Hi everybody... maybe somebody can explain to me better what does this mean. I feel that every day brings me something worse and worse instead of better news...
I read on Internet about Arachnoiditis, sounds so scary! PM dr who performed discogram wrote on his report that a strong posibility of Arachnoditis, Junctional syndrome. He concerns about neuropathy pain and feels that this should be explored more thoroughly before they consider surgery in this circumstance which may be not beneficial due to a lot of complications as it is. It could provoce more complications.
Meanwhile Arachnoiditis can cause paralysis, permanent damage which spreads through all nerves in a body... Oh, dear hearts, please ease my misery a bit...
Thank you, love you all...:angel:

Okay, lets hope that this is not the case. We are going to think positive thoughts only. My main questions would be how does one further determine this disease?


Edited --

I am researching this and have found that the most reliable method of establishing the diagnosis of arachnoiditis is a positive computed tomography (CT) and magnetic resonance imaging (MRI) scan.

Moldova, haven't you had both of these?? Has anyone else brought this up.

I had them many-many times. But I so lucky, Diet, that this PM Doctor looks at your body as whole. He said that very often surgery opens up a box of warms (my examle is the perfect one) and underlying for years symptoms are go on a surface - just need a good Dr to read them.
He said that many Doctor miss this diagnoses, because it gets masked by other symptoms spineys experiense.
He even picked up and put together MRI report of my brain (it showed when they did cervical MRI) which showed inflammation of the white matter of the brain. He said that my symptoms and MRI/CT report showed typical symptom of this condition. He said that he concerns about next surgery and my health. Plus don't forget I lost control of bowel and bladder...
Gets better every day, is in it?

Moldova, I wonder if this is my brothers diagnosis? He was in the military, fell down the submarine ladder, and landed on crates of food. He was taken to the hospital and had spinal surgery as a result of his fall. When they did the surgery, they nicked the sciatica nerve. My brother is very tight lipped about everything and all I know is he apparently is inoperable and has tons of scar tissue. He has been on narcotics for over 25 years. They tried the stim but could not place it because of the amount of scar tissue. He is in a wheel chair.

So how does he plan on investigating this further?? I can't wait to see what your doctor has to say about all this.

You are in my prayers dear but I know just from when we chat on the net that you will make it thru anything. You have a very kind heart and you are a strong woman. I know me saying this does not make it all easier to digest....but you keep on fighting and hang on until you talk to your doctors.

Hugs and prayers.

Thank you soooo much, Diet. I love your heart too. I guess when you leave in so much pain you have a heart for others who go through tough things in life. I am strong, that is right and I have such a good support from my family (I am very lucky) but I feel does not ends for me. The last year brought me more health issues than the entire life.
The worse problem is: you wait and you hope and you finaly got a good knowlegable Dr who wants to try to help you and here I am again at square one. He said that I have to watch for Cauda since all this inflammation (chronic one, will not go away ever) and can cause this syndrome.
Your poor brother and how about parents?? To have 2 kids who are disabled due to spinal problems? Boy, I feel so horroble. Diet, how old is he and how old was he when this happens to him. So sorry...
The problem is that no cure of this condition and having a surgery will bring very poor and very temp results...

My brother is 46. He had his accident in his early 20's. Yes, my parents are devastated by it. My father is taking it all very hard. He has Parkinson's so I am not sure how much is the disease or the fact that this has happened to the both of his children. But you know life goes on and we have to stop and thank our lucky stars for what we have and do the best that we can with the cards we are dealt in life.

Is the surgeon saying no more surgery? He agrees with this diagnosis?

Moldova, please know that I am praying for you my dear and that I care.

My MRI w/contrast shows possible Arachnoiditis at L3/L4. (July 2006) This is the non surgery level. My surgeon said that cat scan shows bone spurs and stenosis at that level. No mention of Arachnoiditis. My research of this has shown that most doctors will not mention this in any reports. There is only a couple of doctors in the US doing research on it. It has been found in mummies in Egypt. I think back on how did this happen. Do I fully have the burning in the legs that goes alone with this. I do have the non relenting pain. I do have urinary/bowel retention. Then again it shows that mostly it is not retention that this causes. Now the insurance companies are using it as a reason not to operate a second time. I told my attorney if they are going to use this, that I want an expert to evaluate me. Not one persons might be opinion. If you do have it, it is suppose to be treated aggressively for pain, as there is no cure for it at this time. Pray we don't have it.

