The remote worked!!!! For a while…

The article below is a follow up on my post of Mar. 08/08 that detailed the proposed surgery to relieve the sever chronic pain of drug induced diabetic neuropathy suffered by my sister Corinne. For reference purposes I’ve started with a recap in the form of the opening paragraph from the original post and as usual you can click on the title link to see the full post.

Will the new remote control work on the TV?

Posted by Les Muise on March 8, 2008

cooltext78187361Twelve years ago my sister Corinne [Harland] developed NeuroSarcoidosis which is an autoimmune system dysfunction that causes the atrification of the lymph nodes in the body. In Corinne’s situation it was the lymph nodes in & around the brain stem & her spinal / nerve system. As a result she is now legally blind [unable to drive] has difficulty walking, has to deal with a major loss of memory, & has suffered the usual complications of being on massive steroids for an extended period of time; she is a drug induced diabetic, has had liver & kidney problems and lives with the sever chronic pain of diabetic neuropathy {pain in the extremities, feet & ankles}, the steroids [Pregnazone at as high as 100mg/day – 12x max recommended dose] have caused her bones to become brittle and for her to gain massive amounts of weight.

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I figure the easiest way to bring you up to date on Corinne is to send you a copy of my Day Book Notes:

Surgery Progress Report 7:59pm Monday, Feb 18

  • Corinne’s surgery started at 6.00am this morning & went till after 1.00 pm (7+ hr).
  • Apparently they had trouble attaining the pain blocking into her feet and had to make a decision on should they insert the computer control unit but in the end they continued with the surgery and will try again tomorrow to ‘tweak’ the pain blocking ability tomorrow.
  • For now Corinne is resting in Recovery…. since 1.30 pm waiting for a bed in the neuro ward to become available.
    Dr Mendez is due to talk to Richard & Grammer at 8.30pm if there is anything new after that I’ll pass it on.

Corinne’s recovery progress….12:45am Thursday, Feb 28

A week after her surgery ….. I’m almost afraid to say this BUT the difference is unbelievable …. Prior to last Monday you could see the pain in Corinne’s eyes , face and hear it in her voice..7.5hr of surgery and $$$$$ of computer gear in her gut and she is a different person… gradually regaining control of her life.

The computer system and the remote control allow her to turn up the white noise when needed and then turn it down when not needed. The relief from the overwhelming pain is amazing to see….. she has more energy, her cognitive clarity is greatly improved and her mobility is better than its been in years.

Is she better…. NO!

The Neuroscarcoid which is the core issue is just as bad But this is a huge improvement in her quality of life & the reduction in her use of pain killing drugs (7 different drugs taken daily) will allow the neuro guys to fine tune their approach as to how to attack the Neuroscarcoid.

Corinne has been home since last Wednesday and as of today has returned to visiting St WalMart & St Sobey’s on a daily basis & once the stitches are out (Friday) she should start back at Curves with in a week or so… Again WOW!!!!

In some cases…..11:56am Sunday, Mar 2/08

Last night Corinne’s incision (in her side, where they tucked the computer) opened along the scar and started weeping. She was readmitted to the QEII early this morning and will be back in surgery to have that incision cleaned, drained & restitched to close. Hopefully the surgery will be soon & ‘Quick’ …. I’ll let you all know asap but I’ve no idea what kind of timing we’re looking at….

Through this whole situation, going back thirteen years or better Corinne has always been the exception to the rule …. so much so that her Pharmacist has started referring FIRST to the section in the description of the affects of her ‘new’ drugs that starts with ‘In some cases…..’ No matter what the positive effects that the drug may offer to the average Joe …. chances are that Corinne will react negatively or at least have a reaction that puts her in the 2% of users group. A complicated lady she is! I’ll let you know as things develop….

Corinne’s Sunday Update 8:05pm Sunday, Mar 2/08

Corinne is staying in the Hospital till She’s had surgery. They are trying to knock down the infection with high dosages of antibiotic by intervenes ….

She is to see Dr Mendez asap tomorrow & surgery will be as soon as there is an opening either Monday or Tuesday.
Even if they operate on Monday … I don’t see her home till Wednesday or Thursday.
I’ll send info as I know what’s going on..

Corinne Update 9:30am Monday, Mar 3/08

Decision this morning is to keep Corinne on the high dose antibiotic till Wednesday / Thursday & clean everything out that way rather than ‘risk’ another surgery at this point. Any changes & I’ll pass them on…..

Corinne Update 9:14am Tuesday Mar 4/08

As of Last evening…. The plan is to keep her in the Hospital on High Dose Antibiotics till at least Wednesday & then back to surgery to remove the $168,000.00 computer and the wire that runs through her body to the leads that tie the system to her Spine & nerves.

The computer and wire would have to be resterilized before it can be reinserted & they feel Corinne would need 3 – 4 months before the infection is gone completely.

She is still on 65mg of Pregnazone / day (12 years at as high as 100 mg/day when Manufacture says Max daily is 7mg/day) so any infection grows at an increased rate & the condition (Scarcoid) generates nodules that themselves are infected so the risk of going through the whole process to end up the same is high.

There is a chance they may be able to jury rig a connection through her skin to allow her to continue to get the benefit of the pain control.

