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2young4paininOH 06-07-2013 08:12 AM

Nerve root clumprd mri help???
Hello. Anyone who can help I would be so thankful. My MRI say nerve roots of the cauda equine are clumped together ... how serious is this? I had my MRI Amended because it was not finished the sentence were incomplete. Now I am wonder what this means for me. It also says. No definitive arachnoiditis. This has been going on since 2011 and I just had it amended. I have been in serve pain and no one knows what is wrong with me. They cannot figure out what is causing all the pain. They say that the stenosis and the DDD, fibromyalgia and OA should not be causing this much pain that I am describing. Even though they believe fibro can cause some of the pain. They believe that there is an underlying problem. So I am wondering what this new information mean. No doctors have seen this yet because I did this on my own. I had it amended on my own because my internal medical doctor suggested doing so. IF anyone can please help me I would me so thankful. I am going crazy here. The pain is weighing on my and making me so depressed.

teteri66 06-07-2013 11:43 AM

Re: Nerve root clumprd mri help???
Welcome to the board.

Could you explain what you mean by having your MRI amended? Was it to include the nerve root clumping? I am confused.

What type of doctor is currently treating you? Have you had some procedures on your lumbar spine?

You will need to have some further consultation on this nerve root clumping, because it also says "no definitive anachroiditis." It is very likely that this is causing your pain...that's why I was wondering who is looking at your MRI and advising you...because nerve clumping often is a sign of arachnoiditis.

I'm going to be basic with terminology because I have no idea how knowledgeable you are about the spine. The spinal cord stops around the Lumbar 1 level. Beyond this point, the nerves gather together into a long bundle that resembles a horse's tail and thus, its name, "cauda equina." These nerves are encased in a sac that is made up of several layers, one of which is the dura and one is called the arachnoid. Above L1, this would be commonly referred to as the spinal cord within the spinal canal. From around L1 on down to the sacrum, instead of it being called the spinal cord, it is called the cauda equina.

Arachnoiditis is an inflammation of the arachnoid space. It is one of these things that has a great deal of controversy surrounding it; doctors do not like to talk about it, or in some cases, even acknowledge that it is something that occurs or that it is a problem. Some doctors will not write it on a patient's chart because it may influence the patient's future medical care. It can prevent patients from getting some types of care. Some doctors will not work on people who have arachnoiditis. It is really too complicated for me to get into here. There is so very good information online that you an read.

Before you get too excited over this, or too terrified, wait until you have spoken to a doctor who is knowledgeable about arachnoiditis. Some doctors will tell you it is very rare and not to be concerned...but if you have pain that is not explained by any of your other issues, and you have symptoms typical of arachnoiditis, I would certainly pursue it...even though it may involve going to a variety of specialists before you find one who knows about it, is willing to acknowledge it and can help you.

Not all nerve clumping is arachnoiditis. But all arachnoiditis shows nerve clumping on MRI

We have a very dear member, GMAK, who has arachnoiditis. She will see your post soon and will be able to tell you more.

teteri66 06-07-2013 12:51 PM

Re: Nerve root clumprd mri help???
There are different stages of arachnoiditis, with the worse being called adhesive arachnoiditis.

In general, if arachnoiditis begins to interfere with the function of one or more of these nerves that are clumped together, it can cause a number of symptoms, including "numbness, tingling, and a characteristic stinging and burning pain in the lower back or legs. Some people with arachnoiditis will have debilitating muscle cramps, twitches, or spasms. It may also affect bladder, bowel, and sexual function. In severe cases, arachnoiditis may cause paralysis of the lower limbs." (from NIH info on arachnoiditis)

When I was running around from one specialist to another, trying to find someone who could figure out why I was still in pain even though my MRI showed no nerve compression, one surgeon, just in passing, mentioned I had arachnoiditis. When I asked "my" surgeon about it, he indicated that was ridiculous and that I did not have nerve clumping. So...who to believe? In any case, after he performed my third lumbar surgery, 99% of my symptoms went away, so if I do have arachnoiditis, it must be a very mild case. I choose to believe I do not have it.

