Hi All, I'm new here, thanks for having me aboard! I did a quick search of the discussions and didn't see this mentioned, apologies if it's already covered somewhere.
Has anyone else been previously diagnosed with other things like Thoracic Outlet Syndrome or Rheumatoid Arthritis and did those diagnoses still prove valid after your Chiari diagnosis?
I am wondering how many of the symptoms I've had for years may have been a result of Chiari type 1 / syringomyelia all along and not these other things. Curious to see if anyone else has had similar diagnosis history?
Hi Abby, thanks for your response. I've never been tested for EDS (just learned about it for the 1st time this week!) I had previously been tested for Lupus but that was negative. I don't have the flexible/double jointed thing though - do all EDS folks have that?
In the past I have also been diagnosed with TMJ, knock knees, flat feet. I am capable of spraining my ankle while walking in flat shoes on a flat surface by tripping over my own feet, so you could say I have some motor issues! lol Also have had chronic sinus infections, asthma, palpitations - now that i think of it, quite a list.
I too had growing pains real bad as a kid - family kind of wrote me off as a malingerer, so I learned to shut up about it and just deal. I'm guessing a lot of folks here may be able to relate to that, based on the little I've read about Chiari/Syringomyelia this week.
I was diagnosed and had ablation therapy for a Thoracic Outlet post CM Surgery. It wasn't severe enough for surgery, thank goodness. Ablation was painful but stopped the pain. I have several additional disorders related to or caused by CM1,( which I am really a 1.5). POTS, EDS, Chronic IH, DDD, Hemipledgic Complex Migraines, Geniculate Neuralgia, Chronic Pain, Vision problems & an Adjustment Disorder. You have to wonder who personally came up with the diagnosis Adjustment Disorder. I know the process. I would like to know who recommended it.
I was also misdiagnosed for too many illness and disorders to count in 4 years & treated for some of them. I feel like we are guinea pigs for clueless Dr's. They would rather throw medication at us than try and find a correct diagnosis or just say they don't know.
Hi Tracy, OK i just had to Google half of those - you've really been through it haven't you? And yeah, the Adjustment Disorder thing, - really?
I've heard the old saying between doctors that "If you hear hoofbeats, think horse, not zebra" but seriously. Some of us apparently are Zebras. Thinking I should stock up on Zebra print clothes to wear to medical appointments. See if anyone gets the joke ;-)
I was diagnosed with congenital torticolis when I was born, later degenerative disc disease, chronic migraines, chronic bladder infections, chronic sinus infections, chiari, sjogren's, osteoarthritis, severe osteoporosis, fibromyalgia.
That is funny....I can promise they wouldn't even begin to "get it". That is the sad part.
You know NH Mom....I was diagnosed too late and almost became a quadriplegic. That is why I have such difficult post surgical symptoms and associated disorders. I wish more than anything Dr's would be able to help others sooner, so no one has to go through what I did & do daily. I try so hard to make all of this into something positive but it's difficult. Even 7+ years post op I still struggle. Some days worse than others. My headaches and chronic pain is the worst. I am a great Patient Advocate and have a background in managed healthcare , but it does me no good when I have to go to the ER and have Dr's and nurses and specialists look at me like I am crazy. One specialist literally told me recently "You are screwed." Did he think I didn't know that? I was devastated and drove to my PCP's crying.
I just want to shake some Dr's and say do you not know anything?
NHMom said:
Hi Tracy, OK i just had to Google half of those - you've really been through it haven't you? And yeah, the Adjustment Disorder thing, - really?
I've heard the old saying between doctors that "If you hear hoofbeats, think horse, not zebra" but seriously. Some of us apparently are Zebras. Thinking I should stock up on Zebra print clothes to wear to medical appointments. See if anyone gets the joke ;-)
Does your daughter still have problems with it? All through the years they thought my neck pain was because of the scar tissue from the physical therapy I had as a baby, but once they did a MRI, they discovered the chiari and then felt like that was the reason.
Abby said:
Elizabeth, my 27 year old daughter was born with torticolis. She is a hair salon owner now and has symptoms of hypermobility. My other daughter has the same knee pops out of place that mine does. I sure hope they do not follow in my heath struggles, but I am thinking they might.
elizabeth said:
I was diagnosed with congenital torticolis when I was born, later degenerative disc disease, chronic migraines, chronic bladder infections, chronic sinus infections, chiari, sjogren's, osteoarthritis, severe osteoporosis, fibromyalgia.
