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UPDATE ON TODAYS NS APPOINTMENT
Well today went better than expected didnt get to see ns but his registrar, luckily for me he knw his stuff and was well informed on chiari.
My flow studies were there from my previous hospital, and registrar could clearly see that I have very restricted posteria flow. I was shown at least 6 images t1 and t2 slices and Im no expert but could see it myself, there was clear flow of fluid around the front about 2/3mm clear channel of fluid flowing that diminished to a hair strand size at the posteria of the fm.
Registrar used all correct lingo saying my herniation was compressing my brainstem and that I was very tight in the fm some of my symptoms fitted cm criteria but some did not.
Was reassured that my cm diagnosis was cauusing issues that need regular 3/6 month checks and that if I start to experience drop atacks,arm pain or severe head pain I was to contact them immediately as this would indicate blockage.
I have to wait now to see senior nl and get my bloodwork results, then go back to ns in 3 months. I was told I could go back to work but with restrictions, no heavy lifting, no prolonged bending forward and try to remove myself out of dangerous situations that could cause a blow to the head or fall, not going to be easy this working with special needs children that have severe and complex learning difficulties.
So on the whole a very different story yet again today than what I was told last week by the nl, but im still expecting them to have conflicting theories which does not help me, and im still prepared for the nl to send me for physc evaluations as he does not belive cm to be problamatic.
Thanks for reading and any responses about flow studies always appreciated
Hugs to you all
niki x x x
My flow studies were there from my previous hospital, and registrar could clearly see that I have very restricted posteria flow. I was shown at least 6 images t1 and t2 slices and Im no expert but could see it myself, there was clear flow of fluid around the front about 2/3mm clear channel of fluid flowing that diminished to a hair strand size at the posteria of the fm.
Registrar used all correct lingo saying my herniation was compressing my brainstem and that I was very tight in the fm some of my symptoms fitted cm criteria but some did not.
Was reassured that my cm diagnosis was cauusing issues that need regular 3/6 month checks and that if I start to experience drop atacks,arm pain or severe head pain I was to contact them immediately as this would indicate blockage.
I have to wait now to see senior nl and get my bloodwork results, then go back to ns in 3 months. I was told I could go back to work but with restrictions, no heavy lifting, no prolonged bending forward and try to remove myself out of dangerous situations that could cause a blow to the head or fall, not going to be easy this working with special needs children that have severe and complex learning difficulties.
So on the whole a very different story yet again today than what I was told last week by the nl, but im still expecting them to have conflicting theories which does not help me, and im still prepared for the nl to send me for physc evaluations as he does not belive cm to be problamatic.
Thanks for reading and any responses about flow studies always appreciated
Hugs to you all
niki x x x
COMMUNITY LEADER
Yes, and they have asked for a get together, but the only ones that have taken place r for those that lost their home completely and my parents were not included.....and many of the neighbors r not living in their homes yet, one stopped by yesterday and had a chat with my mom....but, it is not the same as counseling....I know they both need that.
Well, the contractor and the ins comp both r aware of my dismay....and I have been trying to get compensation for the damages, in fact I had to stop them from doing ne more work to avoid more....just crazy stuff.
I am going over there later today as they r out with errands....so I am getting a slow day...yeah : )
Thanks Niki : )
"selma"
Oh Selma thats just awful that not only have your parents experienced this tragedy but they have had their personal possesions lost and damaged, I think I would be writting a very strong letter of complaint and seeking comp for your poor mum and dad.
I agree counseling would do them good, can they talk to other neighbours who are probably feeling the same way, it may be healing for them to know that they are not alone in the feelings they are experiencing. Maybe a coffe morning or get together could be organised to get them all together.
Its just lovely thatr they have your support, love and care but you no yourself from being on this forum how much it helps to talk to people that are in the same position and the knowing that you are not alone is such a huge help.
I am glad you are almost done and think you are just amazing dealing with all this, your own medical probs but still have time to pop on hear daily and help others.