2young4paininOH 06-07-2013 01:38 PM

Re: Nerve root clumprd mri help???
Hello Teteri66 Thank you for your answer it means a lot.
I went to see another doctor and he was reading my MRI and the sentences were incomplete, in the old MRI it said, “although the nerve of the cauda quinine . The colon together on sagittal T2 weighted imaged. No definitive arachnoiditis. There appears to be some congenial spinal stenosis canal stenosis cauda to the L3 level and most pronounced at L4/.L5. This is likely on the basis of short pedicles. Spinal alignment maintained. Vertebral body height and disc space are preserved.” This is just the finding however you can see how the sentence where not finish so. I just had to go back to the hospital where it was done. There are actually rereading the whole MRI again. But for now they said that it was supposed to say that the nerve roots of the cauda equine are clumped together. Not the colon
I never had any surgery on my back however I have had (3) epidurals from giving birth, and I have had lumbar epidural for steroid injection, facet injection, from my PM
Currently it is just my PCP and my PM Doctors I am going to go see a neurology doctor in July. They are sending me to him because of the nervous system. I have not seen my spine doctor since March because they only thought I have stenosis, DDD and OA no one knew of this clumping of the nerve or if they did they did not say anything. I am in so much pain and NO body is listening. I cry in my sleep, my husband has woke me up to make sure I am Ok. I have trouble someday walking. The pain in the bottom of the back and in my SIJ is so horrible it takes my breath away it feel like someone is pulling at me and I have burning and electric feeling shooting through me. My legs go numb and tingle and feel heavy; my feet feel like they are burning and other times they are tingling. my hands and fingers will go numb as well. I can’t sit for long or stand long. Sometimes I feel like I am sitting in water or there is water on my ankles or calf’s. They doctor around here are not listen I have been to 4 different doctors since March and no one is listen. I have a list of problems and no one is connecting the dots. Now that I have this new/old MRI I don’t know what to do with it. They did tell me I will need surgery for my stenosis but that I am to young and I need to wait it out until the PM can no longer do anything for me. Thanks again for taking the time out, Oh no do not know much about the back.. I was not sure how serious this was. They act as if my problems now are not serious and I should not be complaining about anything.
This is what the rest of it say.
L1/l2 sagittal images demonstrates minimal disc bulging without central canal or foraminal stenosis
L2/l3 mid diffuse disc bulge. Without central canal stenosis or foraminal stenosis
L3.l4 diffused disc bulge. There is mild central canal stenosis or foraminal stenosis
L4/L5Diffuse disc osteophyte complex with ligmentum flavum hypertrophy and facet arthropathy. Finding results in server central canal stenosis. There is narrowing of lateral recess bilaterally There is moderate left and mild right foraminal stenosis.
L5/S1 No disc bulge or herniation. Bilateral facet arthropathy. No superimposed central canal stenosis. No foraminal stenosis

2young4paininOH 06-07-2013 01:54 PM

Re: Nerve root clumprd mri help???
I just recently started to have twitching it is in my leg, arms and torso, however I have serve spasms in my back and kegs. My vision is starting to affect me also, the eye doctor thought it was MS or RA maybe. I have inflammation that right now is inactive he said and some scaring on the cornea. this all just stared happen since Dec,( is when my symptoms got real bad). However I been in pain for about 2 years on and off. But since dec I have been in serve pain and out of work since Feb.

gmak 06-07-2013 02:06 PM

Re: Nerve root clumprd mri help???
Hi 2 young , I have adhesive arachnoiditis, i have had multiple lumbar surgeries, fat & fascia grafts put on holes in my dura to stop spinal fluid or CSF from leaking out & had a myelogram also. My MRI began showing " nerve root clumping" of the spinal nerves or cauda equina & on radiology reports my spinal nerves are called "nerve roots" starting in 1988 but know one told me until a spinal neurosurgeon did in september of 2012. I had a diagnosis of " multiple failed surgeries' & chronic intractable lumbar pain for 24 years & even today my pain mgmt dr , a
physiatrist calls my diagnosis "chronic pain syndrome". Adhesive arachnoiditis, according to my dr & what i have read is usually diagnosed by "clumping of the nerve roots" or "peripheral clumping of the nerve roots" on the MRI report & there has to have been an invasion into the spine or an infection at some time previous such as, spine surgery, a myelogram, a spinal tap or lumbar puncture, epidural anesthesia, a nerve block or epidural steroid injection however it is rare to get arach from an epidural injection if the steroid was injected into the epidural space but its a possibility but usually arach is more likely but doesnt absolutely happen when the needle is pushed through the dura & the steroid is injected intradurally which means the needle was pushed through the dura & the medicine is injected into the spinal fluid. According to the 3 neurosurgeons that i saw i have adhesive arachnoiditis. During a medical procedure I had & we dont know which one, where the dura was opened even just by a needle ***** blood, medicine, dye, preservatives in sterile water etc entered my dura, the spinal nerves began to become inflamed, then they swelled & the CSF was forced out, scar tissue formed & the nerve roots began to stick together, then became scarred to each other then to my dura & my spinal nerves are so stuck to the dura that by MRI i could see that they are now "one" with my dura arranged like the numbers on an old analog wristwatch. This according to the specialists takes time & the nerves can still work because of how miraculous our bodies are made & i was told that this "state" that they have found to survive in should never be interrupted or disturbed by injections or surgery. My main symptom is very severe pain & when newly diagnosed I found the most useful information from reading &
researching papers & reports written by Dr Charles Burton., Dr Sarah Smith who has arachnoiditis herself, & Dr Jorge Aldrete is an anesthesiologist/ pain mgmt dr who mainly sees arachnoiditis patients & of course the people on healthboards who have helped me more than anyone & still do! If i were you i would find a neurosurgeon who specializes in spines only & get his opinion about my MRI's & my neurological exam. My MRI says I have a tethered cord most likely due to arachnoiditis but i dont think its definitively mentioned but understand its "quite severe" but no treatment has ever been recommended except to use narcotics to cover the pain. I was very scared & upset for months when i was finally told but i am still ok, i have "treated" pain but everything still works as in i can walk, function like a "normal for me" person! So, if i were you I would get a spine NS opinion or maybe several because as i was told by my dr "nerve clumping" doesnt always mean that adhesive arachnoiditis is present. I was 26 when i first injured my back so i understand that you want to feel young & be young when you are young. God bless you. We are here for you.

