I really don't know what to do, I was diagnosed in January after a couple of years of "weird" symptoms no one could put together. I have been going to a Rheumatoid Arthritis specialist, therapist and pain management clinic without any luck. Finally my main doctor decided to send me to a neurologist after having a lot of episodes that to her read like stroke symptoms and chronic headaches and pains that she couldn't figure out. From there I got 2 seperate mri done and an xray and emg. He sent me to a neurosurgeon when he found the chiari and ruled out the possibilities of a pinched nerve or migraine problems! So I see this neurosurgeon and she says yes I have chiari but she can't do surgery because as little as it is there is still a little bit of fluid getting through the sides which is good. I asked what the next step was to make me feel better and able to function normally and she said there was nothing to do. So what now? Just deal with the pain in my neck, the pain and pressure in my head, the numbing up of mey left side and face, the dizziness, loss of consentration, confusion, sensitivity to light etc.? What do I do? Ps. I live in Wisconsin and Dr. Heffez was not an option since he doesn't take my insurance. Sorry this was so long, I'm just lost and looking for answers to live better for my 3 kids.
Mandy has given you so much great info that I don't have a lot to add.
Did you have a CINE MRI to measure CSF flow? If not I would try to get one. I would definitely seek a second opinion with a NS who has a lot of experinece with Chiari on surgery if the measures above are not helpful. I did not have 100% blocked flow yet surgery helped me tremendously.
I know how disheartening it is to hear this, I just had surgery for mine 4 weeks ago, I got a different answer every time I talked to someone whether it was 8mm 11mm or 13mm either way, I felt like he spent all of about 10 min with me and this is after I had spent my thanks giving of 2012 in the ICU, they thought I also might have had a pseudo tumor which I didn't have, but I had some pretty severe symptoms which dissipated enough to not be in the ICU. I eventually went home but I was visiting the ER sometimes twice a month for SEVERE pain nausea and vomiting and at times I had already been trying to push through for 24 hrs of vomiting every 3-5 minutes before going in. I saw my neurologist and we have been through the gambit of treatments, and all at once, sumatriptan and ibuprofen combo, fioracet, Topamax, botox, etc. and that helped with my daily and chronic headaches, but didn't help with positional, strain, or exercise induced pain/headaches along with nausea and sometimes violent vomiting, sometimes vision and balance issues, sleep, mood etc. One thing I don't get is that I was only diagnosed shortly before the ICU visit I think September of 2012, but around September 2011 I had an MRI due to these weird jerks I was having but not clear what it was and turned out I had epilepsy and it shows I was prone and on that MRI you can clearly see the chiari, so I wonder why it was not noted at that time. I have had symptoms of chiari all my life but they can be so vague and part of so many things that it is hard to put that together to come to the conclusion of chiari. I am a bit scatter brained right now, but what I am getting at and didn't understand with this doctor blowing me off is not that he was really blowing me off is that although we want relief and want it now and sometimes you just want to be put out of your misery is that they want to eliminate all other possible causes or possible treatment options and leave surgery as a last resort. Surgery can be so iffy, it can be very risky, it also has the possibility to make things better but it can also either not help or make them worse and those are also other possibilities, there are also sometimes things that can happen in surgery and you can be left with a worse problem caused by the surgery than what you are having surgery for. When you are in pain you feel like anything is worth the risk, but you may never know until afterward, try to hang in there.... it doesn't mean this wont ever be an option and that this surgeon is the only one who has an opinion or that their opinion is the final answer on your condition. Keep talking to people and keep seeking help always seek other opinions, and always ask for further explanation, and say I don't understand, where do I go from here, and don't be afraid to express how you are emotionally feeling about it either, how devastating it is to you, sometimes they need to hear that too, and it is ok.
