Mild to severe C-spine canal stenosis- need your expertise, please!
I need your help before I go back to my neurosurgeon. It's like having two finals but only having time to study for one. I'm one week post-op for a TAH/BSO, due to extreme bloating and adhesions. So I'm having trouble sitting upright for very long. It's so hard to be concise about these delicate things, though....
In 1989 I had a microdiskectomy at C5-6 with no fusion. I seemed to heal well, but I think I did reinjure myself a few times. You know how you slip off a curb or a step and jam your spine? That type of thing did not help. So I developed constant pain, which my PCP fianlly labeled fibromyalgia.
This past year, and particularly the past few months, have been a medical nightmare of pain for me, and I consider that "I don't have a life" anymore. I have a huge file of medical papers from last year, and it looks like this year will be the same. Finally, this Fall, I realized that I was now the guest of the insurance company, so I begged my PCP for another C-spine MRI; I hadn't had one since about 1991. Here are the results:
...straightening of normal cervical lordosis which may be reflection of muscle spasm or positioning. Mara signal is normal at all levels. There is loss of signal in the intervertebral disc spaces suggesting multilevel disc dessication. Sagittal images reveal significant disco genic disease at the C4-5 through C6-7 levels. Specific abnormalities as follows...
C2-3: spinal canal generous and neuroforamina are patent. No disc herniation or protrusion.
C3-4: Mild central disc bulge causing a mild impression upon the ventral surface of the thecal sac...minimal canal stenosis... neuroforamina are patent... no disc herniation.
C4-5: Moderate canal stenosis with relative effacement of the arachnoid space and mild flattening of the cervical cord. This appears to be the product of a broad based central and para central disc bulge...accompanying narrowing of the neuroforamina.
C5-6: Moderate to marked canal stenosis causing effacement of the arachnoid space and flattening of the cervical cord... enhanced by right worse than left para central disc bulge... no frank herniation... neuroforamina narrowing, right worse than left.
C6-7: Severe canal stenosis with complete effacement of the arachnoid space and flattening of the cervical cord. The stenosis is enhanced by a moderately large broad based disc bulge probably with a small extruded disc fragment at the left para central region.... neuroforamina significantly narrowed...
C7-T1: spinal canal more generous now with only mild stenosis... no disc bulge or herniation identified... neuroforamina patent.
At no level is abnormal core signal identified.
This does not mention the spurs, but they are there, too. Most of my symptoms involve feelings of heaviness across my neck, upper back, and shoulders. I feel like Atlas, with the weight of the world on me! Then about a month ago, I developed feelings of *****ling down both legs and into my feet. I think that has been there for some time, only not as pronounced, but my PCP, feeling sorry for me by this time agreed to a lumbar MRI:
FINDINGS: No disc herniation identified at any level... a mild broad based disc bulge at L3-4 level causing some narrowing of the lateral fornices.... varying degrees of ligamentum flavum and facetal hypertrophy in the mid to lower lumbar spine consistent with (DDD)...varying degree of canal stenosis which is most severe at the L3-4 level and is... moderate. Cornus medullaris terminates at the T12-L1 level... vertebral body height and vertebral body alignment are preserved.
In October I saw one NS, and he prescribed EDS and possible trigger point injections, as well as flexion and extension X-rays. He said until he saw whether things were really loose in the X-rays, he would not at this time tell me I had to have surgery.
So I had the 3 EDS, and I think they certainly helped some of the pain and certainly mobility and flexibility. The anaesthesiologist could find no real focal point in order to do trigger point injections, though, so we didn't do them.
Just after the first EDS, I was able to see another NS, and so he was able to hear how that had helped, and he saw the X-rays, as well as the MRI films. He said the EDS would only stall for some time, and he definitely recommended surgery, plating with titanium at three levels. He said he would use something he had developed (the plate or screws? I don't know)....
So, because of the severe neck problems, I had to have an "awake fiber optic nasal intubation" for my abdom. surgery. This second NS immediately told me to not have an endo trach tube, when I told him I already had surgery coming up. The intubation was awful, and I remember fighting off the techs, trying to cram that tube down my nose (I don't think they has me under enough, and I didn't know what I was doing! It just hurt!!!!) I'll have to have it for the neck surgery, too. I'll bet all of you have had it, too!
So is it true that I NEED surgery? Is this optional at all? I've read briefly here of all the various tests you have gone through, and none of them have been prescribed for me. Is stenosis different? More cut-and-dried?
