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  #1  
Old 09-27-2008, 02:13 AM
Terra Terra is offline
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Join Date: Dec 2007
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Question Newish member, reintroduction, spondylolisthesis questions

Hello

I signed up back in December. I was--- and still am in lots of pain and was excited about ADR. I've yet to have surgery of any kind. Beleive it or not- and I'm sure you can- I'm still trying to get answers as to what specifially is causing hte pain. There are so may factors, that to simply 'react' although the pain is pretty extreme a good deal of the time, maybe a huge mistake in the long haul. So I continue to press forward the best I can.

Its been so hard. I have a chronic head pain problem and I'm sure the cervical spine issues are contributing. Over the winter I landed in the ER three times due to horrible head pain which is also mysterious in nature. There are these times when the pain ramps up so badly I literally can't stop throwing up. This is a new thing. In otherwords the pattern of pain changed which can be a red flag they say. Now this lead to a new workup. Its really a very long complex history. when its not so late and I'm not so tired I'll fill you in. But for now, I'm revisiting the notion of some kind of surgery. I'm waiting to hear from my NS on Oct 8th. He's been reviweing all my imaging and we're to talk by phone--he's 400 miles away.

I do know I have three cervical levels with spondylolisthesis, C3-C6. I have reason to beleive they are not stable but we'll see.

Questions to members:
-anyone with cervical (not lumbar, more common) spondylolisthesis?
-is yours stable?
-if unstable, to what degree or what are they saying?
-your symptoms?
-treatment?
-outcome if treated?
-ADR an option?

Boy, is it difficult to meet others witht his issue at the cervical level.

Last edited by Terra; 09-27-2008 at 02:56 AM. Reason: PS I'm also wondering what vacuum disc means?
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  #2  
Old 09-30-2008, 11:44 AM
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Harrison Harrison is offline
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Default Sorry for the delay

Terra, sorry about the unusual pains. Can you talk a little more about the head pain? Does it ever appear in the jaw, throat or places that would not be typical for a headache?

As you know, there are a zillion things that can cause pain. Cervical patients in this community usually experience the "typical" pains that are recognized by the spine doctors, but we often try to cheat and use the dermatome chart. It seems like you may be saying that your pains are atypical? Tell us a bit more, thx.

PS: please insert a short signature when you can; see mine below as a reference.
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #3  
Old 10-06-2008, 01:23 AM
Terra Terra is offline
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Red face Thank you for the advice Harrison

The thing is I had (4) craniotomies within 7 months from 2004 to 2005. The first surgery was for an inner ear condition. Complications arose and I developed a cranial bone infection or a cranial osteomyelitis. This eventaully lead to an cranial epidural abscess.

So not only am I left with "chronic post craniotomy headache" now my cervical spine is acting up. I likely have "Chronic post craniotomy headache" w/migraine features and pain coming from the spondylolisthesis too, arthritis, and disc issues. Its become so complex doctors nearly give up before they get started.

Case in point, just Friday I visited a headache specialist for the first time. He was this little nerdy guy that had a big tantrum when he realized his typical work-up method in my case was counterproductive. At least when I left he said my case would help keep his mind active and stimulated!

I'm not sure how much the cervical problems contribute to the head problems but I know it does at some level. It hurts to touch the spinous processes and I have trouble flex/ext, get pain in arms, shoulders, neck, and pinky, index, and middle fingers.

I returned to my NS like I said and will get more info from him later this week. The new headache neuroligist is proposing a new regimen of medications. We're worried about his methods and understanding of my type of headaches though. My husband says he's going to get really upset if I land in the ER again while followiing his rx's to treat plain migraines which of course is in his comfort zone. Fortunately my PCP is going to intervene with this neurologist before I go off MS Contin, which will take some effort to do. I'll likely experience serious withdrawals etc.

So this is some of the basics. Thanks for listening. I'll post a signature when after I talk w/NS.
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Old 10-06-2008, 07:09 AM
berry berry is offline
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Default

Hello Terra

Thanks for posting your interesting story, sorry it lead to the epidural abscess though. I am unable to comment on your spondylolisthesis re disc replacement, maybe fusion is the best option.... you certainly are complex.

I can relate a little to how you feel, I had a craniotomy for resection of a frontal lobe tumour in 2006 and still get post craniotomy headaches. Mine fortunately are only present on waking and go shortly after getting up. "Can't make an omlette without cracking eggs" is what my neurosurgeon said at my post op consult and really when I think of the possible consequences I consider myself very fortunate.