Thank you very much for responding so soon and I'm sorry I didn't answer sooner, besides chiari I have a number of other things wrong with me including multiple damaged disks in my lower back that have been causing me hell since my last MRI. SoI'm going to try and answer some things you asked me and tell you a little more of the process I went through. I actually do take vitamin d supplements because I have a vitamin D deficiency but I don't take any other vitamin because I have had a lot of blood work done and my levels in that are fine. I do take thyroid meds because in looking for answers they found I have hoshimotos disease, hypothyroidism. I am also always very tired and fatigued, the pain gets worse at night so even my pain meds and muscle relaxer can't help me sleep well. I had a couple of sleep studies done but they said I do not have sleep apnea, although they did see that my sleep is very interrupted. I do not have RA but because of my joint pain, swelling of hands and feet, fatigue and such my primary wanted me to see them. What my RA specialist did find is very abnormal ANA levels and high inflammatory markers that we still don't have an idea where its coming from. So because of those and my symptoms (plus family history) she thinks I'm eventually going to develop an autoimmune disease like RA or lupus. What the Neurologists found besides my chiari is a loss of curvature in my cervical spine, a little bit of a narrow spinal cord and a little bit of a bulge on c4 I believe but not enough to be a problem! I just am really tired! I'm by no means giving up it's just for me, like probably a lot of you all, it has been one thing after another when it comes to my health. I was a single mom of 3 until recently but now I feel guilty because since the beginning my boyfriend has been taking care of me and my 3 kids. He's been awesome but he can't keep missing work to care for me on my bad days, which are getting more often. I am 28 and for the past couple of years my best friends hasve been my bed and my cane!
Mandy said:
Hi Glenda,
I'm sorry, many of us go to a lot of doctors before being diagnosed, and then even after we have a diagnosis, we have a hard time finding a doctor that can help. There are others here who are better with the insurance appeals than I am, so no advice there unfortunately, but there are other things you can do. First, many Chiari patients find they will have to travel to see a specialist. I see you've seen the doctor's list, you can check out their websites or call their offices to see if they take your insurance. Dr. Frim in Chicago is excellent, as is Dr. Henderson in Maryland. Dr. Rosner in NC also has excellent reviews, but he's a bit further away from you. Dr. Menezes in Iowa and Dr. Henderson both deal with cervical instability, which is not uncommon with Chiari. Cervical instability is when your skull moves too much on your neck, normally it's held in place by tendons and ligaments, but these can be stretched out in Chiari patients. I would recommend against seeing the local neurosurgeon at your hospital, as they usually don't do very many of these Chiari surgeries (posterior fossa decompressions) a year. There can be complications, and surgery has a 60% success rate within the first two years. So seeing a specialist will be worth your time and money.
Next, there are a variety of things you can do to try and avoid surgery, or at least make your wait less painful. Arnica gel or cream is great for neck pain, as is magnesium gel. As you are in Wisconsin, you might be deficient in Vitamin D, unless you're supplementing. Getting blood work done to assess your current vitamin and mineral levels is a great start. Personally, my pain diminished significantly after supplementing with Vitamin D3, Vitamin K2, Vitamin A-Retinol, magnesium, and Vitamin C. I'm now looking into ways to lessen the fatigue I have most of the time. Another thing is getting a sleep study if you haven't already done so. I believe the number is around 75% of Chiari patients also have sleep apnea. And, if you're not sleeping, you're not healing from the day's wear and tear.
Also, seeing an therapeutic optometrist might indicate if you have high cerebrospinal fluid pressure (CSF) inside your skull. This has several different terms, but the most common are pseudotumor cerebri, idiopathic intracranial hypertension, normal pressure hydrocephalus, to name a few. If you do have high pressure inside your skull, there is a drug called Diamox which has a great success rate for lowering pressure. High pressure has been known to cause a variety of problems, including dizziness, confusion, sensitivity to light and sound, gait problems, and headaches.
