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    Old 11-10-2008, 01:44 PM   #1
    clueless42
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    PLEASE - Qs about surgery to correct Chiari

    Hi,
    Just found out Friday I have Chiari Malformation and a large syrinx. I saw a neurosurgeon this morning. He recommended surgery, removal of some of the bone at the base of the scull. He also ordered 3 more MRI to check the brain and rest of spine to make sure nothing else is goin on. He said that by correcting the malformation the syrinx would go away on its on.

    Has anyone had this surgery? Is it so simple (so boring to a neurosurgeon!)?
    Can I really go back to a "normal" life?

    ANY info would be greatly appreciated!!!!!

     
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    Old 11-10-2008, 01:59 PM   #2
    bethsheba
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    Re: PLEASE - Qs about surgery to correct Chiari

    Peggy,

    Forgive me for butting in because we really don't know each other...I took the liberty of looking briefly at your other posts and I would seriously question the chiari diagnosis...what have you done about getting a second or a third opinion on this diagnosis? Have you explored the possibility of Lyme Disease? Of MS? Of any other difficult to diagnose conditions?

    I know there are a few people who have been diagnosed with chiari on this board, but I wouldn't assume their diagnosis is the correct one simply because their symptoms/diagnosis may be similar to yours. And I wouldn't assume that your doctor is correct in his/her analysis of your condition.

    I was told I should have surgery by my specialst, got a second opinion from another specialist who recommended the same thing, and sought out a third opinion only to have the third specialist (who was the best qualified educationally and experience wise) laugh and tell me the other two specialists must have been in the market for new cars!! This may sound unbelievable, but it happens.

    It's been over 15 years since I got that third opinion, and I have been symptom free since. It terrifies me thinking about the complications (temporary and permenant) that I may have experienced from an unnecessary surgery.

    Only an opinion here, but I don't think surgery is going to solve your problem...and it may make things worse.

    Bethsheba

    Last edited by bethsheba; 11-10-2008 at 02:00 PM.

     
    Old 11-10-2008, 02:05 PM   #3
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    Re: PLEASE - Qs about surgery to correct Chiari

    Hi,

    Thanks for replying! The MRI Cervical Spine with and without contrast shows Chiari Malformation and syringomyelia. That is what is on the MRI report. I viewed the scans today with the surgeon. I'm confused as to why I should be questioning the dx? Looks clear to me in the scans.

    Just wanted to add that the neurosurgeon is one of the best in the country. If you were misdiadnosed with Chairi, what made them think you had it? What did you end up having? I beleive I have been tested within the past year for Lymes, Lupus and MS.

    Thanks again!

    Last edited by clueless42; 11-10-2008 at 02:09 PM.

     
    Old 11-10-2008, 02:16 PM   #4
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    Re: PLEASE - Qs about surgery to correct Chiari

    What has caused the malformation?? Is it possible that it could be caused by an infection? If the damage is caused by an infection and the infection hasn't been eradicated, then I would assume that the damage will continue and your condition will get worse. Surgery may only be a temporary fix....and yes, maybe it needs to be fixed...but if you don't get to the cause you still have problems.

    Keep in mind that surgeons are very good with their hands and with microscopic details....but they don't necessarily make good diagnosticians because they're not looking at the big picture.

    Many of the posters on this board are doing the same...it's like doing a book review after reading only one page of the book...not a good idea, at least if you want an accurate picture of what is going on. Not the opinion of an expert, but is my opinion.

    Bethsheba

    A brief review of your symptoms, at least in my mind, suggests looking further.

    Last edited by bethsheba; 11-11-2008 at 04:28 AM. Reason: typos, typos

     
    Old 11-10-2008, 02:36 PM   #5
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    Re: PLEASE - Qs about surgery to correct Chiari

    The surgeon said that the malformation happens at birth, they do not know why. I have done some research and have not seen any mention any where, including The Chiari Institue, that a Chiari malformation can be caused by a virus. All sites state that this happens at birth but is usually never detected until adulthood due to symptoms, if detected at all.

    What did you say you have?

    Last edited by clueless42; 11-10-2008 at 02:37 PM.

     
    Old 11-10-2008, 03:08 PM   #6
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    Re: PLEASE - Qs about surgery to correct Chiari

    Peggy,

    If that's all you've found, you need to keep reading. I have read sites that say infection is also a cause!