Moldova,

Ok, now I will tell you what happened to me. I am an old surgery patient. By old I mean over 25 years ago. My first myelogram was 40 years ago. Well the dye used then was noted not the dye they use now and since then they have found it could cause chemical arachnoiditis.

There is a vast difference between chemical arachnoiditis and surgical arachnoiditis. Chemical arachnoiditis travels! Surgical arachnoiditis tends to be limited to the surgical area. When I first saw a Neurologist about my present condition I walked into his office and heard him dictating without even viewing an mri that his diagnosis was Arachnoiditis and that any surgery was out of the question. It scared the living....sh.....out of me. I quickly became an expert in the subject.

Some think that many cases of "failed back syndrome" are in fact arachnoiditis but that is yet to be a proven fact. Arachnoiditis is viewed on an MRI as clumping of nerves. Surgery can only serve to worsen the condition so surgery is never warrented. Unless there is some specific reason to believe that some older type of dye was used there is no reason to think of arachnoiditis to be chemical in nature.

I would want a solid diagnosis complete with MRI documentation before I would accept this diagnosis. It does show on MRI and a good diagnostician should be able to read it.

Moldova my heart goes out to you. I laid awake nights after this diagnosis was laid on me and I was truly frightened. I have problems throughout my spine with nerve pain down both my arms and my legs so in some ways it did make sense but in one way it did not. My last major problem began with a bang three years ago more like a herniated disc when I mentioned this to the Neurologist he acknowledged that I might be right but that he had to see the MRI. Well his initial diagnosis was wrong and it shows you even experts can jump to the wrong conclusion.

I pray that you get some good news along the way.

Hugs,
Pooby

Moldova,

Some think that many cases of "failed back syndrome" are in fact arachnoiditis but that is yet to be a proven fact. Arachnoiditis is viewed on an MRI as clumping of nerves. Surgery can only serve to worsen the condition so surgery is never warrented. Unless there is some specific reason to believe that some older type of dye was used there is no reason to think of arachnoiditis to be chemical in nature.



So are saying that the mylegrams of today do not have this dye which causes arachnoiditis? I have a mylegram scheduled and I am scared 1/2 out of my wits about the procedure......now this. :confused:

Thank you to all of you for sharing your experiences with me - i realy need some answers for myself. I feel that more time goes on and instead to getting more answers than questions at this point, I am going backwards.
So what is this means? At 52 I am hopeless, non-operable? I have 2 more levels L-2 and L-3 which are doing severely bad (above the previous fusion) and becides pain it causing curvature of the spine already. And if no surgery can be done - what should I look forward too?
I did have myologram in February 2007. Even though they say now they use safer dyes, but who knows? Maybe in a couple of years we will find out that it is still not safe after all?
Also, who knows what "Demyelinating disease of the nerve ending in a body" and "Junctional Syndrome" ?? What is this? I can't find nothing on it in Internet where I usualy can find anything I need.
Bless you all - feel better please!!

A demyelinating disease is any condition that results in damage to the protective covering that surrounds nerves in your brain and spinal cord. When the protective covering is damaged, nerve impulses slow or even stop, causing neurological problems.

Junctional Syndrome - After a fusion, you lose mobility at the fused levels and it puts stress on adjacent discs resulting in a protrusion or hernination at other levels.

Diet, thank you for the information. That is what MRI of the brain shows, that is why they presume I have this one too. Getting better every day for me...
Good luck to you on your myologram - let me know how was it.

Moldova it is on the 19th then I see the surgeon for the decision on the exact surgery to be done on the 23rd. I am so confused. I am afraid - what if I have surgery and have more problems. :confused:

I know you understand exactly what I am going thru. I promise to try and keep a stiff upper lip.

I just got info that Preservatives in epiduralsteroid injections can cause Arachoiditis too!
Than from complications from spinal surgeries or other invasive spinal procedures.
Bacterial or virul infections can cause this condition also.

