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
Arieanna, well, that’s bittersweet… at least you have some answers maybe. I really hope the progress you’re making starts to feel like progress soon and helps reduce your pain. If you would like a recommendation for a chiropractor, I have a great guy that I go to on the North Shore, who’s been treating me for 6 years for a bad back and always manages to get rid of any pain I have as a result of sleeping in the wrong position or headaches, in addition to helping with regular maintenance. Email me if you want his contact info.
Ugh. I cannot even imagine your pain. Hey everybody, did you know that, on top of all this, Arieanna responds promptly to emails, creates new banners for the b5media blogs for which she is Channel Editor, and stays on top of all kinds of business things?
You are an amazing woman. I am honored to know you.
Thanks Laura and Sheila. I try to stay positive and I guess that being aware of what I go through makes me very conscious of trying to stay on top of work. Sometimes it’s hard. I think there are a couple of your emails Sheila that I still have flagged ;)
Arieanna,
Wow, timely that I read your post. I just had my first deep pectoral massage this afternoon. I think that I am going be very bruised tomorrow.
Ice is not helping. She could not get seperation of the muscles (minor and major) even after 30 minutes. I felt bad for her her hands must have been so sore.
After it was done my therapist said “You have a very high pain threshold and don’t let anyone say you don’t”.
At least she has decided not to have me hyper extend my neck where the previous therapist was having me do this and any real work on my neck causes the cervicogenic headache which is absolutely debilitating and I think that anyone that has not experienced one of these has no idea what they feel like. Neuro gave me migraine meds which just make me sleep and I still wake to the headache. Last week had one so bad took vicodin on an empty stomache and spent the afternoon throwing up. But the headache had abated. They never really go away from us, do they? It’s always there smoldering in the occipital area always ready to creep up without warning.
I have all the symptoms of TOS but no one will say it, the neuro ignores the question and the therapists cannot dx and won’t. But they do recommend things to the dr and now I have 8 more weeks at 3 times a week to work out whatever it is that they won’t name. I am not stupid I can find the reason for the exercises just for the asking.
I also have spondylosis with stenosis in the c-spine with a worse lumbar spine. Today I had x-rays for the t-spine.
Pillows, I know all too well the pillow hunt. Back to my old beat up pillow that I can bend and curl anyway I need it. They are just piled around my room now and I just don’t know what to do with them all. Ah, well the cats have picked out their favorites.
Your post made me feel better, I am not the only one.
Thanks,
Sharon
Hi Sharon. Yes, I can totally sympathyse. Bug your doctor. Find a TOS specialist and get referred.
The thing with TOS is that you have to be very careful about how you treat it. Pain is not good because it only makes things worse. So, the deep muscle massage should be done with caution, as I found out. Also, some exercises can be very bad, because you don’t want to block anything off any more than it already is.
I find for my headaches that 2 tylenol headaches work, along with a nap. They cannot be treated like migraines because they aren’t migraines.
Hope that helps!
Aloha arieanna,
I’m kim, I’m 43 and have been suffering with tos for over a year now. I’ve tried meds/pt/ot/yoga/sleep/no sleep/prayer/massage therapy/chiropractor visits/tai chi/chinese meds/hawaiian lomi lomi massage therapy and now this week I will be having surgery to remove an extra rib which I have. My symptoms progressed over this year and my physical health has declined considerably. I now take absolutely nothing for the pain as the meds did nothing to alleviate the pain only separate form the pain in a lethargic fashion. I’m so excited about the surgery because it means in a year or so I will be in appro. 80% less pain than I’m in now. I am quite aware of the down time and although the lengthy recuperation perio frightens me, the prospect of not being able to swim/dance or even cook a proper meal for my family frightens me more. I’ve enlisted an army of family members to help me and thank god they all live very close by, so after a thorough year and three months of research/investigation/drs..drs.. & more drs…. I am going full speed ahead. My faith in God is formidible, and I’ve taken everything into consideration especially since not only am I my Moms caregiver, I have 4 beautiful grandchildren who need to be pushed on playground swings and such. Well, I’m so very glad that alternative medicine works for you..Out here in hawaii, alternative meds are highly recommended by the physicians. Stay well and know that I will be rooting and praying for you.
