17 year old daughter with Tietze's syndrome....HELP!!!

• By KelsieDianne
• Posted August 14, 2009 at 7:32 pm
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My daughter, 16, is also suffering from this. She says it is terribly painful and I know it has to be because she is willing to undergo injections in hope of some relief. She had a nerve block done, and that worked, but then it showed up in a slightly different spot. She tried steroid injections into the rib joints (6 places) and that hurt a lot but did not help at all. Now we are waiting for another nerve block, but then she is probably not able to get another injection until next spring because it will be her 4th in a year. She has also tried flector patches, iontophoresis, ibuprofen, dolobid and celebrex with no relief. She is also on Remicade for UC which is used for rheumatoid arthritis so I don't know WHY she would be having rib inflammation! The dr.'s can't give us answers either. She did try inter-x in sports medicine, but that made it worse. It is an electrical current stimulation, but I am curious if they have the LLLT. I will be asking. I think I will also ask about ultrasound. I am also considering chiropractic--but need to find one that has experience with this.

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• By tracy_l
• Posted July 19, 2009 at 3:22 am
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Hi,
This doesn't directly help, but hopefully it can shed additional insight to your daughter's condition.

I'm a 20 year old female (I just turned 20 2 months ago) and I was diagnosed with Tietze's Syndrome a few months ago. I was in the library studying and stressing when I felt a pain in my chest. I called the nurse hotline of my college and the nurse just coerced me to go to the ER even though I did not have any other symptoms of heart attack other than I'm on the birth control pill.

This part isn't at all related to TS, it's just my ER rant, so skip if uninterested. I only saw a triage nurse before leaving because I'd been there for 4 hours and was told I'd probably be there for another 4 before I'd get to see a doctor. It was already 4AM and I'd figure I could just go to the University Health Center when it opens at 8AM. Besides the Triage Nurse said whatever I had probably wasn't serious.

When I went to the Health Center and saw a general practitioner, he almost ordered me to take a gamut of tests except that he started pressing my chest and around sternum it hurt more than apparently what it should. He then concluded that I had Teitze's Syndrome and made me take Aspirin.

So far, I've been lucky to have probably less than 5 "episodes" that were quickly dissipated with aspirin and time.

I know this all sounds trite but I hope it helps.

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• By stephE
• Posted June 23, 2009 at 1:42 pm
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Sheila,

I suffered from Tietze's syndrome for 16 years. I must have spent $50,000 in medical bills trying to find something to alleviate the pain. Vioxx workked for a while, but we all know what happened with Vioxx!!

Completely coincidentally, I was put on a vegan diet for another condition (reactive hypoglycemia). My Tietze's syndrome has completely disappeared. There's a lot of research to indicate Tietze's is exacerbated by red meat, dairy, and a few other triggers. If you are interested in reading more about my experienced with finally getting rid of TS, I blog about it http://www.tietzessyndrome.com.

Best,
Steph

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• By Mand61123
• Posted June 8, 2009 at 8:05 pm
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Hi Sheila
I joined to reply to your post i hope something I post might help your daughter i've been suffering with the condition for 3 years now and have had to give up my job and work from home because of it. My doc says it's one of the most severe cases he's seen so I understand how exhausted and completely frustrated you both must feel.

I find heat pads and creams (like cura-heat and transvasin) applied to the most painful areas (usually front and back for me) help just to dull the pain when your trying to muddle through. I find hot baths help me alot its always painful initially getting in but afterwards i feel better than i was.

Mines really sensitive to temperature so keeping warm with a good coat/ jumpers blankets etc all help. Not having windows open/fans on etc
Good pillows to help with sleeping (I rarely can lie flat on my back or side but can often sleep propped up). Good vests/chest supports to help support her when shes moving about. I know some people have found sports bras help but if it's severe they might be to painfull I tend to sick to vests/boob tubes when bras are to painful.

Painkillers aren't really working for me and they think i'm to sensitive for the steroid injections so I'm about the try reiki in the next couple of weeks (once i've saved up) so I'll let you know on that.

