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  #11  
Old 06-10-2014, 01:48 PM
Devo Devo is offline
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Join Date: Aug 2012
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Hi Deemzee,
I think if you feel good, you should wait. I know in my case, I have episodes that resolve with rest so the idea that it can only get worse is not quite accurate. Even if you become symptomatic, it can improve. It is not always, as many say, that if it gets worse, it will stay that way. Now if you have an accident, there is a greater chance of injury but there is also risk with surgery. The main thing is to avoid heavy lifting and excessive exercise with the arms. I have been exploring the idea of disc replacement for four years. Four years ago, I had spastic gait which I do not have now. I've had episodes of arm pain and tremors but if I take it easy, they go away. I would like to exercise more and swim with more than just my legs so I think it is time for me to get this fixed.
__________________
Bad car accident '92
Advised to fuse, I refused.
2004 Dove into pool and got some serious symptoms.
MRI showed signal change in cord. Steroids cooled it down. Have been offered a fusion a dozen times.
Still refuse to fuse.
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  #12  
Old 11-02-2015, 11:45 AM
Deemzee Deemzee is offline
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Join Date: May 2011
Posts: 14
Default what do symptoms feel like?

I last posted a year and a half ago and I'm still struggling with the question of what are the physical symptoms from progressing spinal stenosis. I am starting to feel a kind of "Charley Horse" soreness inside my upper leg muscles but am not certain it's caused by the stenosis. Has anyone else experienced that? If so, is it related to your condition and what happens next? What will it feel like as it gets more severe? When is it "time"? I'm well past the timeframe suggested by all fusion doctors and there are varying opinions from the ADR doctors, with some saying I can wait until it's "time" and others not. My situation is rather unique in that my condition has developed over some 40 years, perhaps stemming from an accident in my adolescence, and it seems my body is adjusting to a cervical kyphosis that appears extremely severe on an MRI but has yet to create much pain for me...yet. Has anyone else experienced "Charley Horse" in their legs? Is that what the "weakness" starts to feel like? If not, what did the pain feel like that led you to finally opt for the surgery?

Thanks so much
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DEC 2010 -- 51 yrs old-- multiple problems with C3-C7 --kyphosis, stenosis, cord flattening that has slowly evolved from a fall at age 12-- not much pain yet but told to fuse 4 levels and looking for alternatives
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  #13  
Old 11-02-2015, 06:08 PM
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randolf randolf is offline
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i have spasms in my legs, sometimes they are really bad and it is hard to straighten my leg, mostly it is easy to straighten it and the spasm is short lived. i also have knots in my legs and back. everybody wants to fuse, i am considering Dr. Clavel or Beirstedt in Europe and Northwest Spine here in the states, they do less invasive treatments
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2007 mri revealed all but 2 discs of entire spine are either bulged, some torn, a few herniated and compressing foramenal nerves or chord c3-4 fusion. myelomalacia at 2 levels, facet arthropathy, spinal and foramenal stenosis, yadda, yadda...
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  #14  
Old 02-05-2016, 11:45 AM
krisharris2 krisharris2 is offline
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Hi Deemzi, I don't mean to scare you, but will tell you my predicament to help you decide. I have several bad discs in lumber area, with severe stenosis behind 1 ADR, and moderate stenosis on other ADR and bad disc below. (2 had Adr's in 2003). In July, started having huge Charlie horses in legs..thought I had a blood clot or something. It went on for a week or so, then magically went away. Fast forward to November, where the all of a sudden, huge pressure in lower back and bonfire burning, to where if I sat up more than a few minutes, let alone walked, a Mack truck would sit on the front of me when I laid back down. Basically, I have been laying down 23-24 hours/day now for over 2 months. Trying to find a doctor to fix me seems impossible now, as they all look at me like a deer in headlights, afraid to touch me bec my back has too many bad levels, with SI joint screws also. I have one dr who is willing to help me, but not sure I trust for reasons I won't go into now.

As of 3 days ago, I literally cannot almost move at all, am in tortuous pain, and feel as if a boe constrictor is crushing the life out of me. No joke. This is twilight zone real. I am waiting on the one dr I have found so far who says I need a 3 level fusion, to order 1 more test, as MRI shows severe stenosis, but myelogram does not. I KNOW I HAVE IT, AS FEEL NEAR DEATH. Feel as if I have run out of time to find other Drs besides ones in Georgia who are crap. Mailed films to Texas Back Inst. but they can't find them. What I am trying to say is, the unbelievable beyond anyone's imagination pain can come on suddenly and horribly. Now I worry that there's no room left in canal and whoever might go in there is going to nick a major blood vessel, etc. This took over my entire body. The nerves being crushed have sent HUGE burning pain/pressure wherever it feels like, up to my chest, behind my organs, on the backside, or down legs. You feel like you are exploding from the inside. My advice as I lay here thinking my life could be over if I cannot find a good dr soon, is to go now. It is going to inevitably happen, and I would not wish this on anyone. Sorry to be so graphic, but I think you need to know. This is pure he.. No exaggeration.
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  #15  
Old 02-05-2016, 01:38 PM
FutureRobot FutureRobot is offline
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. wow.

Please find a doc who will fuse the lower levels. I was always under the impression that stenosis in the lumbar wasn't nearly as dangerous.
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HIZ tear at l5 s1 with mild disc height reduction and mild dehydration.

Last edited by FutureRobot; 02-05-2016 at 03:56 PM.
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  #16  
Old 02-05-2016, 04:17 PM
drewrad drewrad is offline
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Kris, I am so sorry to hear you are in so much agony. I pray that you will find someone who will take care of this. Please hold on until you get a course of action or prognosis. You are going through hell, but I pray you will gain the victory over this right now!
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Weightlifter since 12 years old, now mid-40's and figuring out this wasn't such a good idea.

