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Posts Tagged ‘pain’

It’s been six weeks since right shoulder surgery was performed in order to resect the acronomim and clavicle joint (AC joint) and remove rotator cuff tissue that was damaged by bone spurs. At a follow-up with the surgeon today, he indicated that patients tend to talk about still having pain but of a different quality. This is true for me in that the joint pain is much diminished but dull aches remain. He said this is primarily from healing bone and surrounding soft tissues. He cleared me for stepping physical therapy up from gentle stretches to strengthening exercises. Given my battle with RA, he said that recovery is likely to be longer than normal.

We then turned attention to my left shoulder as it’s been bothersome for quite some time as well. The surgeon gave a steroid injection into it about 8 weeks ago but there was only about a week of relief. He got an x-ray during the visit and discovered that there was acronomim bone rubbing on clavicle bone with no joint space visible. He attributed this to inflammatory arthritis (RA) and said that the cartilage between the bones was damaged but there were no large bone spurs visible. Like with the right shoulder, surgery would be needed to repair this joint and he suggested waiting at least three months after the other surgery. This would be good timing as my insurance out of pocket costs are met and will be until the end of June. We will schedule surgery at another follow-up appointment in six weeks.

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The past few days have been a whirlwind of medical activity. Even after cervical surgery last year, I’ve experienced continuing pain in neck, shoulders, and arms along with number and tingling in the fingers. We knew that there were bone spurs pushing on nerve roots as they couldn’t remove those during the first surgery which was from the front (anterior). And a physical therapist working on my hips and legs suggested that some of the symptoms might be related to spinal nerve issues. So off to the neurosurgeon I went and he wanted to see the entire spine.

On Wednesday, I spent the entire day at the hospital from 6:30 a.m. to 4:30 p.m. This was a scheduled myelogram (injection of contrast), CT scan, and follow-up appointment with the neurosurgeon. The contrast injection is done by a radiologist under the guidance of x-ray machines called fluoroscopes. After three numbing lidocaine injections that were each deeper into the spine, he inserted a needle and slowly injected the iodine contrast into the cerebral spinal fluid (CSF) that bathes the spinal cord and brain. The table is rotated up and down to get the contrast to move around the entire spine. This process was relatively painless. I was then wheeled into a CT machine for a series of images. I then spent a few hours in a recovery area for observation before heading to the appointment with the surgeon. The images revealed the bone spurs in the neck and an additional herniated disc in the lumbar region. The surgeon recommended that surgery was not warranted for either situation. This is good news but fails to help with the bothersome symptoms. I have an electromyography/nerve conduction test with my neurologist later this week to try to find more answers.

Upon returning home that evening, a headache began to build. This was expected and I remained lying down as much as possible and drank plenty of fluids. The next day the headache pain became unbearable and excruciating upon standing or sitting upright. It was accompanied with ultra sensitivity to any stimuli along with dizziness. The pain was much worse than any migraine I’ve ever experienced. I finally called the radiology on-call number and the doctor immediately sent me to the emergency room where I was hooked up to an IV and given fluids along with Dilaudid narcotic pain medicine. The ER doctor suspected that I had a spinal fluid leak from the previous day’s puncture. But he had to rule out an infection – meningitis. In order to do that, he drew lots of blood and conducted another spinal puncture in order to draw CSF for testing. After about an hour the doctor came back and said that they found a small amount of white blood cells in the fluid where there should be none. He also said that if there was an infection, the white count would likely be in the thousands. He was in a quandary on what to do as a culture of the fluid would take 24-48 hours. So he gave me two heavy duty antibiotics which took over three hours to infuse. By then a microscope examination of the fluid showed no visible bacteria. After consulting an infectious disease, neurologist, internist, and anesthesiologist, the ER doctor decided that I likely did not have an infection, discharged me, and wanted me to come back the next day for a spinal blood patch.

After a fitful night of sleep, I returned to the hospital to the surgery center. I was in serious pain and could not sit in the waiting room. I threatened to lay down on the floor! I was taken to a procedure room and an anesthesiologist put in an IV and conducted a third spinal puncture. This time the needle went into the epidural space just outside the spinal cord. He then took out about 20 ml of my blood from the IV and then slowly injected it into the spine. When the blood clotted, it would form a patch over the hole that was leaking the CSF. I could feel the pressure build as the blood went in and pain began to form around the spinal cord and corresponding nerves into the hips and legs. This was actually the most intense pain of the three days and they injected a few doses of fentanyl narcotic. I had to lay flat on my back for two hours.

After about 36-48 hours, the pressure and pain in my head are slowly subsiding. It’s been a tough few days and I’m glad it’s behind me. Now to figure out what all is contributing to the continued pain, numbness, and muscle weakness and how to proceed.

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It’s been three weeks since I had an anterior cervical discectomy and fusion (ACDF) surgery on vertebrae C5-C7. I outlined the procedure in an earlier post. Immediately upon coming out of surgery I could feel a positive difference in arm and shoulder pain – the site of most of the symptoms from herniated discs and bone spurs which pressed on my spinal cord and nerve roots which extend into the shoulders and arms. There have been times since surgery when I’ve experienced some finger tingling, arm pain, and shoulder spasms but that is to be expected as the surgery site recovers and the overall trend has been positive.

