[momzpeachy]

Hi all

I am back - been a while since I've been on here. Sorry I've been away so long but I've been dealing with so many things. I can't sit at a computer for more than 2 minutes. I now have a laptop to use so I can sit on the couch and type for a little bit. It seems to work.

I have been going through Hell! It's now been almost a year of chronic PAIN and not making ANY PROGRESS! I have been seeing a chirpractor who said he "can fix me" I was sent to him by my w/c attorney. Well, going to him 3x a week and he's doing NOTHING for me! I'm worse than I was before I went.

I don't know how much more of this pain I can take. I'm broke, upset, frustrated...you name it..it's me.

I finally went another step and looked for help in the city. I went to Thomas Jefferson Hospital for HELP! I am now under the care of SEVERAL Doctor's who have been running a battery of tests. I have been having problems with dizziness, nausea, balance, hearing and of course the neck pain. Also, since the chiropractor has been treating me ...I have back pain all the way down into my lower spine.

I was sent for new MRI's. These show problems in my whole spine. multilevel degenerative problems, narrowing, straightening of the lordosis, tear in the annular (in Lumbar spine) which I wonder if it was caused my the chiropractor twisting me (that caused shooting pain up my spine). I have disc problems all over..diagnosis spondylosis. ok, that's that part..so now what caused that? posture? or is this something else? My mom has degenerative disc disease and rheumatoid arthritis! I'm only 35 though! I just don't know now what's going on. My whole back hurts! my neck and arm is killing me.

Ok, now to the ENT..I have hearing loss in both ears, vertigo and major balance issues which were shown on the balance testing. Now he wants to try vestibular rehab! ACK! But..problem...my neck. He feels this might all be caused from the neck problem but doesn't know for sure.

I have so many things going on. What is causing what? I don't know why my spine is a mess. My hand still is COLD, fingers turn color, have no strength..it's a mess. I believe I have TOS but some Dr's don't agree. They look at my spine and think it's the problem.

Now, did the chiropractor make things worse? Should I keep going to him? I don't know what to do!

I am going to see a vascular surgeon on Friday. I have a neurologist saying I don't have TOS but yet all the other doctor's say I do but nobody has ruled out anything else. I am so dam frustrated!

When I go to the vascular surgeon - what questions should I ask? what should I look for in this Dr? What if he says it's not TOS! Where is all this neck, shoulder and arm pain coming from? Where do I go?

I am sorry for this long message but I need help and don't know what direction I'm going. I was told I shouldn't drive, I'm dizzt a lot and don't feel well.

Also, I had surgery a couple weeks ago to remove my right ovary. I knew after my hysterectomy 3 years ago...something wasn't right there either. I was in excruciating pain and bloated. My right ovary was full of endometriosis and I also had major adhesions in my abdomen. They were pulling on my intestines and other organs. I was a real mess and it was a good thing I got to a Dr who could do surgery right away.

My primary Dr is clueless and doesn't even read reports of anything. She asked me why I was going to the city and she can't interpret their reports.."too complicated"

Is it just me or what? Does anyone else have my kinda luck!

I hope everyone had a nice Thanksgiving and I hope to hear from you! I think I'm skipping the Holiday's this year!

Take care.

[marabunta]

I'm sorry you're feeling so awful and not getting the answers you need.

I'm 39 and have been dealing with this for 15 years. Finally this year...it all started to come together in my head. I had an MRI/MRA/MRV in January that identified an anterior scalene muscle insertion point 3x larger than it should be...a congenital issue. The scalenes have been described to me as accessory breathing muscles.

From this new info, I've made the following wild but plausible waterfall, which I'll try to type out for the first time (AKA my descent into hell!) :

1. Normal activation of the scalene muscles is hindered by the insertion point abnormality.
2. Activation of the scalenes during normal breathing constricts the subclavian vein, causing arm symptoms and brachial nerve irritation. Some altered breathing patterns develop to compensate.
3. chronic compression results in scar tissue developing around nerves and scalenes, complicating the original condition.
4. Shallow breathing becomes the default, affecting posture, which further complicates all issues.
5. Chronic bad posture due to physiological restrictions and type of work performed daily wreaks havoc with spinal integrity, develop cervical spinal issues and worsening of original symptoms and complications.
6. Cervical spinal fusion performed to stabilize cervical spinal integrity, but spinal pressure is now manifesting in lower spine, which is also weakened by bad posture & breathing habits.