My symptoms prior to the cervical disc replacements included amongst other things, unsteadiness, vertigo and nausea as well pain and it was unsure what was due to what. Like you I did the rounds of ENT surgeons, audiological physicians, neuro and orthopaedic surgeons. To cut along story short my eventual cervical disc replacement op has made an amazing difference to my life and although I still have the morning headaches I have not had any further vertigo or lightening electric shock type shooting pains.

I hope your neurosurgeon can offer you a potential solution to help you and wish you all the very best.

Very kind regards

Lynda
__________________
Cervical Activ C, C5/6 & C6/7, Feb 2008
Craniotomy and excision frontal lobe brain tumour, May 2006
Lumbar ProDiscs, L4/5 & L5/S1, Feb 2004


Last edited by berry; 10-06-2008 at 07:11 AM.
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  #5  
Old 10-06-2008, 11:14 AM
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Harrison Harrison is offline
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Hi Terra, I sent you a PM (private message). I hope your appointment went well.

BTW: I was looking into this condition for another reason, this article talks about possible root causes (for long bones):

Osteomyelitis is defined as infection in bone. The root words osteon (bone) and myelo (marrow) are combined with itis (inflammation) to define the clinical state in which bone is infected with microorganisms. Osteomyelitis in long bones includes infections that differ from one another with regard to duration, etiology, pathogenesis, extent of bone involvement, and type of patient (which can be an infant, child, adult, or compromised or uncompromised host). In the past thirty years, the pathogenesis of this disease has almost been clarified, and many factors that account for the persistence of infection have been identified. A number of antimicrobial agents, with different spectrums of activity against pathogens and different pharmacokinetics and pharmacodynamics, have been used to treat osteomyelitis. New operative methods, including the use of muscle flaps, the Ilizarov technique, and antibiotic-loaded beads, have been applied to the field of bone infection. Despite many advances, osteomyelitis remains difficult to treat, and the cure rates are still unsatisfactory.

Full article is here: http://www.ejbjs.org/cgi/content/full/86/10/2305
__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #6  
Old 10-06-2008, 03:13 PM
Terra Terra is offline
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Default Harrison and Berry

Thank you Berry and Harrison for getting back to me. Berry-- its encouraging the Artificial disc replacement helped you to the degree it did. Its very hard to sort out whether my balance difficulties etc are related to the hypofunctioning of my vestibular (ear) aparatus as I now have a complete loss of vestibular function on the right side! so even without a cervical spine issue I'm always going to have a vunerablility even though my brain has had time now to adjust. In other words, the left side inner ear canals are now doing all the work and making up as best they can for the right side not working at all. Amazing this can happen, but for a period of time my world was upside down from my perspective-- I could hardly walk! Most people, including doctors, do not have a clue how much the vestibular (ear) aparatus does for them. Our vestibular system in the ear orients us in space and works 7 times faster then our vision. We get our balance from input from our vision, ear and sensory signals coming up our spine. Cervicogenic (neck) dizziness comes from damage to nerves coming up the spine. When there is damage to the nerves there is a change in callibration for the balance system to draw information and we might specifically get a floaty, tipsy feeling and have brief zingers of intense dizziness when turning the head.

So Berry I'm guessing for you, your vision and ear are likely doing OK it was mainly your spinal nerves needing better callibration. Its interesting though that you'd get the nausea too. I'd like to know and I'll be asking my NS how much of my headaches are due to cervical spine problems and how much post craniotomy headaches.

As far as the post craniotomy headaches. I've doena little research. There are several reasons for the headaches and often there are more then one thing going on. This is what the Interntional Headache Society says:

"The pathogenesis of chronic headache after craniotomy is unclear but may involve meningeal inflammation, nerve entrapment, adhesion of muscle to dura or other mechanisms. Modifications in the operative procedure, including the use of osteoplastic cranioplasty, may lead to a reduction in the incidence of post-craniotomy headache by preventing adhesion of muscle and fascia to the underlying dura."

