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Posts Tagged ‘arthritis’

It’s been a little over six weeks since I had anterior cervical discectomy and fusion (ACDF) surgery. Two herniated discs between vertebrae C5-C7 were removed, bone spurs removed, artificial cages seeded with my own bone tissue inserted in the disc space, and the three vertebrae held together with screws and plates.

The good news is that the numbness and tingling in my fingers are almost completely gone. In addition, the shooting pain down my arms is also a thing of the past. This demonstrates that the pinched nerves were released. The symptoms from the compression of my spinal cord (stenosis), including hand clumsiness, are also gone. Muscle pain and stiffness in the neck and shoulders is much reduced but is still present – that will take some time to get better. I still take some muscle relaxants but have been able to reduce the dose over time and hope to stop taking those soon.

Due to the stress of the surgery put onto the esophagus, it was difficult to swallow food. But that has improved to the point of hardly being an issue. The vocal chords were also impacted and I easily lost my voice for the first few weeks but my voice is back to normal now.

photo (1)A six week follow-up with the neurosurgeon was today. It began with an x-ray of my neck – the first image I’ve seen of the handiwork since the procedure (see pic). It was very interesting to see the screws going into the bone and wondering if those things were actually inside my neck! The good news was that there is early evidence that the bone is fusing and hardware remains in place where it should be.

 

photoThe scar still looks rather gruesome and garners comments on a regular basis. But I can see a slow reduction in swelling and the original incision shows up as a thin, dark line (see pic). Like with other surgeries, the scar tissue is sensitive to the touch and based on advice from previous surgeon, I try to gently desensitize it by touching it on a regular basis.

I was cleared to for physical therapy and will begin that tomorrow. The purpose of the PT will be to strengthen the neck and arm muscles which have atrophied from the pinched nerves and lack of use over time. I was also cleared to engage in regular activities and lift objects within tolerance. The next follow-up appointment won’t be for six months at which time a CT scan will be done to check the bone fusion.

It’s been a difficult recovery given the nature of the procedure. The surgery set off a flare of rheumatoid arthritis symptoms which are starting to subside. It’s been a wild ride but just this past week I could finally say that I was glad for having the surgery.

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Multi-Level: involving more than one.

Anterior: nearer the front, especially situated in the front of the body or nearer to the head.

Cervical: of or relating to the neck.

Discectomy: surgical removal of the whole or a part of an intervertebral disc.

Fusion: the process or result of joining two or more things together to form a single entity.

Osteophytes: bone spurs

Excision: Surgical removal by cutting.

I received an epidural steroid injection into my neck and no relief was felt. Pain levels in my neck, shoulders, and arms got out of hand to the point where sleep was not being had. My fingers were numb, tingling, with small motor function suffering. Work, both professional and at home, was not getting done. Leaving the house was mostly out of the question. Because of these issues, my physical therapist refused to treat me and based on a discussion about various other symptoms, he said that he was running next door to the neurosurgeon’s office to determine if they could see me immediately. He came back shortly and said that they were getting me in 30 minutes. After a long exam and discussion, the doctor indicated that surgery would be the only route that would provide long term relief. After thinking about it and reading the variety of literature provided by the doctor’s office, I finally agree to proceed and it is scheduled for May 15.

The procedure will be a multi-level anterior cervical discectomy, fusion and osteophyte excision. Going in from the front of the neck, two herniated discs between vertebrae C5-C6 and C6-C7 will be removed, bone spurs impinging on nerves and spinal cord cut away, a plastic mesh containing parts of my own bone material inserted into the disc space, and titanium screws will be used to connect the three vertebrae. The entire procedure will take about 3-4 hours and I will stay in the hospital overnight. Recovery is at least 6 weeks. Here’s a nice post from Sandy who described her experiences with a similar procedure.

I’ve had three ankle surgeries and a sinus surgery. Even though the sinus surgery was very close to my brain, this one seems a little more intense. Maybe that’s because they will be putting titanium screws into my neck. Or that a hospital stay is required. Or that there’s so many life necessary parts in that area. But I trust the surgeon as he’s well qualified and trained, board certified, part of a large hospital spine center, and done many of these procedures in the past. The decision to have surgery is never to be taken lightly. But given the long term and increasingly intense pain, coupled with disability of function, it’s clearly time to proceed.

