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Coexisting Conditions
As I am just beginning my diagnostic journey, I am interested in compiling a list of all other conditions that are common to people who have Chiari and what type of tests are usually done to diagnose or rule those conditions out.
(Another short one Selma :)
Thanks
(Another short one Selma :)
Thanks
COMMUNITY LEADER
CSF obstruction can lead to the formation of a syrinx....with the obstruction u could develop drop attacks and breathing issues....a number of more severe symptoms then HA's, balance and numbness....
For surgery, it all depends on the surgeon and how they like to work...mine told me not to cut my hair and to pull it up into a pony tail...the back of my head was shaved.....
Some Drs do a very minimal removal of hair...less then was taken off my head....but their incision was smaller too....I had tissue from my scalp harvested for my dura patch so I had a little more going on...and my scar is longer then most.
LOL...I will accept a friend invite...
Maybe she will come around in time. I think she is still recovering from the fact that she had brushed my symptoms aside and said I didn't need to see neuro. Clearly, I went AGAINST her advice and went anyway and clearly she was wrong. Now I guess she feels the need to re establish her dominance rather than admit she is human and can't know everything. Would have been great for her to have apologized for not taking me seriously or at least acknowledged that I made a good call, but if her pride won't allow that, then t least she should be more open to my suggestions as a result.
I know this is off the original topic, but once they find out you have significantly reduced CSF flow, how urgently do they usually want to do something about it? What are the dangers if waiting too long to do something to restore flow? I'm still in doctor limbo, waiting for appt in April with local NS (unless he calls sooner after seeing results) and still trying to get appt with specialist. In the mean time, symptoms are still as bad or worse and I just want to know realistically, without sugar coating, how concerned I need to be.
Also saw my pain docs yesterday and it sounds like thy want to stop seeing me now too. Unfortunately, I have been on pain medicine since my back surgery du to all of the problems I continue to have. Now that I have chiari diagnosis, they don't feel comfortable treating my pain because they not understand the condition. They said they would wait Until I got in with specialist or whatever, but will chiari specialist be willing to treat not only te pain from my chiari, but also my back? I feel like all th docs want to abandon me now and adding my excruciating back pain back into the mix if no one wants to continue to treat me/prescribe, may really send me over the edge. One of the meds I'm on is a narcotic and I certainly can't be driving 2 hours to specialist every month to get refills. How do people with severe chronic pain manage all that if their doctor us hours away? I may expect too much of the world, but what happened to researching the conditions your patients have and/or work WITH their specialists as a team to treat them? I remember one of the babies born into my practice had osteogenesis imperfecta. As the clinical nurse manager, I researched the hell out of it AND trained my entire staff on everything they needed to know to keep him safe and make the staff and his parents comfortable with him being in our care. I didn't just kick him out or refuse to see him because his bones could be broken if we even touched him wrong. We aren't that fragile, yet everyone seems afraid to be involved. (Sorry, venting again)
Random question: for surgery, do they always shave your entire head or just parts of it or what?
Sorry for yet ANOTHER long one, but now we are weaned down to just one :)
Maybe you should allow me to be your friend so I can send you my novels in PM lol
I think of it as therapy for my uncooperative fingers and hands :P
I know this is off the original topic, but once they find out you have significantly reduced CSF flow, how urgently do they usually want to do something about it? What are the dangers if waiting too long to do something to restore flow? I'm still in doctor limbo, waiting for appt in April with local NS (unless he calls sooner after seeing results) and still trying to get appt with specialist. In the mean time, symptoms are still as bad or worse and I just want to know realistically, without sugar coating, how concerned I need to be.