God Bless & Speedy Healing,
kim
Well, I am about done with the PT people. For 4 weeks I was treated for SIS included massage to release the pectoral major and minor from each other. Then I walk in and physio has just returned from a course and we start again but this time we are doing the neck, we re-evaluate the c-spine and we start retraction and extension of the head and neck. Well, the next day I open my eyes to a debilitating headache, yet again. The pain in occipital region is back with a vengence. Next day go back to PT explain headaches and pain are worse than ever scalp hurts to touch. They ask me what I did after PT, I tell them I went home, made dinner, did dishes, did laundry and watched about 1 hour of TV. Well, they look at each other and said “it’s nothing we did”. So I get the full extension head off the table treatment, twist and turn and on goes the nerves in the arms into the fingers. I tell him, you just turned on the arms and fingers. And we now wait to see if they will turn off, but once the arms and fingers are turned on they turn off very slowly. Physio suggests icing the c-spine and occipital region so now I lay there for 10 minutes with ice that won’t help this. So I start back to work and not 5 minutes down the road head starts to ache so bad I almost go home. I get to work, announce my headache, take a vicodin and 1/2 a Flexeril (would take a whole but I want to be able to drive home). Saturday open eyes, headache is back and both arms are numb and now I am going to waste a day off in bed fighting a headache! It’s all returning worse than ever. Monday go to PT, tell them what happened, now they have abandoned the retractions and extensions, try the stretch bands and try the arm bike, oh do a little ITYs, and let’s do some measurements for report to doctor and you can go, you are done. Now I am really getting pissed and when this script is done believe you me it is done. I will now look for either chiropracter or pain management. What’s worse is my equilibrium is a little funky, my ears are ringing and I have floaters. Now I usually do have floaters but not like this, and since I have PE tubes in ears I have had funky sounds occurring but this seems to have stepped it up a bit. I was on the 3rd floor of the building at work and looked down the staircase from floor 3 down to 1 and lost my sense of distance and got slightly woozy, I took the elevator. So I am still convinced that mysfascial tissue cannot be manipulated this way this stuff is all indicative of myofascial tissue and trigger points.
Yeah I couldn’t understand the work outs with the bands the bands constitute resistance which constitutes muscle building which is extremely bad for TOS, the goal should never, ever be to build muscle.
I need a good, old fashioned chiropracter is that too much to ask for?
Arieanna,
After 4 years of treatments of all kinds, I finally have the best pain management doctor who has found the right medicine for occip8ital neuralgia. It is a new drug called Lyrica and it works the best of anything I have had including morphine without side effects! Lyrica is a miracle for occipital neuralgia. You must take it religiously though. It has gotten rid of the shooting pain for the occipital nerve damage. Ask your doctor for it and you will finally have relief!
Good luck.
About two and half years ago, I had severe head trauma that caused whiplash, 3 vertebrae crushing each other, and occipital neuralgia. I’m currently looking for more than the therapy I’ve had in the past which include:
Chiropractic
Massage
Accupuncture
CranioSacral Therapy
Manipulation Under Anesthesia
Trigger Point Shots
Pills:
Dicoflenac Sodium
Tizanidine
Skelaxin
Chiropractic works well but, I need constant adjustements. The Massages make me feel better but only for a short period of time. The accupuncture was a waste of about 1000 dollars. The CranioSacral therapy reduced the pressure in the back of my head, only for a day or two. The Manipulation Under Anesthetics unbuckled the 3 crushing vertebrae, and I had no pain for about two weeks. Trigger Point Shots have begun to help, unfortunately, my Occipital Neuralgia headaches come and go, very very painful. The Trigger Points are with local anesthetics and the last round of shots I had, which totaled about 40, were with Dextrose. These have all helped but nothing takes away the severe pain when it comes.
The Dicoflenac Sodium reduces the pressure. The tizanidine reduced my muscle spasms and make me extremely drowsy, and sometimes pass out. Skelaxin gave me the sweats, insomnia, and quivering.
I take large amounts of Fish Oils, normal amount of Red Yeast Rice, Magnesium, and multi vitamins.
I use to take FeverFew to reduce the pain and swelling, though I didn’t see any difference.
I’m still in pain, although a lot less than I was 2 years ago, What should I do?