It’s been quiet here on the blog. My apologies. Many of you know I’ve been struggling with some health issues, while still trying to keep up with my many blogs.

So, although there is much to report, I think I have enough things to report on the health side to justify a whole post.

First, the background. After 1.5 years, doctors have tentatively diagnosed me with TOS. Tentative because my symptoms are constant not intermittent. I have since begun massage therapy, which significantly increased my pain as an old whiplash injury has surfaced with a vengeance and severely impacted my daily life. At first, I spent much of my time on the couch and avoided the car, which caused my neck to absorb the vibrations of the road.

So, we bought a new car. Better suspension. That helped. Slowly, I was able to stay upright for longer periods of time, but I still had significant neck and posterior shoulder pain. In a very timely coincidence, I was speaking with Ianiv’s new colleague, Mark Schneider, who suffered from chronic pain as well. He recommended I switch massage therapists and managed to get me referred quickly to his own, who is a naturopath of sorts.

This person is a craniosacral therapist and has approached my pain from a more well-rounded perspective. She is incredibly forthcoming about how she wants to treat me and is very good at what she does. Instead of painful massage sessions, she keeps me longer, releasing surface tension before doing deep tissue scar repair. This has been very successful thus far, and although I may not understand what she does, whether it’s Ch’i or color baths or Chinese medicines, I am happy with her progress and hopeful she can help.

My search for the perfect pillow was sort of successful. I tried so many pillows, it was incredibly frustrating. I spent 2 weeks looking for a latex pillow recommended by my doctor, and found it at Walmart, of all places. However, although better than others, it was still too high in the rise. I then tried a Tempurpedic one. Too hard. So, I gave up on my quest for comfort and support, and just went for comfort. I went to a linens store and tried all their pillows. I chose a soft down pillow, which allowed my to sink to bed level without applying pressure. They were out of stock, of course, so they had a new one made. I was very excited, but a few nights proved that it was not as soft as the one I had tried. I cannot sink without pressure. I believe that this is due to the fact that the demo pillow was used more, so I will stick to it.

So, my sleep is 50% improved. Some days are better than others. I still toss a lot, and sleep too much on my side, which ends up hurting my neck, but at least I can sleep some. And my headaches are reduced.

After speaking with my doctor, my headaches were identified as a result of an additional injury to my occipital bone. Although they feel like migraines, they are not. The medical condition is called occipital neuralgia, which is the result of muscle tension and damaged nerves. Fun stuff. The symptoms of this are chronic neck pain, with additional pain to the back of the head and behind the ears. When the back of my head is very bad, it causes a headache. You can actually onset one with simple application of pressure. At this point, we are not treating this condition outside of massage, although we may have to.

Now, I have had another MRI and another EMG. Both clean and healthy. The vascular surgeon thinks that my TOS will be treated via repair of the soft tissue injuries, so I will stick with the massage, but also add on a physiotherapist, chiropractor, a rehabilitation specialist, and a spinal injury specialist. If possible, I will also attend a Feldenkrais physiotherapy clinic and, although I would like to avoid it, I might need injections into the muscles to force them to relax.

How I will have time (or money) for all of this, I am not quite sure yet, but at least there is some progress in my diagnosis and treatment, albeit frustrating progress that feels somewhat like we’re going backwards instead of forwards. Only time will tell how successful these treatments will be. For others with chronic pain, I hope my notes will help you also find better treatment options.

Tags: health, chronic pain, tos, thoracic outlet syndrome, occipital neuralgia, headaches, migraines, pillow, pillows, whiplash, neck pain, spinal injuries

I have been seeing my massage therapist for a month now, and have learned some good lessons.

Lesson #1: Massage therapy is not massage.
Lesson #2: It has to get worse to get better.
Lesson #3: Pain is an enemy within that fights for control.