    What do I have? Well let me tell you what just a few of my symptoms were...(it would be impossible to recall them all...at one time there were over 47 and I remember this because I went down the Fibromyalgia list to see if I could possibly have fibro ). It is important to note that prior to the rapid deterioration in my health (over a period of weeks/months), I was perfectly healthy, did serious bicycling, hiking, gardening, and other outdoor activities, and although not athletic, did basically everything I wanted to do.

    Over the course of three years I experienced the following problems...

    slept 18-20 hours per day, was too tired to dry off after a shower and had to go to bed in the am (after waking) for 1 1/2 hours before drying off and dressing

    too tired to make meals...lived on bread and butter sandwiches and milk for about a year, at least from what I can remember

    restless legs that would be so active at night that I would wake up with hip pain so severe that I could not get back to sleep. The hip pain was non existant during the day hours.

    back pain so severe the doctor considered a spinal tumor...I would have to take the phone to bed because I was terrified I would be paralyzed in the am, and unable to call anyone for help. 6 weeks of physical therapy and pain killers did nothing.

    shoulder pain, diagnosed as bursitis...was told not to lift so much as a carton of milk. 4 weeks of therapy and pain killers did nothing.

    memory problems...despite getting A's through out graduate school (which included classes in statistics, ughhh), I was fired from a temporary job because I lacked the concentration to properly address 25 envelopes.

    memory problems...forgot doctors appointments (which I still had to pay for), hair appts (lost a few good hairdressers as a result), and got lost going to the post office which was only 1/2 mile away...oh, and it's been there for over 10 years so it wasn't a new location!!

    Muscle and joint problems...when I went to visit a friend, who is a nurse, she gasped and asked me what was wrong...I told her "arthritis" because I had such difficulty moving (getting in and out of the car).

    Problems with veritgo, balance, and consciousnesss (fainting going up a ladder)...fell 4 times in my home in 1 month...I landed on my face on the last fall, my eyeglasses were crushed and narrowly missed poking out my eye...ended up in er on Christmas Eve Day for a neurological exam and an eye exam.

    visual changes...went through 3 prescription eyeglasses in less than 3 years at a cost of over $1000 only to have glasses that were worthless.

    three full weeks of nausea and vomiting

    periods when I was so sleepy that I literally could not do a thing, including sleep!!!

    Suicidal tendencies, despite having a supportive, loving network of friends (who happened to work in the health care field).

    Aside from the "bursitis", after three plus years, my specialists found nothing...but I did...guess what I "had".

    Bethsheba

    PS Despite my doctors denials, I was experiencing side effects of my blood pressure medication. My symptoms disappeared within 24 hours to 6 weeks after discontinuing the offending medication. Some side effects (shoulder and back pain) were clearly listed as side effects on the package insert. Other side effects (vision changes) were "buried" in the scientific literature on the web. The prescription that started the downward spiral cost $10.80 per month, is commonly prescribed for hypertension, and has been around for years!

    Last edited by bethsheba; 11-11-2008 at 06:14 AM. Reason: added a different PS

     
    Old 11-11-2008, 06:16 AM   #7
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    Re: PLEASE - Qs about surgery to correct Chiari

    Peggy,

    It's been about 18 months now that I have been symptom free.

    Bethsheba

     
    Old 11-11-2008, 08:41 AM   #8
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    Re: PLEASE - Qs about surgery to correct Chiari

    hi im a little confused on how a doctor can diagnose chiari if you dont have it!! i dont know too much about it but if it shows on a scan i dont understand how they can be wrong? interesting about a virus causing it as havent heard that either i believed you are born with it or a trauma to the head can start /progress symptoms. x

     
    Old 11-11-2008, 09:30 AM   #9
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    Re: PLEASE - Qs about surgery to correct Chiari

    Jellebeans,

    There are a number of concerns that need to be addressed here...some that come immediately to mind are:

    1. Is Chiari an accurate diagnosis? If so, what is the information based upon? What can skew (falsify) the results? How many opinions have been considered before making the diagnosis? What are the people offering those opinions saying? Based on what information? What other conditons could be similar in diagnosis? Have specialists in those fields been consulted? If so, what were there opinions? What does the scientific literature (university and government info) say??

