MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

Postby blossom » Wed Jul 04, 2012 9:50 pm

the reason i say he hit it lucky is that his second opinion was lucky for him that he got a neuro. that looked at all his problems and had it addressed. he could have went to many neuro.'s and would have looked at him as the first one did. not a cake walk what he went throgh --but it beats having it ignored. pretty neat story. "plus i would bet his veins were being squashed a tad"



News Releases Archive
A STEP-BY-STEP RECOVERY : SYMPTOMS OF SPINAL STENOSIS

From St. Louis Post-Dispatch, April 5, 2004 by Jim Woodworth


People with spinal stenosis can suffer from one or more of the following symptoms:

- Stiffness, slowness, weakness and abnormal muscle tone in the legs and arms.

- Pain in the neck that extends into the arms, and cramps and pain in the legs.

- Impaired bladder muscle, resulting in incomplete emptying and lost sense of bladder fullness.

- Impaired sensory symptoms.

- Loss of sensation in the extremities.

Source: Dr. David B. Clifford, professor, Department of Neurology, Washington University School of Medicine


HOW I DID IT

Name: Jim Woodworth
Age: 43
Home: St. Louis
Occupation: Journalist
What he did: Learned to walk again after a diagnosis of spinal stenosis

After spinal stenosis, Post-Dispatch copy editor Jim Woodworth had to learn how to stand - and walk - on his own again.

I have to admit I get a kick out of the quizzical looks I get from some people when they hear why I walk stiffly while leaning on a cane.

"That's OK," I say. "I never heard of spinal stenosis either until I got it."

Spinal stenosis, a narrowing of the spinal column that causes pinching of the spinal cord and damages delicate nerves, is a mystery to just about anyone who hasn't suffered from it or is treating it. The most common cause is arthritis, but deterioration and herniation of discs in the spine are other common causes, said David B. Clifford, professor in the Department of Neurology at Washington University School of Medicine.

Heredity - being born with a narrow spinal canal - often lays the groundwork for future problems.

For me, spinal stenosis led to a dramatic downhill slide over a five-month period that put me in a wheelchair with my legs virtually useless at age 39.

Friends and family stood by helplessly as I deteriorated day by day. The loss of balance, strength and coordination was frightening for a guy who had been a pretty decent athlete in his day, including a diver on the high school swim team.

It took surgery, nearly three years of hard work and the vision of talented medical professionals to learn to walk again, albeit slowly and with a cane.

The misdiagnosis:

I had received a frightening piece of information from a neurologist in fall 2000: I had primary progressive multiple sclerosis, the most serious form of the autoimmune disease that attacks the myelin sheath of the spinal cord.

My wife, Nancy, and I had talked about the fact that my symptoms - which included stiff muscles and legs so weak I couldn't walk without some kind of assistance - could be MS, but until I heard it from a doctor, I didn't want to believe it. Now, I was faced with a devastating disease for which there is no cure, only treatment for the symptoms.

My legs were deteriorating at a rapid rate. It wasn't long before I needed a walker to get around. I needed help getting dressed, because I suffered from clonus, which caused my legs and feet to vibrate and twitch uncontrollably.

The outlook was grim. But then came a second opinion from Clifford at Washington University. When the results from a second round of tests came back,

I received the proverbial good news/bad news. The good news was I didn't have MS. The bad news was I had stenosis in the cervical area of my spine. The pinching of the nerves in my spinal cord was creating a condition known as myelopathy.

On Dec. 18, 2000, I had surgery at Barnes-Jewish Hospital on the four offending bones in my spine to relieve the pressure on my spinal cord. Now I was under a different type of pressure: learning to walk again.

On my feet again:

I spent one week in post-surgery, then moved to inpatient rehabilitation with a 5-inch incision on the back of my neck and a lot of pain emanating from it.

There was no way for me to know what - and who - was waiting for me.

Enter Rachel Lawry, the physical therapist who would be in charge of literally getting me back on my feet. After a brief introduction in the Barnes-Jewish spinal cord injury rehabilitation gym, Lawry asked me what I thought at the time was possibly the dumbest question I had ever heard:

"What is your goal for physical therapy?"

I don't remember what my answer was, but I do remember thinking that I wanted to answer with something along the line of, "You've got to be kidding, you twit. I want to stand up and walk out of here."

Lucky for me, I didn't answer in that fashion. If I had, I'm sure Lawry would have made the three weeks I worked with her even tougher than they were, not out of spite, but to teach me a lesson.