Massage therapy is intensly painful. My sessions are for an hour and focus on my back shoulder areas, my neck, and the front of my shoulders. The "massage" consists mostly of grabbing, squeezing and pulling the muscles very slowly. Pushing down a lot. I spend my time focused on relaxation and breathing. Being tense would only make it worse.

What I’ve slowly been learning is that the massage pain is "good pain". That through the pain comes healing. During the sessions I try to focus on understanding the muscles and the tenseness. Pay attention to what is going on. Now that my muscles are indeed relaxing during the sessions, learning to accept the treatment, it’s quite a noticable sensation. As if the muscles explode with pain and then sigh… and relax. Just a bit so far, but noticably I can feel the relaxation. And sighing is the best analogy I can make.

I’ve learned a lot about my body from the massage. Two particular areas on my neck and shoulder flare up an exlosion of pain in my head – which explains to me why I’ve been having headaches this year and not before. I’ve learned from the resulting pain what makes it worse and what better. When my neck was fine before I would probably abuse it. Sit sloppy or lie on my side. Things which probably overall made me worse off, only now I can feel when I do things I shouldn’t.

After the massage sessions I have some aches but not the intense pressure. The first massage session brought up the pile of issues in my neck and shoulder that I didn’t know about before (hidden issues which could be the cause of my nerve pain), and now we’re addressing that new pain in each session. The pain in my arm is a secondary pain to that I have now. I know how to deal with nerve pain now, but the muscle pain is a new experience.

After the massage I have a window of about 2 days (growing longer) when the pain is less intense, but then the muscles begin to tense and it returns. Then I spend most of my time lying down with heat and/or ice on the neck and shoulder areas. It’s rather boring. Anything requiring me to hold up my head, basically anything, affects my neck. I feel all vibrations, from that in music to that in cars. My sensitivity is extreme.

I had my latest massage today. My neck feels better than yesterday (a bad day that started at 5am and involved lots of couch time) but my shoulder is pinched a bit.

Pain is like another person within me. I daily fight to be in control of it, not it of me. Most days I can shunt it to the side, place it in a mental box and know it’s always there, but that it is not the forefront of my thoughts. Some days, especially recently with this new and unlearned type of pain, the pain controls me. "I" get placed in the box off to the side, and the pain rules my day. It takes control of me mentally and physically and that is incredibly frustrating.

I am working to learn this new pain. To understand how it works to overcome it. The therapy is one resource. Hopefully after seeing my specialist I will get the Botox to relax some muscles. But mentally I will need to understand my latest enemy and to conquer it.

Tags: pain, chronic pain, therapy, massage therapy

BlogHer this year challenged me not just mentally, but also physically. I had a hard battle with my chronic pain, which not only made me frustrated and annoyed, but also disappointed me.

I recently started massage therapy for my TOS. It has thus far been very painful. The treatments are painful, but I work on my breathing to relax – being tense would only make it worse. I get a brief two days of relief from the treatment, and then subsequently feel worse. Especially in my neck area, not so much the nerve pain.

This year at BlogHer I had one of my first comparative experiences regarding my pain. Attending the conference two years in a row showed me just how much worse my pain has become, despite my lessened reliance on pain medications. Mentally I can deal with pain – constant pain has taught me how to manage.

When my pain goes above a normal threshold level, I have a routine in place to handle it. Tylenol if it’s my arm, advil if it’s my shoulder or neck, and as a last resort, a prescribed narcotic to relieve my symptoms. These days I go take a nap to amplify the tylenol’s effect and lessen my reliance on medications.

I didn’t have these luxuries at BlogHer. Both days I took myself to a quiet bench for an hour to lie down, which was a partial relief. But both days I left early in the evening networking sessions. It pained me to have to do so, but I was unable to overcome my pain. I had to miss networking and socializing with my fellow BlogHer’s and turn down dinner plans – something I did with much regret.

Both nights Ianiv drove me home blasting the A/C to lessen the nausea and headaches the pain brings on. And once home, I went for the narcotics and rest to try to regain my sanity.