Oh, dear Diet, do I understand! I feel so much for you... I go through same thing at this point. Not knowing what to do - is the worse part of this. Especially if the Dr honestly tells you that it may be worse, may be better, may stay the same... And that the second surgeries have lower sucsess rates - very scary. But we can't win. Decision has to be ours only. But how to make this decision?

Now I am worry that they will not want to operate on me due to this Arachoidities. Even if I would be 90 I still would worry, but at 52 I have no idea how many years I will have to suffer with all the pain without help...
Maybe after your myologram, the picture will get more clear for you and your Drs and will be easier to make a desision.
(((( )))) to you.

I saw that about the epidural injections -- why don't they share this with us. I don't think I will ever have another nerve block or epidural injection again. Not after the last round I had. I am 4 weeks and still hurting around the clock. They either damaged something or stirred up something. I can't go 4 hours without needing meds.

I think at this point, it is simply a gamble in regards to surgery. But I feel I have to take the risk for my family and especially my children. They are witnessing to much in regards to pain.

I am worried to about them wanting to do surgery on you but I think you have to wait until you see the surgeon and get his spin on this. When do you see him?

Oh Moldova, I do not know what to say, I am at such a lose for words. I have heard of this syndrome and i am praying that you do not have that. I know things are getting worse for you, but whatever you do, you keep that fight in you and dont give up on this. You make sure those docs are being truthful with you and know everything that they are going to do for you. I am praying for you and fot the best outcome. Pepper, I am sorry you have to deal with this problems too, and then a possilbe upcoming surgery? I did not know that the stuff they use in the esi can cause this disorder, I am sure thats something none of us spineys want to hear. I am praying for you and your dear brother also. My goodness will any of us catch a break, I never knew back problems can cause so much despair. Luv you both, many hugs and alot of prayers sent your way.:angel:

kk - they are saying fusion of L4, possible refusion of L5, laminectomy L4 and L5, hardware removal, spacers and cages. They are talking thru the abdomen and then back. I will more exactly what is what on the 23rd. PRAY!!

Diet,
I absolutely understand your worries, I don't want to tell you what to do here, but I am with you. I would take a risk too to be honest with you. Does not matter how much we worry about outcome deep in our hearts we hope for the best and hope it will work out well this time.
Especially when it comes for the family, I also go through anything just to not to make them witness all the pain we are going through.

I was worrying about 4 levels surgery last week... Now I wish they tell me that they still will do it. But when you read on a report that "due to curcumstance of arachonoidities and demyelinating disease I concern about considering surgery at this time"... I feel this time like I realy loosing any hope here...
Just want you to know - I am here for you.

That does sound scary Moldova , I don't think I have that problem ,, atleast I don't ever recall them saying that. What can they do for this ? I hope its not as serious as you think .:(

Nothing they can do about it. It spreads all over your body where the nerve endings are. It can cause paralysis in a future. So instead to have pain lets say just in a back and legs - person has it over entire body.
The worse part - now my 4 levels surgery which I hoped will improve my condition in jeopardy since with this condition they consider me "non operable". Unless my surgeon who I hope to see soon (they will call me when he will have opening) will change his mine...

Yes it scared me and made me very angry that doctors know all about the dangers of this, but never mention it.

I have been scared to death about this archad stuff. Especially since my nerve block with epidural injections 4 weeks, I have been SUFFERING AROUND THE CLOCK with pain. I wonder if this has something to do with my pain. Ughhhhhhhhhh another thing to worry about.

Senior Veterans: Please bring your attention to the posting policy.

Does anyone know if others on this board have been told by a doctor that they have arachnoiditis?? I guess the type called adhesive arachnoiditis is the type one really has to be concerned about. Meningitis is a type of arachnoiditis, as I understand it.

Moldova, when will you find out more information or what this means to you??

xx Tsohl

Tshol,
I hope to find out soon - waiting until surgeon will be able to give me an app after he goes through tons of tests results. Can't wait.
What it means to me? I was told I need 4 levels done this time: to fix previous (18 month ago) 2 levels and add 2more which went due to domino effect and other problems. The scarest part - I was told that if I will not fix, it will not stay the way it's now, will get worse to the point I will not be able to move. Weired enough but I was looking forward to this surgery which hopefuly could help my situation
And to find out now that I am non-operable, means no hope for me?? What the future brings than for me and may poor family who already go through a great deal with me... Scary thoughts.

