Last visit

I’ve been seeing Mark (my orthopedist—that’s him in the photo) every six weeks since my surgery in March, and I always take a written update in order to better describe any changes. This is yesterday’s update.

“Until ten days ago, the pain in my right shoulder was worse than when I last saw you, and the pain in my left shoulder had increased to the point that both shoulders interfered greatly with my sleep. They hurt similarly, as if someone were jabbing them with broomsticks. Percocet only quieted the pain enough for me to sleep an hour or two at a time, and it made me itch considerably even with the Benadryl. My middle back below the shoulder blades continues to hurt day and night, and I can’t sleep comfortably in any position.

“I had long feared that the shoulder pain would become bad enough that I would have to sleep in a chair again. I dreaded doing so, but was glad to know that I at least had a way to escape the worst of the pain if all else failed. All else did fail so, two weeks ago, I returned to a chair only to find that the pain in both shoulders was as bad there as in bed.

“I saw no change after my thirty days on a raw food diet, so I stopped both it and the acupuncture three weeks ago, and started taking SAM-e, MSM, glucosamine, and raw ginger. I am also drinking an extra gallon of water each day and have doubled my intake of fish and fish oil.

“Ten days ago, the nighttime pain in both shoulders began to decrease, and I have since been able to sleep three or four nights without medication, although I still use ice packs all night every night. During the day, my right shoulder, at its worse, still hurts as if a bee were stinging me deep inside the joint with the pain radiating down the outside of my upper arm. At its best, the joint itches so badly that I feel compelled to scratch it, although scratching does no good. The left shoulder feels slightly stiff during the day but is seldom painful.

“The following is a comprehensive list of factors other than arthritis that can cause continued pain after tendon repair. I’m enclosing it on the off chance that you might have overlooked some rare problem.”

“Brachial plexopathy, Cervical radiculopathy, Long-thoracic neuropathy, Neoplasm, Reflex sympathetic dystrophy, Spinal-accessory neuropathy, Suprascapular neuropathy, Thoracic outlet syndrome, Adhesive capsulitis, Articular cartilage defect, Bicipital tendonitis, Instability, Lateral tears, Acromioclavicular arthropathy, Deltoid insufficiency, Rotator cuff defect, Subacromial impingement”


The fact that the right shoulder seems to be improving precludes a joint replacement on that side—the side he operated on in March—and only in my worst moments do I contemplate one anyway because, once the bone is gone, it’s gone forever, and the replacements just aren’t that good. The 70% tendon tear in the left shoulder doesn’t justify the risks of sewing it up in the absence of significant pain or disability. I have had both, but since they seem to be lessening, Mark suggested that we hold off, and I happily agreed. We didn’t schedule another visit.

I left his office with mixed feelings. Although he hasn’t been able to do anything to help me—other than narcotics and sleeping pills—since my surgery on March 27, I took comfort in having at long last found a doctor I could trust and talk to, and I feel a little lonely now that I can no longer say, “I’m under the care of a physician.” Or a physical therapist for that matter. I’m entirely on my own, and I fear that I still have a long way to go. Fortunately, what I have already gone through has made me stronger on the inside even while debilitating me on the outside.

19 comments:

Diana said...

Dear Snow,
There are no words that I could send to you that would lessen your pain. This much I know first hand. Although I am sure that your pain is much more severe than mine.
So just know that I am thinking about you and will be hoping and praying for you as well!
And yes it makes you way stronger on the inside, like it or not.
Love Di

RNSANE said...

As a nurse for nearly 45 years, it always saddens me to hear these stories. One wants patients to recover and feel better. However, since I have continued to suffer from chronic pain post laminectomy and fusion over 25 years ago
( though I continued to work ) and, now at 65, have both cervical and spinal stenois and multiple areas of arthritis, etc, my body hurts. I read, with interest, some of your remedies. I wish you success on all of your efforts at treatment - and the best physician you can find. Aging is a bitch!

Gaston Studio said...

It's a little early for me to be totally cognizant so... did I understand correctly, that your doctor AND your physical therapist has released you because there's nothing else they can do for you? Yet, you're still experiencing very bad pain on a daily basis? WTF!

If all this is truly the case, does this mean you're going to pursue alternative treatments and conduct your own physical therapy?
Sorry this comment is full of questions Snow, but sheesh! So, just to keep up the flow I've started, here's another question: have you tried one of those pain managment places?

Jane

Sonia ;) said...

Do you fell like your back to square one with this doctor too?

Im working from home...alot nicer let me tell ya. I can move around without the whole office looking at me like Im nuts(yes I am but thats not for them to know). Problem working from home is two pugs who think because Im here its for there every beck and call....Thats a new training session. Going to have to contact Cesar Milan. Im hugging ya...so shaddup...missed ya

xoxoxoxox

Renee said...

Dear friend, I so wish that you had no pain, but you already know that. I am so sad reading this because I know how hard it can be living in pain and though you describe it so well it still isn't all of it, is it? How it can makes us feel all the time.

I am happy that maybe the new things you are trying are helping.

