevant patient symptoms. But in Ali’s case, there was nothing to mask, as it is crystal clear why she is in so much pain.

By early afternoon, with her pain greatly reduced and spirits rising, chief neurosurgeon Dr. Liu decided to discharge Ali from ICU and move her back to her room on the 7th floor. He personally supervised her move, and tonight she is resting relatively comfortably in her own room at Tongren Hospital.

Back to base from ICU …

1… 2… 3… All together Now! (Gurney-to-Bed transfer)

Chief Neurosurgeon Dr. Liu supervised ICU transfer

All-in-all, then, Ali has come through her complex surgery in good enough shape to have been discharged from ICU after just one day (versus 2-3 days earlier projected) and it appears she is likely to be feeling better with each passing day.

Joking with best friend Dr. Zhu Hui…  🙂

(2nd Blog Post by “Bert & I” on Behalf of ICU-Resident Ali)

Ali is alive … albeit not presently so chatty!

 

In ICU one  hour after surgery… not so chatty, indeed!

Her 4-hour, triple laminectomy and spinal cord surgery today was concluded at least one hour faster than anticipated and has been judged “highly successful” by her experienced Kunming neurosurgical team.  Less than 40cc of blood was lost.

Team Ali on Monday … Dr. Liu + members of his team

Here’s the story of Ali’s day:

At 8:30 a.m. she was moved from her room on the 7^th floor of Kunming Tongren Hospital to the operating theatre on the 3^rd floor.  Ali had fretted about how this transfer would play out, given how large she is relative to the average Chinese, but her anxiety melted when a team of no less than 8 hospital staff showed up to whisk her away.

The Boss ( Dr. Zhu Hui ) to Ali: “FIGHT!”

Words of encouragement from brother Mattias

Ali: “How will I be moved?”   Mattias: “Are you kidding?”

Shipping her out to Operating Theatre …

Given time required for preparation and anesthesia, the actual surgery commenced at 10 o’clock and lasted until 2 p.m.  All other variables being equal, faster surgery generally offers better outcomes.  Confident, experienced surgeons work faster and with less peripheral damage than do less experienced surgeons.

Team Chief, Dr. Zhu Hui: ‘Trust me!’

Dad: “We’ve done our homework. It’ll work!”

While we are happy to report that Ali’s surgery proceeded without complications, this is not to say there were no surprises, because there were, two in particular.

Early in the operation, it was discovered that Ali’s intracranial pressure was extremely high … so high, in fact, that when the Dura Mater was pierced, Cerebral Spinal Fluid (“CSF”) spurted 5-to-6 cm vertically!  Evidently this high pressure occurred because Ali’s CSF circulation had been substantially blocked by scar tissue in the ventral sub-arachnoid space … that is, scar tissue from the original injury trapped inside her spinal cord.. 

While MRI images are not intended to measure fluid pressure, the discovery of such high pressure helps account for at least some of the escalating, severe neuropathic pain Ali has been experiencing in recent months.

The other unanticipated discovery was that Ali’s dorsal vertebral arch (bone) was much thinner than usual – indeed, just paper-thin.  It is believed this resulted from the sustained high intracranial pressure referred above, and, obviously, degeneration of such a key structural element had ominous implications for Ali.  Now the high CSF pressure is back to normal, and the weakened lamina are gone, having today been surgically replaced by titanium rods and screws.

One other interesting observation as follows:  when Dr. Liu made his way round the left side of Ali’s spinal cord to remove tethering scar tissue and to lance the big cyst, he observed there was no pulsation in Ali’s spinal cord.  A hour later, after cutting away “very severe” tethering around the ventral side of her spinal cord, Dr. Liu reports that Ali’s cord is now pulsating again with the rhythms of her heartbeat and breathing.

As for the anterior cyst about which Ali has reported so much in recent weeks, this turned out to be as long as the latest MRIs had suggested (longer than 3 cm) but considerably wider than anticipated … suggesting yet another explanation for severe compression of the dorsal root ganglion that channels pain.  More ominous still, vertical development of the cyst had reached high enough in her spinal cord to begin impacting breathing function … and, indeed, Ali has reported experiencing difficulty breathing during the past week.

Right now Ali is resting in ICU, attended round-the-clock by a neurosurgeon + dedicated 24 hour rotation nurses stationed at the foot of her bed + a three person team of therapists who constantly massage her legs to prevent a pulmonary embolism.  Kunming neurosurgical team leader, Dr. Zhu Hui, insists in sleeping in hospital tonight “just in case” there were to be a complication to which she could response faster in person that by telephone!

Rushing from Operating Theatre to ICU

Ali is expected to be in ICU for two days and then to return to her room on the 7^th floor for the balance of the week.  She can then recuperate in her nearby apartment, which hospital staff will visit several times daily to check up on her

 

 Dad + relaxed Dr. Liu …  30 minutes post-surgery