I'm sure I can refine the above much better, it's occurred over at least the past 15 years, and I'm not sure what the trigger for number 2 above was...maybe all my life and it just developed enough scar tissue to trigger other symptoms?

Marabunta in N.California.

[Jomar]

momz,

If you have been going to this same chiro for months?? and see no improvements - i would not continue going.
Does he talk to you and explain what he is doing for you with his treatments? Does he do upper cervical adjustments and other type of treatments ?
Perhaps try another with more skills and experience?

But I'm pretty sure DDD & rheumatoid arthritis can be hereditary - not 100% so but chances are higher that it could be passed on.

It sounds like you need to find a much better GP and a different chiropractor or take a break from chiro for awhile to see if things improve or what happens.

[momzpeachy]

Hi Jo...hope you are doing well. Nice to hear from you again.

I feel bad for venting so much but I just am so lost on everything and feel like crap.

I have seen this chiro since May and made no progress. He swore I was making progress but I don't know how he can tell that. All he did was hook me up to the elec STIM, do the ultrasound on my neck for 10 min and then adjusted my neck and back..oh and he said my hip was out so he was adjusting that too. That is what HURT! He twisted me and the pain shot up my spine. My neck cracked so bad that people across the room heard it. He even had this look on his face. He said "necks aren;t supposed to sound like that" I've never heard anyone's neck do that! He didn't tell me anything other than "my body mechanics is all off" and he "needs to adjust me" !

Well these adjustments caused PAIN and more of it. I just had this new MRI done which shows the same thing but WORSE since the one I had in January. He said I am making progress...doesn't show it on the MRI. It shows I'm worse than I was and also my lower spine is a MESS!

Here is my MRI report

L2-3: Normal
L3-4: Small central posterior annular tear, no significant disc buldge, herniation, central canal stenosis or neural foraminal narrowing
L4-5: Mild diffuse disc buldge and minimal bilateral degenerative facet hypertrophy
L5-S1 Minimal bilateral facet hypertrophy

Cervical spine:
Cervicothoracic alignment: there is straightening of normal lordosis
Intervertebral discs: Multilevel degenerative desiccation

C2-3 Normal
C3-4 Normal
C4-5 Evolution of the previously noted disc buldge into a small disc osteophyte complex
C5-6 Bilateral degenerative uncovertebral hypertrophy
C6-7 Normal
C7-T1 Normal

I am not going to the chiro at this time. I'm afraid to go back but also he's involved in my w/c case so I don't know what to do.

ttyl!

[Bi-Coastal]

UGH!!!

I know some people swear by Chiropractors, but they scare the (insert expletive here), out of me. TOS requires gentle stretches, massage, etc. Chiro is much too rough in comparison. Therefore, if it were me, I would run, not walk, away from that Chiropractor, even though he/she has good intentions. I hope your back issues resolve with time.

My Thoracic Surgeon told me that pain (with TOS) is the same as scratching an open wound....the scar tissue just builds and builds. SO, if anything causes you pain, try to avoid it. Especially when you are talking about therapy.

You were wise to finally become your own advocate and it sounds as though your symptoms are being taken seriously and tested appropriately in the City.

It is a shame we have to fight so hard when we are at our weakest...almost.

Go with your gut. It does not sound as though the advice you had been receiving initially was in your best interest. A lot of that sounds as though iit was just ignorance regarding TOS.

I wish you good fortune in this new phase of treatment. Hopefully, things will turn around for the better now.

