titanium rods and hair loss

[linzlu26]

Hi everyone,

I'm new to the group and had a few questions I hope I can get info on.

I had surgery in 1991 at Texas Scottish Rite Hospital at the age of
13. I'm fused from T5-T11. The rods run from T4-L1. I believe they
are titanium. Ever since this sugery my health has never been the
same. My hair started falling out 3 months after the surgery and I
never regained my energy level.

Follow-up xrays always show my spine fused perfectly. I had a 50
degree curve and its 20-25 degrees now.

I believe strongly my body has a problem with the titanium. I also
had breast implants and they have made me sick too. I do not know if
I have a genetic type that rejects foreign objects in an odd way or
its some innate property of the implants but I want the rods out.
Now that I know breast implants cause me problems. I think the rods
could too.

I'm not here to ask if people agree or disagree that titanium rods
can make you sick. Its fine if everyone here thinks I'm wrong.

All I want to know is if anyone else had hair loss after the rods
were put in that DID NOT stop or return? And how complicated and
risky is rod removal?

Please help me its so hard to even find people with this surgery to
ask questions too.

Any info is greatly appreciated,

Lindsay

[nzgirl]

I haven't heard of people having problems with titanium implants, and they are used in lots of different types of surgeries not just for scoliosis. but that's not to say that your experience isn't valid, and if you feel that this could be a problem for you, then you should listen to that. I wonder if you have looked at other avenues to find out why you have had low energy levels for such a long time, such as mild depression or food intolerances.
There are a lot of posts in this forum on rod removal, and my understanding is that the removal surgery is relatively straightforward and that once the fusion is healed the spine is unlikey to return to the pre-op curves. But do you really want to go through that? Try and find out more about your low energy if you haven't already, because it sounds like a really unlikely link between rods and low energy, therefore you might not be able to get insurance for it. Also, maybe you can ask your doctor or nurse to look through some medical journals to see if there are other cases.

[nzgirl]

Sorry i realise my last post probably sounded like I was minimising your problems, and not what you were looking for. I hope that you find the answers that you need. Take care

[linzlu26]

I had no health problems until AFTER this surgery. I have searched and searched and searched and I keep coming back to this surgery as the trigger.

I have Lyme disease which is a bacterial infection. I do not know how long I have had this but my hair only stops falling out and growing back when I take shots of antibiotics. If I stop them I get sick again. I have a lot of symptoms besides fatigue and hair loss like fevers, rashes, etc. I had severe muscle spasms in my cervical muscles which the antibiotics cured.

I have read thru this forum and seen that some people have asymptomatic infection, slow growing infection near the rods and the only way they get cured is to remove the implants. Its well documented that most bacterias will gravitate to foreign objects in the body and be very resistent to antibiotic treatment. This may explain why I get better on antibiotics but can't get cured because the rods remain.

Anyway, I don't have any psychiatric problems. Believe me the doctors have tried that lame diagnosis over and over and drugged me with psychiatric meds and they do NOTHING for me.

Please realize you can't believe everything doctors tell you and sometimes their medical books are WRONG.

People tend to cast a patient to the 'psychiatric problems" when there are no labs to to explain the problems.

I have perfect hormone, cbc, etc yet I can't even work. I'm very ill and there are others like me who get labeled with depression, ADHD, bipolar etc.

The harm in this is that first off its at best a secondary diagnosis (a symptom) and by not treating the primary cause, the person continues to become ill and less functional.

My problems started with this surgery therefore the answer(s) lie within this surgery.

[CHRIS WBS]

Just a thought

Lindsey,

A little over a year ago I went to a support group meeting and there was a woman in her 40s there who had had surgery by a surgeon in Chicago. She experienced much of what you are describing. She ended up having four surgeries as her doctor tried to get to the root of her problem. It was ultimately discovered that she had a rare allergy to the hardware in her body. She said that her doctor told her this occurs in roughly 1 out of every 1,000 patients. Once she had all her hardware removed, her symptoms went away.

