Aa
In purgatory
I will apologize in advance, but this post may qualify as a novel. It's LONG!
I am newly diagnosed with Chiari via MRI. I have been suffering with the headaches, shoulder pain and spasms for years but had always been told nothing was wrong with me so had just accepted it as part of life. In 2009, I started having issues with my lumbar spine which lead to microdiscectomy L5/S1 (10/11). Since surgery, I continued to have issues with severe chronic pain in my lumbar area despite endless PT, aqua therapy, dry needling, acupuncture, and multiple injections in various parts of my back. Then out of the blue I started getting severe pain in my thoracic spine. MRI showed two TINY discs, but neuro said "everyone has those" and they were not the cause of my pain. Translation= you are crazy lady, there is nothing wrong with that part of your back and you are probably just trying to get more pain meds. Defeated, I continued PT even though it wasn't doing anything as far as I could tell and continued to let the "pain" doctors randomly inject various parts of my spine hoping one day they would find the right spot. I felt like I had to keep jumping thought their hoops in order to get the pain meds etc, but even those were starting to not help much.
About two months ago, all hell breaks loose. My vision goes psychotic with blurred vision, ghost images, halos, EXTREME sensitivity to light, my fingers and feet start randomly going pins and needles, but not like it was with my back, I now have joint pain everywhere (some more severe than others), bouts of dizziness, especially if I close my eyes or at night (the room feels like its spinning), I start having memory issues and feeling like I can't concentrate. I feel like I'm going crazy.
I went to see my general doctor who said the tingling was likely a medication reaction to Topomax or maybe Carpal Tunnel. I told her it was neither. She recommended we just watch it and see what happens. Not good enough for me. I had been suffering too long. I scheduled an appointment with a neurologist.
I went to see eye doctor who found that all of a sudden I needed progressive lenses with multiple levels of correction. I have never worn glasses in my life! They order the glasses but when they come in, they don't work. They re did my exam and find my prescription had completely changed. This happened twice more before I told them this was stupid, there has to be something else going on ( you would think they would have figured that one out). Anyway, they did a visual field test and found that I had some deficit in my left temporal region and recommended a neurologist.
Luckily, I had not listened to my general doctor and already had an appt with a neurologist. By now I was convinced I had MS or something similar. The neurologist ordered nerve conduction study on arms, of course it was normal. She also ordered a brain MRI. I got the call calling me in to discuss the results. Being a nurse myself, I knew they weren't calling me in to tell me it was normal. Again, I was concvined I had MS or something. Low and behold, they tell me I don't have MS, but instead have Chiari Malformation Type I. Wow, OK, a diagnosis! This is a start! The Neurologist had her Nurse Practitioner delivering the news and she was completely clueless. She was looking things up on her laptop as I asked questions and clearly was looking in the wrong places.. I had minimal knowledge, but clearly was convinced I had other things so had not studied up but still felt I knew more than she did. I asked her if she thought this was causing my symptoms and she was not sure. I specifically asked about my vision, which is really starting to scare me, she calls the Neurologist on the phone ansd is told it is not likely the cause of my vision problems. Yet everything I read says it could be. Hmmm. Back to square one.
Bottom line is, I'm kind of in a holding pattern because I am waiting to get the rest of the pieces to my Chiari puzzle so I can consult with a NS. I have the cervical MRI scheduled next week and an trying to get them to order the CINE so I can get that done while I'm waiting for my NS appt which is not until April. In the mean time, I feel like my symptoms are getting worse every day. I don't really know if they are from the Chiari or something else. I play on scheduling an appt with a rheumatologist to see if perhaps there are other disorders that may be contributing to all of this (especially the joint pain). I don't know if I need to be concerned about the rate my symptoms seem to be progressing. I'm worried about my vision. I read things about how sometimes damage from chiari can't be reversed even with the surgery, that the surgery only puts a bandaid to prevent further damage. I clearly feel very anxious about sitting back for a month or two while all the tests get done and apps get scheduled while my pain (that no one thinks I have or cares to find a way to treatroperly) gets worse and my vision may be getting irreparably damaged.
I feel like I want answers yesterday and need to be doing something NOW to keep from feeling so awful and to keep from suffering damage, but alas, I sit in purgatory, waiting to learn of my fate.
1) Any idea why symptoms are spinning out of control? No trauma or even big sneeze that I know of.
2) do my symptoms sound chiari related or only if there is CSF issue or syrinx?
