[Frazzled]

In December 2005, I had a decompression (foraminotomies) of C4-5, 5-6 and 6-7 on the left. Two months after surgery, I began to have pain in the right side of my neck, and my right shoulder, arm and hand. My shoulder atrophied. My pain worsened until I could not use my right arm. My spine surgeon said the problem was not in my spine. He sent me to a neurologist who ordered an MRI of my shoulder. It showed extensive damage, including tendon and rotator cuff tears. I was referred to a shoulder surgeon.

He gave me a steroid shot for a cyst in my shoulder (which dealt with the cyst, but did not affect the rest of my shoulder pain). He referred me to therapy, which caused flares of severe nerve pain all through my upper body, no matter how careful the therapist was. He said he would not proceed with arthroscopic surgery, since he felt that most of my pain was not from my shoulder; and he was afraid he would make me worse.

I began to have radiculopathy in all four limbs so severe I could not walk, after exams during which I did the range-of-motion test for the cervical spine. My spine surgeon kept referring to my “pain syndrome.” He said I “did not need” an MRI and cut me off. It was my impression that my other doctors, who were all in his medical group, were refusing to say what they really thought, to protect him (and I was right).

My neck, back, chest and arm muscles atrophied. I had constant severe aching pain deep in those areas, and very obvious nerve pain (aside from the radiculopathy).

My life since surgery has been nothing but pain and fear. I am unable to work, unable even to walk very far. I had to move in with friends because I could no longer take care of myself without help. I can’t take pain drugs because I took them for so long that I developed severe acid reflux and a bleeding ulcer. I finally have that under control; I won’t take any more drugs.

I have seen three spine surgeons, two shoulder surgeons, an EMG specialist, and a physiatrist. At this point, we can say that that the foraminotomies (without fusion) caused my spine to shift. I have problems at C2-3 and 3-4, where I never had problems before. My spine is kyphotic; weakness and imbalance in my spine cause constant pain and spasm deep in my neck and back and constant headaches. I have radiculopathy along the C6-7 path.

I am much more disabled now than I was before surgery. My new injuries are on the right; and I am right-handed. No doctor will do shoulder surgery because they feel the problem may be entirely in my spine; and I would be unable to do therapy after shoulder surgery.

My most recent doctor is a specialist in failed spine surgeries. He said he has seen what happened to me many times over. With a spine like mine, I should never have had foraminotomies. He proposes to do a fusion of C4-5, 5-6 and 6-7, which he says should take care of 80% of my symptoms.

What I have at the moment is not what I consider a life, but with one failed spine surgery already, I wonder if proceeding with fusion isn’t the beginning of a slippery slope that will never end. I am very worried about fusing three levels. I know surgeons lie—or, to be charitable—give you an overly optimistic assessment of what their surgery will do. My previous surgeon did not inform me of my real risks. I asked him if decompression without fusion could lead to instability; and he said no. Here I am.

My others doctors have said that if this were their spine, they would leave surgery as a last resort. One of them noted that my spine could shift again if I have a new surgery. I will of course discuss this with my doctors, but I would like input from anyone who has faced a similar decision. What are the questions I should be asking?

[AK Kid]

I certainly hope that you could find the help you need. This place is a wonderful place should you need support or have questions.

Now to what you described......

I am not a doctor however when I had my A/C Joint (left) operated on I was told during the pre-op appointment that "sometimes" the nerves are affected during this surgery. Well I had extreme pain afterwards especially when waking up in the morning - the muscle in my neck was so tight and painful. Nothing worked. Well in a follow-up appointment describing my symptoms to my Orthopedic Surgeon - diagnosis - nerve pain. I was told about the Conservative Therapies which include mild medications, a mild muscle relaxant, physical therapy and ice -

What I do is deal with the pain like with my lower back. I follow the concepts of PRICE (Prevention, Rest, Ice, Compression, Elevation) I can elaborate but compliment that with massage oils and old native remedies that include birch, willow, pine and cedar...

What helps is that over time - the pain is diminishing.

I am like you I cannot walk - that is due to my lower spinal issues. But movement is very important.

I utilize lots and lots of ice compresses - that is best for nerve pain. Better than any medications in any case.

You mentioned the ulcer but not the medications you are taking, if any. Talk to your Primary Doc, explain everything....keep a log. Take a copy of this post if need be - but your primary can review all recommendations by the "specialists" and come to a comprehensive diagnosis for you.

I am not an advocate for surgery - I have lived with my disabling condition for 11 years now - and have not opted for surgery although offered....just look at the research. Part of it is confidence - when my Neurosurgeon says "you will be trading one pain for another" and "4 out of 5 Lumbar Fusion/Laminectomies" either fail or cause a different set of problems - I would rather back off. Remember this as well....the surgery is not reversable. I have been offered a pain stimulator - I am waiting on it as we speak - that is reversable. Maybe it is an option for you.

Good luck to you.....for more remedies email me and I can send you some recipes from my elders that will help.

Kim

[kimlisafreeman]

Hi Kim,

I have spinal clumping in my lower spine due to spinal fusion surgery. Like you , my surgeon did tell me of this possible risk. He even had the nerve to accuse me of lying or me being crazy saying I will feel better if I go back to work. Well I am back at work and in a lot of pain, especially when I sit for long periods. Really sucks. I would appreciate any of your remedies if you don't mind. I'm going to try natural, holistic approach to my condition and pain now. I am bitting it will work better than conventional medicine. Thanks much for your help!

Kimmi from Brooklyn

[AK Kid]

When I worked there were a number of strategies I used to "live with" the pain.

Take frequent breaks....get up and walk around - stretch out those legs, make sure you straighten your back when doing this and remember to breath (deep)

I would go to one of our empty conference rooms during lunchtime and lie down on the floor and prop my legs up on a chair.....use visualization and breathing exercises to get centered and relax. Oh and I had the lights off. If the office got too noisy, I would turn on the ipod.

Have an ergonomic chair

My doc wrote a perscription for a half sitting half standing workstation (that really did help a lot, especially with getting up)

Do not avoid the stairs....we were in a 3 story building - I still made myself walk them everyday at least once - slowly with the cane - but I did them.

If you cannot get out and walk around - there are exercises you can do in your chair - just answering the phone......by breathing and pulling in your stomach and straightening up your back

Have a back support - and one the bad days have a pillow support for your chair.

For the really bad days I kept a ice pack in the office freezer.

Drink plenty of water - my favorite time of the day was when I would make a herbal tea.....try tazo passion (my favorite)

On the bad days I did use some of the "potion" I make - a tea (I used externally) made out of Willow bark and leaves, Birch leaves, Cedar and Spruce tips - mixed with jojoba oil.....I simply massaged that in my lower back area....or there is also a numbing rub called "Emla Creme".

I wish you the best.....

laugh a lot - I used to have rubberband fights with my co-workers, had a candy dish at my desk so people would come by and visit....

Take care

Kim