Those who suffer arachnoditis

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Moldova

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Not only not to have surgery; people with ARC consider non-operable. Nobody wanted to operate on me second time, only one DR Camissa at HSS agreed to operate on upper levels, but without even touching affected area from previous lurabar area. He said that he would liike to go in and decompress nerves from that area, but wouldn't dare even touch it.

LForster, I am a little confused why your DR can't diagnose ARC with a help of Ct and MRI, why he has to guess? You can clearly see spinal cord and nerves scarring on those pictures. It looks like a thickinening. More time goes by, higher areas of thickening appear on ex-rays. Unfortunatelly does not stay on one place, kind of "spreaRAB" causing wider areas of severe pains and affects more and more parts of the body.
I did not have my arms/hanRAB, shoulders and upper spine involved at first; even last year it was not a problem, this year it obviously spreaRAB faster than my PM anticipated.
I read Dr. Smith's research. I found a lot of good information on Internet about this debilitating condition and new research. I don't want to be a part of research due to my RA auto-immune disease and heart problems. But very interested to know all about it.

We have to be so careful though about it. I read last year about experimental laser treatment of scarring of spinal cord and how promissing this is.
Well, than I read how dangerous this is and they had to stop this type of experiments. Spinal cord is not something you can play with.

Feel free to ask me any questions, I am here for you.

Stymie, Lforster,
how is your pain levels? What exactly bothers you with your bowel/bladder problems?
Do you feel your bowel and do you feel desire to go to the bathroom? Very sorry for the details, but we are here in the same boat, so forgive please for such questions; it may help us to understand details of this condition better by sharing...
All the best to you!!!
 
How/who identify that you have ARC?

What has been done to help reduce your suffering?

Do you know of any new breakthroughs in medicine that offers hope to ARC suffers?

Any info appreciated.

Aloha....
 
"LForster, I am a little confused why your DR can't diagnose ARC with a help of Ct and MRI, why he has to guess?"

Until I read this post, I was not aware of what tests could prove it. Since this is a W/C case, my PM Dr. has to refer me to see other Drs. When I started not peeing for days, he sent me to see a Urologist. That Dr.said I had a neurogenic bladder. So, the PM Dr. sent me to a Neurologist for an EMG and NC test, that showed up as chronic nerve damage on the right side, but it was not severe. The Neurologist said he thought it was Cauda Equina Syndrome. The PM Dr. said that if it were CES, the EMG would have been off the charts, and refused to accept the dx. as CES. I asked him, if it was not CES, then what was causing the bladder/bowel issues, knowing that the Urologist said that they were due to neurological problems. He kept saying he did not know why I had these issues and the Urologist would be the one to take care of them. And he never would try to figure out what was causeing the problem.

Then I became nurab in the genital area and I started to do research on my own. I read about ARC. and printed off a sheet with all the symptoms, and took it to my PM Dr. He looked at what I had, and he stopped when he saw that the 1st page, which addressed ways people get ARC. & he did not even make it to the next page, of the symptoms. He laughed and said that you can't always believe websites. He pointed out one of the examples of how to get ARC, which was from epidurals that women have, prior to giving birth. He said, if that were true, think of all the women who would have ARC. He thought that I was trying to place the blame of my problems on the surgeon or on him, and he gave the paper back to me. I told him that I could care less about how I got it, but that I wanted to know what I had. Then I gave him the report back and opened it to the 2nd page, where the symptoms were, and asked him if he agreed with the symptoms that were listed. He did, and then I mentioned to him that I had at least 3/4 of the symptoms...so was it possible that I had ARC. That was when he said, for us to cont. with the RF procedure, and if it worked, I did not have ARC, and if it did not work, then it was possible that I did have it. The RF did not work and he did not mention it again, until recently. I have just finished having the stimulator implanted, and it is not working. So he has just said that since we had tried everything and nothing has worked, and because my symptoms, not only match those of ARC...but are getting worse, he thinks I have ARC.