Have you been diagnosed with RA? It's not uncommon for RA patients to have a pannus, or retroflexed odontoid. This would have been noted in your MRI report if it was obvious enough, although radiologists can be hit and miss with these things. A pannus is like a callus on the very top bone of the spine, sitting next to the spinal cord. It usually means there is instability. Retroflexed odontoid is that same top bone of the spine, but it's pointing backwards and poking into the spinal cord. Both cause a wide variety of issues. If you have either of these things, I would highly suggest seeing a specialist who deals with the instability.
Another thing you could try, if you do have cervical instability, is wearing a cervical collar. I don't know much about the soft collars, but we had our daughter wear a hard collar (Aspen Vista), and she said when she was wearing it her headache went away. When she took it off her headache returned.
I'm not a medical professional, just a stay at home mom of 2 who was diagnosed last year. I'm putting off surgery at this point. Best wishes to you and your family :)
Mandy
Thank you for your reply I really appreciate it. I had an MRI recently but it did not measure the flow it just checked if there was some getting through or if it was completely blocked and since it wasn't completely blocked they said there is nothing to do about it! I will take your advice and ask about it though. I am not saying I want the surgery but if that's what will make me feel better I would say yes in a heartbeat. I just wanted something but was told there's nothing to do unless i get worse, didn't even offer advice as to controlling my symptoms or pain!
Anglyn said:
Mandy has given you so much great info that I don't have a lot to add.
Did you have a CINE MRI to measure CSF flow? If not I would try to get one. I would definitely seek a second opinion with a NS who has a lot of experinece with Chiari on surgery if the measures above are not helpful. I did not have 100% blocked flow yet surgery helped me tremendously.
Thank you for your response, it's nice to hear that there are other people who understand what I'm going through even though I wish it wasn't because your going through it too. It sucks honestly, I also had a head MRI where they were checking if I had a stroke (which I didn't) but for some reason they missed the chiari! I don't understand why they didn't see it because when I saw the neurologist for the first time and he went back in the hospital records he said it was really clear on the MRI that I had chiari. I did take your advice as I did from others here and looked up more neurosurgeons. I know all the risks in the surgery and I would never want to get it if it wasn't absolutely necessary or atleast had a great chance of making me feel better. I just need some sort of guide as to what to do to feel better ifsurgery is not an option and the surgeons responce was you don't need surgery there for I cannot help you, there is nothing to be done to help you feel better unless you get worse! That's what my problem was, I can't understand how there are no existing treatment or medication to make the pain and symptoms at least manageable!
Robinlm said:
I know how disheartening it is to hear this, I just had surgery for mine 4 weeks ago, I got a different answer every time I talked to someone whether it was 8mm 11mm or 13mm either way, I felt like he spent all of about 10 min with me and this is after I had spent my thanks giving of 2012 in the ICU, they thought I also might have had a pseudo tumor which I didn't have, but I had some pretty severe symptoms which dissipated enough to not be in the ICU. I eventually went home but I was visiting the ER sometimes twice a month for SEVERE pain nausea and vomiting and at times I had already been trying to push through for 24 hrs of vomiting every 3-5 minutes before going in. I saw my neurologist and we have been through the gambit of treatments, and all at once, sumatriptan and ibuprofen combo, fioracet, Topamax, botox, etc. and that helped with my daily and chronic headaches, but didn't help with positional, strain, or exercise induced pain/headaches along with nausea and sometimes violent vomiting, sometimes vision and balance issues, sleep, mood etc. One thing I don't get is that I was only diagnosed shortly before the ICU visit I think September of 2012, but around September 2011 I had an MRI due to these weird jerks I was having but not clear what it was and turned out I had epilepsy and it shows I was prone and on that MRI you can clearly see the chiari, so I wonder why it was not noted at that time. I have had symptoms of chiari all my life but they can be so vague and part of so many things that it is hard to put that together to come to the conclusion of chiari. I am a bit scatter brained right now, but what I am getting at and didn't understand with this doctor blowing me off is not that he was really blowing me off is that although we want relief and want it now and sometimes you just want to be put out of your misery is that they want to eliminate all other possible causes or possible treatment options and leave surgery as a last resort. Surgery can be so iffy, it can be very risky, it also has the possibility to make things better but it can also either not help or make them worse and those are also other possibilities, there are also sometimes things that can happen in surgery and you can be left with a worse problem caused by the surgery than what you are having surgery for. When you are in pain you feel like anything is worth the risk, but you may never know until afterward, try to hang in there.... it doesn't mean this wont ever be an option and that this surgeon is the only one who has an opinion or that their opinion is the final answer on your condition. Keep talking to people and keep seeking help always seek other opinions, and always ask for further explanation, and say I don't understand, where do I go from here, and don't be afraid to express how you are emotionally feeling about it either, how devastating it is to you, sometimes they need to hear that too, and it is ok.
