The Complexity of Arnold-Chiari Malformation

I had surgery back on 8/2006 for few years i been better but not 100% not is getting worse my right knee can keep balance I'm using knee bracelet to keep balance headaches never leaved me but getting worse the ringing in my ears is like everyday I'm getting worse. Anyone is having this problems .....HELP !!!

My name is Tahnee I have Chiari found out this year, but I also have Arachnoiditis from an epidural during a c-section for child birth in 2009. It took me 3 years for my pain to get worse and worse. Was lied to and told pain after the epidural would go away in a year, it only got worse. I have since meant 10,000's of people that have Arachnoiditis a undocumented, unrecognized serious medical condition caused by a vase array from natural to man made side effects from procedures, 90% of people that have Arachnoiditis have it from medical procedures many are made worse with more invasions of the spinal cord (i.e epidurals, nerve blocks and surgeries). How can one get ARC/ARAC (arachnoiditis), from trauma to the spine, epidurals, spinal blood patches, meningitis, spinal surgery's, spinal stenosis, nerve blocks, Multiple lumbar punctures, subarachnoid hemorrhage and more. Any invasion to the spine can cause arachnoiditis. Thats right ANY.
The symptoms of Arachnoiditis are pain, mild to severe headaches, numbness, tingling, vision disturbances, dizziness, nausea, vomiting, weakness, paralysis, loss of sensation in legs, loss of leg movement, muscle wasting, bladder, bowel and sexual dysfunction and uncontrollable twitching. Arachnoiditis Syndrome Sufferers may present with various combinations of back, buttock and leg pain, numbness, muscle weakness and often widespread “Dysaesthaesia”. This takes the form of diffuse often intense pain across the back, spreading up to the thoracic spine, down to involve the sacrum and coccyx, deeply in to the pelvis or perineum and extensively down one or both legs. The symptoms may present as pins and needles, cold or scalding water or a sense of ants crawling up and down the body in these territories.
Okay, arachnoiditis is bad—but what exactly is it?

Caused by foreign substances (blood is foreign to the spinal canal) entering, or damage to, the spinal canal, arachnoiditis starts as a massive inflammation of nerve roots and the arachnoid, one of the three meninges (membranes) that surround the central nervous system. This is where the disease's funny name comes from: arachnoid for the name of the membrane initially inflamed and -itis for "inflammation of". The inflammation is chronic. It literally never ends and produces constant burning pain in the spine. This, though, is only a partial description of the damage done.

Scar tissue grows in the cerebrospinal fluid, which then impinges on nerves, even choking them completely. It pushes nerve roots aside and can ultimately fill an entire area of the spinal canal. This causes a multitude of symptoms, which can affect any area of the body. Any organ can be affected. If the nerve root that supplies an organ is damaged, then that organ malfunctions.
What are the odds of getting arachnoiditis? That's a very good question. It seems that no one keeps records on it. Doctors avoid diagnosing it, often using clever terms, like Failed Back Surgery Syndrome, Nerve root damage, Clumped nerve roots, which gives the impression that the surgery simply wasn't successful. This often hides the fact that the patient was left with a completely new and incurable condition.

Diagnosis, which can usually be done quite easily via MRI, is often evaded with terms that describe the disease, such as fibrosis or nerve root clumping, but fail to use the term arachnoiditis itself.

There are no statistics on arachnoiditis patients. Those with the disease often feel like they are the medical system's deepest, darkest secret. All too often, they are treated accordingly. A look at some online support groups will quickly show the utter lack of support that many, if not most, of these patients receive, from evasiveness to outright lies about whether they have the condition. They are often not told for years, if at all, that they have the disease.
The majority of cases today appear to be caused by spine surgeries and epidurals. According to a report in PubMed, as many as 40% of all back surgeries result in Failed Back Surgery Syndrome. Different reports from the medical system offer numbers ranging from 10% to 40%. How many of these cases are actually arachnoiditis is unknown, but that is only because the medical system does not keep records. They appear to avoid knowing. One brave doctor, Antonio Aldrete, who has dedicated his practice to victims of arachnoiditis, estimates that up to 25% of back surgeries result in Failed Back Surgery Syndrome.

Even if the number is the lowest estimated, it means that well over 50,000 cases of Failed Back Surgery Syndrome are created every year: 10% of more than half a million back surgeries, as reported by the American Association of Neurological Surgeons in 2002.
Is this an extreme case? Who knows? The medical system refuses to do studies or cooperate in any way with finding out the extent of the disease—though doctors continue to say that it's so rare, it's not worth considering. But what are they basing this statement on?
http://www.practicalpainmanagement.com/pain/spine/suspecting-diagnosing-arachnoiditis?page=0,1

Hi I so not know if you have already had surgery I have recently undergone a craniotomy or foramen magnum decompression surgery. I had a 9mm herniation and a thoracic syrinx. My op was to prevent paralysis and I was not guaranteed a relief from the symptoms. The symptoms are hard enough and vary depending on the day I'm having but I struggle on and I still work full time.