Moldova but we don't know for sure that is non-operable. Your surgeon has not said that. Hang on to hope sweetheart.

Thank you, Diet. Your support means a lot to me, I am kinda lost here now...
I asked PM Dr's office to fax discogram report to me. I read this in his report, the copy went to a surgeon. Dr Camissa works with him only as a PM, trusts him with all his patients before surgery testing.

So I presume that if PM who did discogram, Neurologist who Camissa sent me to also - they all wrote in their reports same thing about "Due to Arah. surgery can't be recommended under these curcumstanses".

Of course I hope that surgeon will have a different opinion, but honestly I doubt that after all this.

And another thing: I read on a engine search why they don't perform surgeries on people with this condition. Due to a very short relieve of pain, sometimes no sucess at all and after surgery, pain and condition of patient may worsen significantly.
It cut my wings...

Moldova, I did not realize that they wrote that. I am sorry. I will be praying for a miracle for you.

When I saw the second opinion doctor on Friday he said that the Arachnoiditis would only effect the area it is in at the present time. That it does not travel around. It is basically a clumping of the nerves, but that it shouldn't be messed with. This was my third opinion on the possible Arachnoiditis. He also wanted to see the Myelogram film as it only showed bone spurs and osteoplates with no mention of Arachnoiditis. He was with the opinion that Myelograms were the true test for Arachnoiditis. That MRI's with contrast were o.k. but Myelograms were better. So I have a Myelogram showing no Arachnoiditis and Contrast MRI saying it is, so what now???? Where did they say you had the Arachnoiditis at? If not in the area that needs the new fusion, can they do any thing for that area at all?? Like you said, it just keeps coming. Every test shows something new that is wrong. It's just not right and things need to start getting better for all of us.

Thank you,Diet for your support...
Chris, my PM says that all depends HOW did we get that condition. If this is surgical complications, yes, it stays in same place (for a while only though).
If this is dye or Preservatives from Epidural steroids - it can go to every nerve ending in your body. Even if it's due to surgery it can affect (and eventualy does) the whole spinal cord.

That is why they say this condition is not operable. Does not matter that it's now in my L-4, L-5 S-1, my legs and feet - they never can be sure that it is not in a above levels yet. IF this traveled to L-3 L-2 which need to be done and if this is just the beginning for the new levels, no tests will show at this early stage.
But they presume that my all spinal cord affected and the area where the legs and back connected is the worse - tests and very severe obvious symptoms. And since surgery will be major again, nerves of the cord will be involved no matter what , this is dangerous when you have this condition since it can provoke a lot of nerve damage (which I have already to begin with) and usualy surgeries not recommended if you have it since they useless. My PM said that Drs know this situation and they will not operate on patients to risk their future life (and I believe they don't want to be sued too, which is reasonable).

I am so upset with my surgeon and previous PM. They just sent me for more worthless (in my case) epidurals and nerve blocks... and this made matter worse. You have no idea how many times I would call PM Dr after each shot and complaining that pain after them is worse than before and why am I for at least a month after would be crying from pain, not be able to walk? Now I know, I wish to know earlier... I just wonder if they know what are they doing. I feel sometimes that they care to take a lot of money from insurances for the shots and nobody cares how are you doing and if you need them.

Aww Moldova..
I can understand how and why you are so upset...this is devasting news... DID the surgeon actually speak with you and tell you that you would not be able to have surgery:?? (I think I got lost in all of the messages and replies)...
I had a mylogram way back in 1981...think it was the nasty kind...all I know is that I got so sick from it...I wished I would die...and I suffered from it for over a week - the nausea...massive headache etc.... . After the first mylogram..(had another one 4 yrs. ago...just before my ACDF...but it was soo much better),I heard about the problems they could cause..and worried a little about that side effect. I sincerely hope that this is not your problem....how could it show up on one test and not another?? I am saying a special prayer for you, and sending you a gread big hug....let us know what is defenitely going on with your surgeon and your diagnosis....