Hugs to you Selma
Niki x x x
I agree counseling would do them good, can they talk to other neighbours who are probably feeling the same way, it may be healing for them to know that they are not alone in the feelings they are experiencing. Maybe a coffe morning or get together could be organised to get them all together.
Its just lovely thatr they have your support, love and care but you no yourself from being on this forum how much it helps to talk to people that are in the same position and the knowing that you are not alone is such a huge help.
I am glad you are almost done and think you are just amazing dealing with all this, your own medical probs but still have time to pop on hear daily and help others.
Hugs to you Selma
Niki x x x
COMMUNITY LEADER
Hi...it is the area of the foreman magnum...I know my odontoid was displaced and with the herniation and the over crowding when the tonsils swelled it caused the CSF obstruction to worsen, and yes that is when the drop attacks happened.
Not sure if it also was just an increase of CSf production and my body just had no where to go with it and my head just felt like everything inside was swollen...lol....but just walking up the steps could get it all going.....
It takes way too long here too...so sad that medical professionals move at a snails pace....
My parents r getting better slowly...my mom is trying to accept that she may never get back most of her clothes that the contractor lost (delv to wrong home)...all her good slacks, and several coats and jackets...she is very upset about it.
I have to get an estimate to replace the clothes and items they broke while "cleaning"...and I say "cleaning" bcuz my sister's and I had to re clean everything as they did a horrible job.
We r also shopping for new curtains as her old ones were torn by the windows breaking.....so, once that is done and the new love seats arrive the place will look great!!
I am still concerned that they have yet to have counseling......I think they need it, they felt they were fine, but still have bad days...so, I am working on that too....
But, as the work load finally shortens so does the time I will have to spend there....more time on here : )
I am ok....tired of it all.....but, so happy we r almost done.
"selma"
Interesting theory Selma this would add up just wish I could have that cine mri while walking fast on a treadmill as im positive it would show up something.
You mention inflamation and that you experienced this prob, where would this be, sorry for my ignorance, was it this that eventually caused your drop attacks that then led to your surgery.
Rang my ns secretary today and not all bloodworks results in yet, they assured me that they will contact me asap. So waiting patiently over here Honey it takes an absloute age.
How are you doing, and how are your parents doing, I pray you are all ok and think of you all daily.
Niki x x x
You mention inflamation and that you experienced this prob, where would this be, sorry for my ignorance, was it this that eventually caused your drop attacks that then led to your surgery.
Rang my ns secretary today and not all bloodworks results in yet, they assured me that they will contact me asap. So waiting patiently over here Honey it takes an absloute age.
How are you doing, and how are your parents doing, I pray you are all ok and think of you all daily.
Niki x x x
COMMUNITY LEADER
Regardless how they categorize ur symptoms, u know how u get and if it is not safe to drive, u also know not to...so, do not worry over that flaw in their ways of determining what the cause is, u have symptoms that need to be addressed either way.
It sounds like u have an inflammation that causes more of a blockage after u do something that may be causing this to happen....I know the feeling all too well.....
Keep safe : )
"selma"
Thanks Honey.
Yes im a little worried about the csf flow myself as walked dog yesterday and was incoherent for about 35mins afterwards, just did not no what to do with myself, this also happened the day b4 when I helped my mum strip wallpaper then brush up, again my head pounds then I go all confused not aware of my spacial surroundings, with exteme cog fog.
I am actually thinking of writing to the ns as there are so many contraversial things being said. I just want to clear it up as I have been told now that I have to report my chiari to our dvla where we get our driving lisences from. But how can I do this if they are still questioning if it cm that causing my probs???????
Will keep you posted
Niki x x
Yes im a little worried about the csf flow myself as walked dog yesterday and was incoherent for about 35mins afterwards, just did not no what to do with myself, this also happened the day b4 when I helped my mum strip wallpaper then brush up, again my head pounds then I go all confused not aware of my spacial surroundings, with exteme cog fog.