3) is it possible that something is going on anatomically that is causing symptoms to get worse daily? At this rate, I honestly don't know if I can remain sane until the tests are done and my appt in April. Some days I literally feel like my brain must be about to explode!
4) is there ever an "emergency" seek medical attention NOW moment related to chiari?
5) Would my back issue or surgery have been caused by or contributed to chiari? From what I have read, I DO NOT have EDS but guess it has not been completely ruled out.
6) what can u do for pain? I'm already on narcotics for back. They aren't working great. On muscle relaxers and have been on the gabapentin, lyrica, cymbals, you name it, no luck. I don't remember what life was like without pain. The pain doctors seem to think everyone is imagining their pain or just wants meds. Oh how I wish there was a pain-o-meter or better yet, the ability to let each doctor live even an hour in my shoes. Maybe then they all could understand my symptoms a bit better.
I will be honest, I am already exhausted from living with chronic pain and jumping through hoops with no positive outcome re: my back for years. The concept of having a possible diagnosis for these other things is great, but the thought of basically having to start a long journey all over, is almost too much to bear.
Sorry if i sound frustrated and crazy. at this point, i probably am lol
Thanks for listening to my rant and for any help you can offer.
I am newly diagnosed with Chiari via MRI. I have been suffering with the headaches, shoulder pain and spasms for years but had always been told nothing was wrong with me so had just accepted it as part of life. In 2009, I started having issues with my lumbar spine which lead to microdiscectomy L5/S1 (10/11). Since surgery, I continued to have issues with severe chronic pain in my lumbar area despite endless PT, aqua therapy, dry needling, acupuncture, and multiple injections in various parts of my back. Then out of the blue I started getting severe pain in my thoracic spine. MRI showed two TINY discs, but neuro said "everyone has those" and they were not the cause of my pain. Translation= you are crazy lady, there is nothing wrong with that part of your back and you are probably just trying to get more pain meds. Defeated, I continued PT even though it wasn't doing anything as far as I could tell and continued to let the "pain" doctors randomly inject various parts of my spine hoping one day they would find the right spot. I felt like I had to keep jumping thought their hoops in order to get the pain meds etc, but even those were starting to not help much.
About two months ago, all hell breaks loose. My vision goes psychotic with blurred vision, ghost images, halos, EXTREME sensitivity to light, my fingers and feet start randomly going pins and needles, but not like it was with my back, I now have joint pain everywhere (some more severe than others), bouts of dizziness, especially if I close my eyes or at night (the room feels like its spinning), I start having memory issues and feeling like I can't concentrate. I feel like I'm going crazy.
I went to see my general doctor who said the tingling was likely a medication reaction to Topomax or maybe Carpal Tunnel. I told her it was neither. She recommended we just watch it and see what happens. Not good enough for me. I had been suffering too long. I scheduled an appointment with a neurologist.
I went to see eye doctor who found that all of a sudden I needed progressive lenses with multiple levels of correction. I have never worn glasses in my life! They order the glasses but when they come in, they don't work. They re did my exam and find my prescription had completely changed. This happened twice more before I told them this was stupid, there has to be something else going on ( you would think they would have figured that one out). Anyway, they did a visual field test and found that I had some deficit in my left temporal region and recommended a neurologist.
Luckily, I had not listened to my general doctor and already had an appt with a neurologist. By now I was convinced I had MS or something similar. The neurologist ordered nerve conduction study on arms, of course it was normal. She also ordered a brain MRI. I got the call calling me in to discuss the results. Being a nurse myself, I knew they weren't calling me in to tell me it was normal. Again, I was concvined I had MS or something. Low and behold, they tell me I don't have MS, but instead have Chiari Malformation Type I. Wow, OK, a diagnosis! This is a start! The Neurologist had her Nurse Practitioner delivering the news and she was completely clueless. She was looking things up on her laptop as I asked questions and clearly was looking in the wrong places.. I had minimal knowledge, but clearly was convinced I had other things so had not studied up but still felt I knew more than she did. I asked her if she thought this was causing my symptoms and she was not sure. I specifically asked about my vision, which is really starting to scare me, she calls the Neurologist on the phone ansd is told it is not likely the cause of my vision problems. Yet everything I read says it could be. Hmmm. Back to square one.