But how come you are left out in the cold now. I don't understand how he is still not your doctor and don't you need another follow-up?

Love you dear friend.

Renee xoxo

Marion said...

I'm glad to hear you're doing better, Snow. You are fortunate to have had a good doctor. Ever since my back surgery last April, I've steadily gone down hill and virtually have no physician care. He gives me medication, but only two weeks worth at a time and I have to call it in 48 hours in advance, then it's seldom ready. Just getting my medication has caused me great stress. Just yesterday his nurse cussed me out because I called to see if my prescription was ready and I've been without medication for 2 days and in so much pain I can barely stand or walk. The surgery caused me to limp and now both of my knees are inflamed and I have no feeling in my right foot. And to top off this happy tale, I'm on workman's comp and they keep refusing my request for a 2nd opinion or for a pain management doctor. Can you say depressed??? Maybe I should get you to come down here and talk to my doctor for me. LOL! No, I've given him detailed written reports, etc. to no avail. He wants to do more surgery and I told him it would be a cold day in hell before he touched me ever again. We're at a mexican standoff, so to speak.

I'll have to try your fish oil diet and see if that gives me any relif. Love & Blessings!

Snowbrush said...

Because many of you misinterpreted me, I can but assume that I didn't express myself well. I don't feel at all abandoned by my doctor or my physical therapist. Either would be happy to see me again if I thought it appropriate, but here's the thing. The only remedy the surgeon has to offer is more surgery, but it's the patient's call--based upon how much pain he is in--when more surgery is appropriate. Because the things I'm doing for myself seem to be helping, I'm not ready to make that call. Besides, it takes about a year to recover completely from the surgery I've already had, so simply giving myself more time to heal is something else that I'm actively doing. Having had a great many of them by now, I can tell you that no surgery should be taken lightly, especially a surgery in which your real joint is removed and an artificial joint is inserted, because artificial joints just aren't that strong or long-lasting.

I (me, myself) elected to not make another appointment with my orthopedist--he did not tell me not to come back. He just made it clear that surgery, emotional support, and prescription refills was all he had left to offer. The emotional support I can do without, and the prescriptions I can get by calling him on the telephone.

The same was true of my physical therapist. I couldn't tolerate the exercises, and the acupuncture my therapist was doing wasn't helping. These things were ALL he had to offer, so why keep going if they're not working?

I've learned over the years that the "experts" are often at a loss. It's not that they don't want to help or that they're holding back; it's just that they only have so many weapons in their arsenal, and once those have been fired, the arsenal is empty. The limitations of my caregivers are why I try so hard to take an active role in my own care, but not by just trying any and everything that comes along (as it may appear), but by going to places like the Arthritis Foundation and seeing what they've found to be helpful.

So, just know that I am doing better after seven months of bad pain and three years of lesser pain. My optimism level is up, and I feel very self-congratulatory that I have been persistent in looking for ways to help myself as opposed to only looking to the experts for help or else succumbing completely to despair. I have shown more bravery and more optimism than I knew I possessed.

Now, Marion, I am just sick over your mistreatment. Yes, I AM lucky to have had a good doctor, but I went through three not so good doctors to get to him, and you're stuck with the asshole you already have. All of the things I've tried are supposed to help arthritis and inflammation. If I were to guess which one has done me the most good, it would be the SAM-e. I get it at Costco (maybe they would sell it to you on-line without a membership; I don't know). A month's worth for me (you might take less or more than I do) is $38 if it's not on sale. I would have tried it sooner if not for its relatively high price and relatively low amount of supporting research. It also has anti-depressant properties.

It is supposed to work within 7-10 days or you increase the dosage. You will have maxed out the dosages within a couple of months, which means that you could determine whether it was helping you for under $100. Glucosamine takes longer (up to 4 months according to my orthopedist), but it has gone through more trials. The Omega-3s in fish and fish oil also reduces inflammation, but if you elect to take large doses of oil and eat a lot of fish, be sure you buy fish that is low on mercury. I can send you a link if it would help. Ginger and turmeric also reduce inflammation, and they're cheap and delectable. Drinking lots of water can't hurt (unless you go completely off the deep-end about it), and it does seem to help a lot of things.

RNSANE said...

Snow, I think your post was quite clear. It sounds like your orthopedist is quite good but a surgeon is a surgeon and, while they may certainly suggest alternate remedies to help one deal with injury, trauma, and orthopedic issues, their training is geared toward operative management, for the most part. When my 24-year-old division one decathlete suffered a rotator cuff tear in his final event of his college career ( a javelin throw when he did not have sufficient warm up time racing to that event from his last event ), after two months of PT, and an MRI, Dr. Belzer still wasn't convinced he needed surgery. He told Jeremy, "I'll get in there and take a look, then I'll decide what needs to be done." Jeremy got a second opinion but went back to Dr. Belzer who DID end up doing surgery. When he did the arthroscopy, there was indeed serious pathology there. Since Jeremy had gotten his degree in kinesiology, Dr. Belzer gave him his DVD of the procedure. His concern was recovery since his goal is to be a firefighter and he'll need that shoulder! He had completed the firefighter training long before pursuing kinesiology.