gmak 06-07-2013 03:06 PM

Re: Nerve root clumprd mri help???
Dear 2 young, I have experienced almost all of the symptoms that you have described as in numb feet so cant walk, electrical bolts shooting out my feet & it felt like the "bolts' were 3 inches in diameter, blurred vision but it disappeared when i stopped taking baclofen. My dr & I dont know if this was a coincidence or a reaction to the medicine & zanaflex was suspect too but i have taken it very rarely since with no bad effect. My blurry vision is early glaucoma according to my opthalmologist but lyrica & neurontin can cause visual disturbances, cymbalta can raise the pressure in the eye according to my eye dr too. There is so much information to read about arachnoiditis, describing symptoms & even animated spine videos but hopefully you will not have adhesive arachnoiditis, i pray so. In Houston, with a huge, famous medical center there is no arachnoiditis specialist. A neurologist is trained in diseases of the central nervous system & sympathetic nervous system & can do an EMG & nerve conduction studies as well as test for RA & MS but if i were you i would take my MRI films on disc to my spine dr for his opinion & if my MRI is older than 6 months to a year old i would ask for a new one & ask if the ordering physician could put "rule out arachnoiditis, phantom " water trickle sensation down calves"" on the order form as the diagnosis & get the radiologist & my spine drs opinion on the new MRI. 3 spine NS did finally tell me a definitive yes or no even though i had never heard of arach at the time & it was a process.

teteri66 06-07-2013 04:32 PM

Re: Nerve root clumprd mri help???
[B]L4/L5Diffuse disc osteophyte complex with ligmentum flavum hypertrophy and facet arthropathy. Finding results in server central canal stenosis. There is narrowing of lateral recess bilaterally There is moderate left and mild right foraminal stenosis.[/B]

The worst segment is at L4-L5...where there is severe central canal stenosis. I imagine that is also where the nerve clumping is...just a guess. Stenosis means narrowing. There are two areas where stenosis the central canal and in the foramen...which are little opening at the edge of each vertebra on either side, where the spinal nerve exits the spine out to the limbs. When these areas become blocked, there is not enough room for the "gunk" and the nerves so the result is that the nerves end up getting squished. Since each spinal nerve innervates a particular part of the body, a nerve compression of the L5 nerve could cause you pain that runs down the back of your leg and possibly into the three middle toes.

You will see that your stenosis in the central canal at L4-L5 is described as severe. There is also moderate stenosis on the left foramina and mild stenosis in the right foramina at this level. This is caused by the disc osteophyte issue, coupled with enlargement of the facet joints, which is indicative of spinal arthritis...bone spurs form and cause enlargement of the facets...which are the synovial joints at each segment that allow us to bend, flex and twist.

There is this joint enlargement going on at L5-S1 too but at this point, it is not causing stenosis.

There are small disc bulges at L3-L4 and a little bit of stenosis in the central canale and in the foramen, There is a small disc bulge at L2-L3...but at this level there is no stenosis. L1-L2 there is an even smaller disc bulge, no stenosis.