Also saw my pain docs yesterday and it sounds like thy want to stop seeing me now too. Unfortunately, I have been on pain medicine since my back surgery du to all of the problems I continue to have. Now that I have chiari diagnosis, they don't feel comfortable treating my pain because they not understand the condition. They said they would wait Until I got in with specialist or whatever, but will chiari specialist be willing to treat not only te pain from my chiari, but also my back? I feel like all th docs want to abandon me now and adding my excruciating back pain back into the mix if no one wants to continue to treat me/prescribe, may really send me over the edge. One of the meds I'm on is a narcotic and I certainly can't be driving 2 hours to specialist every month to get refills. How do people with severe chronic pain manage all that if their doctor us hours away? I may expect too much of the world, but what happened to researching the conditions your patients have and/or work WITH their specialists as a team to treat them? I remember one of the babies born into my practice had osteogenesis imperfecta. As the clinical nurse manager, I researched the hell out of it AND trained my entire staff on everything they needed to know to keep him safe and make the staff and his parents comfortable with him being in our care. I didn't just kick him out or refuse to see him because his bones could be broken if we even touched him wrong. We aren't that fragile, yet everyone seems afraid to be involved. (Sorry, venting again)
Random question: for surgery, do they always shave your entire head or just parts of it or what?
Sorry for yet ANOTHER long one, but now we are weaned down to just one :)
Maybe you should allow me to be your friend so I can send you my novels in PM lol
I think of it as therapy for my uncooperative fingers and hands :P
COMMUNITY LEADER
She will feel that way only if she is insecure and has an ego issue...otherwise she should be open to see if there is merit to what u r suggesting....JMHO
Tring to convince the doctor of that is the challenge. She is to worried that I am trying to tell how to do her job rather than taking it as I am sharing what I have learned. Just have to get used to being frustrated I guess.
COMMUNITY LEADER
Children are more flexible then adults even if they have EDS hypermobility as we age our muscles tend to tighten up to help hold us together where the collagen is not doing it's job...so we r less likely to wrap our legs around our heads but the ROM if someone moves our leg may get closer to being wrapped around it then u might realize....
And it is one reason we hurt so much, those muscles work hard and we tire out as a result too....
LOL>..no worries... : )
I have had recent MRI of thoracic and lumbar due to back issues so hopefully, unless it was the same guy that read the CTs, they would have seen something. I will look at them later to see how they look. Just have not found the time or energy with dr appts every day this week. Trying to convince my doctor to believe I may have one of these other diseases is the issue. Even though she was completely wrong about me not needing to see neuro, she is still reluctant to listen. Almost had to force her to do some of the blood work or even consider that I might have EDS without major flexibility even though I was Dx with arthritis in my teens etc. I could put my legs behind my head then, just not now if u paid me. Guess we will see what blood and echo says and go from there.
I didn't response to one of the other posts so we could wean ourselves down from three.
I didn't response to one of the other posts so we could wean ourselves down from three.
COMMUNITY LEADER
Hi...lol..yes it was a long one...haha....no worries...just takes me longer to read it...lol...
Joint pain can be from Ehlers-Danlos...so do check into that as it is related to Chiari...I did not think I had it as I never saw myself as a bendy or double jointed person, but that is bcuz my muscles are so tight trying to hold me together....but, I do have issues and I can be moved in strange positions,,,I just can not do it myself...ROM at PT they claim was great even further then most...but I can not move like that on my own...u know? Not sure y PT did not know EDS could be an issue .
Do not jump for joy that no syrinx was seen, keep in mind this is a MRI of the cervical spine and a syrinx can also be found in the thoracic and lumbar spine...so it is only ruled out in the cervical spine .
I was sent to a local Rheumatoid Dr to rule out suspected LUPUS...mayb u can get ur PCP to say they suspect that ....u have joint pain...just a thought...
I often wondered that too, who did I tick off,...oh well we may never know...lol..