I see this second NS in another few weeks (he's really hard to get in to- have to jump through hoops!), this time to specifically ask surgery-type questions. And I need to know more about what to ask. I think the first NS is out, for me; he did not want to hear about any of my lower back/leg problems. He seemed way too rigid for me. I understand that many of them are too brilliant to have a bedside manner, but if there is a choice... Should I seek a third opinion? If I did, it would be an office mate of the second NS.
It's hard for me to sit long (writing this has been a real trial), but I wish I could read more of what has been posted here to hear your stories. Just not yet.
No suggestions? Over 50 viewers, and no one can tell me anything about stenosis and whether surgery is necessary, whether or not there are many other symptoms?, etc., etc.?
I've gotten back from the hospital.... again. Please help me out a little here!
Thank you to all takers.
I'm so very sorry you are suffering so. I truly wish I had some answers for you but I'm afraid I am just in the process of educating myself on all this stuff. Have you tried posting this on the "back problems" board? I have found them all to be truly helpful. They seem to have a great deal of info and are always helpful and friendly.
Again, I so wish I could help, but my prayers are with you and if nothing else at least my response will bump this post back up there.
Diagnosed DDD 1993
C4-C5 posterior osteophytic bar effacing ventral thecal sac Mild stenosis of neural foramina
C5-C6 posterior disc protrusion effacing v t s .Mild stenosis of neural foramina
C6-C7 posterior disc herniation effacing v t s . Mild stenosis of neural foramina
C7-T1 Small perineural cysts present in both neural foramina.
left convex scoliosis of mid thoracic spine. wedging of T7. wedging of T5 .degenerative end plate changes at T8-T9
L4-L5 diffuse disc bulge effacing v t s. hypertrophy of facet joints, minimal central spinal stenosis.
L5-S1 posterior disc protrusion with associated tear of annulus fibrosis. hypertrophy of facet joints.
Thank you for your response. I don't know what all your MRI information is, either, but I hope you can find answers for it all! You know, our bodies were so cleverly designed, and it's truly miraculous when they work right. But, oh, when something goes wrong! Watch out! The amazing thing is, I'm still trying to see myself as basically a healthy person; I just have a few little things that have to be taken care of, first.
Thanks again, and I think I will post on the back board.
HI Winged Phantom,
I'm sorry I didn't respond sooner but I have not been up to par. So here goes, how severe are your symptoms? Do you have balance issues, is your walking impaired. Also of great importance is your reflexes, The more abnormal they are , I think reflects the more cord disfunction. In the end only you can make the surgical decision, but you have to realise that stenosis is progressive. Some peoples symptoms can stay relatively stable for long periods, but it does not go away. Did they say that you have Myelopathy? That is the spinal cord dysfunction, if you have that i would have the surgery sooner than later. Read my posts on symptoms and progression.
I wish you all of the best in whatever you choose.
Most important question is the precense of myelopathy and if not, you have more time if you can tolerate the symptoms.But this condition will not get better on its own, the best you can hope for is that it is stable.
My only other suggestion is to do some research and learn all you can, it is your best defence.
Once more good luck to you, keep us posted on how you are doing. Mel
Congenital Cervical Stenosis,complicated by:
Paracentral Disc herniations ,bone spurs C4/5,C5/6,C6/7
loss of lordotic curve
Advanced myelopathy inc. walking difficulty, loss of gag reflex with swallowing problems, neurogenic bladder, occipital neuralgia, spacticity
Thank you so much, Mel, for your response. I've been doing a lot of research now through the boards and some on the rest of the web. I'm now armed with a long list of questions for the doctors.
I don't know if I have a myelopathy or not, but I will ask at my first appointment in a few hours. I know I have severe "heaviness" in my neck and shoulders, and I don't write as well as I used to (gee, I thought it was just the prolonged computer time and typing), etc. I hope this physiatrist today will be able to test out everything; specifically I'm going because of leg symptoms.
I have a feeling the surgery is unavoidable, but I am back-peddling for fear of more surgery and more down time. I think I definitely have cabin fever (am just 3 weeks post-op for abdominal surgery; 1 week was spent in the hospital). I need to get out and walk and get my strength up again.
I'll post back when I know something. Thank you again, Mel; you definitely got me started in the right direction.