The first day with Lawry, she wheeled me over to the parallel bars and had me pull myself up to my feet. It was the first time I had stood since I could remember, and it took all the strength I had in my legs - and arms - to hold myself up.

It was a huge day. A guy who thought he would be confined to a wheelchair for the rest of his life was standing up. I did what came naturally: I wept, but only for a few seconds. Lawry had work for me to do.

"I remember how shocked you were standing up for the first time" in physical therapy, Lawry said in an interview for this story. "You didn't believe you would walk again."

I've jokingly compared working with Lawry to my experience in Navy boot camp, but it was probably more like Rams training camp: Wake up early. Eat. Slide into my wheelchair and go down to the gym for my first workout. Eat. Work on exercises in my bed. Head back to the gym for another workout. Eat again. Exercise in my room again.

It was rough, but it worked. My first day in rehab, I scored six out of a possible 56 points on the Berg Balance Scale, a series of tests designed to determine what I could do safely. By the time I left inpatient rehab, I had pushed my score into the 30s.

Working out:

The workouts were exhausting. The clonus would kick in at inopportune times, forcing me to stop what I was doing. Muscles that hadn't been used properly for months groaned, complained and resisted. Just walking 90 feet using a walker was torture.

My muscles had good reason to complain. The myelopathy in my spinal cord had damaged the nerves that send signals about muscle tone to my legs. As a result I suffered from spasticity, a condition where certain muscles are continuously contracted, causing more stiffness and tightness than a baseball player pumped up on steroids. My toes would involuntarily curl under my feet when I walked, adding to my discomfort. In addition, my hip abductor muscles had become weak from lack of use, causing my legs to cross in front of each other when I walked.

The workouts became more intense as time progressed. I had to learn how to walk all over again, getting my heel to hit the floor before the rest of my foot. I was fitted with ankle foot orthoses to help me with what at that point was a horrendous task.

Lawry, who still works with spinal cord injury patients at the Rehabilitation Institute of St. Louis on the Washington University campus, was direct when she talked about our time working together. "Trust was a big part of it," she said.

"You had to learn to trust me. Attitude is 80 percent of recovering from a spinal cord injury. It takes motivation and focus and attitude."

Going home:

I left the hospital a month after I entered, armed with a series of exercises to do at home. But I wasn't completely on my own; I was still going to rehab sessions, first at Barnes-Jewish, then at the Rehabilitation Institute. Depending on what the therapy entailed, I would attend sessions one, two or three times a week.

Working with a number of physical therapists, I continued to progress slowly.

The muscles in my legs continued to resist what I had to do to them, but they were getting stronger. I graduated from a walker to two canes and eventually to one cane. My workouts became more strenuous. I had different therapies added to my regimen, including electrical stimulation, workouts in the Rehab Institute pool and a regular workout that included time on the treadmill, recumbent bike and several pieces of other gear to strengthen my leg and hip muscles.

As my chart grew thicker (the therapists at the Rehab Institute liked to joke that it was as thick and heavy as a Sears catalog), I would reach plateaus where it seemed like I wasn't making any progress. Maintaining a positive attitude was difficult; there were times where I figured that I had gone as far as I could go.

But when I reached those plateaus, Dr. Cristina Sadowsky, the assistant professor of neurology at Washington U. and physiatrist overseeing my recovery at the Rehab Institute, would come up with a new approach.

One of those approaches was Botox, the toxin developed by the Army for biological warfare that is now popular for cosmetic purposes. The concept was simple: With injections into the nerve terminals of the muscles in my legs that were giving me problems, the bad message that the nerves were sending to my muscles were temporarily paralyzed. I would become a different person after about 36 hours. My muscles loosened up, and I was able to walk farther with less effort.

When I asked Sadowsky why she hadn't tried Botox sooner in the recovery process, she explained that the best treatment for spasticity is controlled activity. ""Any medications that treat spasticity inhibit the neuro system,"" she said. "If you can do something the natural way, training the motor functions, that is the best way to go. ... If you hit a plateau or a brick wall, then we use pharmacological interventions and see how they help."

While the Botox has a somewhat miraculous effect on my legs, its effect is temporary. I have to get injections every three months to feel its benefit.

Sadowsky said there are other medications for spasticity management. "I never run out of ideas. ... As long as you don't run out of patience, I don't run out of options," she said.

I am admittedly impatient. Having to stretch my legs for a few minutes every morning before I get out of bed and knowing I will suffer if I don't put in 20 minutes on the recumbent bike or if I miss a dose of Botox has that effect on me.

But, as Lawry said, I have to think in terms of "baby steps."

