Hi I have just read that having chiari surgery with Intercranial Hypertension can cause problems? anyone know’s what these are? I am awaiting surgery and am trying to get all the info I can before I see my surgeon, I am still unsure wether to have the surgery, although my symptoms have become worse ovr the past 8 months some of the stories I have read terrify me and I don’t know whether to risk it? any advice? xx
I have IIh and chiari , i saw a NS who wanted to have the iih treated 1st so i had a stent put in on may 14th of this year. it did not help my symptoms , so her and the interventional radiologist who has been managing my iih have decided that decompression is the next step for me. i have not heard of it making things worse I know in a iih support group that i am in many of us also have chiari and that they seem to go hand in hand .
Hi Skeeter,
I also have IH and had decompression surgery in 2005. It can cause major headaches where medications don't relieve the pain, it can put pressure on your optic nerves and cause vision problems, and you can hear your heartbeat in your ears or a whooshing sound. Those are the three major symptoms. Vision problems can be permanent. I have a bent optic nerve and reduced vision in one eye & have friends who have almost lost vision or have double or triple vision. I am not trying to scare you only tell you the truth.
Other Symptoms
Chronic IH can affect multiple areas of the body. One of the mysteries of this disorder is that not every person will experience the same set of symptoms. This is a primary reason why chronic IH is often misdiagnosed. However, while each individual may not exhibit every symptom, there are common symptoms listed below—in addition to headache, papilledema and pulse synchronous tinnitus—that many do experience.
Pain in the arms, legs and back (arthralgia): Sharp, deep nerve pain in the arms, shoulders/upper back, hips/ lower back, and legs can occur with elevated intracranial pressure.
Severe neck stiffness: An extremely painful stiff and sore neck that is hard to move, is a recurrent complaint. But, in contrast to the stiff neck that can accompany other neurological illnesses like meningitis, there is no sign of infection or other abnormal findings when cerebrospinal fluid is examined. Some researchers speculate that the reason for the stiff neck may be due to high intracranial pressure transmitted from the head down the spinal subarachnoid space. This may cause the spinal nerve sheaths (which cover the spinal nerves and are located at the back of the head and in the neck) to stretch at the point where the spinal nerves exit the spinal cord and enter muscle tissue.
Dizziness, lightheadedness and balance problems: These symptoms can range from mild to severe, depending on the person. Gait ataxia (difficulty walking) has also been reported in chronic IH cases but the exact cause is not understood.
Parasthesias (numbness/tingling in hands, feet, face)
Nausea/vomiting: This symptom is associated with the chronic, severe IH headache.
Rhinorrhea: Spinal fluid leakage from the nose (rhinorrhea) is a result of high intracranial pressure erosion of the bone separating the skull from the nasal cavity.
Endocrine problems: While uncommon, endocrine problems can be due to the flattening of the pituitary gland and empty sella syndrome.
Malaise: Malaise and fatigue can be a side-effect from medication. It can also be a result of chronic debilitation from headache pain, inadequate diet, and sleep deprivation.
Depression: Depression and anxiety are associated with chronic disorders. However, recent research has found higher rates of depression in women who experience chronic headache. Whether this is also true for chronic IH and depression is unknown at this time. Depression appears to occur at somewhat higher rates with chronic IH than expected but research is needed to confirm this observation.
Memory difficulties: Short-term memory problems and dysgraphia (trouble spelling and recognizing words) are often mentioned by people with chronic IH. This is another area in which answers about chronic IH and its effects can be uncovered through research.
Exercise intolerance: For some, physical activity may exacerbate head pain and other IH symptoms. Unfortunately, this can be especially challenging for someone with idiopathic IH, who is trying to lose weight.
http://www.ihrfoundation.org/intracranial/hypertension/info/C70
Chronic intracranial hypertension is a neurological disorder in which the increased cerebrospinal fluid (CSF) pressure has generally arisen and remains elevated over a sustained period of time. It can either occur without a detectable cause (idiopathic intracranial hypertension) or be triggered by an identifiable cause such as an underlying disease or disorder, injury, drug or cerebral blood clot (secondary intracranial hypertension). It is frequently a life-long illness with significant physical, financial and emotional impact.
Chronic IH can cause both rapid and progressive changes in vision. Vision loss and blindness due to chronic IH are usually related to optic nerve swelling (papilledema), which is caused by high CSF pressure on the nerve and its blood supply.
In addition, individuals with this disorder often suffer severe pain. The most common form is a chronic headache, which is generally unresponsive to the most potent pain medication.
Anyone can develop chronic IH, regardless of age, gender, ethnicity, race or body type. While the chronic form of intracranial hypertension is not usually fatal, current treatments for the disorder can result in serious, sometimes life-threatening complications.
Researchers are eager to identify the mechanism that underlies chronic intracranial hypertension. While no one is sure why IH happens, some researchers believe that the answer may involve resistance or obstruction of CSF outflow through the exiting pathways from the brain. Our mission at IHRF is to discover exactly why chronic IH occurs and to foster medical research to find better ways to treat, prevent and ultimately cure this disorder. While our primary focus is on chronic IH, such research may also lead to improved understanding and treatment of acute IH.
http://www.ihrfoundation.org/intracranial/hypertension/info/C62
I have been hospitalized four times since May 2013 for IH and been in the ER several times. This is very serious and painful. I even had 10 LP's in one night. Not fun at all. No one can figure out why my IH has gotten so bad since the beginning of May. It does not always resolve after Decompression Surgery. Please ask your NS many questions if you think you have IH or have already been diagnosed. I had to have decompression surgery because my CSF was 98% blocked and was pushing my vertebrae out of my C Spine. I almost became a quadriplegic. My only symptom other than lifetime headaches was tolerable neck pain. I thought I had been working too much. Please do not think I am overrating, this is just very serious. The headaches are like your head hits a windshield doing 75 mph. Since the beginning of May I have had a constant headache and basically only leave my home to go to the Dr. or Hospital. That is not usually me. Other Moderators will tell you how it has affected me & my life since May. I would give anything, even years off my life to make this go away. I even wake up and can't sleep no matter how much medication I take.
I am so sorry but this is horrible there is no middle of the road or positives about IH.
Tracy Z.
Hi Tracy, I was refered urgrntly to NS when I had a routinue eye test, my disc were very flattened and my eyesight was getting worse that was the reason I booked the eye test, my NS said I needed urgent MRI she said it could be one of 3 things, IH,Chiari,Brin tumour, thank god it was not the latter, but I had 2 out of the 3 conditions( I have always been greedy) I take mediaction for the IH and although the headaches are daily I can manage them at thee moment, my last eye test showed my disc were back to normal and it was a new optician and he said if he hadn’t have known my history then he would’t have known there was a problem by my eyes which was reassuring,since Oct last year I have been having problems with my legs very week and unable to walk very far or stand for long went for another MRI which showed 2 bulging discs at C5 C6 they said they were causing the problem, I was’nt convienced so payed for a second opinion which the NS said that although the disc were bulding they were not touching the spinal cord so to leave well alone he sais I definatly needed the Decompression surgery , I spoke to my own NS who didn’t seem happy but said he would recheck th images again I hadn’t eard back from him but when I phoned his secretary she said I was on the waiting list for surgery, so thats my very long story so far, you sound like you have a very rough ride, so sorry to hear that’ this condition sucks but at least now I don’t feel so alone thanks again, take care xxxx