Re: Mild to severe C-spine canal steno sis- need your expertise, please!
hey wait a sec, so I wrote you all, a thread on pain and really trying hard to fix myself as I am on Fentanyl now, and its bad bad paid, too long, and I don't now what doctor to call for leg and arm and feet pain, and I have lots of degeneration, some steno sis, and a lot of bulges etc that I have n clue what to do with. I do not know how my first question will be answered and second, its possible I suppose, no one will answer at all. I just read the results of others for now. I am not sure how to find my answer of this same web page the two docs in the yellow background, lead to this board, and not to bother others, but my degen and lesions, have put me down for 2 years. I have only a neuro, but I think another sort of doc does degen work, but due to the lesions, he works on my with temp triggers and botox of the head and neck, and back, jaw and temples, and a dot for safe keeping beside my eyes he is always kind to use the last drop on the 53 year old eye, but I do not beg, as I am a nut about skin and care and sun block, and he is so sweet to keep me, free of wrinkles, but I had the forehead and lower eye fat taken out and laser. Works well at age reduction. But that I know of, and I could be really wrong, no one wrote me back, and I have lots more going on, and not in this life will I ever work, outside of my own home, as I can not carry a pot, without two hands, now. But I think I got no answer to my question. and wanted to know who works on folks with a bunch of steno sis, spondylitis, colitis, bladder loss of nerve, brain lesions, and number arms and pain. The one woman I called and there was an email, and I sent all my mri of 2 years and my SS and LTD responses by docs, as I can't talk doc talk, I just am not well, Any idea how to get an answer, or am I asking too much. I did follow up with the crab tree lead, but no response, and I sent a whole lot of private info, and am very embarrassed, as not that she knows me, I am just a dummy, (another issue) I seem to be very dumb these days. Confused dumb and well fatigue and in pain, so not a very good home person even. I have via my nutritionist found a way to eat, and be alone, and eat well. I am drinking ACAi juice and those super new pro biotic bars Attune, made her in the city of San Francisco, they have a web page I have not explored but should as the product is super and I thank you can order and read about the new food, and it is killer, amazing stuff, all so far only at Safeway, and of course, who is not eating Fish Oil and blueberries if they have inflamed bodies. Jeez I was told that sea food is not good for inflammation disorders if it has a shell, the others like salmon and fist, with omega three are good though, (sure do miss the days of Fresh Crab), and Quinona every day. 1/3 of my body left my structure last year, and docs are very concerned, as I have 5-7 confirmed diagnosis, colitis, migraines, brain lesions, lots scattered, and nerve loss in the bladder, and disc degeneration all over to my butt. We did not mri my legs, and man I wish they did.
the colitis micro, lymphatic, ulcerative and collagenase type, rare and very hard to diagnose, so no stranger to long waits on the diagnosis, but all of this keeps me down for hours a day. Its not even flared, just the type I have, and from 2-12 or all day after the worst is over, I just am glued to porcelain, and am grateful this house has three of them in the living quarters and one in the cooks and maid's area, which we do not use, we are not wealthy, we just got a big house at the right time. Where does one get the answers they ask, and its so embarrassing to find out your name is all over the web, and no answers came.
I love this board anyway, very many good questions and answers despite my loss, I gain by reading this site. The peope are real people in real suffering. That is so helpful, as they tell success stories and also convey trauma too, and you feel whole and part of the world. Thanks to all, all the boards I view, Simone.
Re: Mild to severe C-spine canal stenosis- need your expertise, please!
Hi - now you are in the right place. Hope you are healing well from your surgery.
Anytime you have spinal cord flattening it is something to be agressive about. You have cord flattening/compromise at multiple levels in your cervical spine. Yes you are going to need surgical intervention if your doctors say you do. You didn't state what procedure they are recommending or I completely missed it.
Basically all the spine surgeries to deal with this stuff are intended to do the same thing - open up space. There are different techniques and it can also vary doctor to doctor. Once you have details of what NS is recommending come back here.
Your lumbar findings are probably not very interesting to a surgeon. There is strong possibility that your cervical issues are causing pain/tingling/numbness downstream (legs - feet, etc) read other peoples posts. If your problems follow the dermatome/nerve distribution of your problems levels, then extensive testing wouldn't be done. Some of the posts you read are from people who have problems that don't exactly follow the findings of their MRIs. We pretty much all have the same problems, they just come in different flavors.
If you read alot of the posts on this board you will get a good education and also arm yourself with more questions. I prescribe to the thought that multiple opinions are good but they are useless when the doctors are in the same office (they usually agree with each other). We do have a list of questions to ask the doctor if you search the older posts.