The main thing I would recommend is keeping a daily diary she may start to notice patterns and be able to adjust to suit or try and avoid very bad days (hopefully). I've found that it's very personal and trial and error is the key thing. What works for me may not necessarily work for her and visa versa. It's also useful when speaking to the doctor and consultant to give them a clearer picture of what you are going through because lets be honest if shes made it to the surgery/hospital she isn't at her worst so they never get to see that.

Did your daughter try acupuncture? How has she been?

I just really want to offer my support and I hope she realises she isn't the only one going through it if she ever needs to talk or vent about it to someone that understands i'm only an email away.

Take Care Manda

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• By Learning1
• Posted May 31, 2009 at 1:40 am
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This is going to be a long answer, and I hope it makes sense.

Low level laser has clearly helped reduce or eliminate pain in a number of other situations, including chronic pain situations, including fibromyalgia. The problem is proving it to the satisfaction of doctors, the medical associations, and the FDA. And also, with laser, types of lasers used, and techniques and timing, can vary. Not all lasers are the same. So the question is what will work for you.

A previous post mentioned type 3B and type 4 lasers being effective against pain. Even type 1 lasers (like the Q laser series) can be effective for muscles, organs, and glands, provided they use scalar wave technology to get the laser waves to penetrate, and provided there is adequate treatment time. Type 3a lasers are for fairly shallow problems - surface muscle problems, acupuncture points, etc. Type 3b lasers are good for stimulating nerves, joints, tendons, bones, cartelege, and ligaments. These 3 classes can be used by individuals provided they take proper precautions (don't point these toward the eyes, etc), and should be able to treat basically any problem. Type 4 lasers are more powerul lasers, step into a power range when damage can be done if not careful, and should only be used by trained professionals.

When considering lasers, you have to begin to go through a change in thinking process, to one approaching eastern medicine rather than western medicine. Laser and other energy medicine tools work on a different theory and approach than the approach used in traditional medicine. With the difference in approach, and the push in the western world (especially North Americal) for multiple studies and millions of dollars in research, you won't find a lot of doctors who know much about it.

The money for research and studies traditionally comes from the drug companies, and since there is no money to be made with lasers, or even nutrition, the funding is just not there for detailed studies. From the time the philanthropic organizations (whose funders also had ties to the drug companies) began to invest in the medical schools in around 1910, the medical schools increased their reliance on drug based therapies. Now, a doctor who operates outside the normal drug and surgery based thinking is questioned by the medical association, and any claims made by devices which have been shown overseas to be benefical to many conditons have problems even getting basic FDA approval, especially FDA approval for treating different problems, and even then only specific problems are approved (even though many modalities operate on a far broader basis than drugs, which may be condition specific).

Traditional medicine will treat the symptons, or try to find one specific point that is the problem and try to deal with that. Low Level Laser Therapy (LLLT) operates from a more holistic approach. Yes, you may deal with the area that hurts, etc, but that is not the focus. The focus is on boosting the body's ability to deal with the issues at hand, which may involve far more than a specific problem or virus, etc. This different approach makes it difficult for the medical community to understand how or why the technology works - to them the issue is problem becomes one of proof on specific cases, when for energy medicine, the focus is on well-being far beyond this, with some of the results being the body dealing with the issues present.

In an article titled "Why laser therapy fails - and succeeds" by Turner and Hode, at http://www.laser.nu/lllt/lllt_editorial.htm#Super, (an editorial from Laser World, the Sweedish Laser Medical Society's web site), some of the leading people in laser research point say "after more than 30 years of laser therapy a lot of additional research has been carried out and the overall quality has improved immensely. So have the ability to analyse the literature (9-11). And so have the laser machines. We now regularly have lasers in the 100+ mW range, providing adequate dosage possibilities even in deeper tissues. So the question is:" is laser therapy now well documented from a strict scientific point of view?" My answer is, regrettably, NOT QUITE! On the other hand, that is not unique for laser therapy. Ultrasound in physiotherapy is less documented and even one of the most used interventions in health medicine - NSAIDs for knee arthrosis - appears to be poorly documented."

