maybe more surgery!!!!

[milly]

hi everyone,
my name is milly and i am 31 years of age.
i will tell you a bit about myself before i ask for your advice!
my curve was found when i was 16, and i had surgery performed when i was 17. i wore plaster for about 5 months (i think that was how long, about that anyway) and a brace for about 6 months after that.
my problem now is that i have been experiencing severe pain in the base of my spine. i recently went back to visit may surgeon and he has requested an MRI be done and then a decision about another operation will be made.
the problem seems to be that the base of the spine is taking all the weight and pressure that the rest of the spine cannot take and it is causing the problems.
firstly i am wondering if anyone has been through this (you probably all have) and how were you treated or did u have to just cope with it.
i am really worried about the MRI scan as i have been told that it is magnets and this can be a concen.

thanks for reading my letter and thankyou in advance for any responses.

take care all.

[LindaRacine]

Hi Milly...

Disc degeneration below a long fusion is a relatively common problem. The first free disc below my fusion (L3-L4) is blown. At some point, I'll probably have to have my fusion extended by one level. Or, if I can wait long enough, I think an artificial disc might be a possibility. I'm told by people who have had their fusions extended by one level, that the surgery is a pretty simple one in comparison to the original scoliosis surgery.

Good luck.

Regards,
Linda

[danell34]

Dear Milly, I'm kinda in the same boat you are. Although I was a little bit older when I had my first sugery(34 yrs. old). The dr.s told me that would be a possibility they would have to go down to my S-1 (I currently have my T-4 through L-5 fused with instruments) later if the disc got "worn out". But it's only been 4 months and they already want to do the second surgery. In my case they didn't mention an MRI ,so I'm not sure about that but that is a good point I never thought about that!!! But I do know it's better to do it now than later , the recovery is harder the older you get. I wish you the best of luck! I hope it all works out for you. Danell

[LindaRacine]

Hi again Milly...

MRIs are perfectly safe for people with spinal implants. The only problem is that the metal (assuming that it's stainless steel) will cause distortion in the image in the area of the implants. If you have titanium implants, there will be no such distortion.

Regards,
Linda

[SandyC]

Milly,
An MRI is no big deal....I have had 4 MRI's with and without metal in my back. There has been absolutley no ill effects, either during or after.
SandyC

[Diane Quinlan]

I thought you can't do an MRI if you have hardware in your back...it distorts the picture so that the physician cannot read it. I had my fusion and Harrington Rod 25 years ago and now am having terrible pain. It's apparently nerves that are pinched by the curvature. My curve is 80 degrees now...it was over 100 degrees before surgery. I just saw a surgeon who ordered a myelogram to be done so he can tell exactly where the nerves are that are causing this pain. He told me that I could have an MRI if I didn't have the rod. I'm terrified of having a myelogram because I've heard that they are painful. I'm hoping they will use sedation. Have any of you had a myelogram? And please let me know about the MRI....I would be so happy if I could have that done.

[Diane Quinlan]

I thought you can't do an MRI if you have hardware in your back...it distorts the picture so that the physician cannot read it. I had my fusion and Harrington Rod 25 years ago and now am having terrible pain. It's apparently nerves that are pinched by the curvature. My curve is 80 degrees now...it was over 100 degrees before surgery. I just saw a surgeon who ordered a myelogram to be done so he can tell exactly where the nerves are that are causing this pain. He told me that I could have an MRI if I didn't have the rod. I'm terrified of having a myelogram because I've heard that they are painful. I'm hoping they will use sedation. Have any of you had a myelogram? And please let me know about the MRI....I would be so happy if I could have that done.

[Diane Quinlan]

I thought you can't do an MRI if you have hardware in your back...it distorts the picture so that the physician cannot read it. I had my fusion and Harrington Rod 25 years ago and now am having terrible pain. It's apparently nerves that are pinched by the curvature. My curve is 80 degrees now...it was over 100 degrees before surgery. I just saw a surgeon who ordered a myelogram to be done so he can tell exactly where the nerves are that are causing this pain. He told me that I could have an MRI if I didn't have the rod. I'm terrified of having a myelogram because I've heard that they are painful. I'm hoping they will use sedation. Have any of you had a myelogram? And please let me know about the MRI....I would be so happy if I could have that done.