Just for your own information, it is perfectly normal to have some small disc bulges -- as the spine ages, this is a common result of normal wear and tear...and the spine begins its aging process in our 20s. The discs are made of something like 90+% moisture...and as we age, the discs tend to lose moisture and dry out. This causes them to lose disc height, which lessens the ability for them to serve as a cushion. Often people have bulging discs that cause no symptoms, so they are not aware that they have been living with the problem. It is discovered when an MRI is done for another purpose....So you don't really need to be too concerned about these findings. I imagine at least some of your symptoms are coming from the problems at L4-L5.

I would suggest you make an appointment with a fellowship-trained orthopedic spine surgeon for an opinion, in addition to seeing a neurosurgeon.

2young4paininOH 06-08-2013 03:24 AM

Re: Nerve root clumprd mri help???
I just want to say thank you so much to the both of you. I use to trust the medical field so much and as of today I do not have much faith in them. My PCP and I had such a great relationship and now I feel like he does not want to even see me anymore. He told me that he does not know what to do for me anymore, suggested I go see a neuropathic doctor. I called the officer 2 days in a row about leakage in my vagina and pain in my eye and nose, before I heard back and the nurse says to me ď we can send you to Dr. so and so but we cannot give you any pain medĒ like I am a seeker. First of all I have a pain management doctor I see. I tell her that every time I call that I donít want pain meds. I tell her he is my PCP and is supposed to be helping me cope with this.. She really hurt my feeling. I am not a seeker, as a matter of fact when I was drug tested the other day my methadone did not come up in my test, They asked why I had to explain that I was running late to get there and forget to take my pill. Because I take it as it is prescribed every 8 hours. Well it was going on 12 because I over sleep and ran out the door to get to the doctor appointment. And the day before I was a Cleveland clinic all day and was not able to take any medicine at all because they were doing test so it was over 24 hours with nothing in my system basically except one pill. So they said that would explain why it did not show up on the urine test they did.So she just really hurt me. I know there are abusers out there but I am not one. I hate meds. I have been with my PCP for 15 years way longer then she has been there. I am also just upset that I just found out about this and then I remember what that one neurosurgeon told me about 11/2 ago that I would be in a wheel chair later in life to enjoy what I can NOW. I would have to have a wheel chair to get around when I went to the store for long periods of time. And then eventually it would be all the time. So I guess when I seen this it scared me, and I did not understand it and I still donít. I donít trust doctors anymore. They say I will need surgery but I donít think I will ever let them cut me. But now that I have the clumping will they do it????? Weather it is arachnoiditis or not?? How bad will I be????? How can someone miss this for 2 years????? I am so scared!!!!! I am raising my granddaughter who is 2 and she is a blessing and I thank god for her every day. Well, thank you for answering me and helping me out here. You are such a sweet bunch of peopleÖ

powergrub 06-08-2013 05:56 AM

Re: Nerve root clumprd mri help???
Just a thought. Have you had a MRI of your neck (cervical MRI)?

I have adhesive arachnoiditis and have had over 30 years of spinal procedures and surgeries. Started when I was 12 years old - I am now 49. From age 20 on all my MRIs were of the lumbar spine.

I am currently waiting to be scheduled for a neck surgery due to severe central canal stenosis, spinal cord bruising in the neck and cervical myelopathy that is causing walking difficulty, electrical shock like sensations in my legs and feet, arm and leg spasticity and visual disturbances to name a few. (Google Cervical Myelopathy to get a list of the symptoms)

My thought for you is this - It was not until 2012 - last year that a neurologist had me undergo a cervical MRI.

That is when I found out that the spinal cord in my neck is bruised because it is so severely impinged from central canal stenosis, a reversal of the normal neck curvature and bone spurs at C1-C2 possibly causing the double vision and visual disturbances that began happening in 2012 amongst other things.

I was also diagnosed with MS by one neurologist based on my symptoms and one brain lesion that was not a typical MS lesion. Then, a neurosurgeon said it looks like I have cervical myelopathy not MS.

So my point is maybe you are having trouble in your neck? Just a thought like I said.

May as well cover all bases especially if you are having the vision issues, the arm and hands issues and the problems walking and standing....might as well rule out a cervical problem.

My prayers are with you. Keep us all posted.

gmak 06-08-2013 07:22 AM

Re: Nerve root clumprd mri help???
[QUOTE=2young4paininOH;5184978] They did tell me I will need surgery for my stenosis but that I am to young and I need to wait it out until the PM can no longer do anything for me. Thanks again for taking the time out, Oh no do not know much about the back.. I was not sure how serious this was. They act as if my problems now are not serious and I should not be complaining about anything.