I am actually thinking of writing to the ns as there are so many contraversial things being said. I just want to clear it up as I have been told now that I have to report my chiari to our dvla where we get our driving lisences from. But how can I do this if they are still questioning if it cm that causing my probs???????
Will keep you posted
Niki x x
COMMUNITY LEADER
OIC...gottcha on the blood work now...I understand that they would want to test for thrombosis, but I thought that was done if surgery was scheduled?.....ur drs seem to be keeping an open mind, that is a good sign : )
I am glad u r being mindful with ur driving, but a real drop attack there is no warning...u just go out...and u have issues very similar...so do be careful.
Not knowing how things r done in ur country, I am perplexed by the CSF issue...to me u have a problem and ur symptoms are a demonstration of that.
Hang in there and do keep me posted
"selma"
Thanks selma,
The csf flow was not blocked completely but they said it was very restricted at the back as I explained it flows beautifully around the anterior a lovely very visible channel of fluid that just dimishes to the faintest hairline size around the back, but this aside I guess they think that this tiny amount is enough.
Over the past 6 months im beginning to struggle when I exert myself, I get a horrid pain in my head get very disorientated. But it does calm when I rest.
I got the feeling that they were about to say dont drive but because I do air caution with this they were happy to let me use my judgement.
About a year ago now I did have a what I called a leg collapse, I was in work with a child walking back to class and all of a sudden I was on the floor but just my left side, it was split second and I was actually looking around thinking somebody had pushed me over, very common in my job. But this has not happend since. I did explain that I have now had 7 funny episodes since October I wake up ok ish, do housework, maybe walk dog then Bam I go all funny,cant concentrate my whole body shakes, then goes like jelly and I literally have to lie on the nearest surface, I then sleep like a baby for around 3 hrs and woke up groggy but ok.
Selma you are just wonderful and such a mine of information I can never thank u enough.
The registrar on Monday was explaining that some of my blood works being tested were for thrombosis and to see if I need warafin and explained that they needed to no this because it causes probs if they suggest surgery.
The csf flow was not blocked completely but they said it was very restricted at the back as I explained it flows beautifully around the anterior a lovely very visible channel of fluid that just dimishes to the faintest hairline size around the back, but this aside I guess they think that this tiny amount is enough.
Over the past 6 months im beginning to struggle when I exert myself, I get a horrid pain in my head get very disorientated. But it does calm when I rest.
I got the feeling that they were about to say dont drive but because I do air caution with this they were happy to let me use my judgement.
About a year ago now I did have a what I called a leg collapse, I was in work with a child walking back to class and all of a sudden I was on the floor but just my left side, it was split second and I was actually looking around thinking somebody had pushed me over, very common in my job. But this has not happend since. I did explain that I have now had 7 funny episodes since October I wake up ok ish, do housework, maybe walk dog then Bam I go all funny,cant concentrate my whole body shakes, then goes like jelly and I literally have to lie on the nearest surface, I then sleep like a baby for around 3 hrs and woke up groggy but ok.
Selma you are just wonderful and such a mine of information I can never thank u enough.
The registrar on Monday was explaining that some of my blood works being tested were for thrombosis and to see if I need warafin and explained that they needed to no this because it causes probs if they suggest surgery.
COMMUNITY LEADER
[Is restricted flow dangerous? or just a warning that things may become alot worse than they are already, should I avoid anything now? ]
U asked the above question.....yes, as the CSF allows the signals from the brain to travel to where they need to go...down the spinal cord to what ever part of the body the signal is for.
With CSF blockage u can start having drop attacks, it works like a light switch....the CSF blocks and u go out for a brief few seconds, but the signals do not get to ur legs to hold u up, so when u come back, u r mid fall....and confused as to y.....but u still can not react normally....now signals to breath, and ur heart to pump etc...also u will not feel it coming on as it is nothing like passing out.
If u feel u may be a candidate for this...do not drive at all....I had drop attacks and even at almost 2 yrs post op still do not drive....