    2. If Chiari is the diagnosis, what has caused it? Is it possible that it has been caused by a bacterial infection since it is known that some bacterial infections can eat away at nerves, cartilege, bone, and muscle? If it indeed is caused by a bacterial infection, the chiari may be actually a secondary diagnosis, and unless the infection is treated, the nerves, cartilege, bones, and muscle will continue to be damaged...does this mean more surgery??

    Jelle, it would be great if tests were always accurate, if doctors and others who read the tests interpreted them in the same way, if all doctors and health care workers were honest and ethical and drug free, and our results came back in black and white...but that is not life!!

    Too many people are disabled for life, or die, because someone goofed...or misinterpreted a test....or blindly trusted their health care provider.

    Bethsheba

    Last edited by bethsheba; 11-11-2008 at 09:35 AM.

     
    Old 11-11-2008, 01:08 PM   #10
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    Re: PLEASE - Qs about surgery to correct Chiari

    Hi Bethsheba -

    I understand that you feel I should be cautous and I have explained, but will explain again the diagnosis -
    1. An MRI was performed due to the following symptoms - headaches, severe head & neck pain when sneezing, coughing or any type of straining, pain, numbness and tingling in arms and hands, loss of strenght in upper body (difficulty opening things), numbness in back of head. I have had ALL of these sypmtoms on and off for about 10 years. The past 2 months thay have been consistent. The MRI reported a large syrinx in the cervical spine under C2,C3 & C4 vertabrae. A contrast MRI was ordered to see if what was causing syrinx.
    2. Contrast MRI reported Chiari malformation and syringomyelia
    3. DX of Chiari malformation and syringomyelia confirmed by neurosurgeon who has suggested surgery.

    I have an appointment with another neurosurgeon tomorrow, the Chiari specialist, at Columbia-Presbyterian.

    Chiari malformations are caused during fetel developement. IF a VIRUS was involved, it was a virus that was acquired during fetal developement NOT during a persons life. From my understanding, and also what the neurosurgeon told me, at this time Drs do NOT know why a Chiari form.

    PLEASE be CLEAR as to WHY the MRI maybe WRONG?? I can SEE the CHIARI and SYRINX myself, they are perfectly clear.


    Clueless

     
    Old 11-11-2008, 02:00 PM   #11
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    Re: PLEASE - Qs about surgery to correct Chiari

    Hello Peggy,

    I am not a doctor, nor am I a health care professional...I can't read or interpret your tests...(but for that matter, I'm assuming, neither can you). I'm only suggesting that you question everything you are told and take nothing for granted!! And try to learn as much as possible about your condition.

    It is reassuring to know that you'll be seeing another neuro. tomorrow. A second opinion never hurts...although sometimes it can add to the confusion, .

    The information you shared in point number one was helpful to me in understanding your condition...and based on what you are saying there the diagnosis makes sense! If I sound concerned it is because many people will take their car to a second mechanic if they are unsure of the "diagnosis" and are questioning the costs....but for some reason we don't think of doing something similar when it comes to our own bodies.

    You need to do what is right for you...you know your body...and providing you've done your homework, you need to trust your instints...because you have the most vested in the process and in the outcome.

    I think you'll do well, whatever your decision, simply because you're asking good questions and putting it on the line!

    Take care, Peggy!

    Bethsheba

     
    Old 11-11-2008, 03:29 PM   #12
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    Re: PLEASE - Qs about surgery to correct Chiari

    hi Peggy!

    Nice to meet you!Welcome to our Chiari group.

    I think you're doing great as far as accepting your Chiari DX and going for a second opinion.Good for you!!!!

    With all your symptoms I'm sure getting relief is your main concern and to have surgery seems the route to take.It is a scary thing to have decompression surgery,but many people have excellent results from it,but it takes time after the surgery to heal and start feeling better.Having an experienced neurosurgeon that you trust is the most important when considering the surgery.

    How big is your herniation?I have a 6mm herniation,but no syrinx(at least not yet!).Did you have the CSF flow study also?If you did was the CSF blocked?Just wondering.

    I wish you well~take care~Scout

     
    Old 11-12-2008, 11:42 PM   #13
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    Re: PLEASE - Qs about surgery to correct Chiari

    Hi Clueless~

    Welcome to our boards. As Scout stated, you sound like you are dealing with this diagnoses so well. I was Diagnosed in April of this year with chiari as well.