I had surgery for thoracic outlet and I haven’t ask my NS if the chiari might have been my problem,ribs removed on both sides.The rib sections was just one of the things I went trough in a span of 27 years of suffering.I feel like this is finally the right diagnosis,things are so much better than before.It’s a shame that patients have to endure these surgeries and pain without help.We should be able to make Dr.s aware that the way chiari is diagnosed is wrong the herniation thing is not that importan, but the symptoms are, and if the right tests were done it would help.In my case the tonsil was one of the biggest things but I had a caniectomy,laminectomy,and duraplasty and I was supposed to have been boarderline things were more serious than we exspected,herniation does not need to the guideline for chiari I’m living proof of that fact!
I have two sons and one has migraines, and one has the neck pain, degenerative disc disease ( at 22!), and I also fear they have the issues I have. I actually would rather them not know if they have the things I have....unless it's absolutely necessary.
Abby said:
Elizabeth,
If she does, she does not complain. I know she has rotor cuff problems and she will get catches in her neck, but like I said, she never complains much. I wish she would have a MRI, but she is grown and asking her to get one is like pulling teeth.
elizabeth said:
Does your daughter still have problems with it? All through the years they thought my neck pain was because of the scar tissue from the physical therapy I had as a baby, but once they did a MRI, they discovered the chiari and then felt like that was the reason.
Abby said:
Elizabeth, my 27 year old daughter was born with torticolis. She is a hair salon owner now and has symptoms of hypermobility. My other daughter has the same knee pops out of place that mine does. I sure hope they do not follow in my heath struggles, but I am thinking they might.
elizabeth said:
I was diagnosed with congenital torticolis when I was born, later degenerative disc disease, chronic migraines, chronic bladder infections, chronic sinus infections, chiari, sjogren's, osteoarthritis, severe osteoporosis, fibromyalgia.
I’ve had thoracic outlet syndrome on and off for years. No one Ever associates anything with chiari (doctor). I’ve had numerous things that I’ve had going on before chiarimdx. once they found chiari and I had the surgery it got a little better. I also was diagnosed with lupus at same time at Cleveland clinic.
As far as I know I haven't been checked for that. However, with my recent diagnosis of fibromyalgia, my doctor never even told me of that, I just caught it when I was checking all the diagnosis codes. I'd almost rather not know myself. I am not having surgery, as the neuro surgeon said that until I started having neurological symptoms he'd rather me just take the pain meds and muscle relaxers because he thinks those things will have less than a 50% chance of resolving with surgery, and could possibly get worse.
Abby said:
Elizabeth, after seeing what I have gone through, both girls are not wanting an MRI at this time. Degenerative disc disease goes along with Ehlers Danlos Syndrome, have you been checked?
elizabeth said:
I have two sons and one has migraines, and one has the neck pain, degenerative disc disease ( at 22!), and I also fear they have the issues I have. I actually would rather them not know if they have the things I have....unless it's absolutely necessary.
Abby said:
Elizabeth,
If she does, she does not complain. I know she has rotor cuff problems and she will get catches in her neck, but like I said, she never complains much. I wish she would have a MRI, but she is grown and asking her to get one is like pulling teeth.
elizabeth said:
Does your daughter still have problems with it? All through the years they thought my neck pain was because of the scar tissue from the physical therapy I had as a baby, but once they did a MRI, they discovered the chiari and then felt like that was the reason.
Abby said:
Elizabeth, my 27 year old daughter was born with torticolis. She is a hair salon owner now and has symptoms of hypermobility. My other daughter has the same knee pops out of place that mine does. I sure hope they do not follow in my heath struggles, but I am thinking they might.
elizabeth said:
I was diagnosed with congenital torticolis when I was born, later degenerative disc disease, chronic migraines, chronic bladder infections, chronic sinus infections, chiari, sjogren's, osteoarthritis, severe osteoporosis, fibromyalgia.
Janice, I really believe that all the things wrong with me are related to the chiari, whether the doctors want to acknowledge it or not. For instance, I was diagnosed with severe osteoporosis in my early 30's. I know there's a study of children with chiari developing rickets, which is related to osteoporosis. When my Vitamin D level was tested, my levels were so low they almost didn't register. I've already decided to donate my body to science when I die so MAYBE someone can figure out why my body is "broken."
Abby said:
Sorry Janice you have to endure another diagnoses like lupus. So thankful your surgery took care of some of the other issues your having. So glad your here with us. Let us know how your doing.
Janice said:
I've had thoracic outlet syndrome on and off for years. No one Ever associates anything with chiari (doctor). I've had numerous things that I've had going on before chiarimdx. once they found chiari and I had the surgery it got a little better. I also was diagnosed with lupus at same time at Cleveland clinic.