Glenda, you have been given some great advice. Ruling out cranio cervical instability is very important- if you have it, it should be fixed at the same time you have your decompression done (if you decide surgery is the way for you). That's great you are taking D, try adding a chelated magnesium supplement, mag has helped my pain levels. Arnica gel! Magnesium oil! And I also think the cervical collar might be a great thing to try- especially sleeping in it. Of course talking to a doctor about all of these suggestions is best. You can get a soft collar at a drug store- or if you have a particularly long neck you can order a collar online that is taller (I had to get 4" collar instead of the standard 3" size).
I know the insurance issues can be daunting. Keep at it, though. Have you talked to Heffez's office about attempting to negotiate with your insurance? Frim also has a wonderful reputation, I have heard that his office has made attempts in the past to see patients by negotiating insurance problems.
It can be hard not to get discouraged with feeling so awful and then hitting "dead ends" while looking for treatment. Just know that this is a process for most of us- no overnight solutions. Try to pace yourself and keep stress as low as possible in the interim, stress makes symptoms so much worse.
If you have any friends or family to call on for help, now us the time. You may need to travel to get to a reputable Chiari surgeon.
Sending positive thoughts and love,
Jenn
Thank you for your advice, I will do so and hopefully everything will work out fine. I had a scare today actually in which I felt confused and dizzy when all of a sudden I felt fait and started falling. I couldn't even react to help myself but my bf was behind me and was able to catch me! I have called Dr. Heffez and they don't want to take my insurance but Dr. Frim's office is currently trying to negotiate with my insurance so they will cover my going to him! I also left Dr. Heffez a message pleading they do the same just in case Chicago doesn't work out. The only family member that will be able to come out and help is my mom but I'm waiting to see if I need surgery before I get her here since she's only willing to be here for about a month!
jcdemar said:
Glenda, you have been given some great advice. Ruling out cranio cervical instability is very important- if you have it, it should be fixed at the same time you have your decompression done (if you decide surgery is the way for you). That's great you are taking D, try adding a chelated magnesium supplement, mag has helped my pain levels. Arnica gel! Magnesium oil! And I also think the cervical collar might be a great thing to try- especially sleeping in it. Of course talking to a doctor about all of these suggestions is best. You can get a soft collar at a drug store- or if you have a particularly long neck you can order a collar online that is taller (I had to get 4" collar instead of the standard 3" size).
I know the insurance issues can be daunting. Keep at it, though. Have you talked to Heffez's office about attempting to negotiate with your insurance? Frim also has a wonderful reputation, I have heard that his office has made attempts in the past to see patients by negotiating insurance problems.
It can be hard not to get discouraged with feeling so awful and then hitting "dead ends" while looking for treatment. Just know that this is a process for most of us- no overnight solutions. Try to pace yourself and keep stress as low as possible in the interim, stress makes symptoms so much worse.
If you have any friends or family to call on for help, now us the time. You may need to travel to get to a reputable Chiari surgeon.
Sending positive thoughts and love,
Jenn