Not really looking for treatment at this point. Mostly looking for doctors to help me r/o other thing and still trying to find the cause of my severe joint and back pain. I did get my cervical MRI/flow study results today, even before the NS got them lol
The cervical MRI/Cerebral Spinal Fluid Flow Study confirmed 9mm Chiari Malformation Type I and showed significantly reduced CSF flow through the cerebral aqueduct and posterior to the cerebellum as compared to anterior flow patterns. I assume this is the likely cause for some of my weird debilitating symptoms and certainly explains my headaches. No syrinx was seen at this time so there is at least ONE positive thing! I also assume the decreased flow likely means they will recommend surgery to restore the flow and to avoid future complications with syrinx and other issues? I guess I won't know for sure until I see neurosurgeon and/or Chiari specialist. So far, appointment with local NS is 4/16. Not sure if he will want to see me sooner once he gets results or not. I am also trying to get an appointment with Dr. Oldfield at UVA as it seems he is one of the good specialists in the field without having to travel across the country. I have appointments for labs and echocardiogram next week to start try to rule out some conditions that may coexist (kind of forced my PCPs hand here). My PCP also is scheduling me an appointment with a Retina specialist to check my eyes (even though I told her I need to be seeing a neuro-ophthalmologist). She wants me to see the retina specialist first and let him send me to further specialty if needed. I will follow her direction this once, but eventually I know I will need to see who I told her I need to see in the first place. My doctors are on my nerves right now. If I had continued listening to them, I still would not even have a diagnosis. The only reason I have gotten this far is because I went AGAINST what they told me to do (or not to do) and referred myself to neuro and made neuro do the MRI. I'm not sure when they might admit that maybe they need to listen to me for a change. How many times do I have to prove them wrong in order for them to listen?? At this point, I have probably done more research on Chiari than most doctors who do not specialize in it. I also have to get some autoimmune things ruled out but out here most Rheumatologists will not see me unless my primary can diagnose me with something they deal with first. I need to find one who is willing to play the rule it all out game if the PCP is unsuccessful. Until then I will attempt to be patient waiting for my NS appt and TRY not to annoy my docs too much by telling them how they need to do their job. I'm just so tired of wasting time and money jumping through their hoops that lead absolutely no where when I told them what needed to be done in the first place. I don't expect them to bow down and do what I tell them, but at least listen and take into account what I'm telling them and that as of late, my track record has been much better than theirs.
Who the heck did I make angry in a past life??? Ugh.
Uh oh, that was another long one. Maybe I should have started another post lol.
The cervical MRI/Cerebral Spinal Fluid Flow Study confirmed 9mm Chiari Malformation Type I and showed significantly reduced CSF flow through the cerebral aqueduct and posterior to the cerebellum as compared to anterior flow patterns. I assume this is the likely cause for some of my weird debilitating symptoms and certainly explains my headaches. No syrinx was seen at this time so there is at least ONE positive thing! I also assume the decreased flow likely means they will recommend surgery to restore the flow and to avoid future complications with syrinx and other issues? I guess I won't know for sure until I see neurosurgeon and/or Chiari specialist. So far, appointment with local NS is 4/16. Not sure if he will want to see me sooner once he gets results or not. I am also trying to get an appointment with Dr. Oldfield at UVA as it seems he is one of the good specialists in the field without having to travel across the country. I have appointments for labs and echocardiogram next week to start try to rule out some conditions that may coexist (kind of forced my PCPs hand here). My PCP also is scheduling me an appointment with a Retina specialist to check my eyes (even though I told her I need to be seeing a neuro-ophthalmologist). She wants me to see the retina specialist first and let him send me to further specialty if needed. I will follow her direction this once, but eventually I know I will need to see who I told her I need to see in the first place. My doctors are on my nerves right now. If I had continued listening to them, I still would not even have a diagnosis. The only reason I have gotten this far is because I went AGAINST what they told me to do (or not to do) and referred myself to neuro and made neuro do the MRI. I'm not sure when they might admit that maybe they need to listen to me for a change. How many times do I have to prove them wrong in order for them to listen?? At this point, I have probably done more research on Chiari than most doctors who do not specialize in it. I also have to get some autoimmune things ruled out but out here most Rheumatologists will not see me unless my primary can diagnose me with something they deal with first. I need to find one who is willing to play the rule it all out game if the PCP is unsuccessful. Until then I will attempt to be patient waiting for my NS appt and TRY not to annoy my docs too much by telling them how they need to do their job. I'm just so tired of wasting time and money jumping through their hoops that lead absolutely no where when I told them what needed to be done in the first place. I don't expect them to bow down and do what I tell them, but at least listen and take into account what I'm telling them and that as of late, my track record has been much better than theirs.
Who the heck did I make angry in a past life??? Ugh.
Uh oh, that was another long one. Maybe I should have started another post lol.
COMMUNITY LEADER
Keep in mind NOT ALL NS's have Chiari as a specialty, just being a NS does not make one a Chiari specialist...that would be the same as saying since the mechanic down the street is a good mechanic and does all sorts of car repairs u would go to him for a foreign car transmission....u wouldn't u wouldn't even go to one that specializes in transmissions, u want one that specializes in foreign car transmissions....u know?