As far as my pain levels, with meRAB, I can keep it down to 5/6, as long as I don't over do it. If I do, do too much in one day, then I end up in a 8 for several days. As for my bladder issues, my bladder originally started where I'd sit on the toilet for 15 mins. and not be able to go. I'd go anywhere from 8-over 24 hrs. without feeling the need to go. With medication and self-cathing. myself 3 times a day, I am able to go the 5 times a day, that my Urologist wants me to go. I take 2 flomaxs ea. night to help the situation. My groin is nurab, & I suffer with chronic constipation.

I know this is long, and I am sorry, but it was hard to answer your ?s w/o giving you the details. Thanks for asking about my situation. I feel I can learn alot from you.

Thanks again,
Lorie:angel:
 
Moldova-I have another thought/question for you. Now that I know that a CT scan can dx. ARC...being that all my symptoms fit into those of ARC. & my dr. was aware of that, shouldn't I have had a CT prior to having the stimulator implantation? It would seem to me, that if I do have ARC., I should not be having more surgeries. Wouldn't the scar tissue from the addl. surgeries make things even worse? Does that make sense?

It really bothers me that he has not suggested finding out for sure, if I have ARC. If it weren't for you, I would have gone on thinking that there was no test.

Thanks,
Lorie:angel:
 
Wow, am I glad to see this thread, since I have been searching for others going through what I am going through. Unfortunatly, my Pain Management Dr. is only treating the symptoms and has said it will be a life long effort.

I see a Urologist for bladder issues, a Neurologist, who dx. me, and my PM who is my main Dr. I just had a spinal stimulator implanted and so far it is doing some good. I had hoped it would take more of the pain away and that I could get off of my meRAB, but none the less, it does help some. I am also starting P/T next week, to see if I can stregnthen my right thigh and my left calf and foot. When I walk more than 15 mins. I strart to drag my feet, which leaRAB to me falling easily.

I would love to hear from you, re. what you are going through and if you have found anything that gives you any relief. By the way, I see you are from Kona...I was born and raised in Kauai/Honolulu. Its amazing what tech. can do and how people can connect to others from accross the county/world.

Lorie:angel:
 
Kona,
1. It was diagnosed by CT scan, Myelogram, MRI. At first Neurologist got interested in confirming this diagnoses based on symptoms only. He evaluated me for about 30 minutes; i had to move certain directions and tell him what exactly I feel. He put pressure on C-7 and told me to let him know what exactly I felt. Than he told me about ARC and that he suspects I got this condition but he neeRAB to do couple of test to confirm it.

2. When it was confirmed, he explained to me how could I get it and what to espect in a future.
No cure, no treatments. Pain meRAB for the rest of my life. Unfortunatelly this condition does not stay put so to speak, it spreaRAB further.
This is severe scaring of nerves and spinal cord. Pain is different than just pain from surgery or pain from inflammation. It feels like pain is all over your body, which is true. All nerves are hurting severely, affecting every part of the body. And of course my walking suffers, any body movement is a big job due to pain.
Even PT they do very careful (and not too much) due to nerve damage.

Unfortunatelly not cure so far and not much they offer for pain. I am on opiates not only due to ARC, i had 2 spinal fusions and more. PK really don't help me much with nerve pain. I also on Lurica, in a past was on Neurontin, Keppra. What helps other people doesn't work much on me. Many people like how Oxy works for them; I don't have much relieve being on this meRAB. I was 3 month on steroiRAB, I had Gold Shots (I also have RA) and chimo therapy for pain, but when treatment stopped, I am back to square one again.

Worse is bladder and bowel problems. They tried to help me with meRAB for overactive bladder (even though I don't have one), but it did not work. For bowel nothing can be offered so far. :mad:

I have bad days, I have better days. So i try to enjoy when I can. I try not to think about Dr's say "ARC will never get better, it always gets worse". Whatever time I have on this earth, I try to leave it as fullest as I can. I have wonderful family and frienRAB - what else can I ask for?

Please, feel free to ask any question you want; I am here to help you.

Best of luck to you!:angel:
 
Lorie,
this is exactly was my question for you: how come they did surgically procedure on you if you have ARC? Of course different DRs have different vies; that is why I am such an advocate about second opinions of independent DR from different areas (where they don't know each other).
I was told that stim would be a good idea for my pain; but since I have ARC I have 50/50 chanse to get even worse since this is invasive procedure.