Chris

[linzlu26]

Thanks Chris,

Do you have this woman's e-mail address? I'd like to contact her if possible.

For years and years I have gone to doctors and every time they tell me no way could the rods be the cause of the problem.

I naively believed them and even went on to get breast implants thinking it would make me feel better since I had to start wearing hairpieces at 19. Every doctor told me if you are allergic to an implant you will reject it right away.

They are WRONG. If I can ever get well I will PROVE this. My masters program is Biostatistics. I don't know why or what the mechanism behind it is but foreign implants DO NOT belong in the body.

They will make you ill in some way, whether it be pain, hair loss, infections, rashes,etc..I've read through so many posts on here about the pain the rods cause. That is because they shouldn't be there in the first place.

I understand the medical need with scoliosis but they should be pulled after a few years since the fusion would be complete.

Leaving something like that in a person after fusion is unnessary and the doctors are arrogant and close-minded in thinking that there can't possibly be any negative ramifications of leaving a foreign object in the body a lifetime.

[JoAnn5]

Have you had your thyroid function checked? A malfunctioning thyroid can cause those symptoms too, and is much more common and often undiagnosed problem. Lots easier to fix too.

[linzlu26]

Thyroid has been checked multiple, multiple times and ALWAYS normal! They check TSH, Free T3, T4, and all are always normal.

That's usually what the doctors go with first then since that is ALWAYS normal they either lose interest, check for Lupus or forward me to psychiatry.

I don't have Lupus either. Like I said I've been checked for EVERYTHING yet I'm totally ill and barely functioning.

[suzyjay]

I am a little over a year post op and I caught a staph infection from the surgery. I have been on antibiotics for over a year. After the surgery I wasn't recovering well, I was in pain and tired and I was told to walk more to build up my energy and try to lower my dosage of pain meds. I couldn't do it I tired easily and I wanted stronger pain meds forget about lower the dosage. Finally I was in so much pain it was hard to walk and sleep I went back to the doctor and he couldn't understand why I was feeling so bad. He said lets do a blood test and see if you possibly have an infection. I found out that I had a staph infection that is on the bone and hardware and it will not go away unless the hardware is removed. I am taking antibiotics now and I am going back to see my surgeon in Sept, he plans on taking me off the antibiotics and do monthly blood tests to see if the infection is gone and if it’s not gone I have to have the hardware removed, I just pray that I am fully fused. When I am on the antibiotics there are no signs of an infection in my blood test. I had come off antibiotics a few months ago and when I first came off the antibiotics the first blood test showed an infection then the next months blood test show nothing the infection was gone and the third and fourth showed it was there so I was put back on antibiotics. My surgeon said as long as the antibiotics I am taking is working and I am not getting ill reactions from it, he wants to hold off the removal surgery because he feels the fusion needs 2 years before trying to remove hardware so the curve doesn’t return. I hope you feel better soon.


Sue

[Thaleia]

Lindsay, I don't know about the reaction to titanium being a cause but I suffered hair loss after my first 2-stage surgery (which was almost 2 years ago). I developed a paralytic Ilieus and ended up on TPN Nutrition for a week. I was home 4 weeks after being admitted. For me, the hair loss happened when I was 3 months post-op. I had very thick hair that was difficult to tie up and within weeks it was very bare and thin. It took about a year before it returned to what I considered normal. I had another surgery to extend my fusion 3 months go and this time I didn't suffer any hair loss. But it was stressful and not something I had expected at all.

This brief drescription on wikipedia sums it up pretty well.

"Telogen Effluvium -
This interruption is often the result of trauma, such as chemotherapy, childbirth, puberty, major surgery, severe stress, and severe chronic illness.

This trauma causes large numbers of hair follicles to enter a stage of telogen, or rest, simultaneously. After roughly 3 months of the telogen cycle the follicles will enter the anagen cycle, a stage of growth.

The old hair will be forced out of the follicle by a new hair that is formed beneath it. This will cause a period of diffuse hair shedding. This condition is usually self correcting and can affect people of all ages".

Hope that helps somebit.