_______________________________________

Copyright 2004 St. Louis Post-Dispatch
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Re: MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

Postby dania » Wed Jul 04, 2012 9:58 pm

Great find Blossom!
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Re: MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

Postby blossom » Wed Jul 04, 2012 10:26 pm

hey dania or whoever i don't know why it come on here 2 times and with my computer skills i sure as hell don't know how to take 1 of the threads down.

oh well. --- it's worth reading twice. now back to my "woman cave"
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Re: MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

Postby frodo » Sat Jul 07, 2012 7:19 am

The parts I like the most:

blossom wrote:The misdiagnosis:
I had received a frightening piece of information from a neurologist in fall 2000: I had primary progressive multiple sclerosis, the most serious form of the autoimmune disease that attacks the myelin sheath of the spinal cord.


blossom wrote:The pinching of the nerves in my spinal cord was creating a condition known as myelopathy.


what if most of us are suffering from a misdiagnosis? those that can prove that they have blocked veins can claim for a reevaluation, and apply for venoplasties instead of CRABs.
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Re: MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

Postby sou » Sat Jul 07, 2012 8:06 am

Am I the only guy that does not feel excited at all about this story? Is the conversion of a healthy man into a carrot chasing donkey a success? I still have a strong belief that physical "therapy" in neurological conditions is a huge cow, that eats disabled people and generates cash to the "therapists". In other words, if physical therapy were effective, there would have been no wheelchairs around. The funniest part is the Botox injection... They should be ashamed of writing such trash.

In my opinion, this story is a bad, fraudulent advertisement and could have been easily sponsored by the US union of physical "therapists", so that people don't feel that their profession is completely useless. I am an end user of their services and I judge them as such. If the guy repairing my car were as skilled, I would ask for a refund instead of paying him.

Keep buying your drugs and paying your "therapists", mates! Everything will be all right (for them, not you).
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Re: MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

Postby blossom » Sat Jul 07, 2012 2:33 pm

hi sou, i'm sure you are not the only one not excited about this story. myself, i can't say i was excited. BUT, my reason for posting this was that i never bought into one shoe fits all. that was the idea of whoever named these symptoms they named ms.

this guy was lucky his second opinion was from a dr. that looked further and had the surgery done that stopped the progression and the physical therapy helped bring him back as good as possible. had they not found his real problem all the physical therapy in the world "as we all know" would at best help us maintain a little while as we watched our bodies basically go down hill. been there done it.

we want the dr.'s to be open minded but we need to be too. that there is a very good possibility some branded with ms may very well have had fixable problems that were ignored and still are.

ccsvi, the csf flow the jaws all this and more is an individual thing we are individuals. time the mainstream remembers that.

anyway, i may not agree with you in all things i appreciate and enjoyed your response.

hope greece is cooler than pa. one thing most of us here can agree on is this heat sucks.
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Re: MORE SPINAL CONNECTION---THIS GUY HIT IT LUCKY!!!

Postby Trish317 » Sat Jul 07, 2012 5:04 pm

blossom wrote:hi sou, i'm sure you are not the only one not excited about this story. myself, i can't say i was excited. BUT, my reason for posting this was that i never bought into one shoe fits all. that was the idea of whoever named these symptoms they named ms.

this guy was lucky his second opinion was from a dr. that looked further and had the surgery done that stopped the progression and the physical therapy helped bring him back as good as possible. had they not found his real problem all the physical therapy in the world "as we all know" would at best help us maintain a little while as we watched our bodies basically go down hill. been there done it.

we want the dr.'s to be open minded but we need to be too. that there is a very good possibility some branded with ms may very well have had fixable problems that were ignored and still are.

ccsvi, the csf flow the jaws all this and more is an individual thing we are individuals. time the mainstream remembers that.

anyway, i may not agree with you in all things i appreciate and enjoyed your response.

hope greece is cooler than pa. one thing most of us here can agree on is this heat sucks.


I've always questioned my darling man's diagnosis of PPMS because of the neck trauma he sustained in his mid 20's (a cervical break). He had several neck surgeries, at the Mayo Clinic, to fuse the vertebrae. He's 60 now and got the PPMS diagnosis seven years ago. He had the CCSVI procedure in September 2010, and had very short-lived improvements. His condition has gotten steadily worse. He's gotten to the point where he doesn't want to live to see 65.

I've always agreed with your "one size does not fit all" viewpoint, Blossom. I've also always appreciated reading the things you find related to spinal trauma.

Hugs!
Trish
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