Very hard to win in this situation, I understand where you are coming from.
My bladder has same problems as well. For constipations I take so many different Enzymes, Acidophiles, natural teas. So this helping my constipation, but... the major problem is: I don't feel the need to go. Even when I take Fleet (which would give me runs in a past), I may loose control of bowel, but I don't feel it's coming (sorry for the details too), and if I don't sit for an hour on toilet concentrating on go, I could go for weeks without doing it. Just no feelings in that area and don't feel any desire to go. Groing area nurab as well.

When DR tells me not to trust websites, I want to say what HE can offer me, how he can help me to answer my questions. I understand we have to be careful about information on Internet, but if you know this is respected web. why not to get more knowledge about your problem. Like my girlfried's hubby (he is GP) says: DRs are too busy to search for new information, that is why sometimes patients know more than a DR. Sad, is in it?:confused:

He told you that women can get from epidural during delivery? Not necesseraly. In fact if you read Information about HOW can you get ARC, it names 3 ways: spinal epidural shots (from preservatives in it), Myelogram dye and during spinal surgery (blood gets into spinal sac). I had 9 shots, Myelogram and surgeries. Who knows?

Do you feel a lot of pain? Can you point out your pain?
My pain is so-so deep, feels like it's coming from my guts. I don't even talk about areas where I feel pain, feels it's all over from neck to the toes.
I also have nerve damages after my first fusion, so my legs, feet and toes are having a lots of pain and problems.

Best wishes to you...:angel:
 
Moldova-Thank you for your time that you put into your post. I have not spoken with anyone else who has been through this already and I am new to it. It was very informative and gave me a good insight to what I have suspected for the future etc.

When my bladder/bowel problems became an issue, after my 2nd failed fusion, my Urologist and Neurologist both said they thought it was Cauda Equinal syndrome. But the ENG only showed minor nerve problems. So, my Surgeon and PM Dr. said that it could not be Cauda Equina and could not explain the bladder/bowel dysfunction. (Even though Urologist ran all of his test and said they were definatly due to a nerve problem). My surgeon said that my symptoms should not get worse, because they doubted the CE. But yet, at that time, no one told me about ARC. Then I lost complete feeling in the genetal area and the bowels got even worse. With 2 Dr. saying CE and 2 saying not CE, I finally asked my PM Dr. about ARC. He said that the way we would know if after the various treatments that he was going to try, if they worked, it could not be ARC, because ARC is a permanent disorder with no treatment. If all treatments fail, it likly was ARC.

I have recently just had the spinal Stimulator placed in and it is not giving me relief and my pain is worse than before the stimulator was implanted. So, just this week, I was DX. with the ARC. Does it make sense that the pain I am in, after the surgery, is worse than pain prior to the surgery. This seems to have been the case with each of my past 3 surgeries. The Neurontin that was working for my sciatica is no longer working. I've been taking it for 3 years with 90% relief and now no relief. Would that have anything to do with the ARC?

I am sorry for going on for so long, but this is all new to me and I was so glad to read a post from someone with more experience than myself. You are right about frienRAB and family being the main thing;). I am so thankful for mine as well.

Thanks again for your time,
Lorie:angel:
 
I would love to hear from you, re. what you are going through and if you have found anything that gives you any relief. By the way, I see you are from Kona...I was born and raised in Kauai/Honolulu. Its amazing what tech. can do and how people can connect to others from accross the county/world.

Lorie:angel:[/QUOTE]


Howzit, Lorie. I mis dem Hawai'i daze.

Be back to respond soon.

Aloha...
 
Thanks again,
Lorie:angel:[/QUOTE]


I have read yer post at leat twice. I have been so busy and tired with W/C nonsense that I don't find time to respond as in way I wish.

Did I read it right in that neurological bladder problem was 8 times in certain time frame but brought down with meRAB and catheter? I have to go pretty much every 15 minutes. No meRAB. No cath. Insurance denying neurological bladder/bowel. I don't want to go there right now. Still fightin'. Heck, I peed myself at least seven times. Found out that was a terrible thing to have happen by doctor just yelled at me...another terrible story.