The flight home was agony. I hate airplane seats. I don’t do well with bucket seats because they push my shoulder forward and increase my pain. I can only be so creative with pillows. This time I asked for ice, and it was helpful.

Today I lost my battle with pain. My morning medications did not relieve my pain, and my regimen of nap + meds had no effect. Not even the narcotic. I grew fairly desperate as I could not even type – my fingers were sore and my arm half asleep. So, I turned on the heating pad (something I hate doing in summer) and slept on the couch for 4 hours. Not moving. I had my cats for company, which was soothing.

I feel somewhat relieved. My arm feels like it weighs five times as much as the other. And I am still a bit feverish. I am sad that it interrupted my conference experience and that it affects my life in this way. I hope sharing this experience will be a comfort to others in similar situations.

Tags: pain, chronic pain

My doctors (with the aid of my latest specialist, a vascular surgeon) have finally given me a diagnosis for the chronic pain I have had since November, 2004. It’s called thoracic outlet syndrome.

There is very little information about this syndrome on the web. This same lack of information makes it difficult for doctors to know of, diagnose, and treat the problem. However, I pulled up some reference to it online that will help to explain my diagnosis.

What is the Thoracic Outlet?

The space between the rib cage and the collar bone through which blood vessels and nerves (3) go from the neck & thorax to the arm via passage between the scalene muscles (6, 7).

What is Thoracic Outlet Syndrome (TOS)?

TOS is pain, numbness, tingling and weakness in the affected area (my left arm) caused by pressure on the nerves & or blood vessels (mostly the nerve for me).  In most cases the symptoms are intermittent (mine are constant). The diagnosis for TOS is not easy to make as negative test results (MRI, EMG) do not rule out the syndrome.

What Causes Thoracic Outlet Syndrome?

TOS is caused by a compression of the nerves and blood vessels. This can be due to an extra rib, old fracture, scarred tissue, or even large breasts (causing the shoulders to droop). All causes are not known.

Some people are born with extra scalene muscle fibers in both thoratic outlets, narrowing the passage (for example, I have no pulse when my arms are above my head), but this may or may not lead to TOS. In my case, it did. My diagnosis is partly a mystery, but these larger muscle fibers, and some scarring from an old whiplash injury, were partial contributors.

In my case, the pain is constant and has no main trigger to make it worse. There is no obvious compression on the nerve, but it is clear that TOS is the cause (finally). Additionally, there is some concern re: the nerve passing through my elbow, as that may also be too narrow.

Treatment

Treatment varies per patient, but usually starts conservatively. My treatment will include:

• physiotherapy (Feldenkrais – a specialized type of physiotherapy)
• massage therapy
• rehabilitation therapy (to address the whiplash)
• posture correction
• exercises
• ergonomics and frequent posture changes
• acupuncture
• Botox (to relax the scalene muscle)
• combination of medications
  • neurontin/gabapentin – for nerve pain
  • tylenol – for pain
  • advil – to reduce muscle tension
  • cyclobenzaprine – muscle relaxant while sleeping

Additionally, I will be getting another MRI and another EMG (not looking forward to that) and joining with a new neurologist for consultation. It is hoped that this combination of aggressive therapies will relax the muscles, which act in a vicious cycle to compress the nerve, which makes me tense, etc.

Surgery for Thoracic Outlet Syndrome is the last resort. Surgery would involve removing the scarred tissue and perhaps widening the thoratic outlet. Aggressive therapy would still follow the surgery to correct posture and relapse into TOS.

So, that is where it stands. I am happy to finally have a diagnosis (rather than just ‘chronic pain syndrome’), albeit one that is not easy to fix. I am looking forward to beginning therapy, but am not looking forward to paying for it (I don’t have extended medical at the moment).  

Tags: thoracic outlet, tos, medicine, diagnosis, nerve, chronic pain