Hi 2young, I reread this post this morning & this statement that you made reminded me of something the spinal surgeon said to me. He said when i was begging for surgery because i didnt know what arach was @ this time & my MRI showed alot wrong, he said that it was best not to disturb the spinal nerves as the other NS had said also, it could increase the pain & that when pain mgmt could no longer control the pain &/or the nerve compression symptoms became so bad, like cauda equina syndrome, then they would operate because bowel, bladder problems & severe intractable pain unable to be relieved with pain mgmt were so very bad that this would warrant surgery. The drs were telling me that any back surgery would have to wait & if PM could not control the pain, the symptoms would overwhelm me & then they would take a chance,regardless of risk & give me surgery to try to stop the possible permanent nerve damage but not until conservative treatment has been exhausted. PM, buying them time because this surgery is a last ditch effort. How the spine dr described it is "we put off surgery until we HAVE to do it" In all of my experience with having arach & studying it i have found that it probably is not that they missed the arach but it is not talked about, my PM dr told me its fear of liability or just a lack of education about arach that makes it such a quiet topic. I hope that you dont have it, pray that you dont have it also but I do & right now im still okay, pain mgmt works just like if i had a failed fusion maybe even better than that. From what i have read & learned it is very unlikely that someone would get arach from a single epidural steroid injection or epidural anesthesia but it is possible, did you wake up in unexplainable excruciating pain or have a particularly traumatic epidural in childbirth? I found letters in my medical record sent back & forth between NS & old PM stating that i had adhesive arachnoiditis but no one told me. Do you have copies of all your medical records & any & all MRI's or other imaging? Because i just trusted my old NS when he said my MRI's were ok & all that time i had "clumped nerve roots" & now i get copies.
I was so scared, too & felt betrayed & then i realized it had been there 24 years & i was basically the same,really severe pain all the time which is bad but compared to what i could have had i was blessed. Month after month i worried but i am the same & have had no increase in symptoms, so i finally relaxed & realized it is managable for me today & that is all i am promised anyway, i am not promised tomorrow the way i believe no one, even normal people are not promised tomorrow & i settled down emotionally.
Its been 8 months since i was told & i havent gone down physically at all. I started this " back" journey
when i was 26 & i am 56, 24 of those years i have had arach & im ok, i can walk, except for pain i am normal, even with arachnoiditis for 24 years!

2young4paininOH 06-08-2013 07:33 PM

Re: Nerve root clumprd mri help???
Hello powergrub
Thank you for your reply, Yes I have had an MRI done of my Neck I ill get back to you later with it. I have stenosis in my neck to but I don't remember where. I know I have bone spur on my neck also. My PM told me that. I will get back to you though either Sunday or Monday night. I have an EMG on Monday in the morning. Thank again for the information and your time.

2young4paininOH 06-14-2013 08:32 AM

Re: Nerve root clumprd mri help???
Hello everyone sorry it has been a couple of days since I have been on. I had an EMG on my hands to see if I had carpal tunnel and ever since that test was done I have been in extreme pain. I donít know if it was a coincidence or not but it was not even in my arms or hand it was my legs and feet. I was in terrible pain and so tried I had no energy. Had this happen to anyone before from this test? I donít know maybe it was just anxiety but it lasted for 4 days, all I did was sleep and experience extreme pain in my legs and feet. My back hurt to but nothing like my legs and feet. I felt like my nerves and muscle were ****** off at me and taken revenge on me. LOL.
Well here is my MRI I of my neck. and whoever can give some input on this please do. Because to me it does not make since. I have had nothing but trouble with this hospital and there test results and them making mistake on my test results. I am not the only person either. They have been known to switch people tests a couple of time. So I am a little worried here. I donít understand if I had stenosis in the 1st MRI shouldnít I still have in the 2nd one. Or am I reading something wrong, I am so confused. Maybe that is why the doctor are toooo. Any help would be great.
Was taken 7-6-2011
There is straighten of the cervical spine, the craniocervical junction is unremarkable. The spinal cord is normal in signal.
At C3-4 disc osteophyte complex results in mild central and foraminal stenosis.
At C4-5 disc osteophyte complex results in mild foraminal stenosis; left greater than right and mild central stenosis.
At C5-6 disc osteophyte complex greater to the right results in moderate to serve right and moderate left foraminal stenosis with moderate central stenosis.
At C6-7 and remaining levels there is no significant stenosis.
Impression Significant right-sided degenerative changes at C5-6
This one was taken on 2-14-2013
There is straightening of the upper cervical lordosis. Alignment is otherwise with in normal limits. The individual vertebral bodies are intact. There is disc desiccation and disc space narrowing, primarily at C4-C5 and T5-C6, and there is scattered spondylosis and uncoverterbral hypertrophy, generally mild.
There is no abnormal signal within the cervical spinal cord, The visualized portion of the cord and base of the brain are unremarkable in appearance. Specific finding by level;
C3-C4; There is mild uncoverterbral hypertrophy and mild spondylosis. There boardline stenosis. There is no significant neural foraminal narrowing.
C4-C5 There is mild uncoverterbral hypertrophy and mild spondylosis. There is boardline stenosis. There is no significant neural foraminal narrowing
C5-C6 There is mild to moderate uncoverterbral hypertrophy and mild spondylosis. There is boardline stenosis. There is mild to moderate to right neural foraminal narrowing.
C6-C7; There minimal spondylosis. There is no stenosis or neural foraminal narrowing.
1. Boardline stenosis at C4-C5 and C5- C6 secondary to uncoverterbral and disc pathology superimposed on narrow canal.
2. Milder degenerative change at remaining levels. There is at most mild neural foraminal narrowing at a few levels.
3. There is no significant change since the previous examination.