Chronic back pain started in 2010 while shrugging weights that a 40 yr. old shouldn't even try.

MRI in 2012 showing L4/L5, L5/S1 herniations and L2/L3 bulge.

L5/S1 taking on new shape, chronic sciatica, etc.

DEXA bone scan performed 5/7/14 showing mild osteopenia.

Surgery performed July 9th, 2014, Dr Clavel, hybrid three level lumbar.
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  #17  
Old 02-08-2016, 10:41 AM
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Romakis Romakis is offline
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Quote:
Originally Posted by krisharris2 View Post
My advice as I lay here thinking my life could be over if I cannot find a good dr soon, is to go now. It is going to inevitably happen, and I would not wish this on anyone. Sorry to be so graphic, but I think you need to know. This is pure he.. No exaggeration.
Kris,

I think we are the only ones (people on this website) who can possibly imagine what you are going through. My Dr. in the US is one of the best fusion doctors that I know of. Please let me know if you want the reference or help getting in touch with him, I will help in any way I can.

(Sorry to the topic starter for hijacking his thread....)
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46yo, DDD of L4-S1. Microdiscectomy L5-L4 in 2014. L4-L5-S1 M6 ADR with Dr. Clavel - June 2015.
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  #18  
Old 02-08-2016, 11:22 AM
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Romakis Romakis is offline
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Deemzee,

I knew when I decided to play sand soccer with my son last May. All I did was goalkeeping. I was in hell for 2 weeks afterwards, and for the first time I realized that I would not make the transatlantic flight. As soon as I started to feel a bit better, I booked the flight and the surgery.
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46yo, DDD of L4-S1. Microdiscectomy L5-L4 in 2014. L4-L5-S1 M6 ADR with Dr. Clavel - June 2015.
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  #19  
Old 02-13-2016, 09:04 AM
JinSong JinSong is offline
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Join Date: Jan 2016
Posts: 57
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I really hope that everyone on this thread is able to get some relief--sending good thoughts out there. Kris especially, I hope that you're getting access to resources for immediate help! That must be so terrifying, and I hope you have some supportive friends and family to assist you while you get through this crisis. It seems like people on here have plenty of recommendations for good surgeons, but I thought I'd also toss out there that Barrow Brain and Spine in Phoenix, Arizona will do a remote consult from anywhere in the world using your MRI scans and medical history. I found the extra information to be helpful and easy to get.

As to the initial question, I've asked that of the surgeons I've talked to, and, like everything else, they seem to have slightly different opinions. One guy I talked to said that he's seen even very severe nerve or spinal cord damage improve (he was the least antsy to get me into surgery, naturally. He also didn't do ADRs, as it turns out, and that he wouldn't do a fusion on me until I couldn't walk normally--my disc issues are cervical so right now everything's in my arm/hands). Another surgeon was very casual about it and said that I was certainly risking progressive or permanent damage the longer I waited, but that it was more my choice how quickly I wanted to address it surgically. The third one did the most thorough neuro exam and was extremely concerned about the spinal cord symptoms--weakness/clumsiness, and told me that already it might never recover and surgery would just be to prevent further damage.

That last surgeon also said that the different symptoms tend to have different recovery rates/probabilities. He said that nerve pain usually resolves first, followed by numbness and tingling, and then the weakness and clumsiness from the spinal cord damage was the slowest and least likely to recover fully.

So I guess the answer is contingent on a few things--what various surgeons have recommended to you, what types of symptoms you have, and personal preference. Some people want to avoid surgery at any cost, while others just want to fix the structural anomalies quickly. Both are risks, just different types of risks. Personally, I'm definitely scared of surgery, but I'm in the camp of preferring to gamble on surgery rather than playing the waiting game. Any potentially permanent nerve or spinal cord damage is just too big of a risk for me not to actively address, and the associated nerve pain is driving me bonkers--better to lop out a disc than lop off my arm!
__________________
33-year-old female
C3/4 Disc bulge and bone spurs
C4/5 Disc protrusion
C5/6 Disc extrusion with cord compression, bone spurs due to uncovertebral arthropathy, right foraminal stenosis and bilateral nerve compression.
C6/7 disc protrusion

Lost appeals for ADR. C5-6 ACDF on 3/10/16
ACDF never fused, and ACDF accelerated damage of the other levels. Someone please kill me.
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  #20  
Old 03-07-2016, 08:41 PM
krisharris2 krisharris2 is offline
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Join Date: Dec 2015
Posts: 4
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Yes, I found a doctor that will fuse all 3 levels/decompress, but just when I thought I could be saved, the other surgeon I went to that same afternoon said he thought that my artificial discs were the proble, that it looks like they have moved slightly towards my spinal canal, and that they would need to be removed before the 3 level fusion/DECOMPRESSIONS. A mega surgery he didn't think I could make it through, also considering I have a connective tissue disorder. So now I am trying to gather what little sanity I have left to compile and send copies of all films, etc. to Dr. Clavel, Dr. Bertagnoli, and Dr. Pimenta since they have removed them before, and try to get a united opinion. I would be scared to fuse over bad artificial discs, and have to redo that surgery. I barely made it alive putting the adr's in, let alone this. So sorry to be so negative. These past 4 months have emotionally traumatized me so much, as I feel I will be leaving my son forever, with such a mega surgery and small odds of making it. It is killing my heart.I cry so much everyday that even my dog is traumatized, and I love my dog. He is one in a million. My son is mentally ill and I do not think he will make it if something happens to me. He doesn't live with me right now. He's at a treatment center for one year, thank the Lord. I am so sorry to be blabbing it all out. I am just literally crushed and so is my heart.
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