Snowbrush said...

RNSANE "When my 24-year-old division one decathlete suffered a rotator cuff tear..."

I had a 70-80% tear in both shoulders in the supraspinatus tendon, plus impingement, plus advanced arthritis. If all your son had was a tear, then it should have been an easy fix at his age, although the recovery time does drag out as it takes months for the tendon to heal.

lakeviewer said...

Snow, I'm saddened to hear about your pain, and sorry not to have any word of comfort. FRom the rest of the comments, everyone else understands and can relate. I just feel so helpless and tongue-tied. My eldest son has spondalitis, an arthitic spinal deterioration, in pain most of the time. His doctors are trying to isolate his genes and address his pain that way. Still, he is not cured; and we don't know how he will handle all that pain.

You are to be congratulated on your spirit, your courage and determination. May God ease your misery.

Snowbrush said...

P.S.

RNSANE "It sounds like your orthopedist is quite good but a surgeon is a surgeon and, while they may certainly suggest alternate remedies to help one deal with injury, trauma, and orthopedic issues, their training is geared toward operative management"

YES! It's like the old saying about how, to a carpenter, every problem calls for a hammer. An orthopedic surgeon can have you tested, prescribe physical therapy, give you steroid shots, and prescribe painkillers. When these measures fail, the only option they have left is surgery. They, as a rule, DON'T stay abreast of the latest alternative treatments, but self-help groups like the Arthritis Foundation do, and it is entirely possible for the patient to know more about such things than his doctor. The patient should never just turn himself over to his doctor with the thought that, here I am, fix me. Doctors are simply too limited. For example, of the four orthopedists I saw, every one of them came up with a slightly (at least) different diagnosis, and yet another doctor (a neurologist) didn't even believe I HAD shoulder problems. She thought I had a nerve problem in my neck.

Marion said...

Thanks for this info, Snow. I'll definitely give the Sam-E a try. I've heard of it and I think it's available at Wal-Mart. I'll check around to see who has the best price. I do take the Glucosamine and it doesn't seem to help. I also take Calcium with Vitamin D. The surgery I had removed a chipped disk that was pressing on my sciatic nerve, but he bruised the nerve or somehow damaged it during surgery. Of course, he denies that and says my pain is 'in my head'. Ha! Some days I just sit and daydream of doing surgery on him...and I'm removing certain parts that he could live without but his voice will be much higher. I really do appreciate you, Snow-man! (By the way, I finally got my medicine today, only 3 days late!) Blessings!

Chrisy said...

Really pleased to hear that there's been some progress Snow...that SAMe stuff sounds interesting...I had to look it up to see what it was...and I agree with you about doctors...yes there are many fine ones but they're human not gods (remember when we all used to think they were...along with religious clergy..) so we have to take control of our own treatment...it sounds like you're doing just that...and thanks for sharing your treatment combo...am sure others will find it useful...

Mim said...

I was reading this and feeling your positivity, then I started reading the comments and felt confused - maybe I misunderstood - but your explanation helped me. I think that you are still way far in the woods, but perhaps you have found a trail that will lead to the main path and that path will lead you out of the woods of pain.
I hope

Just_because_today said...

Snow, chronic pain is so debilitating but more so frustrating because it feels that it is in control.
you seem to have a good outlook and are constantly trying to find a way to heal yourself. Something will click and one day that pain will be gone.

Kathy said...

Oh gee, I'm sorry to hear you've been in such pain. I had no idea. A good friend had a shoulder replacement last week. His story of the pain at night sounds very much like yours. I hope you don't have to go through that.

You are a very good writer, but I already knew that.

Good to see you today. Hang in there. Sounds like you are doing everything right.

nollyposh said...

(((Hugz))) Perhaps in truth we are all alone when it comes to decisions about our individual health

All Consuming said...

Aye it makes a huge difference having someone treat you who actually seems to understand your pain. I spent 3 years under no specialists, and had no treatment other than the painkillers and it did feel a bit scary at first, and then it was just life again. I knew when I had no choice but to seek more help, poor as the help was then, you will too of course. It sounds like good news to some extent and that's always a good thing. Keep that grin plastered on hon, you're a star, and your blog helps both you and many others methinks. xx

C Woods said...

I can't imagine what you are going through with your pain. I have lower back pain which flares up when I stand for more than a few minutes (but not when I walk) or if I have to bend over, especially if I bend just a little, getting something from the refrigerator or taking laundry from the dryer.

But as soon as I sit, it goes away completely. And I have figured how to arrange a bunch of pillows under me to make sleep comfortable most of the time. When it gets bad, I retrieve a cold pack from the freezer and take an extra pain reliever.

Reading about your pain makes me want to cry. I am cranky if I don't get my 7-8 hours of sleep ---not being able to sleep more than an hour at a time would turn me into a monster. Yet your disposition still seems so pleasant.

Your horrible pain does one good thing ---it makes mine feel like a mere annoyance.

I hope it improves with time.