The surgery now this is the difficult bit I was very calm and collected and ready for what lay ahead I very much believe in what's meant to be is meant to be I woke up from surgery in severe pain the ICU nurse kindly kept injecting morphine which provided no relief. I was taken to my room and tried to eat I was sick. I asked family to take me for a cigarette in a wheelchair before leaving me to sleep. The morning after the real pain kicked in I couldn't move my neck or head and again was given morphine an hour after it was given I was in the worst pain id ever felt beware of that drug it's side effects are increased cranial pressure and headaches !!! I was then left only with paracetamol and codeine 3 days without sleep I was given diazepam and discharged home 3 days post op. Although the pain was extremely bad I was walking around the day after surgery. Two weeks post op now and the pain has eased massively the sickness hurts as the heaving motion hurts like hell so does sneezing I actually screamed when I sneezed.

I had part of my skull removed I also had my C1 vertebrae removed and the dura was also removed an replaced with a patch. Post op the patch leaked and small amounts of spinal fluid was leaking from the incision. I went back to the hospital who threatened a 2nd op although I managed to convince them not to I had extra stitches put in to try and hold it in. It's not over though eventually the patch will fail and the fluid will build up. But I've survived this once and I will do it again.

My advice to anyone having to undergo this surgery accept what is to come before you go in mentally prepare for what the outcome may be and stay strong only sheer strength and determination will pull you through and finally be prepared for the help you will need with the little things like showering getting in and out of the bath even putting underwear and socks on was an issue for me. My symptoms are not cured some have worsened I had some problems swallowing but that is now worse. Balance is also more of an issue now but I dot care as long as I can walk I'm happy.

Good luck to everyone having this operation

I have been diagnosed for 20 years n had the surgery 2 1/2 years ago followed by an infection followed by the surgery again. I was never better till I fell 40 ft. (Classic cartoon fall) n landed right on my head. My symptoms returned with a vengeance!!! I have been treated Luke I'm nuts n kicked while down by dr's so much I refuse. To c a Dr. I have complications from scar tissue, bone fragments, n spinal fluid leaks to an aneurysm! I live each n every day in massive pain with nothing more than over the counter aide! I do this because if go to the Dr. 1 more time n get no results I'll need the nut house!! LOL wow that really got away from me. Yes I to have that pop followed by burning stabbing pain.its terrible, crippling pain!

Hi Serendip,

Sure hope your still here, my daughter was just diagnosed and feels so alone...i feel alone and scared for her...we would like to talk to you and your daughter if you want

I am so sorry to hear your daughter is going through this - it is horrible to see your child in pain, or watch as the activity they have a passion for slip away.
My son is now 18, had decompression of 17 mm ACM at age 15. Initially he seemed to do well, the neurosurgeon assured us it was "fixed". He also said this to our primary doctor - my son was a wrestler at the time he was diagnosed and had to end his season. We were told he could return to it after the surgery. Despite my apprehensions, the doctors said it was fixed so I let him wrestle again. He went to a 3 day camp - he didn't make it through the first day. He was having shock like numbness and tingling, and a bad headache. There went the season. He had a spinal to check pressure, but they didn't have lay flat long enough and he developed a horrific headache every time he was upright for more than 10 minutes. He tried to go school but was vomitting from the pain. Children's ER sent him home saying it was a "migraine". Put him on a Topamax cocktail - which helped at first. His symptoms were better for awhile,but off and on problems. Again, every single time we took it to the doctors, it was "not from the chiari, that was fixed". We were basically looked at as hypochondriacs at times with no improvement, other than his symptoms fluctuating. Last month, he was at work and called me to come pick him up, he had recently been having problems with severe pressure in the back of his neck and head, balance problems, but at this point it grew worse. When I picked him up, he was having trouble finding words, slow responses to questions, speech was very slow, "out of it", felt like he wasn't walking right etc.... took him to what is considered one of the best hospitals in the area, teaching hospital etc.. they said "migraines" and sent us home with Topamax prescription which I tossed out. They could not even SPELL Chiari, did not really know what it was. I started the neurosurgeon search again - THANKFULLY we have answers, although we could have hoped for better news. What we have is a failed Chiari surgery. We KNEW it was Chiari - the neuro specializes in Chiari and belives it may be scar tissue from the original surgery. He will be doing full head and neck MRI soon, is wearing a cervical collar starting tomorrow 24/7. To determine, after scan, if it is scar tissue, they will have to re operate to try to remove it. He is currently a weightlifter and cannot lift until this is resolved.
I hate it when doctors assume it has been "FIXED" - they rule it out automatically without considering it even. Or label it something else. KEEP SEARCHING AND PUSHING FOR ANSWERS - it is a long battel, but worth it in the end. It is my understanding that Chiari institute (NY) doesn't bill your insurance company - so definately check that, although I could be misunderstanding that. There are many other specialists in this area, you may want to try tome of the university hospitals or teaching hospitals, pediatric specialists etc, whatever you have access to. I know this is long, but my heart goes out to you and your daughter. Especially when they are athletes and can no longer participate - or any activities that are so important to children. Good luck to you!

April,
I was wondering if you had decompression surgery. My son had it six months ago. Following the surgery he had uncontrolled hiccups, until he was prescribed meds to stop them. Now 6 months post surgical, he is having restless leg syndrome, hiccups and gagging. I noticed in your post that twitches were a symptom of yours. Does this occur all the time or at night? Also, do you have syrinx (fluid on the spine).

Thanks..and hope you find someone to help you.

Sincerly,
Concerned Mom