Bottom line is, I'm kind of in a holding pattern because I am waiting to get the rest of the pieces to my Chiari puzzle so I can consult with a NS. I have the cervical MRI scheduled next week and an trying to get them to order the CINE so I can get that done while I'm waiting for my NS appt which is not until April. In the mean time, I feel like my symptoms are getting worse every day. I don't really know if they are from the Chiari or something else. I play on scheduling an appt with a rheumatologist to see if perhaps there are other disorders that may be contributing to all of this (especially the joint pain). I don't know if I need to be concerned about the rate my symptoms seem to be progressing. I'm worried about my vision. I read things about how sometimes damage from chiari can't be reversed even with the surgery, that the surgery only puts a bandaid to prevent further damage. I clearly feel very anxious about sitting back for a month or two while all the tests get done and apps get scheduled while my pain (that no one thinks I have or cares to find a way to treatroperly) gets worse and my vision may be getting irreparably damaged.
I feel like I want answers yesterday and need to be doing something NOW to keep from feeling so awful and to keep from suffering damage, but alas, I sit in purgatory, waiting to learn of my fate.
1) Any idea why symptoms are spinning out of control? No trauma or even big sneeze that I know of.
2) do my symptoms sound chiari related or only if there is CSF issue or syrinx?
3) is it possible that something is going on anatomically that is causing symptoms to get worse daily? At this rate, I honestly don't know if I can remain sane until the tests are done and my appt in April. Some days I literally feel like my brain must be about to explode!
4) is there ever an "emergency" seek medical attention NOW moment related to chiari?
5) Would my back issue or surgery have been caused by or contributed to chiari? From what I have read, I DO NOT have EDS but guess it has not been completely ruled out.
6) what can u do for pain? I'm already on narcotics for back. They aren't working great. On muscle relaxers and have been on the gabapentin, lyrica, cymbals, you name it, no luck. I don't remember what life was like without pain. The pain doctors seem to think everyone is imagining their pain or just wants meds. Oh how I wish there was a pain-o-meter or better yet, the ability to let each doctor live even an hour in my shoes. Maybe then they all could understand my symptoms a bit better.
I will be honest, I am already exhausted from living with chronic pain and jumping through hoops with no positive outcome re: my back for years. The concept of having a possible diagnosis for these other things is great, but the thought of basically having to start a long journey all over, is almost too much to bear.
Sorry if i sound frustrated and crazy. at this point, i probably am lol
Thanks for listening to my rant and for any help you can offer.
I should add (as if it weren't long enough), there are other symptoms I didn't list. I try to list them all, but there are just so many.
COMMUNITY LEADER
Hi...many Drs only accept certain symptoms to be a result of Chiari, but those of us with it have a manefesto of them and we all could not be wrong could we?
There are many related conditions to Chiari that can be the reason for so many issues going on, and could explain y u feel a flare up...and that is my next comment. Chiari's symptoms do cycle and flare, and y we r tested for MS,lymes and lupus as the symptoms r all similar and how it comes and goes.
EDS< ICP, POTS are just a few related conditions we all need to rule out as they may be affecting us and not the Chiari....so, we need to know if we have a CSF obstruction, overcrowding, etc...and what all is going on and how our Chiari is affecting our overall health.\
We do not always need a hard sneeze or fall to trigger it, sometimes it is just the normal daily stresses that can trigger them.
It is not easy to follow logic for a condition like this.
Yes, there can be an emergency issue with Chiari....one is with sleep apnea, and it is bcuz we stop breathing with it....
Drop attacks is when the CNS shuts off for a few seconds....and we drop, and midway come to enuff to know we r midfall, but can not react or call out for help.....it is very scary....as what if it lasted longer?
Pre op most meds did not touch my Chiari pain....only post op did it take the edge off.....all u can do is avoid things that will trigger a flare...lifting, bending, even pushing a vacuum can start it all off......certain lights, sound...so learn to listen to ur body as to what may set it all off. We do have a list of activities to avoid in the health pages - http://www.medhelp.org/health_pages/list?cid=186
Never apologize for venting, ranting etc....that is y we and this forum are here...so let it out...lol...
Thanks for taking the time to read the novel and for your reply.
Most of those things I already avoid due to my back. The one about avoiding stress almost made me LOL. Is that even possible?
Basically it sounds like I just need to suck it up and wait while all the tests get done and i meet with rheumatologist and NS. I guess I'm just afraid neither of them will take ownership of these symptoms which means I'm no closer to feeling better.
How do you convince these docs and the pain docs to believe what u are saying when sometimes you even sound crazy to yourself??
Any idea what to do about my vision issues? Eye doctor seems clueless, although I did update her on Chiari Dx and asked her to do some research. It's starting to affect my ability to work.
Most of those things I already avoid due to my back. The one about avoiding stress almost made me LOL. Is that even possible?
Basically it sounds like I just need to suck it up and wait while all the tests get done and i meet with rheumatologist and NS. I guess I'm just afraid neither of them will take ownership of these symptoms which means I'm no closer to feeling better.
How do you convince these docs and the pain docs to believe what u are saying when sometimes you even sound crazy to yourself??
Any idea what to do about my vision issues? Eye doctor seems clueless, although I did update her on Chiari Dx and asked her to do some research. It's starting to affect my ability to work.
Hello! Unfortunately, I think your experience is normal for most of us. The long journey of doctor to doctor trying to find answers and more and more odd symptons start to develop. Thankfully you have a daignosis now and things can only go up from here (that is what I had to tell my self while waiting the 8 weeks to get until my appointment with my NS). This is how it progressed for me as well and everything came together once I had a cervical spine MRI that lead to my Chiari diagnosis. I as well thought I had MS due to the multiple odd symptoms.
To answer some of your questions, yes, i think your symptoms do sound chiari related. the thing with chiari is that everyone is effected differently. The reason they may be getting worse could be due to an syrinx getting larger affecting the CSF flow. My doctor told me for some unknown reason to researchers yet is how chiari symtoms progress differently person to person over time and what exactly causes to the progression of symptoms. I had no symptoms my whole life until this last September, then life fell apart for me! No trauma, no injuries, etc. For #4) if you ever have paralysis anywhere in your body, see you NS immediately. You may have numbness that comess and goes but if it persists, you need to see your NS . For pain management, I tried pain meds but none provided much relief and I could not take narcotic pain meds and continue to work. My best friend was my heating pad and if you have not tried this yet, I strongly recommend you do. I took it to work with me and sat ay desk with it plugged in all day. Also a hot pack you put in the microwave works well for those areas a heating pad is too large and bulky for, like around the neck.
The NS will tell you if your Chiari is operable or not... I hope things start improving for you!
To answer some of your questions, yes, i think your symptoms do sound chiari related. the thing with chiari is that everyone is effected differently. The reason they may be getting worse could be due to an syrinx getting larger affecting the CSF flow. My doctor told me for some unknown reason to researchers yet is how chiari symtoms progress differently person to person over time and what exactly causes to the progression of symptoms. I had no symptoms my whole life until this last September, then life fell apart for me! No trauma, no injuries, etc. For #4) if you ever have paralysis anywhere in your body, see you NS immediately. You may have numbness that comess and goes but if it persists, you need to see your NS . For pain management, I tried pain meds but none provided much relief and I could not take narcotic pain meds and continue to work. My best friend was my heating pad and if you have not tried this yet, I strongly recommend you do. I took it to work with me and sat ay desk with it plugged in all day. Also a hot pack you put in the microwave works well for those areas a heating pad is too large and bulky for, like around the neck.
The NS will tell you if your Chiari is operable or not... I hope things start improving for you!
COMMUNITY LEADER
Hi....I know what u mean....stress can be hard to avoid, but we need to try, and do things to help us relax...a warm soak in the tub, soft music and even low lighting can be a help....Also the above poster mentions a heating pad,..I used one daily they can be a huge help in relaxing muscles,.
The issue with convincing Drs is not an issue when u have a Dr that understands Chiari...so finding the right Dr is key.
For the vision issues u need a neuro optho...not a reg eye Dr...it is the increased pressure from CSF that can make our vision wonky.....and it can just be a neuro issue....so do see if u have one in ur area that u can see,
To address the above poster saying that an increase in symptoms is a direct correlation to a syrinx forming is not accurate....it can indicate that, but Chiari symptoms cycle and flare some times for no reason...mine did, I started to have drop attacks and I did not have a syrinx....so, that is not the only reason...sometimes there are none.
Is there anything the neuro optho can do other than say, yep, your vision is messed up, go see a NS? I think the closest one is about an hour and a half away, which is fine, if he can do something. If not, I'd rather not waste my time since I will have so many other apps and tests in the near future.
I will TRY to relax, but it won't be easy. Even trying to get those around me to understand (or believe) what I'm going through is impossible. I don't have the most compassionate people surrounding me. I also have animals that rely on me and a FT job I am trying to stay on top of. Thank God I started working from home about a year ago or I would likely be unemployed by now.
I have my first appt with my pain doctors since my diagnosis next week. Have any of you found any medications at all that help with ant of this? I don't care if its a narcotic or not, I just can't bear the thought of living with more pain on top of what I have been living with with no relief.
I feel like such a whiner. You guys have been dealing with this a lot longer than I have and seem to take it all in stride. I feel like I can't stand one more minute of it and have just basically started!
I will TRY to relax, but it won't be easy. Even trying to get those around me to understand (or believe) what I'm going through is impossible. I don't have the most compassionate people surrounding me. I also have animals that rely on me and a FT job I am trying to stay on top of. Thank God I started working from home about a year ago or I would likely be unemployed by now.
I have my first appt with my pain doctors since my diagnosis next week. Have any of you found any medications at all that help with ant of this? I don't care if its a narcotic or not, I just can't bear the thought of living with more pain on top of what I have been living with with no relief.
I feel like such a whiner. You guys have been dealing with this a lot longer than I have and seem to take it all in stride. I feel like I can't stand one more minute of it and have just basically started!
COMMUNITY LEADER
It really depends on what he/she finds many with Chiari can also have ICP so again it depends on what is found as to what they can do for u.....
I felt the same way when I joined the forum...but I feel this way, we all have been dealing with this a long time whether we knew it or not....as many symptoms we consider to be "normal" are not....so just bcuz we adjusted to much of it does not lessen the time we r affected.....
They don't do anything diagnostically, they just manage my pain meds and used to do my injections in my back. We are clearly not doing any more random, don't seem to help, dart board injections for now anyway, so it will just be a medication check/ adjustment.
Are there any specific medications for pain or anything else that should be avoided, especially since I don't know if I have ICP issues or not?
Also, I will be scheduling with a rheumatologist to try to find any coexisting conditions adding to my symptoms, what specific things should I have him or her look into? I have read that I may still possibly have a form of thyroid disease even if my typical thyroid tests were " normal", is that true?
Do any of you have an app that u use for symptom tracking? I have one for pain that I have kind of altered to work for other symptoms too, but have not been able to find one on apple or android that will track all different types of symptoms easily.
Sorry, the questions will likely be never ending since I'm new to all this.
Are there any specific medications for pain or anything else that should be avoided, especially since I don't know if I have ICP issues or not?
Also, I will be scheduling with a rheumatologist to try to find any coexisting conditions adding to my symptoms, what specific things should I have him or her look into? I have read that I may still possibly have a form of thyroid disease even if my typical thyroid tests were " normal", is that true?
Do any of you have an app that u use for symptom tracking? I have one for pain that I have kind of altered to work for other symptoms too, but have not been able to find one on apple or android that will track all different types of symptoms easily.
Sorry, the questions will likely be never ending since I'm new to all this.
COMMUNITY LEADER
Hi...as far as thyroid.....have they looked at an auto immune thyroid issue or just the typical thyroid and looking at TSH? Those of us with Chiari may have the auto immune thyroid condition Hashimoto's and need in addition to TSH, Free T3 and Free T4 and TPO antibodies...With Hashi's u can have normal levels one day and then be hyper or hypo the next....it is crazy.
Right off hand I can not recall some of the meds to avoid with ICP...sorry....
With the Rheummy get checked for ehlers-danlos....that is one that if u do schedule surgery can affect how u feel and how u heal post op....
No worries...ask until u have no more questions....and I will do my best to answer them : )
Not sure ill ever get to where I have no questions, so be careful what you wish for lol They just did the normal thyroid thing at the general doctor before I knew I had Chiari.
One more thing comes to mind (this very second lol), ok, maybe 2. I had a brain CT in 2007 during one of the many work ups for my headaches. In the very least, should they not have been able to see the bony abnormality and either diagnosed me then or at least recommended further testing? Secondly, I have had a ton of MRIs of my lumbar spine and one of my thoracic since my back surgery. If I has syrinx in those regions, would they have been obvious to whomever was reading it, or would someone with special training, like a NS, who reads the brain MRIs have had to read it and or the normal radiologist had to have been specifically looking for that? They were looking for discs etc, just wondering of they would have seen other things that were there as well.