It's worst kind of irony when you are told to seek therapy through group discussion (isn't that what this place is) and then you return to doctor's when info you have discovered that you would think they should know about, then they just toss it off and say don't listen to them, or bother with that report. Oy.

More laters.
 
Hi Kona, I was diagnosed with AA in 10/07 by my neurosurgeon doing a second opinion. I had already figured out that I had AA from first hearing about the disease from Moldova being diagnosed with it. I started looking into it and found that all my symptoms and growing pain and disability could indeed be explained by AA.
I was a mystery case for more than 18 months-having more and more pain and growing neuropathic pain in my legs. Pushing myself to work a very physical job was doing me no good, either.
It's upsetting to learn that it is an incurable, painful disease, but at least I knew what I was dealing with. I'm on a cocktail of meRAB-lortab, neurontin, baclofen, tramadol, Celexa, and Androgel to replace depleted Testosterone. It's very important to get pain under control as my blood pressure was being driven way up by pain, even though I never had elevated levels before. Currently, BP is normal as the meRAB are doing their job.
You may want to do a search for Dr. Sarah Smith, as she has done a lot of research into AA and there is a fine support group for fellow-sufferers, though I can't link to it here.
My doc was willing to try a corabo of Trental and Vitamin E for me, which I had found in a couple small trials online had been successful in some patients at dissolving epidural fibrosis. He thought perhaps it could work inside the dura, also. I'm willing to be a guinea pig.:D I'll let y'all know what happens with this. Only been on the regimen for 3 weeks.
First Rule of AA is to not have surgery to the area of the spine affected nor to allow any needle or any other invasive treatment to the spine.
May the Lord strengthen you in your day-to-day battle with this disease.:angel:
 
Originally, I was having a difficult time going. I'd sit there for 2 mins. and if I could do anything, it would just dribble out (sorry). Also, I'd get that urgent feeling of having to go and when I'd get to the restroom, I could not go again. That happened all day long...about every 1- 1 1/2 hrs. The Urologist tried several meRAB. and they either did not work or worked too well and I was having to go every hr. Finally he found what worked best for me and that was 2 flomax ea. day and cath. 3 times a day. The reason for the cath. was because if I was going all day long...he said there was a good chance that I would have an accident...which did happen a couple of times. But, if I couldn't go at least 4 times a day, that meant the bladder was retaining the fluiRAB and eventually, it would overfill and I would then have an accident. So, he found a med. that helped me to not go as much and then I cath. myself to get it out. The intention was to start with the cath. and try to retrain my bladder and then possibly would not have to cont. using it. I am now actually able to go many days of only cathing myself 2 x a day.

I too am on W/C and they have been paying for it, because the Urologist wrote out that the problem was Neurological and stemmed from my injury. But, after a year of them paying for it, they now said that they don't believe it is related (because my pain management dr. said he did not believe it) and we went to court. The Judge ruled that because the 2 drs. ea. had their own opinion, that she could not give the Urologist more weight than the PM and said that she did not think it was related. (I read that and thougt that of course she can give the Urologist's view more weight...its his specialty. It makes no sense). But I am lucky, because I have medicare as well...what w/c denies, they will pay. But I do have to pay for the co payments and deductables.

Your Dr. is right, if you actually have had an accident, it is serious. My surgeon said that if that ever happened, that I had to go in for emergency surgery. That is why every neurologist and orthosurgeon that I have ever seen, always asked if I have any bladder/bowel problems. There is another disorder called Cauda Equina Syndrom...if you have an accident, the sooner you get into surgery for it, the more lilkely you wont have the problem for life. I don't want you to have to relive the aweful way that your Dr. treated you, but can you at least tell me if he treated you for the accident or talked to you about why it is important to let him know that you are having accidents?

I know in VA, w/c allows for you to get a 2nd opinion and they pay for it. Then if you want a 3rd one, you have to pay for it. Are you able to get a 2nd opinion? It sure sounRAB like you need to find a Dr. that will treat you for this problem...because it is a very serious one and it is a progressive and life-long problem. If it is CES, it can be treated to fix the bladder/bowel problems.

I am sorry for the hard time that you have had. We don't deserve to be treated with such disrespect and rudeness...just because we were injured.

Lorie:angel:
 
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