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PIK512x664As I mentioned in an earlier post, it’s oftentimes difficult to validate the barrage of information on the internet about health issues and diseases. There are some trustworthy sites for RA such as the Johns Hopkins University RA site. But much of the information on the internet is designed to provide basic information and not detailed and current scientific and research-based results. I recently found an excellent site that can help fill in these gaps. The Projects in Knowledge program is a continuing education program for doctors that is totally online and freely available to patients and other interested parties. All board certified doctors and other medical practitioners must complete ongoing training to maintain licensure. The Projects in Knowledge provides continuing education for medical practitioners. There are accrediting bodies that oversee these programs thereby maintaining quality, accuracy, and currency. Projects in Knowledge has a specialty devoted solely to RA. The rheumatology section is edited by Dr. Phillip Mease who is a clinician at Swedish Hospital in Seattle and a researcher associated with the University of Washington. Each specialty contains interactive modules, video lectures, readings, and other materials. The content is based on the most current research literature. They also have an iPad app called Rheumatoid Arthritis-A Living Medical Textbook where you can go through each interactive module. Granted, much of the information is highly technical but it can provide an excellent background in RA for those who are interested in learning more. Check it out!

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Sorry for being gone from this blog in a while but rheumatoid arthritis has a way of causing one to focus energies on life’s necessities like work, family, and trying to get healthy. One thing I’ve learned with a chronic illness like RA is that there is never a dull moment. Some new surprise always lurks around the next bend.

I’ve been battling chronic sinus problems for months. I’ve been on three increasingly stronger antibiotics and other treatments including prednisone, decongestants, etc. All to no avail. I am now scheduled for an endoscopic sinus surgery where an ear, nose, and throat doc (ENT) will clean out my sinuses, increase drainage, and correct a deviated septum. This is not something I look forward to but the potential relief motivates me to go through with it.

Ethmoid sinus infection CT scan

In conversations with both my rheumatologist and ENT doc, they agree that the cause of the chronic sinusitis is a combination of anatomical issues causing a lack of drainage and the immunosuppression of the RA drugs. Both are convinced that things will be better after the “rotor rooter” procedure as my rheumatologist affectionately calls it. She also said that the standard is to keep patients on RA drugs even during such treatments and surgical procedures. She does not want a break in RA treatment as it’s too hard to catch up. She said it’s now rare to pull people off of biological RA treatments unless there’s a serious side effect. Both docs have great hope that things will be better after the procedure.

Sorry for the long absence from the blog but my energies have been elsewhere. I’ll post updates on the upcoming surgery and it’s outcomes.

Photo credit: http://commons.wikimedia.org/wiki/File:Ethmoidinfection.png

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About two years ago was the first time I began to notice swelling and pain in my proximal interphalangeal (PIP) joints in both hands. The PIP joints are the middle knuckle in each finger (not including the thumb). Although I had other symptoms, this was really the reason for seeing my primary care physician ultimately leading to a visit to a rheumatologist and a RA diagnosis. Early on, my rheumy ordered x-rays and the radiology report indicated some bone erosion in these joints. In spite of being seronegative for RA factor, this finding was enough for my rheumy to quickly begin disease modifying medications eventually leading to the use of TNF blockers (Enbrel, Cimzia, now Humira). Since then, inflammation has spread to the some of my metacarpophalangeal joints (MCP) at the bottom of each finger and to the wrist (and elbow, and knees, and feet…).

Inflammation of the PIP joints is typical in RA patients and can lead to permanent deformities in the fingers.[i] Joint damage can come on rapidly if RA is not treated. I vividly recall my first encounter with RA about 20 years ago. In the days before major disease modifying medicines, my neighbor had severe RA and his hands, fingers, and feet were deformed beyond use. He was such a gentleman and upon shaking my hand, quickly explained why his fingers were so deformed. Surgery scars were prominent on each finger. Surgeons went in and clipped the ligaments in a futile attempt to slow the deformity.

Because of this, I’ve kept an eye on my fingers. A few months back, my rheumy ordered another round of x-rays and the good news was that the radiologist noticed no additional bone erosion. But since I live with my fingers every day, it’s easy for me to notice slight changes. Several fingers began to bend towards the outside (called ulnar drift) and some are no longer straight but are twisting/rotating (see photos).