During ACDF surgery the neck vertebrae are expanded back to their normal distance apart after the herniated disc collapses. The disc replacement, in my case a plastic cage seeded with my own bone tissue, returns the space back to normal. I could tell things were stretched out as the muscles in my neck were tight and painful immediately following surgery. This subsided after a week or so and I can feel that these muscles are loosened up. Maybe I grew taller in the process!

neck scarIt looks like I got into a knife fight and lost (see picture) – but you should see the other guy (well, he got paid a lot of money). It’s pretty amazing that they can perform such a dramatic surgery through so small an incision. The surgeons rely on microscopes for parts of the procedure. There were no external stitches or staples in an effort to minimize the scar. It is in a rather conspicuous place. But like with similar incisions from other surgeries, I suspect that the scar will diminish over time.

Physical activities remain restricted. You are instructed not to lift anything over 5-10 pounds. This is the hardest restriction to follow as I find myself wanting to engage in regular activities around the house. I have to constantly catch myself and ask for help. Walking is highly recommended from the beginning and I’ve been doing about 1 mile each day. Since no longer taking narcotic pain meds, and getting some movement back in the neck, I did drive a short distance to the grocery store this week. Long drives are probably out for some time until more muscle strength is regained.

Rheumatoid arthritis symptoms flared after the surgery with increased joint pain and stiffness. Fatigue also increased but that could be from the recovery process. Flaring is to be expected given the stress put on my body from the anesthesia and surgery. Taking NSAIDs or steroids to help is not possible as they negatively impact the bone fusion process.

A follow-up appointment with the surgeon is in three weeks at which time they will take an x-ray to make sure the hardware remains in place and to check on the status of the bone fusion. It will be interesting to see the titanium hardware! The vertebrae can take 3-12 months to fully fuse.

At this early point, I am glad that I had the surgery. But time will tell if symptoms will continue to improve.

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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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For thousands of years and across many cultures, marijuana, or cannabis, was touted as possessing medicinal properties. And its use for both medicinal and recreational purposes is gaining in popularity in recent times. Some activists are advocating its use for rheumatoid arthritis. My desire is that RA patients will carefully consider all treatments for their disease. The topic must be raised in public forums and from scientific perspectives. I realize that this article will likely bring about a slate of responses, both for and against. Such is a nature of controversial topics…

…read the rest of this post at http://rheumatoidarthritis.net/living/medical-marijuana-a-viable-option-for-the-treatment-of-ra/

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medrolRA created a desperate situation. Joint pain, stiffness, and swelling are at high levels. You know it’s bad when one can notice swelling in a skinny knee (just ask my wife about my bird legs). My rheumatologist commented the other day, “your hands feel hot today” intimating that inflammation was busy at work. Energy levels are such that simple daily tasks like cooking dinner are difficult. Cognitive functioning is so impaired that tackling issues at work and home are close to impossible (missed work…that’s another issue for another day). Systemic inflammation seems to running rampant – a recent C-reactive protein test was near an all- time high for me at 1.6 mg/dl and it’s been this high for the past four months. Tweaks to long term treatments are yet to show an impact.

It’s hard to believe but I actually asked my rheumatologist for steroids in an effort to knocks things down a notch. If you’ve read this blog over the past few years, you know that I’m not a big fan of corticosteroids (see earlier posts on Prednisone Side Effects, Love/Hate relationship,  and  my first post on the subject where I compared them to Nuclear Weapons). A stash of prednisone pills sits in my bin of prescriptions but it is avoided like the plague as the side effects often feel worse than the RA. My rheumy recommended something different and I agreed to try a Medrol Dose Pack which contains a batch of 4mg methylprednisolone pills titrated down over a period of days (see photo). I only had one experience with this approach back in 2008 when first diagnosed. These dose packs are used to treat a variety of inflammatory conditions (see package insert).

The first day brought a welcome burst of energy, much lower joint pain, an ability to focus, and the recurring headaches disappeared. It felt wonderful. Then it came time to sleep and it was clear that wasn’t going to be easy as my body and mind were both hyped up. An Ambien (zolpidem) sleeping pill was used to help which it did. Day two didn’t bring the same levels of energy and joint relief and I collapsed in a puddle left wondering if it was worth it. The next few days will serve as an experiment to see if rampant inflammation from the RA can be wrestled into submission by this powerful drug. If not, I’ll just have to wait to see if long term treatments will start working. After being through so many treatments over the past few years, my rheumy actually used the term “refractory RA” with me the other day which doesn’t engender much hope. In the meantime, I’ll seek any relief from any front including the corticosteroids I love to hate.