I recently listened to a lecture about post crani headaches. Many of our headaches can mimic regular types of headaches. The idea is we can have "features" of a migraine or cluster headache or whatever. And of course some people already had a certain type of headache problem before they had surgery, ie they were alwasy a migrainer anyway. There were patients in the audience that suffer from these headaches like us. I too am like you and often wake up with a stabbing sensation or some other altered feeling and once I get up I might or might not be OK. Unfortunately things turned recently and the pain ramps up dramatically. I'd always had a migraine feature since these post crani headaches began but now its different. Its like there is a smoldering fire in the forest at all times waiting to take hold and destoy. For you when you wake up, its like your body is telling you you have a spark or ember or a match striking and once you get up the fire is put out. For me there are hot coals, embers, flickers of flames even lapping up small trees etc. Movement and getting jarred around especailly when I travel by air is like throwing gas on the smoldering fire. So right now the idea behind me taking long acting meds is to keep the smoldering fire from even smoldering and preventing the forest fire. I've just recently finished paying off a $10,000 out-of-pocket bill for the ER visits from this past winter. This was the so-called forest fires that got going and once it got to a certain level I could not stop it myself with the arsenal of meds I had at home. Sure I had antinauseates but that didn't stop it just ike what can happen in a real forest fire situation. My PCP even visited me in the ER and saw me "on fire" himself with a headache and vomitting that would not stop. I was like Linda Blair of Exocist fame! This experience has caused me to do more research myself and lead me to revisit my NS because he knows the most about my altered anatomy and could access my neck as well. I'd been giong around to various otther local doctors fro potencial answers and treatemnts but wasn't getting anywhere. At any rate, many CPCH people in the audience have this head pain going on all the time. This is called "Chronic daily migraine" even though its just sensations we're feeling and for me this is a feature of my chronic post crani headache. I was surprised that there is a type of headache called 'stabs and jabs" which might be what you've got as a feature of your post crni headaches. Food for thought. I've been bothering my doctors to help me figure out if I have adhesions sticking to my dura causing the daily pain. This might be more likely due to abscess and bone infection. Really from what I've found there is very little research regarding chronich post crani headaches. I'm sure this is why its so hard to sort things out. Add the neck thing and you become a pain in the neck to your doctors!

Thanks for adding the osteomyelitis info here. Its hard to find info about cranial osteomyelitis, its more common in other areas like the spine. the bacteria that caused my infection was rare as well making it even more of a challenge. I was on IV antibiotics for at least 9 months. Really all the deficits I'm suffering are related to a cascade of complications making it difficult to overcome one thing without opening another can of worms. I start to get excited that maybe I'm going to be able to move forward, but then whatever I do would have huge risk factors attached. I want to be an active vibrant person, I don't want to lay dormant somewhere.

I'll stop now. Thanks for listening and hoping with me!
Terra
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  #7  
Old 10-06-2008, 04:57 PM
berry berry is offline
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Oh Terra

Life seems cruel sometimes. You've certainly been through it but have the strength and determination to seek futher interventions. Good luck with your talk to your surgeon on Wednesday, I truly hope he can give you some answers and help improve things for you and that you get to be that active and vibrant person you talk about.

Thank you for the interesting information and great analogy...I was told that perhaps my morning headaches (which do incidentaly 'stab and jab' in the bone above my eye and across my forehead) were possibly due to a slight raise in intercranial pressure and as I moblised the pressure dropped and so the pains ceased. A simple explanation which I accepted although I found it strange that even though I had cerebral oedema prior to the resection of tumour I had no headaches at all pre-operatively.

What you have been through sounds horrendous Terra and I am thinking of you and hoping for a brighter future. Please let us know when you can.

Best wishes

Lynda
__________________
Cervical Activ C, C5/6 & C6/7, Feb 2008
Craniotomy and excision frontal lobe brain tumour, May 2006
Lumbar ProDiscs, L4/5 & L5/S1, Feb 2004

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Old 10-10-2008, 03:24 AM
Terra Terra is offline
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Default neurosurgeon phone conf.

The discussion went well with my Neurosurgeon. First time really a surgeon or any physician sat down and reviewed my images with me although he was 400 miles away! Still this time between appointments benefited me in that I was prepared with informed questions and fortunately this surgeon is a good listener.

We started with my head. I have chronic headaches since the craniotomy procedures. I knew I did not have anything acute to worry about but I asked why I still get enhancement where I'd had all the surgeries on my cranium. He said this was likely scarring. Then I asked if th scarring is now stuck to my dura causing pain. At first he said he did not think so but then he thought this thru and ask me a few questions and decided it could be possible the temporalis muscle maybe stuck between my scar tissue and the dura to my brain causing the pain problems.

I do have several levels with spondylolisthesis. Its between C4-C5 that is almost certainly moving after I asked if any of the levels are not stable. In my experience w/spondylolisthesis neither the radiologist or surgeons or anyone offer this information up unless YOU ask. I asked what the measurement is as its not like with lumbar where they worry about it being 25% or 50% misaligned from the adjacent vertebra. The C4 to 5 measures 4mm, which is pretty significant for a cervical spondylolisthesis due to the spinal canal. A lumbar region spondylolisthesis is not as delicate as the neck because the spinal canal end near L-1 but the cervical vertebra has the spinal cord to contend with if there is movement its likely going to affect the spinal cord. With this spondylolisthesis not being stable I'm not certain I'd be able to get a ADR.