I can certainly rejoice in the fact that bone erosion in my fingers seems halted at this time. And I can’t complain because many RA patients have dramatic joint damage and deformity. I suspect that the use of TNF blockers has something to do with my case. Never the less, I can see the changes over time.


[i] http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_clin_pres.html

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RA is opening my eyes to the complex world of high level, biological medicines. According to one source, the global market for TNF inhibitors (e.g. Enbrel, Humira, etc.) was $13.5 billion in 2008. Understandably, it takes years of research, clinical trials, and approval processes in multiple countries before a new medication hits the market. And recouping those costs is important since the pharmaceutical companies have so much invested. But these dollar amounts amaze me when I consider the exorbitant retail price (about $1,800 a month) and the fact that the FDA gives a 14 year lock on biologicals before making it generic (7 years for other drugs). 

Proteins Layer by kaibara87.

Upon the announcement of FDA approval of Cimzia, a new TNF inhibitor, the stock shares of UCB, the company that produces it, jumped dramatically and they estimate $1 billion profit from the drug in the first year. Now that I’m taking Cimzia, I wondered for a moment if I should rush out and buy stock! But I think I’ll wait until the verdict on its effectiveness on me is in. Clearly, biological medications represent a very profitable business.

I’m convinced that the researchers on the front lines doing the basic lab work have the best interest of suffering patients at heart. Seattle, where I live, is a hub of biotech industry.  The Institute for Systems Biology. the Seattle Biomedical Research Institute (SBRI), the Fred Hutchinson Cancer Research Center, the University of Washington Medical Center, and many others are located here. In my line of work, I’ve had the fortune of getting to know some of these scientists. They are passionate about discovering treatments and cures for diseases. The Gates Foundation, the world’s largest private foundation, is also headquartered in Seattle (yes, the Bill Gates from Microsoft). They made healthcare a funding priority and they pump billions of dollars into research designed to treat and cure worldwide diseases.

In the United States, the National Institutes of Health (NIH) pours in billions of tax dollars into medical research. In 2009, they estimate that $238 million will go into arthritis research. For fun, check out NIH’s list of funding. While $238 million may sound like a lot, it’s a drop in the bucket compared to other categories. I’m glad for this funding but I also know that politics plays a role in this funding.

It also helps to place a human face with this type of research. Bruce Beutler was the scientist behind the development of Enbrel. He is now at the Scripps Institute. Here’s a link to his lab website where you can check out what they’re doing now. I’m thankful for his groundbreaking research that led to TNF inhibitors that are widely used for treating RA today.

I’m still unraveling the systems, funding, political, and business sides of this emerging world. Parts of it make me very glad. Others cause me concern. I most look forward to future research and resultant treatments…and dare I say cures…for RA.

 photo Creative Commons License http://www.flickr.com/photos/kaibara/

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I want to blog about arthritis for three reasons. 1. Its therapeutic to write about what’s going on with me. 2. To communicate with my friends and family. 3. Bring awareness to autoimmune arthritis.

First Signs

In May 2004, I started having severe eye pain, redness, and blurred vision. I ended up at an ophthalmologist and within 1 minute he pronounced that both eyes had acute anterior iritis – an inflammation of the iris. After performing some tests and prescribing continuous doses of prednisone steroid, he asked me if I ever had joint problems. I thought that this was odd coming from a physician dedicated to treating eye problems. He stated that iritis is a common symptom in autoimmune disorders. He said that there are blood tests but since I had no other symptoms, I could just wait and see what happens. I quickly forgot all about it.

Next Signs

In the fall of 2006, I began to have problems with my Achilles tendons. They were swollen, inflamed, and very painful to the touch. The left tendon was worse than the right. It affected my ability to exercise. After visiting an orthopedic surgeon who specializes in ankles, he suspected that there was tendonitis and/or tearing in the tendon. Upon examination, he stated that the problem was likely congenital because I have long leg bones causing the tendon to stretch. An MRI of the tendon revealed tears in the tendon. Surgery on the left tendon was performed in January 2007. He repaired the torn section and also performed a lengthening of the tendon in order to reduce the tension. I mentioned that the right tendon was also hurting and the doctor indicated that we should just keep an eye on it while the other one healed from the surgery. I was hiking by the summer of 2007 and snow skiing that next winter. However, by that time, my right tendon was bothering me enough so I headed back to the orthopedic surgeon. A MRI revealed tearing and the same surgery was performed on the right leg in April 2008. I recovered and was back to snow skiing by December 2008. Never the less, my legs never felt the same way before the surgery.

