re: friend with harrington rods & problems!!!!

[davonne]

hi everyone!
i just found this site and i am hoping to get some help for a friend of mine.
she is 34 years old when she was 14 she was disgnosed with scoliosis. she had harrington rods placed at that time. she has 3 small children. after her 3rd child, she started having these pain in her thoracic spine, tingling in her arms and hands. she went to the doc who done her surgery and he said everything is ok. well, now she is having these same problems plus more. she has a lot of pressure in her head, she has these spells daily, she cant speak, she can hear and see. she gets real weak her eyes get dilated. and it last for a couple of minutes and goes away.
she notices when she is up doing things with her arms and hands. i have seen her have these spells and it is terrible. she even does sometimes when she is driving and turns her head a certain way or raises her arm. she has seen ortho, neuro, vasc surgeon, cardio, and has had mri,ct,ultasounds,myelogram,tilt test and more. her docs say all tests are normal. iwas reading her myelogram and it says "the thoracic cord is not adequately seen due to scoliosis and rods are posterriorly. the thoracic region largely obscured due to rods and metal threads. "
the doctors are saying this is anxiety! she doesnt feel this is her problem and neither do i . i feel so sorry for her. she is a go-getter and loves to do all kinds of things. the doc said here is some effexor take this and you will be ok!

please help with any suggestions for her!!!

does anyone have these probs or ever heard of this?
thanks so much!!!!

[spincon58]

wow,
I feel so bad....that is a huge amount of symtoms..did she have her babies natural or C-section???

[davonne]

hi!


she had all 3 babies natural. her epidural block would not take.

i feel so bad for her. i just want to help her find someone to listen and give her something besides an antideppresent. she has never been depressed, all this that is going on with her would make me depressed, i know exactly how she feels, i had the same thing happen to me but it was female probs and it took alot of doctors to finally figure it out.
have you ever heard of these types of problems?????
could it be a pinched nerve??
i would appreciate any feed back i can get.

thanks,
davonne

[spincon58]

Hi,
This is very hard to figure out since i'm not a medical doctor....the only thing i can suggest is that she keeps all her medical files to herself and copies of all her test results...than keep going to doctors that will listen to her...a good doctor that can figure it our.t
this is not anxiety something is wrong...she needs more blood test ...but mainly search for a doctor...good luck keep us informed

[wpg. Deb]

Hi i am new to this sight and i am having odd things happening also. Mine started last year when after a really bad strepp throat infection(I was throwing up really Bad) I noticed when ever I turned my head it would go numb. I was like a split secound head rush of numb. Made me feel Very disoriented. It has gotten worse it happens all over my body and now i Have body twitching. But I just found out my rod is broken, waiting to get in to a ortho spine specialist. Very scary.

Tell her to keep looking, use the internet to find doctors also.

[spincon58]

Dep,

I'm sorry to here that.....It may be that a revision surgery is in your future...they can keep broken rods if they are not hurting but it seems yours are doing damages to your nerves....good luck

[wpg. Deb]

Wow that was quick. Have you had revision surgery. It dosn't seem pleasant, from everything I've read. When was you original surgery.
Deb

[tric]

I have a broken rod as well. It happened atage 14, only 2 years after my surgery. I ran a go cat under a schoold bus and that is why it broke. It has remained boken for 15 years now whithout problems. Since I had no problem my doctor decided to leave it in. In the past three to four years I have started having trouble with my right sholder blade. If I move or twist a certain way, I get "stuck". I get to where I can't move and it is quite painful.

Has anyone else experienced this?

[Scurve83]

Davonne,

I have the same symptoms. I actually ended up staying in a hospital for 7 days and they still couldn't figure out what was wrong with me. I collapsed in the supermarket, but I could still hear everyone who was speaking around me. I just couldn't respond to them. I couldn't talk, my eyes kept twitching and my whole body went limp. The hospital told me that I had a Pituitary Tumor, but then that was taken back by a Pituitary specialist at UCSF.
I am beginning to feel like a complete nut job because all these doctors keep running me around in circles.
Luckily, Dr. Berven at UCSF wants me to do the CT Myelogram to see if he can find anything.
Here are some of my other symptoms:
Fatigue
A lot of lower back pain.
Shooting pains in the back of my legs when I lay down or bend forward.
Sometimes my right or left eye will droop down and then it simulates a stroke.
Pain in my hands, to the point where I can't use them.
My arms will get limp or painful, this coincides with the hand pain.
My scar and spine are very sensitive to the touch.
I can't stand, sit or lay down for extended periods of time because of the pain.

I hope this helps in someway.. just to know that she's not alone.
Contact me if you'd like :)

*Crystal*

[mdeborah8]

hi...i posted yesterday about my symptoms, wondering if anyone else suffered like i do. I guess this answers my question. I have also been given the run around for years by doctors. They always want to hand u an antidepressant and send u on your way. A couple of months ago my whole body went into shock. Ive had recent incidences where my bf said my whole body was turning purple. The hospital told me that i had a severe kidney infection but ive been through i cant even tell u how many rounds of antibiotics. I go back, the doc runs blood work and it is normal, but i am still sick. I am convinced that all of my health problems are related to my back but no one wants to listen. Grrrrrrr.....

[Karen Ocker]

Have either of you consulted a rheumatologist?

Sometimes bizarre symptoms can be caused by an autoimmune condition totally unrelated to the spine. A rheumatologist can find out. Autoimmune conditions are very difficult to diagnose and need specific medications.

[mdeborah8]

No....the doctors have been very unreceptive to anything i have to say and basically they think it is in my head. Im on medicaid so they dont really like to refer out. Last time i was prescribed prozac, sent home and two weeks later went into shock and found out that i had a severe kidney infection and was only a few days away from dying. I had had at least ten visits to the doctor previous and about four emergency room visits and was basicallly told nothing was wrong with me and now suddlenly i have this mysterious "kidney infection". Lets just say ive given up on doctors and i trying to live as best as i can and wait for the next chip to fall.

[Karen Ocker]

If you live near a university hospital you can check out their rheumatology clinic. University hospital clinics have the most up-to-date care. They should take Medicaid. I find Medicaid patients do not always get the best care going to private doctors in the community.

If no teaching hospital is near you could you ask around for a better primary doctor? I was not aware that you need a referral on Medicaid to go to a specialist.

Karen