A few more excerpts from the article:
"There are more than 100 positive, double blind clinical studies (12), hundreds of positive in vitro studies, lots of animal studies, all pointing into one direction - it works. But this is not enough. The present "weakness" of laser therapy lies, ironically, in its strength. Since laser therapy works at a cellular level by improving the activity of cells in a reduced condition, almost any pathological situation will improve through laser therapy. But according to the way we are used to look at medical therapies, there is no such thing as "takes it all"."
...
"In our own experience the majority of laser users have some sort of personal experience, either by being treated or by knowing somebody who has been treated and reacted well to laser therapy. Such an experience is more convincing than a good positive double blind study. Science is not only pure brain power; it is also a lot of psychology and coincidence."
...
"What else? Well, the diversity of wavelengths, powers, dosages, treatment techniques, pulsing etc makes it rather confusing. ... We know that there is a rather wide "therapeutic window", so even with rather diverse approaches there will be a reasonably positive effect. And the practically oriented persons take advantage and become convinced. But the average doctor needs more, and certainly health authorities."
...
"The pharmaceutical industries have the financial muscles to offer all this and to present it through their sales representatives, through advertisements, seminars, free trips to congresses, funding of new research etc. The poor laser industry has not."
...
"An obvious weakness of laser therapy is the lack of education at an academic level. Such education is offered at some universities but the vast majority of laser users must rely on seminars or textbooks from manufacturers. The good exception is Russia where laser therapy is widely taught at an academic level."

All that being said - the question comes down to whether it helps with chronic pain for SCI situations. I suspect that the answer to that question depends on the both the cause of the pain and the type of treatment received. Lasers work at the cellular level. They add energy to injured cells. The help increase the permeability of the cell membranes. They increase micro-ciruculation and increase lymph drainage. Lasers can help relax tight muscles, which are often the cause of pain. They apparenlty can also help the body neutralize the effect of bacteria and viruses, helping remove pain that is caused by that (for example, in some root canals that become tender afterwards, they can neutralize the problems and remove the pain). In all this they provide extra tools the body can use in its natural healing process. But it is not a specific local pain killer.

Depending on types of pain, and cause of pain, one of the writers on lasers say they substantially help in 60% of the cases, and they help provide at least short term relief in an additional 30% of the cases. So no guarantee, but there seems to be a reasonable chance it might help. See the comments in the LLLT column, and the link under "SCI Alternative Treatments" to to Johnston's online book (hosted by the government of Iceland), which has a section on Laser and Laserpuncture. It also has a section on acupuncture, which has been shown to help with SCI pain. Not mentioned specifically is the fact that laserpuncture (using laser at actupuncture points), and electroic acupuncture (using electricity rather than needles at acupuncture points) has been as effective as regular acupuncture. Also in the article is a section on electromagnetic pulse therapy being effective in helping control pain (as well as helping enduce the body to heal lingering pressure sores, etc).

Regular magnetic pulse therapy has had a lot of research in Europe and eastern europe with a lot of success in pain control, and the devices are finally beginning to come into North America, with the home devices coming in at a fairly reasonable price range. So those are now an option worth considering.

Another branch of energy medicine which has had success in pain relief is that of Scenar, and the more advanced version, Cosmodic. According to those who have used and teach the use of Scenar and Cosmodic devices also have helped many with pain control, and have even helped with phantom pain amputees have suffered. This technology started with the concepts used in the basic Russian developed TENS (transcutaneous Electro Neuro Stimulation) machines and philosophies, but have many years of research and development since then to enhance how the signals are created, enter the body, and how the devices respond. For a number of years the research was classified and was part of the Russian space research program.

One of first people to bring Scenar (and Cosmodic) technology to the west was a former Russian eye surgeon, who got involved with Scenar technology because they were looking for someone to research Scenar with eye problems, and she was looking for something to help her son, who had Turrettes Syndrome. As her testimony on http://dririna.com/ indicates, after just a few weeks of treatment, her son's Turrettes problems began to turn around, and within a year he was sympton free. She now does a lot of training and is heavily involved in helping others gain benefits from Scenar and Cosmodic technology. But the devices she handles are not cheap, though they do come with a good training and support program.