Leslie

Moldova,

I am so sorry you are going through all this. I had never heard of this before. I'd heard of arachnoid tumors as my husband's secretary was just diagnosed, but I'd NEVER ever even read about ARACHNOIDITIS. Every person on this board should read up on it. It really makes me realize how extremely important it is to seek out a highly qualified spinal specialist and then, to proceed with extreme caution.

I spent the last two days online reading everything I could find on the topic. One of the leading men in the field is located in the Twin Cites. Since I haven't picked a surgeon yet for my proposed fusion, I think I may try to get an appointment with him. My daughter just moved to Minneapolis so I'll have an excuse to go visit her and find out valuable info at the same time. This man, Dr. Charles Burton sounds like a "whistle-blower" for the spinal testing and surgery practices. I learned so much reading his essays that are available online.

Moldova, I'll say a prayer that there will be a stisfactory solution for you. Thank you for alerting all of us to this issue.

HUGS,
xx Tsohl

hi I feel so sorry for you just to let you know myself and my son will say an extra prayer for you tonight Ray

Thank you so much to all of you for your kind words and prayers... I wish you all to get better too, leave better, pain free lives...

Tsohl, I never heard about this condition either. And you are so right about searching for a good Doctors, for who we are not just numbers, but people with a problem. And the once who listen and not just trying to make money of us sending us for tests, treatments without explaining what may happen, etc.
I loved when my new PM at HSS told me that they "custom made" treatments for everybody since we all have different problems. They don't treat people "one size feets all" and that is what we need.

Sage, I hope to see my surgeon soon. But I read report PM who evaluated me and did discogram, PM who works with my surgeon together. Nothing hopeful was there for me. Will know more after I see my busy surgeon.

Thank you, Raymond , for your prayers; so nice to hear that kind people like you have a "window" to think of others.. Thank you...

Hello Moldova,

I should go back through all your posts to find this info rather than just asking you, but it is a lot easier! Did you go to HSS all along or did you see others first?

I have been trying to avoid surgery for two years, mainly because my internist thought it would be possible (without seeing any MRIs, of course). I have now seen 8 fellowship trained spinal surgeons. Every time I get ready to make the appointment, something happens that interrupts my decision. Now I read your post and subsequently spent two days on the internet reading all about arachnoiditis, and am thinking I'm not quite ready to make the decision!!

I have an appointment on the 29th with a doctor at the university spine clinic -- he did his training and residency at HSS, so I am eager to meet with him. I think I'll ask him more questions than usual!!

Try to keep your spirits up. I know that is much easier said than done.

HUGS,
xx Tsohl

Tsohl,
Unfortunately I had my surgery done in my state, N.J. If I would know what I know now, it wouldn't happen. I had trust in this Dr who operated on me and how was nominated couple of times "Best spinal surgeons in a country." I don't want to sound bitter, but it is simply not truth. I find out later that he has more law sues than anybody else and all fusion surgeries related.

I saw many other Fellow spinal specialists in this area but nobody wants to take you as a patient (one Dr told me that he is not willing to clean up somebody else's mess). Not only this, they would not say honest opinion about my situation since they all know each other. I got so tired from all this and went to HSS. I saw Dr Camissa who is a chief of Spinal surgeries Department. He sent me to HIS Neurologist and to HIS PM Dr. He told me that he wants me to see them since he trusts them and wants to make sure that his diagnoses is correct. Boy, how different they treated me. I felt like a person, not a number. They were very honest with me about everything. All 3 of them. My PM Dr honestly puts on a paper (so did Neurologist) about Arachoidities and that they can't recommend surgery under those curcumstances. Usually it's not operable.

Meawhile I need surgery again for 4 levels now (re-do the first fusion and add 2 more levels). I am waiting on app with my surgeon and see what he has to say.

You don't read only posts like mine. Some people who go ahead with their lives are not on this board. They doing well. I don't want you to get discouraged by some experiences. Many of us did not have a choice but surgery that is why NO was not an option for us. If you feel you can leave with pain and just do you PT, PM, etc and be helped by this - good for you.
But if something is very serious (tests can show this) and you need a surgery - be positive, find the best Dr you can and hope for the best.
Just don't want you to get scared by our posts; everybody so different, every surgery is unique and recovery is different too.

Thank you again for your information and I am here to answer all your questions.:)