So this surgeon whom has now operated on me 4 times is proposing we start with my head and deal with the mucsle dura (surrounds the brain) thing and place a titanium plate where the skull bone once was. I have a defect on the side of my head with no bone. He'd have the ENT surgeon place a BAHA implant in the mastoid bone while he places the implant. This implant is the first part towards implanting a hearing device as I became deaf in the right ear with the cranial surgeries. Before I have these operations they'd test my cervical spine, see if I have nerve root issues etc. If I need or decide to have a type of cervical surgery (I did not talk about ADR) I coome back at a different time.

Anyway the surgeon had his assistant call me back. He then proceeded to tell me their facility currently does not have a contract with my insurance company-- they are in negotiations! They'd been in negotiations last spring and then dropped it and have just recently reconveaned. (sp?) Now we can't set up the appointments until there's a contract.

Boy I don't often tear up but this choked me up. I'd been working so hard to get answers and get out of this horrible nightmare of a hole I've been in. The day I'd flown to see my surgeon in June was the day he himself became disabled and could not return to work for 3 months. So I've waited on him to dictate a note to authorize the MRI and other imaging. Not to mention spending 4 years dealing with local medical professionals whom are clueless regarding my needs as my history is now so esoteric. Hopefully they'll sign the contract soon. Meanwhile I'll see what my primary care physician says about all this. He may even send me to other surgeons to see what they have to say. From reading everyone's journeys I can see we are all in our prime and are interested in getting our lives back. After all these surgeries in my past, I'm starting to wonder how all this will affect me long term. Right now I'm taking MS contin 3 times per day, which is a long acting morphine. You have to figure long term these meds or the surgery may affect your longevity in either case.

Last edited by Terra; 10-10-2008 at 03:29 AM.
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Old 10-10-2008, 05:07 AM
berry berry is offline
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Hi Terra

Well that was a really good telephone consultation , thanks for filling us in... you certainly got answers. It sounds a great plan, what a shame about the insurance though, a hurdle you can do without. Makes me realise how fortunate we in the UK are to have the NHS. I sure hope progress is made with the insurers quickly and the plan can go ahead. You must be devasted to get this far to be knocked back again. All these delays....but there is light at the end of that proverbial tunnel so keep strong. I have three titaneum plates in my skull and I hope the planned procedure is very effective for you. I do think you are right about ADR and fusion is likely to be the best option with the spondy.

It seems that we never get to the end of treatment, I received results of mri's this week and there's a shoulder abnormality and tendonitis which needs surgery and more concerning, the three discs above my two lumbar ProDiscs have degererated. Surgeon wants to do facet radiofrequency but I'm not sure. Life seems unfair at times. I'm too young to be falling to pieces like this.

Lynda
__________________
Cervical Activ C, C5/6 & C6/7, Feb 2008
Craniotomy and excision frontal lobe brain tumour, May 2006
Lumbar ProDiscs, L4/5 & L5/S1, Feb 2004

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Old 10-10-2008, 01:11 PM
Terra Terra is offline
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Default thanks lynda

Thanks for your encouraging post. You appear a young vibrant individual and you are right it seems like you have to constantly pick and chose battles. Its so annoying when the battles are so esoteric and I'm fairly certain you understand what I mean.

What a shame about the DDD progressing in your adjacent vertebra--the preverbial domino affect aftr spinal surgery. But it sounds like you'll have to start with your shoulder. From what I've noticed these issues can become more acute or maybe just more noticeable from the outside looking in. I read your initial post op story and am impressed you have done so well and also you have so many children!

I'd had one doctor propose a hybride type situation where I'd get a fusion and one level ADR so he could stabalize the spondylolisthesis w/the fusion. Wish I could call it something else, but if you say "spondy" it might be misinterpreted as spondylolysis! Then if you say "slipped" people think you are referring to a "slipped disc" rather then a slipped vertebra. No matter what, you don't hear from too many people struggling with spondylolisthesis in the c-spine. I suppose that's good, but it might be nice to see how others have been managed. Likely some people have this and don't know what they are being treated for or not being treated for. While I wait on this institution and their contract with my insurance company, my primary care doctor will likely send me out to other surgeons to see what they say.
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