"selma"
U asked the above question.....yes, as the CSF allows the signals from the brain to travel to where they need to go...down the spinal cord to what ever part of the body the signal is for.
With CSF blockage u can start having drop attacks, it works like a light switch....the CSF blocks and u go out for a brief few seconds, but the signals do not get to ur legs to hold u up, so when u come back, u r mid fall....and confused as to y.....but u still can not react normally....now signals to breath, and ur heart to pump etc...also u will not feel it coming on as it is nothing like passing out.
If u feel u may be a candidate for this...do not drive at all....I had drop attacks and even at almost 2 yrs post op still do not drive....
"selma"
Oh Honey I truly hope they dont go down that road with you, stay firm and strong and be prepared to fight, I have been fighting for 3 years now and dont believe for a second that I have this somotization disorder.
You need to be asking for a brain mri, cine mri lumbar and thorasic mri, this will see if you have syrinx, tetherd cord, scolosis and will check your csf flow!!!! good luck with it and keep us posted on how you get on. you can always pm me if you want too Hun.
Take care
Niki x x x
You need to be asking for a brain mri, cine mri lumbar and thorasic mri, this will see if you have syrinx, tetherd cord, scolosis and will check your csf flow!!!! good luck with it and keep us posted on how you get on. you can always pm me if you want too Hun.
Take care
Niki x x x
Aww very encouraging news Niki Im glad in a way your at last getting some where. Its just not fair thats its Chiari . I hope that your NS agrees with what you say Im preparing my notes for my visit on Thursday I doubt I will get anywhere but il try lol I hope they do more test just soi know am not going mad lol
Thanks for reply Selma,
Im hopeful that this is this case and tbh the registrar seemed more informed than the ns, he told me you have cereballar damage you have cm so of coure this is the case. Like I said he has told me what to watch out for that could indicate blockage. At this point I dont not inform him that I have started to get pain in my left arm, but it has only happend 4 times in the past fortnite, so will keep eye on this.
I am however struggling with symptoms on physical activity, if I overdo things or walk the dog im getting head pain but at the top of my head, I get all confused and this lasts until I have rested and guessing my blood flow has calmed. then I seem to be ok again.
Looking at my scans I really noticed that at the back there is very little room it literally looks like you could just squeeze a hairstrand between the space. Icannot believe my 1st hospital said I had normal csf flow without restriction.
Registrar said yesterday that job wise I would be suited to a desk job and that I really have to restrict my driving when im feeling confused and unbalanced.
Is restricted flow dangerous? or just a warning that things may become alot worse than they are already, should I avoid anything now?
niki x x
Im hopeful that this is this case and tbh the registrar seemed more informed than the ns, he told me you have cereballar damage you have cm so of coure this is the case. Like I said he has told me what to watch out for that could indicate blockage. At this point I dont not inform him that I have started to get pain in my left arm, but it has only happend 4 times in the past fortnite, so will keep eye on this.
I am however struggling with symptoms on physical activity, if I overdo things or walk the dog im getting head pain but at the top of my head, I get all confused and this lasts until I have rested and guessing my blood flow has calmed. then I seem to be ok again.
Looking at my scans I really noticed that at the back there is very little room it literally looks like you could just squeeze a hairstrand between the space. Icannot believe my 1st hospital said I had normal csf flow without restriction.
Registrar said yesterday that job wise I would be suited to a desk job and that I really have to restrict my driving when im feeling confused and unbalanced.
Is restricted flow dangerous? or just a warning that things may become alot worse than they are already, should I avoid anything now?
niki x x
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Well this sounds encouraging....yes?..I am excited for u as it sounds like the ones that will treat CM have a diff opinion from the one that dx's....so, no worries there. I feel u can trust that the NS and his Registrar will not listen to the NL if they have formed their own opinion already..which it sounds like they have.
Soooooooo it sounds like u did get something from the trip????
"selma"