    Surgery is a personal choice with chiari but with a large syrinx involved, surgery may be the route you will need to go. The syrinx is caused from a blockage in the CFS flow so unless that is corrected, it could get larger.

    My only advice is to do your homework on the Dr you choose. Many neurosurgeons do the decompression surgery but only do a handful a year. I know you mentioned the chiri institute, They do several hundred a year. You want a surgeon to do it right the 1st time. Many people end up at TCI for "fixes" from botched surgeries.

    I haven't been decompressed yet but I have had my 1st of 3 surgeries needed. I had tethered cord surgery done and it did improve my lower extremity issues. I will be needing fusion and decompression but Its a slow process and not something I am jumping into with out doing my homework 1st. I do go to TCI and feel I'm in great hands.

    I also wanted to comment on chiari being caused by infection. no disrespect to you Bethsheba but chiari is a congenial disorder, caused from our skulls being malformed while we are forming in the womb. You can also get aquired chiari from head trauma. This can not be caused from an infection to the brain. Our skulls are too small and our brains are spilling out the hole in the base of the skull. Maybe what you've read was Budd Chiari? That is something totally differant than Arnold Chiari.

    Chiari is visible to the eye as well as a syrinx. On the MRI, you can see where a normal brain sits up high, vs a chiari brain thats descended. A syrinx is also visible on the MRI. So a diagnosis of chiari isn't something to be questioned. In my opinion, if your lucky enough to find a Dr who WILL dx you with chiari, you've climbed a great hurtle. Most dr's are in denial.

    A second opinion and great research is need dealing with this illness. Having surgery done is a personal choice and if it is greatly affecting the quality of ones life, it is a necessity.

    Some come through surgery great with no lingering symptoms while others don't. It really depends too on how long the nerves have been compressed and is there permanent damage and also, there are several related disorders with chiari that can complicate things. There is no "cure" for chiari but surgery can be an intervention to the progression and hopefully, it will give you back the quality of life you deserve.

    Keep us posted on your progress and I wish you much luck on your journey!!

    cindy

     
    Old 11-13-2008, 09:19 AM   #14
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    Re: PLEASE - Qs about surgery to correct Chiari

    Hi,

    Thanks for responding! I saw a Chairi specialist from Columbia (NYC) yesterday. He completed agreed with the 1st surgeons DX. I had a brain MRI and thoacic MRI performed and the lumbar will be done this evening. The 2nd NSR knows the 1st NSR personally and perfessionally and he highly recommended him, he said there was no pint in going to Columbia forthe surgey. When the results of the other MRIs are reviewed I will be called set up another appointment.

    I don't know how big the herniation is but the srynx is LARGE - something like 4.3 x 0.8 x 1.2 cm, I think their concerned more about that right now. The decompression surgery will allow the syrinx to go away on its own.

    I feel VERY relieved after seeing the 2nd NSR. He told me that 90% of people that have the decompression surgery are relieved of their symptoms. I'm not sure why the Chiari insititute performs so many other procedures, but I decided I'll go with NSR 1 and the decompression, unless the other MRIs show somthing different. If I'm still having difficulties after that I can see what my options are.

    Thank you soooo much Scout316 and Cindys601 for your support!!!! The past 10 days have been a whirlwind of information and anxiety!
    I am so grateful to be able to communicate with others with the same issues. However, at the same time, I wish I didn't have too and that there weren't so many people like me!

    I'll keep you posted as well as check and see how everyone else is doing!

     
    Old 11-13-2008, 09:31 AM   #15
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    Re: PLEASE - Qs about surgery to correct Chiari

    Hi Clueless~

    I am really glad that you are in good hands as far as care. And treating the srynx at this point is your number one goal. They can cause permanant damage to the spinal cord if left untreated so I am so happy for you that it was found quickly and your course of treatment is moving along quickly as well.

    It is a scary thing and alot to obsorb in a short time. But its always nice to have the support of others going through similiar things. When we explain this to others in our lives, they don't understand it and can't offer the support you need. But I do hope you have someone who will be there for you during your recovery of the decompression. You'll need that.

    Please keep us posted with your progress and lots of good luck and health to you

    Take care

    cindy

     
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