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YourLifewithRA Final coversm (1)Your Life with Rheumatoid Arthritis, by Lene Andersen

In today’s digital age, there is an unending list of resources on health and diseases generally, and rheumatoid arthritis specifically. Upon receiving a diagnosis, it’s difficult to know where to begin. Lene Andersen’s new book, Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects, and Pain, provides a thorough and easy to read treatise which addresses many aspects of living with RA. She attempts to get new patients to face reality while tempering that reality with hope. But this book is not just for the newly diagnosed. Veterans to RA will also gain insight, learn new ideas, and be reinvigorated to press forward in their fight with the RA beast.

When battling a chronic disease like RA, it is easy to become confused and discouraged. Through her book, Lene’s attention to detail and positive outlook is encouraging and full of hope. All topics are well researched and referenced. She provides links and connections to support groups. She deftly deals with touchy subjects like pain control, mood, choosing to take complex medications, side effects, and relationships. The writing style is easy to understand but she provides enough technical information to be helpful.

I could think of no one better to write such a book. Lene has faced a lifetime full of dealing with RA and this experience is infused throughout her writing. She is a well respected leader in the online RA community through her work at the HealthCentral.com RA site, the non-profit organization Show Us Your Hands, and her blog called The Seated View. Upon receiving a diagnosis in early 2009, Lene was one of the first people I met at Health Central and I was drawn to her calm, well reasoned, data driven, referenced, and clear responses within that online community. This book represents an extension of that same approach. I only wish that this book was available at the time of my diagnosis. I look forward to reading the next books in the series!

Lene AndersenI asked Lene a series of questions related to the writing of this book. Below are her responses.

1. What initially was the driving force behind the genesis of writing a book about RA?

I meet so many people who’ve had their feet knocked out from under them because of RA and no wonder — it can be a difficult thing to live with. The Your Life with Rheumatologist Arthritis series is a mix of being an RA veteran and my background as a social worker. I’ve had RA (well, juvenile arthritis) since I was four years old, giving me over 40 years of experience in living with the disease and everything that comes with it. I wanted to use that experience to help empower others to take control of their life and make the most out of it. To help people be able to live well with RA.

2. In what areas do you see the biggest need for quality information for patients with RA?

There are so many… I’d love to see more work being done on the systemic impact of RA. If someone gave me a magic wand, though, I’d wave it and create magical funding for much more research on diet and alternative medicine done with scientific rigor. So many people experiment with diet and alternative treatments and we have very little reliable information on the role these can play in managing RA. I believe that both diet and alternative medicine can help at the very least manage symptoms and have used an integrated approach to my care since I was a child. We need reliable scientific evidence to indicate what works and what doesn’t.

3. How has the ever expanding digital world impacted the distribution of information regarding RA including your book?

The Internet and the digital world have had a huge impact on helping people with RA to become educated and empowered. The ready availability of information just a click away is shifting the locus of control from doctors to the person with the disease. This is a very good thing. Technology has also allowed me to publish my book independently, rather than have to persuade a traditional publisher that a book about living well with RA is a good idea. Being an indie author meant that very quickly after the book was finished, we made it available to anyone with an e-reader, smart phone, tablet or computer at a reasonable price.

4. What was the biggest AHA or inspiring moment during the process of writing?

Very early in the writing process, I put together that first paragraph in the foreword where I’m having an imaginary conversation with my RA. In that story, I turned the tables on RA, making it uncomfortable and twitchy while I firmly put it in its place, saying “you may share my life — I will accept that — but you may not control it!” It frames everything that Your Life with Rheumatoid Arthritis stands for.

5. What was the highest hurdle to clear during the process of writing?

The rewrite. I had somehow believed that once I had finished the book, revising it would be a snap. It wasn’t. Somewhere deep in the process, someone told me the general rule seems to be that it’ll take as long to rewrite a book as it took to write it. It made me feel better about how long it was taking. It also made me want to bang my head against a wall.

6. How did you prepare a large manuscript while dealing with physical disabilities that impact your ability to type?

One baby step at a time. Even though I use Dragon NaturallySpeaking (voice recognition software) to write, I still face a limit of how much I can do in a day. That time is shared between my work as Community Leader at HealthCentral.com’s RA site, my personal blog, working with Show Us Your Hands! and managing a chronic illness. It meant I usually dedicated weekends to the book and weekdays for the rest of my commitments. Looking at the book as a whole was too overwhelming, so I parsed it into smaller goals of writing one chapter at a time. Once I was done with one chapter, I moved onto the next without looking at how much I still had to do. There were times where I got derailed into sheer envy when I heard of able-bodied writers hammering out 3000 words a day, but I tried not to focus on that. Instead, I put my head down and took it one (metaphorical) step at a time.

7. What will be the topics for your next books?

For the foreseeable future, I’ll be focusing on writing the next two books in the Your Life with Rheumatoid Arthritis series. Book Two is about adjusting to the many physical changes brought about by an RA diagnosis and Book Three will be about the rest of your life, including working, traveling, family, sex, parenting, etc.

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available from Amazon for the Kindle. If you do not have a Kindle you can download a free app for computer, tablet and smartphone here. It is also available for other ebook readers, including Kobo and Nook. A paperback version will be forthcoming in the Spring.

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