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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #11  
Old 03-08-2009, 08:38 PM
Maddie Maddie is offline
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Default

Thanks for the referral and help. It is much appreciated. Just one more speedbump....
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C3/4-5/6- Mod. ant., severe posterior bulging w. nerve root compression. Sev. narrowing of spinal canal with cord compression.

L4/5/S1- Mod. narrowing, bulging disc, significant hypertrophy of flava lig.

Highly allergic to all metals.

NEW: 3/16/2010: Successful surgery in Brazil w. Dr. Pimenta; Nuvasive NeoDisc at C5/6, and XLIF & ALIF at L4/5/S1 w. PEEK cages. No rods, screws, plates. Non-metal lumbar ADR not available at present time, so went with fusion.
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  #12  
Old 10-10-2009, 08:47 AM
Maddie Maddie is offline
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Posts: 138
Default Follow up

I finally had a brain scan-MRI- done a few weeks ago, and haven't had a phone call in the middle of the night saying to come in to the neurologist yet So I assume all is well, although I'll call his office next week and ask for a definite answer.

I've had a new development in the past two weeks though. Upon recommendation from another 'spiney', and because I've developed countless food and medicinal allergies in the past year and a half, I sent my blood samples off for metal allergy testing at Duke University in Chicago.

The outcome? I am extremely reactive to every metal that could possibly be used in fusion and ADR surgery, except for Titanium. "Off the charts reactive", are the exact words of the lab manager.

So now I'm searching for something, anything that can be used in me to relieve all my suffering. The real heartbreaker is that I had actually found a surgeon a few months ago who had agreed to do a four level hybrid surgery on me this coming week, but now he won't even answer my emails.

He got the report about the allergies at the same time as I did, and I sent a copy personally too, just in case. So it looks like I'm back at square one. Since everything that has gotten me to this point has come from feedback from spine patients online, I am coming back to ask if there are any other suggestions out there.

I know there is a polyethylene disc on trial in the UK. Does anyone know how to get into that, or is there any with straight titanium out there too?

This can not be a new problem. The lab manager said that the tests were started because of metal allergies with hip and knee replacements, that patients were sick and didn't know why. So the spine implant industry has to be working on something. I just have to find it and get in on a study.

Any feedback would be appreciated. Especially since I don't have MS to worry about now
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C3/4-5/6- Mod. ant., severe posterior bulging w. nerve root compression. Sev. narrowing of spinal canal with cord compression.

L4/5/S1- Mod. narrowing, bulging disc, significant hypertrophy of flava lig.

Highly allergic to all metals.

NEW: 3/16/2010: Successful surgery in Brazil w. Dr. Pimenta; Nuvasive NeoDisc at C5/6, and XLIF & ALIF at L4/5/S1 w. PEEK cages. No rods, screws, plates. Non-metal lumbar ADR not available at present time, so went with fusion.
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  #13  
Old 10-10-2009, 09:54 AM
kimmers kimmers is offline
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Maddie,

What happened to you I think is fairly typical. Some medical professionals do not want to listen until you get proactive.
I am glad that it looks like MS is ruled out.
I see that it says in your signature that you have a consult in New York. Is that Dr. Bitan?
From your signature, it sounds like your top priority is your cervical spine. This is because it says that your cord is being compressed?
Your signature also says that you have significant hypertrophy in the lumbar spine. That usually rules out an ADR because it is known that ADR can put pressure on the facet joints and can lead to facet joint problems and symptioms. Since ADR preserves motion, that movement can lead to advanced deterioration of the facets, especially when there is more than minimal hypertrophy of the facet joints.
Fusion fuses the bone there and the facet joints are taken out of the equation, so to speak.

Harrrison, you can correct me is I am wrong. This is the simpliest way I know how to explain it.

We have a saying, the squeaky wheel gets the grease, which is kind of what you have become, a squeaky wheel. That is good. I would continue to ask questions of the doctors you see and not just accept what they say without getting all your concerns addressed.

I wish you the best.

Kimmers
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hurt back lifting, herniated disc at L4/L5. DDD
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  #14  
Old 10-11-2009, 04:02 AM
ans ans is offline
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Join Date: Mar 2005
Posts: 1,596
Red face

Most definitely a creepy worry. I am glad that there were no lesions on the scan. Does this still mean that a spinal tap is needed?

I have developed pain in new areas that does not feel like radiculopathy, have had weird bouts of vertigo, and am a natural worrier.

Just reading on it's myriad of symptoms, I can see the overlap b/w spine problems and MS.

Good luck to you.

I am seeing an orthopedic specialist on Monday re: new hip pain (but why intense quad pain?) and lower leg pain on my "good" side.

If anyone is in LA, do not get MRIs, etc. at Cedar-Sinai/Mark Taper but rather, at Mink Radiolology. Cedars's w/accept insurance but their prices are sky-high.

See, cognitive impairment.
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Severe, extensive DDD, considered inoperable by Dr. Regan, Lauressen, & some guy at UCLA. Severe foraminal stenosis (guess they can't operate!) and some spinal cord compression that Lauryssen would fix if gets outta hand.
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  #15  
Old 10-11-2009, 04:40 PM
2cool4U 2cool4U is offline
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Join Date: Oct 2008
Posts: 141
Default Another possible cause

Maddie and ans,

I'm hesitant to post this, but with variable locations of pain and frustrating other symptoms, you should at least consider the idea of fibromyalgia or the other related chronic pain syndromes. They have a correlation with back pain, both in their primary and secondary forms. Vertigo occurs, as do frequent headaches and sleep problems.