2young4paininOH 06-15-2013 06:29 AM

Re: Nerve root clumprd mri help???
I was so scared, too & felt betrayed & then i realized it had been there 24 years & i was basically the same,really severe pain all the time which is bad but compared to what i could have had i was blessed. Month after month i worried but i am the same & have had no increase in symptoms, so i finally relaxed & realized it is managable for me today & that is all i am promised anyway, i am not promised tomorrow the way i believe no one, even normal people are not promised tomorrow & i settled down emotionally.
Its been 8 months since i was told & i havent gone down physically at all. I started this " back" journey
when i was 26 & i am 56, 24 of those years i have had arach & im ok, i can walk, except for pain i am normal, even with arachnoiditis for 24 years![/QUOTE]

Hello gmak I also was rereading your post. I too thought the same thing that if this is what it is I have been dealing with this for 13 years. Then I can learn to keep going because I have been OK so far. However It is the not knowing and the pain is increasing so bad. That is what's getting to me. The numbness in the legs and tingling along with the feet burning and going numb too, then there is the the sex dysfunction it is getting worst and so is my bathroom problem, along with the constant pain in the back. So That is why I have become so upset I just want a honest answer and for them to stop blaming it on the stenosis, and OA. It is as if they don't believe me. I don't want surgery, that will be my last resort. I just want them to take me serious. I cant sit for more then 30 min nor can I stand for more then hour before I have to be in a recline position. Now my hips hurt so bad they gave me an injection and it did nothing.... Just scared I will wake up an not be able to walk. Since I wake up in the middle of the night now and my lower back, hips and SIJ are locked up and I cannot move until my husband helps me. Well thank you for your support it is nice to get thing off of my chest and to vent.

gmak 06-15-2013 08:57 AM

Re: Nerve root clumprd mri help???
Dear 2young, I know it is scary watching symptoms get worse or getting more symptoms & not knowing what the future holds & no drs will discuss it other than saying that its there. I did have one spine NS confirm it & he recommended a morphine pump, another spine PMNS confirmed it & his recommendation was a spinal cord stimulator, another spine NS said absolutely no surgeries or epidural injs not even for a pump or scs. That leaves me with pain mgmt only & i am prescribed pain medicine that releases so slowly that i never feel anything but pain relief. And lyrica controls the nerve symptoms & i know neither of these stop the progression, thank God all my symptoms except the pain come & go. My pain dr is a physiatrist, a physical medicine & rehab dr & he does know about arach & he agrees with NS & keeps my treatment with no surgeries, no epidural injs & helps me function as normally as possible. It took many years but once i was on a stable narcotic & non narcotic medication schedule my symptoms became managable. I hope that your drs can accomplish the same thing for you, if not if i were you I would seek out the best spine specialists in your area because that is how i finally found someone to say that the "clumped nerve roots" was or was not arachnoiditis.
Also, I have the vit D level that wont stay up also, first level was 0 then after a month of 50,000iu/week its 16, did the dr give you an explanation? Mine didnt he is still monitoring it, have test next week & im sorry that your pain is so bad. Im having bad pain now & should be shopping for fathers day, i totally "get it"!

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