These machines can help reduce and control pain, and there has been a lot of research done in Russia, with the devices approved for use by doctors and in the hospitals there. They have also been approved in England and Europe for pain relief, and have CE approval for this. For example, one of the inexpensive scenars sold in England goes under the name "Pain Genie", and it has CE approval for this. A few of the devices even have made it through the expense and process of getting FDA approval for being able to claim pain relief. What they do is produce a signal similar to what the nerves operate on, and they stimulate the body's C fiber nerves. The more advanced of these are actually highly computerized biofeedback devices which operate based on galvonic skin response (they read the body's signals through the skin and respond back). The less computerized ones have some computerization, but the quality of the results are partly related to the quality of the therapist using the devices. The result from this therapy is that it stimulates the C fibers in the body to produce natural endorphins (the body's pain killers). This also is one of the body's triggers to help call the body's natural healing processes into action. This apparenlty accounts for some of the deeper healing, and longer term pain relief, since it often helps the body to work through lingering issues where pain or problems come from prior partly dealt with healing issues.

One of the scenar type devices that has FDA approval is a device designed and made by Texas Instruments, designed in cooperation with the primary group of the Russians who produce traditional scenars. This device, the Avazzia (web site www.avazzia.com), is now used by a number of sports teams for pain control and speeding healing, and has been covered by a number of medical plans, and even medicare, when doctor recommended for pain control. They indicate that a co-pay is often around $130, Ad they have the info to supply to the doctor, and even the forms to get the doctor to sign, on their web site. If your health plan will cover this, it is a really a no lose situation. The odds are that it will help relieve or control pain, and the net investment is a small one. And it sounds like it is a fairly automated unit, and it is designed at an angle where it is an easier one to self-treat with.

The more advanced Cosmodic devices (with the continued advancements and higher tech biofeedback and computer programs - by the original inventor of Scenar) appear to have longer term results. This is from both from the Russian examples and from the therapists in England who have been using, but the company can't be bothered by getting CE or FDA approval, and they don't want their devices to be locked into older models or concepts to get these approvals. They are still approved for use in the Russian hospitals, and can be purchased in the West, but are more expensive, and to date do not appear to have been approved for medical plan funding. And for short term pain relief in chronic situations, Scenar apparently has faster results than Cosmodic, just not as deep or long term.

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• By shortstuff
• Posted May 12, 2009 at 12:20 pm
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OO..ty for explaining that to me.I have been a member here two yrs and am seeing so many things here I have never heard of. Does tht treatment help chronic pain?

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• By Traveler
• Posted May 12, 2009 at 12:14 pm
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Cold laser is a therapeutic laser often used in sports medicine. Current versions are Class IIIB and Class IV. My experience is with the newer Class IV laser. There is no discomfort involved (hence the term "cold" laser) and treatment times are very short, say 4-6 minutes per session.

Hope this helps. Good Luck!

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• By shortstuff
• Posted May 12, 2009 at 12:03 pm
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hey traveler,whats cold laser? I have never heard of that and am curious.

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• By shortstuff
• Posted May 12, 2009 at 12:02 pm
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how in the world do you do tai chi with chronic pain? I have ra and its a challenge to walk about the house some days ..I couldnt even think of trying something like that...wow

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• By Barnone
• Posted April 12, 2009 at 4:14 pm
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My daughter has had this since she was around 15. I lived in Kansas at the time and found a wonderful chiropractor that helped her. His name is Michael Cuba in Abilene, Kansas. If you can find a good chiropractor in your area, have them contact Dr. Cuba for treatment information. My daughter is 26 now and suffering from a flair up right now. We now live in Alabama and Dr. Cuba is trying to find her a Chiropractor here that is familure with this disease. He said that if they didn't know how to treat it they could make it worse. Even with treatment it still takes several weeks to help it. Hope you can find the help you need.