Just a thought to help you do a thorough search. I don't mean to unnecessarily alarm anyone.

-tc-
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L5-S1 rupture 11/04, left leg pain for 2 wks
Regular exercise/pain-free until 2007
L5-S1 degen. disease w/constant pain since 6/07
PT, ESI, SI jt injections, 3-level nerve root inj. x 2
Massage, heat, ice, TENS, etc
L5-S1 Charite Jan. 19th, 2009, very happy w/decision
New back pain in upper back though.
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  #16  
Old 10-11-2009, 09:06 PM
Jack Jack is offline
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Join Date: Jul 2009
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One thing I think ever chronic pain person must consider is stress. Our bodies react poorly to mental stress. Sometimes I have to just get lost in a book or movie or walk on a pretty day. Prioritize your body's problems and concentrate on just one at a time. Keep the others on the back burner.
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Suffered thru every non-surgical cure known without relief.
Pain management '06 to April '10,
Had minimally invasive PLIF with internal fixation on 12/28/09 for isthmic spondylolisthesis of L5-S1 (TDR contra-indicated) DDD at L3-4 & L4-5, All L-Spine doing well. Episodes of no pain at all. After being relatively pain free for 4 months, C-Spine gave up. MRI due 11-1
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  #17  
Old 10-18-2009, 10:24 PM
Maddie Maddie is offline
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Join Date: Oct 2008
Posts: 138
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Jack, thanks for this reminder. Unfortunately it's my husband who needs to have some stress lifted more than I do. He has taken the news of my surgical cancellation very hard. After over three years of fighting the system and finding a doctor who was supposed to do surgery last week, I'm back at square one again. It's like watching a drowning man and not having a life preserver.

tc, I did have one OS say that he thought I had Fibro, that I had fourteen of the eighteen trigger points. Thanks for that information....I didn't know that the symptoms included vertigo. Unfortunately no other doctor is taking this seriously, and that fellow said it wasn't his field, and to find help elsewhere.

I looked up a few things on the web, and found that food sensitivities may be a big trigger with Fibro. So with a lot of trial and error, I've eliminated almost every food possible and am feeling a great deal better than two years ago. I have gotten off all nightshades (potatoes, etc) as of two weeks ago, and a year ago I eliminated all grains, including rice. When I accidently was exposed to any of them, including rice, I was hit with anaphylactic shock and was in the emergency ward pretty quickly. So now I am on basic meat, fresh vegetable and fruit diet. Thankfully dairy seems to be OK, as meals are pretty sparse. It's amazing how much you can make from so little

Kimmers, yes it was Dr. Bitan whom I saw. What a genius that man is, and how kind and considerate as well. He wrote several letters to my provincial insurance saying that I never should have left NYC without surgery, that I was greatly at risk of quadraplegia from any small incident. It made no impression on them, and unfortunately there is no way that I can afford surgery with him. He did want to do several levels of hybrids, including two fusion and an ADR from the bottom up at S1 to L3/4, and another hybrid at C4/5 & 5/6. How I wish I could have been under his care. The doctor that I found here was going down a similar lane with the hybrids and went to the same university overseas as Dr. Bitan so I have a great feeling about him. Now if I can only get a response from him.

I still haven't heard from the neurologist who ordered the brain scan, even for a followup. But I haven't had the best relationship with him after coming back from Dr. Bitan. He warned me that if I went out of country for surgery that I would be blacklisted here, that no surgeon would want to touch me. How 'bout them apples?

He insisted that the surgeons here were just as good as Dr. Bitan, so I went to see one of our experts. He said that the numbness in my arms and hands was from carpal tunnel, although he didn't do any testing for it, nor did he do any of the hyperreflexia testing to check for compression of the spinal cord. Dr. Bitan found me positive for both the Hoffman and hyperreflexia, but this fellow blew it off as not important. See my problems?

So after a discogram, it was proven that my L3/4 to L5/S1 are pain generators. And yes, I may also have Fibromyalgia, but many of the symptoms seem to be under control because of the very restricted diet I'm on. My cervical levels are critical according to my neurological testing and Dr. Bitan, but I can't get anything worked on now. I am back at square one, but for some reason, my stress levels have gone down. I was almost expecting the results of the metal allergies, so it doesn't seem to be getting me down. I wsh I could say the same for everyone else around me.

If anyone has any suggestions, I'd love to hear them

Oh, I can't find out how to fix my signature. I wanted to change a few things. My appeal is in limbo now because of the positive allergy testing, and I cannot afford to go to Dr. Bitan on my own financing. Both he and the surgeon I found recently have determined that my L3/4 is reactive as well and needs surgery also. But the Canadian one only wants to work on my C 5/6, not the 4/5 also, so he'd be doing four levels over all instead of the five that Dr. Bitan wished to fix. Everyone has a different idea ;-) Just please fix something, somebody!
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C3/4-5/6- Mod. ant., severe posterior bulging w. nerve root compression. Sev. narrowing of spinal canal with cord compression.

L4/5/S1- Mod. narrowing, bulging disc, significant hypertrophy of flava lig.

Highly allergic to all metals.

NEW: 3/16/2010: Successful surgery in Brazil w. Dr. Pimenta; Nuvasive NeoDisc at C5/6, and XLIF & ALIF at L4/5/S1 w. PEEK cages. No rods, screws, plates. Non-metal lumbar ADR not available at present time, so went with fusion.
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