Re: Mild to severe C-spine canal stenosis- need your expertise, please!
i also posted this on pain management but the people there suggested i reply on a thread over here as my issues are basically pain and depression from spinal problems. last year i did a year of medication to clear my hep-c and i think the meds aggravated my joints and made everything worse.
i joined the board because i know how helpful it is to be part of a community of people who are going through the same issues. my name is nialla, i'm 46 and a single mom of a 51/2 year old little girl. i'm in chronic pain in my neck from spinal stenosis and herniated disks. i've been so mean to my daughter i feel ashamed of myself, but i can't even control myself anymore. in december i had a cortisone injection but it didn't help. i've been taking relafin but it is also ineffective. i;d also been taking vicoprofin 7.5 mg's which helped somewhat, but narcotics are a dead end and i have a habit of using them to cope with life. so i tried to wean off them but my pain is unmanageable so i'm back on them again. i'm very depressed and spend most of my time crying. i do stretch a lot and i go to physical therapy, but this has taken over my life ... i took my 2nd dose of cymbalta this evening (30mg) my insurance won't even pay, i'm getting samples from the doctor. it's making me feel weird, last night i had to take some atavan to cut the edge. has anyone tried cymbalta? did it help?
Re: Mild to severe C-spine canal stenosis- need your expertise, please!
Wow, were all a mess, and all not getting what we need, that is actually comforting alone to know.
I thank whoever wrote after me,as I did get anemail that his board had replied.
So desperate and to even know what sort of doctor to go to is a challenge, when you lived fine.
I am so so sorry for the woman with the young child., If you ived in SF I would be so happy to take her off yoir weary bones, as I do not have young kids, mine are big, but really are not useful, as I did not train them to help and my husband did not eitherl
I do hope you are on SSDI from your job, and not attempting to work, as you sound so sad, and it seems you need a full round up of treatment, and if you are poor, then the insurance to pay for all that you need would come.
I know,my meds are about 15different ones and some are 8 a day, 6 a day, and some cost over 1200 each month to buy. My stop loss at medco is only 750, and to a mom not able to cope, it sounds like you in no way would cope to handle even the application process. That I did do, but my husband, sister and my gatro and neruiro all were for me not working ever again. When I lost the ability to pee free, and aw the urologist and put on prostate meds as a femaie, only makeing the tired fact real bad, as they are very zapping.
I don't think any one can give personal info out, but I feel so so sad for you.
About the drugs two of you mentioned, they are horrid, and the side effects are the effects we have , so take the pill and double your trouble.
I am in that boat now, once and in my case all but the lesions are diagnosed Where do I get sent - to a top notch doctor not in my health plan for the fine fee of 650 an hour to talk about happy pills. I am not manic, but I can not take any of hose pills. I take clonazepam for tremor and that is itl It does not alter me in a heady way, I do fall asleep and I am on 24 mcg of Fentenyl, do not want more, as if they take me off, that will be hard but I know how it felt as the neruo was presecribing it and I took the burdon off his hands as he does not feel comfort witht this, unless it is time to die time. I like him and the last thing I want is to make ta fine man uncomfortable and asked my gastr, who knows me to rx and no trouble as he knows me far better and Ia m lucky to be able to say all care, but down the physco lnae is not the road I want, and nor is it the one I think I need.
I think I need mri of neck to toes, and perhaps ct sacen. I can walk and move, after I take my 400 mg of provigil.
But no I hate the pain drugs for depression that seems to be mainstream.
its like taking Tylenol with the wost side effects and your brain is suicked up into places you have not idea exit s, and in 15 years, Two made me feel better. Prozac but I was called to horrid and pushy but at the time, my fears left me, and I was able to promote myself up the career ladder, not that I can work, or even committ to breadj fast today. I am a mess, and it is not expected that I will get better at all.
I also liked the way I felt on Paxil, however I got to **** my pants on that. That was bad, and fo r me, not okay, and no I am also early 53 years old and not wearing a diaper to catch my gas, or stool 70 times a day. I would have a rash, and I would stink, and it would be needed,. I can ot even get on a bus now, but then I drove in with a towel on my leather drivers seat to race home if nature was not good. But it did make me happier, but in all cases and I tried, ther is no such thing as sex, desire or organsm, and that is a natural way to feel good, and foo me, that can remove pain halo, and likey is as good at realeasing good chemicials into our body.
I want to help your poor child.... I do not think for a mnute you are okay with this, and I can;t beleive no one you know has not offered to hlp you. Beside child protective as it seems you need a family member to hep you and you need to work on seeking help. Very sad stroy. I am Sorry.