Warmly,
Anne

[fern]

I'm sorry that you are having so much trouble getting the kind of care that you want, need and deserve. I wouldn't get too bent out of shape over your posted MRI results; none of it sounds terrifying. Annular tears are common, so is reversal of curve (lordosis) and please remember that many people show degeneration of the spine; it's those of us w/symptoms that are disconcerting. It sounds like you don't have faith in your chiro and your GP. If it were me--I would stop the chiropractic care until you find someone that you have more faith in or develop that in the one you are seeing. I would skip trying to find a GP who understands these specific conditions and spend my time trying to find a treating doctor who can manage your case for you and send you for appropriate tests and to appropriate doctors. If you can't find just one then I would go for a few different doctors who can manage different aspects of your case and conditions. Myabe a neurologist, thoracic surgeon, physiatrist, pain specialist, spine doc... basically someone/s who understands a lot and is willing and able to research things for you if necessary. Have you looked for doctors in the stickies above? Have you contacted your health insurance company (not WC) to see if they can help find a few names in your area? Good luck with it and keep us posted.

p.s. are you hypermobile? If so have you checked out the thread on hypermobility?
p.p.s. I know that it can be very overwhelming to be in your position. this may be a good time to take control and find just ONE practice you can do yourself for yourself to go along with all the time you are spending researching docs and educating yourself about your conditions. Like a small walking program, breathwork, or some meditation or time in a warm pool.
Sharon Butler's selfcare pgm or Edgelow's self care prgms are good choices too.

[marabunta]

I found this article interesting: http://www.chiroweb.com/archives/21/12/08.html
It summed up for me why traditional chiropractic (high velocity thrusts) is a bad idea for conditions such as those underlying TOS.

[Jomar]

I agree that there are very good and very poor chiropractors.
But I think that applies to most everything in life anyway.

Mine doesn't use any high velocity moves or any scary rough adjustments. He is good about talking and explaining things.

I guess because of your wc case and atty - you need to get in contact with atty and request/insist on a different treating dr, as you are not feeling any better with this chiros care.
You might need to search out a replacement so's not to get just any name the atty gets from his list, if he has a list??
Is the chiro your only wc treating dr?

I was going to chiro on the side, paying cash, during my wc claim.
My GP who was my txing dr for my claim too {didn't seem to be able to help when the TOS sx started showing up- she only helped as far as the reg RSI part - the rest was beyond her}
she referred me to a physiatrist- but he was more into spinal rehab not soft tissue TOS type injuries.

Anyway , got side tracked LOL- the new drs place I found has Osteopaths & RNLP that seem to be pretty good, on site they have xray, lab, a PT/gym, bone scan, a 50k back care machine.

I think if I had them during my claim things might have gone even better for me - plus a different atty too.

[tshadow]

I have read many MRI reports, and whether your notations create pain or problems for you must be analyzed with a very good spine (ortho) surgeon. Someone can have a 5 mm bulge with no pain, while another can have a 2mm and have a lot of pain. Everyone by the age of 35 has SOMETHING on their spinal MRIs, usually degenerative in nature. (Especially depending upon diet and where the person was raised - some countries have severe spondylosis and degenerative disc disease as their profile, while milk-fed US people don't generally.)

I am going to post my usual list of testing only so that you can see that many of us have to become pretty much our own researchers, and go through quite a few doctors seeking knowledgeable ones. The reason we have a list of docs is that most don't get TOS at all. I went to Dr. Annest in Denver for my surgery, although I'm in CA. When it came time to decide, it really wasn't any more cost for w/c to send me there, as opposed to transporting me to LA or San Diego, (since I didn't live in either place.) Given the right process and referrals, work comp has and will pay for the top docs in Denver. So that's my recommendation -

Plus, good wishes, and hoping you find a good path for healing.

[tshadow]

Here's what I used to post all of the time:

I don't think any of my tests came up abnormal except the scalene block was positive for taking away the pain - and the high, high pain was the primary symptom - and, blood tests, obvious color changes on arm skin, loss of use of the hand / arm, temp changes, and where I pointed out the pain locations copied known TOS patterns, and differing blood pressure from one arm to the other. So the docs put all of those facts together, with the absence of any other known diseases, and concluded neurogenic TOS.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. You may test normal to ALL of these tests but still have neurogenic TOS. (Vascular TOS alone is only about 5% of all TOS cases, and it is seen by the abnormal vein imaging.) TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS tests to rule these out, then you might have missed an obvious tumor, etc., which could be life-threatening. Yet it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present as a whole. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI to rule out MS or other copycat conditions.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling con