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How do they determine if your a surgery candidate?
Hi all, and thank you for all of the wonderful information I've had access to on this site! I've been on the outside looking in at this site for the last week or two - I love what you do here! The sense of compassion coupled with humor is a great fit for me.
I was diagnosed in May with Chiari I, with 11mm herniation, and a 1-2mm syrinx. I've met with a neurologist who prescribed Lidocane patches which help; and Neurontin for pain which only made me nauseated and combative. I'm sticking with the patches and prefer red wine to the pills!
I will be meeting with (neurosurgeon) Dr. Batzdorf up at UCLA on August 5th. I was wondering, how do they determine if you are a candidate for the decompression surgery? Also, has anyone seen Dr. Batzdorf? I know he's supposed to be #1 in CA specializing in Chiari, but he no longer does the surgery, so I assume he has a colleague there that does his cases for him.
Thank you for any input!
Lisa
I was diagnosed in May with Chiari I, with 11mm herniation, and a 1-2mm syrinx. I've met with a neurologist who prescribed Lidocane patches which help; and Neurontin for pain which only made me nauseated and combative. I'm sticking with the patches and prefer red wine to the pills!
I will be meeting with (neurosurgeon) Dr. Batzdorf up at UCLA on August 5th. I was wondering, how do they determine if you are a candidate for the decompression surgery? Also, has anyone seen Dr. Batzdorf? I know he's supposed to be #1 in CA specializing in Chiari, but he no longer does the surgery, so I assume he has a colleague there that does his cases for him.
Thank you for any input!
Lisa
COMMUNITY LEADER
Never apologize for venting....I agree it helps and that is y on Mondays we have a Rant thread....we have to get it out and to those that understand.
And this is the place u can do both......
I also understand going to Drs for yrs trying to find out what is wrong and not getting answers....I started while I was young...grade school...then again in Jr. High and again in High school...I was not dx'd until age 48.
And the older we get the worse the symptoms and the more frequent it all becomes....and the Drs r sooooo misinformed they feel we do not start getting symptoms until middle age....and they r others that feel chiari just does not cause symptoms, so they do not tell us we have it when it shows on MRI's and we r told it is "clear".....
It is very frustrating and I know u said malpractice, but it is older info that the med schools were teaching, MRI's did not come in to common use to dx until the late 1980's....and were very expensive so Drs avoided them as much as possible....so consider I graduated High school in 1977...how could they have helped me then? And all the Drs that we r going to went to school b4 the use of MRI, well once they were used they still were going but the 5 min bit of info they got in med school and it indicated this was nothing.,....and Drs listen to the text, not the patient most of the time.
This is where a Chiari specialist is the one to go to as they do their own research.
I'll get off my soap box, but we r all in this together and we all understand...and I am sure ur kids will too...mine does.
And she did long b4 I got my dx...she knew if I said I can't today, that I could not and she knew I wanted to....
Thanks Selma,
I had two epidurals in 2008/2009, they were three weeks apart. Yes I have had 13 MRIs of my whole spine in the last three years and I have had the LP and every other test possible. The Chiari was just diagnosed this past year. It started in 2010 but now is progressively worse. I move wrong or turn my head too fast and I end up with a headache in the base of my head that shoots to the front of my head and then down my neck and in my shoulders and I instantly get sick to my stomach. I get dizzy and my shoulders hurt and it shoots tremendous pain down my spine and into my who body. I get pain in my feet and hands and arms and my legs want to shut down and my body hurts everywhere. Sometimes I have a hard time forming words and sometimes I lose my train of thought and hesitate. It is incredibly frustrating and emotionally hurtful because I have a hard time accepting where I am at. I am only 37 years old and I had so many things I wanted to do with my career and my life. I want to run down the street just because I love to run and I want to do push ups and sit ups and exercise with my daughter or wrestle with my son, all things I could do three years ago but can't do today. I want to feel ok and not live in this pain!!! I want to not cry because I fear my kids won't see me in the way they have all their lives. It ***** and I am so tired of feeling angry because my doctor was a malpracticing idiot and because he used an agent even when he was told and asked not to.
Sorry, Venting..but it does help.
I had two epidurals in 2008/2009, they were three weeks apart. Yes I have had 13 MRIs of my whole spine in the last three years and I have had the LP and every other test possible. The Chiari was just diagnosed this past year. It started in 2010 but now is progressively worse. I move wrong or turn my head too fast and I end up with a headache in the base of my head that shoots to the front of my head and then down my neck and in my shoulders and I instantly get sick to my stomach. I get dizzy and my shoulders hurt and it shoots tremendous pain down my spine and into my who body. I get pain in my feet and hands and arms and my legs want to shut down and my body hurts everywhere. Sometimes I have a hard time forming words and sometimes I lose my train of thought and hesitate. It is incredibly frustrating and emotionally hurtful because I have a hard time accepting where I am at. I am only 37 years old and I had so many things I wanted to do with my career and my life. I want to run down the street just because I love to run and I want to do push ups and sit ups and exercise with my daughter or wrestle with my son, all things I could do three years ago but can't do today. I want to feel ok and not live in this pain!!! I want to not cry because I fear my kids won't see me in the way they have all their lives. It ***** and I am so tired of feeling angry because my doctor was a malpracticing idiot and because he used an agent even when he was told and asked not to.
Sorry, Venting..but it does help.
COMMUNITY LEADER
Did u have a MRI of the lumbar spine?.....
An Epidural can pull a herniation further down and cause symptoms to flare...so u may have had all of this without notice of symptoms, but the epidural is what sparked it all to flare up.
All u need is a leak, or if they do a LP for them to draw the fluid too fast and it pulls on the tonsils.
I would strongly suggest sending ur MRI's to a chiari specialist for review.
This is deff not an easy condition to live with or find the right Drs, but we r here to help the best we can.....just ask questions when u have them, we have threads for venting when u need to....and threads just for fun, like todays fribble....lol....
"selma"
Thanks for the welcome!
I have had mris of my brain since 2004 and never has it ever been an issue. I had all of these ruled out due to migraines and they ruled this out specifically.
I need to clarify, after the epidurals and the reactions to them my central nervous system changed and there were alot of things they THOUGHT I might have and tethered cord was one, however it was NOT present until after the epidurals and then it went away. My specialist has stated that it is a symptom and part of the process of Arachnoiditis. With the Arachnoiditis progressing in my central nervous system it appears to be pulling on the tonsils of my brain and pulling it downward. I have a double whammy and just want a fresh look at some of your guys experiences and like you and everyone else on here, I want to know I am not alone. I know you understand that all too well. I am greatful to have found this website and for this connection I can make with you and hopefully others. :)
I have had mris of my brain since 2004 and never has it ever been an issue. I had all of these ruled out due to migraines and they ruled this out specifically.
I need to clarify, after the epidurals and the reactions to them my central nervous system changed and there were alot of things they THOUGHT I might have and tethered cord was one, however it was NOT present until after the epidurals and then it went away. My specialist has stated that it is a symptom and part of the process of Arachnoiditis. With the Arachnoiditis progressing in my central nervous system it appears to be pulling on the tonsils of my brain and pulling it downward. I have a double whammy and just want a fresh look at some of your guys experiences and like you and everyone else on here, I want to know I am not alone. I know you understand that all too well. I am greatful to have found this website and for this connection I can make with you and hopefully others. :)
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
First u need to see a true Chiari specialist otherwise u may continue to run around chasing diff opinions.....as not all Drs feel Chiari can cause symptoms and do not report it when they see it, they consider it an incidental finding.
If u have tethered cord, that could be the reason for ur tonsils being low lying, do u know if u have the malformation of the skull as well?....if so, u had this since birth and it was not detected or report to u sooner.
Many times we can live a life with this and deal with the symptoms as we do not know them as symptoms since we have had this all our lives, until a change occurs and the CSF is obstructed...this could be a fall, a MVA, or a hard cough or sneeze and we have a flare of symptoms we can not ignore.
We do have a list of drs names, these r the members of this forum's drs and were posted only if the member was happy with them. The list is not a referral, but is here to help u get started with research on finding the right Dr for u.
Talk with ur ins provider and see what they cover and how u can obtain the help u need, do u need a referral or can u make the appoint ur self....things like that...
As far as surgery is concerned, it is not a fix or a cure and not all that have surgery do well post op...some respond well, while others do not.
This is not a quick fix back to ur old life- chiari is life altering and u will find it best to slow down and listen to ur body......
Get all the testing to check for a syrinx, in the cervical , thoracic and lumbar spine, u will also want to look for disk issues, sleep apnea, ehlers-danlos, ICP.....(which may have been done with the LP already)
But it is important to know if u have a CSF obstruction and overcrowding...and how this is affecting ur overall health....then they also look to ur symptoms.
I know that feeling u get when u can't wear ur glasses I use to get that too, it felt like a vise wrapped around my head when I put them on....
Knowing u r not alone can help, and knowing as much as u can about the dx is even better as it will help u select the best Dr for u.
This is a major surgery and there is no way to know how ur body will respond and a dr should not offer it unless the benefits out weight the risks.
And that is not to say u r not a surgical candidate or not to have surgery. u have to have the right drs and get a few opinions from the same caliber drs and then go from there.
Just be advised u may have the symptoms for some time post op, and they may come and go....but u do not want to avoid surgery as that also can affect ur health in doing nothing if u do have an obstruction.
Seek well experienced Drs...that is the best advise I can offer.
Hi everyone. I have been struggling with this too, however my story is different. I was a very fit and highly active individual. I suffered a low back strain and underwent two epidurals for tx, the doctor who performed these epidurals used Iodized dye when he knew I was allergic to it. I suffered an allergic reaction both times and after I developed nerve damage on the left side which went away after 8 months and then I went through a million and one other signs and symptoms and testing. In the past 3 years I have had like 15 MRIs, a CT, spinal tap, numerous blood tests, several doctors in several states and SEVERAL opinions. I had red marrow all through my spine and then myelomelacia and then a tethered cord and now they say I have arachnoiditis and Chiari Malformation I. The chiari malformation never showed up before 2009 after the epidurals and it has progressively gotten worse. Sometimes I feel like my middle spine is a wet noodle and it takes everything in me to stay upright. I have gone from 5 to 8mm in the last year and my symptoms are noteably worse now everyday. I have the jaw pain, the ear ringing and dizziness but it also affects my whole left side with the centralized pain disorder I have now and I have spasms that go from the head to the feet. I feel my chest and heart and kidney and all other organs spasm and then my arm and my legs and my face burns and now I even feel this extraordinary pain in the front of my head and face and I can't wear my glasses when this happens because of the pressure in my temples and my eyes. So Arachnoiditis caused my Chiari Malformation and they both cause my frustrations. I have so much I still want to do in life and my mind tells me ok but my darn body stops me in my tracks!!! Any thoughts would be greatly appreciated. Surgery recommendations? Anything.... Thanks Crystal
Hi Lisa,
Sorry for the delayed response, it's been a crazy week. In answer to your questions, my surgery was Oct 16 2009. I honestly do not remember how bad my herniation was, which is funny considering how long I spent dwelling on it, lol. I did and still do have syrixes, but I do my best to not let all of that rule my life anymore. Then again, I am on a lot of nice pain meds for my EDS, so that makes it easier.
As for having to fight for your dx, ya, it bites, but it sure beats the h*ll out of believing the docs that say it's all in your head...
The decompression surgery is well worth having. The dizzy spells and headaches do come a lot less frequently. They don't go away all together, but they don't take over your life anymore post op either.
Hope all goes well and feel free to contact me if you need to talk.
Stormy
Sorry for the delayed response, it's been a crazy week. In answer to your questions, my surgery was Oct 16 2009. I honestly do not remember how bad my herniation was, which is funny considering how long I spent dwelling on it, lol. I did and still do have syrixes, but I do my best to not let all of that rule my life anymore. Then again, I am on a lot of nice pain meds for my EDS, so that makes it easier.
As for having to fight for your dx, ya, it bites, but it sure beats the h*ll out of believing the docs that say it's all in your head...
The decompression surgery is well worth having. The dizzy spells and headaches do come a lot less frequently. They don't go away all together, but they don't take over your life anymore post op either.
Hope all goes well and feel free to contact me if you need to talk.
Stormy
Carolyn,
Whew! I have one boy and he has always been SO busy! Are your guys in sports? Oh, how busy you must be! My kids are 4-1/2 years apart, with my girl being first. Which, maybe you've heard, little girls love to do "little mommy" things, so she was a fantastic help when my son was little. I hope you have family/friends support in your area to keep on top of their energy!
Funny... what we have in common - delusions (hope) of control and facial cobwebs around the nose. Mine starting with the upper left lip, but I'm still checking for dog hair near/in my right nostril that feels like it might really be there! I've recently had sharp pain in my thumb when writing... not too obnoxious at this point. My symptoms seem to be happy going back to left facial tingling today. Except - That dog hair feels so REAL!!!!!
Lisa
Whew! I have one boy and he has always been SO busy! Are your guys in sports? Oh, how busy you must be! My kids are 4-1/2 years apart, with my girl being first. Which, maybe you've heard, little girls love to do "little mommy" things, so she was a fantastic help when my son was little. I hope you have family/friends support in your area to keep on top of their energy!
Funny... what we have in common - delusions (hope) of control and facial cobwebs around the nose. Mine starting with the upper left lip, but I'm still checking for dog hair near/in my right nostril that feels like it might really be there! I've recently had sharp pain in my thumb when writing... not too obnoxious at this point. My symptoms seem to be happy going back to left facial tingling today. Except - That dog hair feels so REAL!!!!!
Lisa
It can be exhausting...mine are 12, 8 and 3 and all boys..so they need to be very active and it is very frustrating that I can't do that with them like I used to.
I know..that cobweb feeling is just plainly weird..for me it happens a lot around my nose. Another annoying thing I get is a sharp stabbing pain, usually in my fingers or legs and I think that something is stinging me but of course, nothing is there.
Carolyn
I know..that cobweb feeling is just plainly weird..for me it happens a lot around my nose. Another annoying thing I get is a sharp stabbing pain, usually in my fingers or legs and I think that something is stinging me but of course, nothing is there.
Carolyn
I'm happy my kids are a bit older - 17 & 12. You must be exhausted with three!
Agh! I think if the twitching goes into my eyeball it'll drive me nuts! I do know that cobweb feeling. I get it on the left side of my upper lip, also a lot of times it feels like there's a hair on my finger of my left hand or on my toe - and there's nothing there! I always knew it wasn't right, but didn't really think much of it since it's so small.
Lisa
Agh! I think if the twitching goes into my eyeball it'll drive me nuts! I do know that cobweb feeling. I get it on the left side of my upper lip, also a lot of times it feels like there's a hair on my finger of my left hand or on my toe - and there's nothing there! I always knew it wasn't right, but didn't really think much of it since it's so small.
Lisa
We are a lot the same...I have to be in control!! That's what kept me from doing too many bad things as a teen and that is what is preventing me from taking a lot of the meds now too! I can't stand being a zombie...plus I have 3 kids I need to care for.
I get twitching not only around my eye but sometimes it feels like the eyeball is twitching itself. I also get twitches all in my face that feels like cobwebs on me. Definitely a result of cranial nerve damage.
Carolyn
I get twitching not only around my eye but sometimes it feels like the eyeball is twitching itself. I also get twitches all in my face that feels like cobwebs on me. Definitely a result of cranial nerve damage.
Carolyn
OK. It's just been the last week and it happens a LOT throughout the day, and it it's quite visible too. I brought it up to the neuro today and she said it probably has nothing to do with the chiari. I'm wishing I had back the 3&1/2 hours to & from UCLA from my house! Ah, well, there's worse things, huh?
Oh, stem compression? Hmmm that is actually mentioned in my initial mri report.
Lisa
Oh, stem compression? Hmmm that is actually mentioned in my initial mri report.
Lisa
COMMUNITY LEADER
hi Lisa,
Being good is the best route to go...I agree!!...I just do not think ( and I am not a dr) u need to worry...and stress can add to symptoms.I know it sounds like it is small and from what I read the syrinx must get so large that it ruptures....
We all get that...I seem to notice my eye twitches more when I am over tired....and it can go no for weeks...and then finally go away.Yeah, it is related somehow...has to do with all the nerves being affected by the brain stem compression.
"selma"
Being good is the best route to go...I agree!!...I just do not think ( and I am not a dr) u need to worry...and stress can add to symptoms.I know it sounds like it is small and from what I read the syrinx must get so large that it ruptures....
We all get that...I seem to notice my eye twitches more when I am over tired....and it can go no for weeks...and then finally go away.Yeah, it is related somehow...has to do with all the nerves being affected by the brain stem compression.
"selma"
Thank you... After my appointment with this neurologist today, I have a feeling she doesn't really know what she's talking about. Your response makes me feel better. But, I will be good girl and wait to see what Dr. Batzdorf says. Especially since we don' t know if I have more than one.
The mri showed my syrinx only at 1-2 mm & I can't imagine how they even spotted it on the mri! That seems pretty stinkin' small. After all the physical things I've done over the years, I can't imagine it would all of a sudden be that dire! (Although snowboarding for 4 days around New Years' probably set things off... especially since I couldn't GET IT TOGETHER the first three days and fell a lot!)
So strange...
Oh - what about muscle twitching/spasm around the eye? Is this something maybe related? It's been bugging me all week!
Lisa
The mri showed my syrinx only at 1-2 mm & I can't imagine how they even spotted it on the mri! That seems pretty stinkin' small. After all the physical things I've done over the years, I can't imagine it would all of a sudden be that dire! (Although snowboarding for 4 days around New Years' probably set things off... especially since I couldn't GET IT TOGETHER the first three days and fell a lot!)
So strange...
Oh - what about muscle twitching/spasm around the eye? Is this something maybe related? It's been bugging me all week!
Lisa
COMMUNITY LEADER
Hi...I did read that it is possible for a syrinx to rupture...however, I was given the impression that the syrinx was of such an enormous size that many symptoms were present....and that it was not all that common.Plus they were referring to a deviated syrinx.....for which I could not find a deff....but, ur syrinx is small in size so I do not think it could rupture at this point.
Yes, chiari and syringomyelia both tend to cycle with symptoms and flare ups.
"selma"
Yes, chiari and syringomyelia both tend to cycle with symptoms and flare ups.
"selma"
Thank you.
Ya, I have a tendency to think I can be in control - I really tried for three months, swimming four times a week to work it out. Scary to look back now - I asked the neurologist if I were feeling better if I would cause any damage if I went back to gentle swimming - she said not until I talk to the neurosurgeon because the syrinx could burst. Anyone hear of this?
I'm sticking with the Lidocaine patches for now, and ibuprophen. I hate the zombie feeling (ahh, did I say - control?) I was feeling better last week, and of course I thought it was because I was being good & taking it easy. Now this week, my neck & lower back are flaring back up. It's all a cycle-type thing, isn't it?
Thanks for all the info!
Lisa
Ya, I have a tendency to think I can be in control - I really tried for three months, swimming four times a week to work it out. Scary to look back now - I asked the neurologist if I were feeling better if I would cause any damage if I went back to gentle swimming - she said not until I talk to the neurosurgeon because the syrinx could burst. Anyone hear of this?
I'm sticking with the Lidocaine patches for now, and ibuprophen. I hate the zombie feeling (ahh, did I say - control?) I was feeling better last week, and of course I thought it was because I was being good & taking it easy. Now this week, my neck & lower back are flaring back up. It's all a cycle-type thing, isn't it?
Thanks for all the info!
Lisa
Hello and welcome,
Many of us have to fight to get a dx..myself included...so I'm happy to hear that at least you on the right path thanks to your Ortho..It's funny that you tried to swim out your symptoms...I was told it was stress and I tried to run out mine...which was an extremely bad decision indeed.
I too have been on Gaba and had the same issues you describe..I was a zombie most of the day and was having some crazy mood swings too. I didn't actually realize the last part until I got off it. Now I'm on Lyrica and handling it better but I don't think that it is helping the pain at all...it was helping me sleep but even that seems to be wearing off now.
I think your original question has been answered... you and your NS need to compare how much CSF blockage there is with how your quality of life is affected. For me, by the time they even figured out I had CM..there was no choice left and I was put in as an urgent surgery.
Good luck!
Carolyn
Many of us have to fight to get a dx..myself included...so I'm happy to hear that at least you on the right path thanks to your Ortho..It's funny that you tried to swim out your symptoms...I was told it was stress and I tried to run out mine...which was an extremely bad decision indeed.
I too have been on Gaba and had the same issues you describe..I was a zombie most of the day and was having some crazy mood swings too. I didn't actually realize the last part until I got off it. Now I'm on Lyrica and handling it better but I don't think that it is helping the pain at all...it was helping me sleep but even that seems to be wearing off now.
I think your original question has been answered... you and your NS need to compare how much CSF blockage there is with how your quality of life is affected. For me, by the time they even figured out I had CM..there was no choice left and I was put in as an urgent surgery.
Good luck!
Carolyn
COMMUNITY LEADER
Yeah and only some of those make the official symptoms list the chiari drs post....but it is something we learn by talking to each other.
I was going in to a grocery store...florescent lighting and a checkerboard floor...oh and tons of people moving all round...very crowded...I was overwhelmed...lucky for me my DD was there and saw and grabbed my arm and lead me to a chair....it was awful....I get all hot and nauseated in situations like this....never knew y....
I am glad u got validation for some of ur odd symptoms : )
"selma"
I was going in to a grocery store...florescent lighting and a checkerboard floor...oh and tons of people moving all round...very crowded...I was overwhelmed...lucky for me my DD was there and saw and grabbed my arm and lead me to a chair....it was awful....I get all hot and nauseated in situations like this....never knew y....
I am glad u got validation for some of ur odd symptoms : )
"selma"
I love it! I feel so much better! This is too funny. I went to Maui with my parents about 5 years ago and they took me to Longhi's restaurant in Lahaina and they have a bold black & white checkerboard floor. In my head, I was flipping out! This was with my relatively new step-dad and I was trying to play it down in front of him so I didn't look all high-maintenance - but it was torture! Too weird - but THANK YOU! It's so nice to know I'm not a freak all by myself.
Fluorescent lighting... Even in the late '70s I hated to go into Sears because of their lighting. Hmmmm...
Lisa
Fluorescent lighting... Even in the late '70s I hated to go into Sears because of their lighting. Hmmmm...
Lisa
COMMUNITY LEADER
NO worries...we all have had most if not all u mention and they all sound like chiari issues.
Be advised...do not walk in a darkened room....or on black and white checkerboard tiled floors..plus we also found that florescent lights play havoc with our heads too.....since u seem to have vertigo these things may affect u too.
Be sure to get blood work done and check ur vitamin and mineral levels.....
I know what u mean with hair accessories...head bands and the like and yes bobby pins can feel like a ton of bricks that r pulling hair and skin off ur head.....I also could not wear a necklace or turtlenecks as nething that close to my neck felt constricting too.
Yes, I know what u mean ...sometimes I would say my brain feels swollen.....too tight inside....
yup DDD is degenerstive disk disease that many of us get earlier in life than most, but everyone gets this as we age.....
no worries...dump all u need to...vent if need be...this is a support forum : )
"selma"
Be advised...do not walk in a darkened room....or on black and white checkerboard tiled floors..plus we also found that florescent lights play havoc with our heads too.....since u seem to have vertigo these things may affect u too.
Be sure to get blood work done and check ur vitamin and mineral levels.....
I know what u mean with hair accessories...head bands and the like and yes bobby pins can feel like a ton of bricks that r pulling hair and skin off ur head.....I also could not wear a necklace or turtlenecks as nething that close to my neck felt constricting too.
Yes, I know what u mean ...sometimes I would say my brain feels swollen.....too tight inside....
yup DDD is degenerstive disk disease that many of us get earlier in life than most, but everyone gets this as we age.....
no worries...dump all u need to...vent if need be...this is a support forum : )
"selma"
Thank you. Glad to have extra reassurance on Dr. Batzdorf.
Ah, symptoms... headaches, my head has always been sensitive, hair accessories (even a single bobby pin now) and hats give me headaches. Neck pain, burning between my shoulder blades tingling in left ear to the cheekbone & jaw. It feels like there's something IN my left ear; ringing in my ears. Occasional tingling in fingers, sometimes it feels like the tendons in my left hand are being pulled tight. Lower back pain. (To top that off, I tripped at my son's baseball game three weeks ago and jammed the heck out of my lower back, which set off worries of "what if I have syrinx's we don't know about yet...") Intermittent joint pain in fingers, wrists, knees & ankles. Recently the bottoms of my feet hurt, and also new - saying the wrong word in a sentence. This one I find embarrassing and I only want to talk to people I know so they understand. I am having a really hard time trying to do any problem solving - it truly makes my head hurt. (I just retired early from my volunteer treasurer position for our Little League because of this.) FATIGUE. If I didn't have a family, I swear I wouldn't get out of bed! Occasional vertigo (especially with BOLD patterns in public places.) And another new one - muscle spasms, particularly my right eye, and occasional spasms in my hips & legs.
It's funny - and I know this is an echo in the room - symptoms I've read on this site make me laugh and say - wow! I've had that forever - just thought it was how I'm built! Like the one today asking about handling cold - I cannot stand in the ocean in California because it makes my ankles ACHE! (Maui, on the other hand, I can take ;)
You know, when you talk about CSF blockage - I swear, when I try to think too hard, crunch numbers for reports or seriously try to solve a problem - it feels like there's pressure in my brain - like there just isn't enough room in there. Constriction? It seems like some days there's more inflammation, which, in my head, makes sense that it feels too tight.
I would imagine (hope) that Dr. Batzdorf will want a more complete MRI since the one I had was only for diagnosing neck pain. I've printed out your compilation of questions to bring with to the appointment, which will help me a lot.
OK, I think that's enough dumping on you! I TRULY appreciate what you do here - you're doing an amazing thing and I hope you're taking care of yourself in the middle of all of this!
DDD stands for? Degenerative Disc Disease?
Thank you.
Lisa
Ah, symptoms... headaches, my head has always been sensitive, hair accessories (even a single bobby pin now) and hats give me headaches. Neck pain, burning between my shoulder blades tingling in left ear to the cheekbone & jaw. It feels like there's something IN my left ear; ringing in my ears. Occasional tingling in fingers, sometimes it feels like the tendons in my left hand are being pulled tight. Lower back pain. (To top that off, I tripped at my son's baseball game three weeks ago and jammed the heck out of my lower back, which set off worries of "what if I have syrinx's we don't know about yet...") Intermittent joint pain in fingers, wrists, knees & ankles. Recently the bottoms of my feet hurt, and also new - saying the wrong word in a sentence. This one I find embarrassing and I only want to talk to people I know so they understand. I am having a really hard time trying to do any problem solving - it truly makes my head hurt. (I just retired early from my volunteer treasurer position for our Little League because of this.) FATIGUE. If I didn't have a family, I swear I wouldn't get out of bed! Occasional vertigo (especially with BOLD patterns in public places.) And another new one - muscle spasms, particularly my right eye, and occasional spasms in my hips & legs.
It's funny - and I know this is an echo in the room - symptoms I've read on this site make me laugh and say - wow! I've had that forever - just thought it was how I'm built! Like the one today asking about handling cold - I cannot stand in the ocean in California because it makes my ankles ACHE! (Maui, on the other hand, I can take ;)
You know, when you talk about CSF blockage - I swear, when I try to think too hard, crunch numbers for reports or seriously try to solve a problem - it feels like there's pressure in my brain - like there just isn't enough room in there. Constriction? It seems like some days there's more inflammation, which, in my head, makes sense that it feels too tight.
I would imagine (hope) that Dr. Batzdorf will want a more complete MRI since the one I had was only for diagnosing neck pain. I've printed out your compilation of questions to bring with to the appointment, which will help me a lot.
OK, I think that's enough dumping on you! I TRULY appreciate what you do here - you're doing an amazing thing and I hope you're taking care of yourself in the middle of all of this!
DDD stands for? Degenerative Disc Disease?
Thank you.
Lisa
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Dr. Batzdorf is well know with in chiari circles.....so u r indeed lucky to get to a chiari dr so early in ur dx.Since u already have a syrinx it is possible that u may also have a CSF blockage....but until u get to see the dr it is a waiting game.
A CINE MRI is done to see if u have a CSF blockage and overcrowding....look for other related conditions like a syrinx, tethered cord, DDD, Ehlers-Danlos....even sleep apnea should be ruled out.
Size of the herniation is not the determining factor...blockage is as well as quality of life.
I am glad u found a med that helps with ur pain and discomfort.
May I ask what other symptoms u have had?
"selma"
Dr. Batzdorf is well know with in chiari circles.....so u r indeed lucky to get to a chiari dr so early in ur dx.Since u already have a syrinx it is possible that u may also have a CSF blockage....but until u get to see the dr it is a waiting game.
A CINE MRI is done to see if u have a CSF blockage and overcrowding....look for other related conditions like a syrinx, tethered cord, DDD, Ehlers-Danlos....even sleep apnea should be ruled out.
Size of the herniation is not the determining factor...blockage is as well as quality of life.
I am glad u found a med that helps with ur pain and discomfort.
May I ask what other symptoms u have had?
"selma"
Thank you. I can't imagine having to fight for a diagnosis. Good for you for standing up for yourself! I started off thinking I just strained a muscle in my neck in January, so I just went on as usual, and tried to "swim it out" and beat the muscle into submission with exercise! (Bad choice #1) Then by March, I thought the chiropractor would help (bad choice #2!) In April, I went to an ortho guy who took x-rays, and told me I have bone spurs, degenerative discs and my neck is very straight. But told me this shouldn't cause pain. So he gave me muscle relaxers & anti-inflammatories. I went back in May because I still had horrible neck pain and was unable to get comfortable to sleep, so he did an MRI and came back with Chiari I & the syrinx. So, really, my worst symptoms have only been since this January and I see the Neurosurgeon in a few weeks. It sounds like I'm lucky in that regard. Dr. Batzdorf sounds like he has a good reputation, and actually would not give an appointment until he reviewed my MRI (even with a neurologist referral from UCLA). His assistant told me that a lot of people are misdiagnosed by doctors not familiar with Chiari and he would only give an appointment if he agreed with the diagnosis after viewing the MRI. I spent about four days hoping for a misdiagnosis, but they called & he agreed to give an appointment. So, here I am... feverishly reading all the posts on this great site! (For funnies... when the ortho dr told me my tonsils were descending 11mm, I asked him if they couldn't just remove my tonsils! Haha!)
When was your surgery? Do you have syrinx's, and what was your herniation at?
When was your surgery? Do you have syrinx's, and what was your herniation at?
Hi Lisa,
I think it really depends on who your neuro is and how much knowledge they have about Chiari. Before my decomp I went through 3 Neuros, the first 2 said that I was a-symptomatic, tell that to the dizzy spells and headaches, lol. After neuro number 2 telling me it was all in my head (no pun intended, lol) I was ready to strangle someone. Fortunately neuro number 3 agreed that I was in need of decompression. The best advice I ever received was to keep trying. If you think you need decompression, odds are you do. I don't think there is a single sane person in the world that would say "Yeah, cut my head open and poke around near my brain" unless they really are suffering from serious symptoms that have been unsuccessfully treated in every other way possible.
I think it really depends on who your neuro is and how much knowledge they have about Chiari. Before my decomp I went through 3 Neuros, the first 2 said that I was a-symptomatic, tell that to the dizzy spells and headaches, lol. After neuro number 2 telling me it was all in my head (no pun intended, lol) I was ready to strangle someone. Fortunately neuro number 3 agreed that I was in need of decompression. The best advice I ever received was to keep trying. If you think you need decompression, odds are you do. I don't think there is a single sane person in the world that would say "Yeah, cut my head open and poke around near my brain" unless they really are suffering from serious symptoms that have been unsuccessfully treated in every other way possible.
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