One more thing comes to mind (this very second lol), ok, maybe 2. I had a brain CT in 2007 during one of the many work ups for my headaches. In the very least, should they not have been able to see the bony abnormality and either diagnosed me then or at least recommended further testing? Secondly, I have had a ton of MRIs of my lumbar spine and one of my thoracic since my back surgery. If I has syrinx in those regions, would they have been obvious to whomever was reading it, or would someone with special training, like a NS, who reads the brain MRIs have had to read it and or the normal radiologist had to have been specifically looking for that? They were looking for discs etc, just wondering of they would have seen other things that were there as well.
COMMUNITY LEADER
No worries,....there are a few here that can answer u , not just me, but I will attempt to answer all ...lol...
U will want the auto immune thyroid testing done...even an ultra sound of the thyroid can be helpful.
Well, they may have seen the malformation but not too many feel or know how it can affect the person with it, they feel it is an incidental finding....unless they see a herniation of what ever they feel fits the criteria ( and we all know that is not correct) only then do they feel compelled to let us know.
Even tho u had a lot of MRI's of the thoracic or lumbar spine it may not show as it can change like nething with time, how long ago were these MRI's?
I had a lumbar spine MRI yrs b4 my brain MRI and I was told nothing was wrong....fast forward to my Chiari DX and my Drs wanted copies of ALL MRI's I had...and reports and guess what, I had tethered cord and was never told....just bcuz these r considered congenital they feel we have had it all this time it is of no significance....ugh....
Some radiologists only report on what they r told to look for, others may include what they find regardless....this has been my experience so far.
Yes, clearly, you are my personal answer source as no one else was brave enough to read my novel. I'm sorry, but your input is truly appreciated.
The thoracic one was in the last six months. The lumbar ones were at various times since 2009. Most recent being probably within the last year.
As for the CT, even if that neuro did not feel it relevant, he should have told me and I could have at least been aware of what not to do. As a medical professional, I feel it is a patients right to be informed of EVERYTHING, not just what the doctor feels is relevant. Let the patient decide what is relevant and what is not. I'm wondering if maybe we didn't mess something up with all the PT we were doing for my back that aggravated the Chiari and set myself into this whirlwind of symptoms. Had I known there was even a chance I had Chiari, I would have told PT and we wouldn't have been doing some of the stuff we were doing that involved my neck. While I am not a money hungry individual, I will be VERY mad if I get my hands on that CT and see that there was evidence of the Chiari and I was never told. My feeling right now is, maybe I had. Chance of being one of those non symptomatic people if only I had known. I know we had done some work on my neck in PT shortly before all this started because I was obviously having headaches and pain in my shoulders and neck.. Maybe it's just coincidence and I am grasping for answers, but again, had I only known, maybe all of this could have been avoided.
The thoracic one was in the last six months. The lumbar ones were at various times since 2009. Most recent being probably within the last year.
As for the CT, even if that neuro did not feel it relevant, he should have told me and I could have at least been aware of what not to do. As a medical professional, I feel it is a patients right to be informed of EVERYTHING, not just what the doctor feels is relevant. Let the patient decide what is relevant and what is not. I'm wondering if maybe we didn't mess something up with all the PT we were doing for my back that aggravated the Chiari and set myself into this whirlwind of symptoms. Had I known there was even a chance I had Chiari, I would have told PT and we wouldn't have been doing some of the stuff we were doing that involved my neck. While I am not a money hungry individual, I will be VERY mad if I get my hands on that CT and see that there was evidence of the Chiari and I was never told. My feeling right now is, maybe I had. Chance of being one of those non symptomatic people if only I had known. I know we had done some work on my neck in PT shortly before all this started because I was obviously having headaches and pain in my shoulders and neck.. Maybe it's just coincidence and I am grasping for answers, but again, had I only known, maybe all of this could have been avoided.
COMMUNITY LEADER
I totally agree u should have been told regardless of how they view the results, but that is not how they feel....this is y we suggest requesting copies of ALL testing and the reports...we find out more this way and have all the info on hand so getting a 2nd or 3rd opinion is faster.
I know I had a RX for PT post op, but did not go and my NS said it was good I hadn't as my disk's slipped further and PT would have meade me feel worse....
Not knowing what u do in PT it is hard to say.....but, I know the more active we r, the worse we can feel...
I think it could have been a matter of time, as I was not doing nething PT wise when all my symptoms flared....u just never know. It may have been a Godsend that u had PT and found it sooner...???