[sandrabrown]

Hello, All, I am new here and I have harrington Rods, they have been there for 30 yrs, I have 3 & 1/2 ribs missing from birth, inwhich the Dr. said caused my scoliosis, all went well for 24-25 yrs. now all is not so good, I live in Ky, I saw a Dr. last month in Louisville, Kentucky who said my rods were stable?? for now, I may need surgery down the road, but not now, all though he also said I did have flat back syndrome? he wants to sent me for cortisone injections at my local pain center, It has been a month and I yet to have gotten an appointment, so, I believe I need another opinion, any suggestion's for a new Doctor, or help finding one would be greatly apreciated. Sandy

[Carole]

My doctor had told me originally not to have any MRI's. Then, this past year, my primary care doctor ordered one. Until I arrived at the hospital, I wasn't quite sure what test I was having (my first mistake). When I was informed that it was an MRI, I became very frightened. No amount of them telling me that it wouldn't harm anything would calm me. Finally, the doctor of radiology came in and spoke with me. He assured me that the only thing that could go wrong was the the metal could interfere with a good reading. He further assured me that I was in no danger of "cooking" which is what my other doctor had joked about.
Anyway, I did calm down quite a bit and went ahead with the test, and nothing untoward happened. I will never be afraid again. It's awful how a few comments made (possibly off the cuff) in jest stick in one's brain and cause future problems! I am not sure if my Harrington/Luque system is stainless steel or titanium. I just know that the MRI did not do any damage. It may have been harder to read.
I hope that this helps you with your decision.
Best of luck to you,
Carole

[sandrabrown]

Carole, my rods are stanless steel, and the are disigerenations, I have cronic pain all the time, thanks for your reply. Sandy

[spincon58]

Hi,

I'm reading all the revision to make sure I ask the surgeons whats best before my surgery.It seems that titanium is better than stainless/? should I insist he use titanium?

[SandyC]

I don't believe that either stainless or titanium really makes a differance. I believe that one reader (sandrabrown) said that her rod is disentragrating (sp). It's not the metal, it is her spine that is perhaps developing OA (arthritis) or a disc problem. The only big differance in the metals for surgical use is that the titanium is less likely to set off the alarms at the airports!
SandyC

[LindaRacine]

There are pros and cons for both stainless steel and titanium. I would personally never try to convince a doctor who specializes in scoliosis, to use something against their will.

Carole, I don't think Harrington rods were ever manufactured in titanium.

--Linda

[Carole]

Linda,
Would the Luque be Ti?
Carole:rolleyes: :rolleyes:

[LindaRacine]

Carole...

Luque rods involved using a Harrington rod with wires. I believe it is all stainless steel.

--Linda

[Carole]

Hi Linda

I checked the piece of rod from my back, which I thought said "titanium". Are you surprised that it does not say that? I should have known better! The word just keeps sticking in my head! Sorry! (It actually says "terminal"!)

I am "hunting and pecking" with right hand in large cast after ortho surg for basal joint arthritis and a ganglion removal. Hence the abbreviated language.

BTW, is your site still functioning?? Had trouble with it last nite.

Sincerely,
Carole:confused:

[LindaRacine]

Hi...

Glad you're past the hand surgery. Hope you heal quickly.

I'm not sure about last night, but my site is working right now:

http://www.scoliosislinks.com/

--Linda

[Danite]

Good morning, first as a senior individual that recieved the first Spinal Fusion in the State of Michigan in 1954 at the good young age of four years old I do not have a rod or any metal of any kind in my back.
At this age I wish that I would have had, my curvature is extremely severe and does cause me discomfort and pain most of the time. I can not sit or stand for any length of time without adjusting my position, or sleep during the night without waking up. Presently I only take Ibuprofen 600 as needed for pain, I will be honest and sincere with you and say that presently during the summer it is extremely diffiuclt for me. I will pop Ibuprofen like candy at 600mg per tab.
At the sametime, I'm employed full-time as a Vocational Rehabilitation Counselor, buying a home, and have two wonderful beautiful daughters. I would not change my life for anything, I have adjusted with my disability and have taken control of my life.
At my age and at my career level, it is time that I focus on assisting my brothers and sisters with Scoliosis, it is my wish to locate a professional position within the State of Michigan working for inclusion of individuals with Scoliosis.
Please if you know of any Disability Rights Organization, Non-profits or Agencies looking for a highly motivated, determine and successful person with a disability, forward it to my email address or post a reply.

[MindyG]

Milly-
I am 35 years old. I had a milwaukee brace starting in 5th grade for three years followed by 2 herrington rod surgerys. I hadn't had any back pain until I started having kids. By the time I had my third (who is now 2) and last the pain in my lower back was quite severe at night. I had a MRI last December. It took about a half hour, it was loud and a little uncomfortable laying on my back flat like that for a half hour, but I was fine. I knew I had to get it done so my doctor could see what's going on with me. I was diagnosed with Flat back syndrome. Don't worry about the MRI. Just get it done so you can move on to problem solving your situation.

Mindy