Putting it all Together

In January of 2009, I began to experience pain in the middle joints of my fingers on both hands. This was accompanied by morning stiffness and a lot of fatigue. I also had chronic hives, usually in the evenings, on my arms and legs. I visited my regular doctor and told him of my symptoms. After describing my history with the eye problems and Achilles tendon tearing, he began to suspect that I had an autoimmune disease – like rheumatoid arthritis (RA). One clue is that symptoms presented symmetrically on both sides of the body…iritis in both eyes, Achilles tendon problems on both sides, etc. He mentioned that fatigue is also a common symptom. He referred me to a rheumatologist – a specialist in arthritis and associated diseases.

After completing a long medical history survey, multiple office visits, numerous blood tests, and hand x-rays, the rheumatologist said that I have some sort of autoimmune arthritis. My blood tests were negative for rheumatoid arthritis factor (about 20-30% of people are negative but have the symptoms). But the bottom line is that this is a clinical diagnosis based on symptoms. There is no single blood test. He initially called it seronegative arthritis or spondylarthropathy. Some call it seronegative rheumatoid arthritis. Sometimes, blood tests convert to positive over time. Doesn’t matter to me – I knew I felt bad.

Autoimmune means that your body’s own immune system is attacking itself. There is no known reason why this happens. Similar autoimmune diseases include ankylosing spondylitis, psoriasis, Crohns disease, and lupus. Autoimmune arthritis differs from the more common osteoarthritis in that its cause is immunological, not trauma induced. Most people will have some osteoarthritis by the time they are in their 60s. Autoimmune arthritis affects millions of Americans and can start anywhere from the 20s-50s.

Since x-rays of my fingers revealed the start of bone erosion, the doctor started me on a medicine called sulfasalazine which was supposed to reduce inflammation. I had a terrible allergic reaction so that got halted and I was put on methotrexate. This is an immunosuppressant drug that is supposed to slow the progression of joint damage. After three weeks on that drug, my body clearly told me it didn’t like it…constant nausea, headache, feeing like a truck ran over me, etc. So, off to the doctor I went again. By this time, joint pain had extended to the base of my fingers, both wrists, both elbows, and my knees. My ankles were always hurting since before the surgeries. At times, I could not lift heavy objects and even climbing the stairs was laborious. My joints popped and cracked when moved. I was stiff most of the day and the fatigue was worsening. The fatigue is the hardest part for people to understand. I describe it like having the flu. I was prescribed prednisone steroids to check the inflammation. This is fine for a short period of time but not long term.

The doctor finally put me on a “biological” drug called Enbrel. It’s a protein designed to attach itself to inflammation-causing chemicals released by white blood cells in the joints. It must be self-injected once a week – it doesn’t hurt too much. The drug is made via a recombinant DNA process where an engineered human gene designed to produce the protein is grown and harvested. The retail cost is $1,800 a month! Thank God for insurance coverage and a $25 co-pay!

At this point, I slowed down on work, church, and other activities in an effort to rest and give some time for the Enbrel to work. After about 2 weeks, today is the first day that I didn’t wake up too terribly stiff and I actually had energy the entire day – didn’t even take a nap! I’m hoping this is a sign that Enbrel is starting to work – it usually starts working in a couple of weeks with full impact over a few months. But time will tell. Enbrel and related drugs suppress the immune system so I have to stay vigilant for infections. There is no cure for arthritis. But people successfully receiving treatment go on to live normal lives. My goal is to snow ski again next winter!

Some of the hardest parts of dealing with this are the drawn out processes of diagnosing, figuring out treatments, and explaining to people what’s going on. And you never know what’s around the corner. Flares can come and go. But through all of it, I’ve come to rely on God, family and friends. I have hope for the future. I have hope that medical treatments will work. I have hope that God will heal me. There is no big celebrity carrying the flag for arthritis. There is no special ribbon to be worn (maybe a DNA-shaped helix ribbon would work!). But I hope everyone reading this will be more aware of the issues. Ask questions. And above all, pray for me.

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