My concern is and always was....

Another surgery to take out the system & a third down the road means 2 more major surgeries, Corinne has proven to be a challenge for the anaesthesiologist to the point she now carries a medalert card that details the problems & what drugs to stay away from.

The stress level that her body faces is huge & our family history says the chance of heart failure during surgery is high.

The last week is the first time in the past 12 years that Corinne has experienced any reduction in the incredible amount of pain that she faces daily …. she takes 7 different drugs to deal with the pain and the effect of the Hugh amounts of Morphine that are required… the system was successful in relieving the pain without requiring the mind numbing amounts of drugs.

How can anyone face going from a few days of relative freedom from pain to facing the fact that instantly she could be back to spending most of her day unable to move or function because the pain is so bad you want to cry & the drugs your taking make you groggy & you fall asleep standing up….

Not an easy situation to face… but she cant avoid it… I’ll update when things change!

TUESDAY MORNING MARCH 4/08 My complicated sister….

As of this morning Dr. Prudy & Mendez (God’s 1 & 2) plan to take out the infected computer system tomorrow & if they can save the wire they will install a new system on the other side of her gut.

They also plan on installing a permanent IV shunt so she can stay on the high dose antibiotics.

The Province of Nova Scotia is so lucky to have these two Doctors and their technology available… all this is ‘new’ application of a ‘new’ technology that has been developed right here at Dalhousie & the QEII through the Brain Repair Center. Tomorrow will tell how things will be……

10.30 pm March 4/08 The night before the pain came back.

After all visitors had gone home and the Hospital slowed down for the night, Corinne decided to go for a walk on her last night of freedom. She left her room, cane in hand and strolled around the halls of the QEII for almost two hours, by her self just walking around because she could and might not be able to tomorrow.

Understand that over the past decade Corinne’s mobility has steadily reduced to the point that just prior to her fires surgery she could not have covered one third of that distance in the same time and she would have ended in a pool of sweat and shivers from forcing herself to take that next step.

One of the issues faced by any one who suffers from severe chronic pain is that over time your neurological / motor control reacts to the pain by shutting down. With the drug induced diabetic neuropathy suffered by my sister Corinne her brain is constantly getting the message that her feet are on fire and every step telegraphs that message over & over & over at a level of severity that would astonish the rest of us but she keeps moving.

The Morphine takes the edge off the pain for a while but as the end of the time line nears the pain becomes unbearable. Round & round we go and the effect on her cognitive clarity is noticeable.

There is nothing wrong with her feet to cause that pain but there is no way to convince Corinne’s brain or the rest of her nervous system. Over time the brains response is to shut down the nerve / muscle motor control. The effect is that [just before the first operation] when Corinne stood at the bottom of a set of stairs she could not not clime up those stairs without grabbing the railing and pulling herself up each and every step.

The night before the pain returned Corinne roamed the halls with relative ease, testing her feet by trying things that would have previously had her crying in agony but not that night … she went back to her room and to bed tired but not in pain.

That would end within 12 hours….

12:50pm Mar 5th

Surgery is now planned to start at 1:30pm +/- and it will take 2 – 4 hours so it will be supper time but I’ll pass any news along asap…

6:40pm Mar 5th

Corinne is out of surgery…. they removed all the contaminated equipment and cleaned out the crap of the infection and sewed her back up.

There will be a 3 – 6 month break, till she has healed enough and the infection is gone before they will try again.
The plan is to try again, the system worked but the staff infection was too risky to allow the system to stay. Without removing the equipment there would be no way to get rid of the staff infection, the contaminated equipment would keep restarting the infection.

Corinne will wake up in the morning in pain….

March 6/08 The Pain is Back

I was in to see Corinne in the Step Down Unit on 7.3 at the QEII Health center this morning and it is clear that my sister is going to have a rough tile recovering from this ordeal. As soon as the anaesthetic wore off enough for her to wake up the pain came rushing back … with a vengeance. With in that short break of ten days the memory of how severe that agony was had faded in her memory. The violence with which it returned was evident in her face in her eyes, in her voice and her will.

12:16pm Mar 9th 08

The reality of how draining this as been on Corinne is hitting home today but hopefully a couple of days of R&R and she’ll start rebounding.

I don’t know how she keeps as positive as she is … the pain & the disappointment of loosing the only relief that she’s had in years is so overwhelming that I don’t know if I could handle the situation if it were me…

March 14/08

A week after the second surgery [removal of the computer] and Corinne is home, with VON coming twice per day to administer the two IVs of high dose antibiotics for the next two weeks. She is drained physically, emotionally, medically, and in as much or more pain than she has ever endured. Her mobility is back to where it was before the original procedure… its going to be a long slow three months till the surgery is attempted again.

The reality is that the system worked and the optimism is that given a clean bill of health and a reassessment the next attempt will be successful and she will return to the freedom of controlled pain as long as …naw I’m not even going to think about those risks … not now.

I’ll let you know…

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The things in my life that I look forward to every day: Far tooo much coffee! Friends & laughter. Relaxing over a good meal & a beer. A decent conversation about important issues; personal & business, community, national or global ... all issues are welcome.

Posted in Human Interest, Medical News

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