But had I known about it when I got the CT in 2007, I would not have allowed then to work with me neck which may have made the symptoms appear or worsen. Grrrrr. No way to tell. I'm glad I know about it now, but just irritated I didn't know about it sooner when there should have been some evidence on CT.
COMMUNITY LEADER
I know what u mean, but u can only go forward and to look back may trip u up at this point....focus on what u know now....
But I totally agree, it would be nice if Drs told us and not treated us like their kids and decide what we should be told or should be concerned with....it is frustrating....
Are there any contraindications to surgery? Based on my symptoms and how they are progressing, I would be surprised if they did not find syrinx or tethered cord or something when they do my cervical MRI next week. Regardless, I would likely be a candidate for surgery, but are thing ever so screwed up in there that they CAN'T do surgery? Facing life with all these symptoms with not even a surgical option is scaring me. I have zero quality of life right now. I dread the surgery, but dread doing nothing even more.
COMMUNITY LEADER
Well not everyone with Chiari needs surgery....as it is not a fix or a cure, only a means to restore CSF flow and slow progression.....
So u need to know if u have a syrinx, or an obstruction to CSF flow and over crowding....these are some of the more important issues along with the related conditions, EDS is one of the top ones to review and rule out, sleep apnea, ICP, POTS....
Keep in mind, a cervical MRI will only show if u have a syrinx in that area, and they can form in the thoracic and lumbar spine....and tethered cord can only be suspected from a cervical spine MRI, u need the lumbar MRI....
One last thing to consider....surgery restores CSF flow, but, many symptoms continue post op...that is a possibility.
Make sure u find a true Chiari specialist b4 u consider surgery.
Selma is a hero! I really don't have much to add to what she said, but while you are waiting for your appointment, try to get whatever testing out of the way that you can. To to the NS with as much info as you can. And don't be surprised if the NS acts like it's no big deal or the Chiari doesn't cause symptoms. Most of us have had to go through several doctors to find one who kind of understands.
It is not easy, not pre-op, not post-op. I had decompression almost 1 year ago and I don't feel much better. But my syrinx has stopped growing and my skull is more anatomically correct, so it was worth it. As for pain, nothing really helps, unfortunately. For me, it's just about making sure I rest when I need to and use lots of ice packs. I have 3 kids, all of whom are home schooled, so I know that low stress and taking it easy are pretty near impossible. But you do your best.
Good luck!
Annie
It is not easy, not pre-op, not post-op. I had decompression almost 1 year ago and I don't feel much better. But my syrinx has stopped growing and my skull is more anatomically correct, so it was worth it. As for pain, nothing really helps, unfortunately. For me, it's just about making sure I rest when I need to and use lots of ice packs. I have 3 kids, all of whom are home schooled, so I know that low stress and taking it easy are pretty near impossible. But you do your best.
Good luck!
Annie
Thanks for the comments. I have left messages for the NS to see if he will order the CINE study so I can do that while I am waiting to see him. Fr some reason, the regular neurologist would only order the cervical MRI even though both were recommended by the NS who read the brain MRI. My plan is to get the tests done ans see the local NS to order any additional tests that are needed. Once all the tests are done locally, I will take them to a chiari specialist (maybe two) for his opinion. Just wanted to get as much of the initial leg work done locally. As for the other MRIs, I doubt insurance will pay for any more since I have had them in the last year. They didn't even want to approve the cervical one which I have never had before. I need to call and get a list of all the ones I have had and look to see which I have copies of still and get opines of all the rest to start to get all this organized.
COMMUNITY LEADER
My Chiari specialist RX'd all my MRI's to be redone since it was more than 6 months since I had my MRI's and I saw him....they said changes can happen in that time frame and wanted them to be 6 months or less....to review.
But all in due time....
While u wait get tested for EDS, sleep apnea.....ICP, POTS...rule them out medically as these conditions can affect how u feel and heal should u have surgery.
I was tested for sleep apnea awhile back and it was negative. Am I supposed to be tested again now that I have symptoms? I HATE sleep studies since I have such trouble sleeping anyway! Does the NS test for all that other stuff? Is any of it something my general doctor can do?
Oh, and how do you convince insurance companies to cooperate and what the heck are you supposed to do when you meet your max benefit for the year? Ugh.. I hate my life. I haven't found that peaceful acceptance yet. Was at my whits end with my back problems, now add this and I'm definitely on the edge.... Oh yeah, stress free living, I forgot!
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