The problem with conditions like Chiari there are things that can be affected when treated for other things if u do not know the way all of them can be connected....
IE- u go to a Dr for a disk issue, u need surgery....so u go, they install some hardware....
Now u can not get MRI's and the like bcuz of the hardware...u may also have an issue with the hardware if u also have EDS....it can get complicated...and for a Dr to refuse treatment of nekind if he is not up on Chiari may be a good thing....JMHO
Most doctors want to blame all symptoms on Chiari because its not their specialty so they won't have to deal with it. NS on the other hand want to blame none of the symptoms on Chiari because it IS their specialty and then they WOULD have to deal with it. I'm still looking to find THE right Chiari specialist, but it's hard because I am still waiting on results and tests to find out about syrinx, CSF obstruction, etc. I'm the man time, no one else wants to treat us because we have .... GASP. .... Chiari! For God's sake, it's not leprosy. What harm would it do to do an exam and run some tests to try to diagnose or rule some other things out? Did I miss the fine print on the "patient rights and responsibilities" that said "unless you have a Chiari malformation"?
COMMUNITY LEADER
It was actually a Rheumatoid Dr that I was seeing that found the Chiari and as soon as it was found he dropped me as a patient, and I tried going back to have other issues looked and and I could not get in bcuz I have a neuro issue...ugh....he never DX'd my EDS the Chiari NS did....so I know what u mean...it can be quite frustrating and draining....
I feel there are more Drs not up to a challenge then there are Drs that know Chiari and all it's related issues/conditions.
I guess I'll start with Hashi's then maybe EDS. I have some symptoms that make me think I might have a mild form of it, but other symptoms I don't have at all. While it could explain some of my severe chronic pain issues, not fitting a "textbook" case, likely have the hypermobility kind that does not have a genetic test to prove it and trying to convince a doctor to look further into it seems like a battle I'm not sure I can fight right now. It seems like everything with my body is a constant fight of convincing people to look further or believe. It's wearing me down. I know that if I hadn't been fighting, I would not have gotten this far, but maybe I just need a break lol The first rheumatologist I tried to get an appt with said, "take care of the brain thing first, then come see me". Really? How would you like me to take care of it? Cut my head off? Basically I translated it to mean, she is not up for the task of challenging her medical mind to solve the puzzle of my illness. Have to find one who is seriously up to the challenge of taking the time and energy needed to listen and research and rule out and diagnose until every symptom is at least semi accounted for....some day! For now, let me take care of my brain....
COMMUNITY LEADER
No...sorry...it was just things he knew from what I told him about myself....but the ones I listed as co-existing are all things that were tested for and ruled out....
Oh, I thought u meant he had a normal battery of tests he ran on everyone to rule certain things out.
COMMUNITY LEADER
Not sure what list u mean....the tests were according to what was going on with me....so, for each of us some of them will be only for us, but the list of items that can co-exist are all things we should be tested for as well as conditions with similar symptoms like Lymes, Lupus and MS.
COMMUNITY LEADER
I did that as well, it did help...in fact the Dr I wanted to see sent me labs to have done....it was a great help....so many of them will help u if u ask. : )
Such a journey. Still working on getting appt with specialist in my area. In the mean time, local NS is getting some of the testing done. I figured if I could have PCP draw any necessary labs etc, I would have more pieces of the puzzle to take with me to see the specialist.
COMMUNITY LEADER
Conditions that co-exist :
Syringomyelia
Tethered Cord,
ICP
POTS
Ehlers-Danlos Syndrome
Sleep apnea
cerviocranial instability
We can also have ne auto immune issue but many have Hashimoto's thyroiditis.
Connective tissue disorders... and GERD/ acid reflux....bowel and bladder issues, IBS....vision disturbances.
A good NS that is a Chiari specialist should know what to test for...my NS DX'd me with most of the related issues I have.
I just found out I may have a Tethered Spinal Cord and have been reading online and find it's fairly common with CM patients, in fact some Neuros beleive it causes CM.
I have Chiari along with POTS (which are associated). This is just my personal experience, but I am sure there are many other conditions as well.
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