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• By Shurukian
• Posted April 8, 2009 at 6:17 pm
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I was actually diagnosed with Tietze's when I was 17. It's almost been a year. A good thing, is Maiofacial therapy. (I don't know how to spell it.) It really helps. You just have to find someone who can do the therapy.

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• By sheila_r
• Posted March 12, 2009 at 2:41 pm
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Hello, Everyone!!
Thank you so very much for the responses. As soon as we can get my daughter's health insurance straightened-out, we can begin different aproaches to her condition, again!!
We appreciate all the interests and info from everyone! Also, we try to read and respond to them as we can. Unfortunately, her health condition has not changed yet, now going onto 2 yrs....Waiting on her insurance coverage to start again, we can just take 1 day at a time....
She has been able to at least think about other possibilities, mostly due to all of your responses to her condition. Thank you so much...
Sincerely, Sheila R.

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• By Traveler
• Posted March 12, 2009 at 1:37 pm
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I've had some success with cold laser (LLLT) therapy. Almost no downside (other than the cost which is not usually unreasonable) and often results are relatively quick if its going to work at all. I hope this helps.

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• By JB123
• Posted March 12, 2009 at 2:46 am
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PS: As far as wearing bras... that has been hard for me as well. My Dr. suggested these spandex under shirts from a store called Zara. THEY ARE WONDERFUL!

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• By JB123
• Posted March 12, 2009 at 1:38 am
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Story:
I am a 31-year-old female. For several years I have had severe chest pains. I always thought that it was gas. Recently my left breast started hurting and I could feel a lump. Since November I have had a mammogram, sonogram, MRI, 3 CT scans, 4 chest x-rays, PET scan, and thoracic surgery. All of this was inconclusive; the tissue in my lung was some old infection from years ago, and now my chest pain is worse. I expressed this to my surgeon and she said that it was most likely Tietze syndrome.

Remedy:
I don’t like taking drugs and honestly I am way too young to be popping the Ibuprofen. I found that Tai Chi has been the best thing. Since I have been taking Qigong I barely have any pain.

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• By sewingsquirrel
• Posted January 29, 2009 at 11:28 am
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Hi, I've just been diagnosed with Tietze's syndrome after more then a week of numerous tests and examinations. Doctors originally didn't know what was wrong with me, as it's hard to diagnose because its so uncommon.
At 17, its the most painful experience I have ever had. The doctor even said that people compared the pain of Tietze's syndrome with that of heart attack! At present, I have been given strong anti-inflammatories and morphine which sort of work. However, I'm desperately looking for alternatives, as morphine is an unhealthy substance to use, especially if I'm going to have this chronic pain for several months to come.

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• By akmom
• Posted October 31, 2008 at 2:54 am
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My daughter has been diagnosed with Tietze's syndrome. She is 16. NSAIDS aren't helping. Did you come up with any alternatives? I'd sure appreciate hearing from you.

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• By barry100
• Posted September 16, 2008 at 6:27 pm
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It is a steroid but I have had no side effects at all. You take them for 6 days 6,5,4,3,2,1. I get relief from the most excrutiating pain within 8 hours. I have had to take them 3 times last year and we are trying to figure out what the cause is. It seems to reoccur whenever I lift something heavy. The meds are not something you want to take your whole life but I cant function without them.

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• By sheila_r
• Posted September 16, 2008 at 11:45 am
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to: hcb324....Thank you also for the response!!!...No, they don't think that it is JRA, but I have asked the doctor about the meds and he has said 'no' so far... now she is on an anti-seizure med... so sick of all this waiting for something to be effective!!!....so far it hasn't helped either!!!...what's new????
Anyway, thanks for the info and the time to reply....hope you are feeling better too!!! Sincerely, Sheila R.

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• By sheila_r
• Posted September 16, 2008 at 11:36 am
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to: barry100...Thank you for the reply!!!
If the 'meds' you are talking about is a type of steroid, i think we would rather not try that one because of the side effects... are you having any with that type of medicine???
Thank you, Sheila R.

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