Thanks Natty, glad to hear you are bit better today that the children are in nursery, my heart goes out to you xx
Btw did you have a report with Kjetil ? or did you make your own notes to take to your neurologist?
We re thinking to have him look at the old scans before the MRI incase he suggests something that could be added,
We ve just received the clinic letter from our neurologist: commenting on ’ episodes of acute asthenia’ she has sudden drops of energy where her energy completely goes for about a few minutes, even doing nothing. He says ’ the episdoes of acute asthenia are very well characterised’ not sure what that means, that they are happening regularly?‘v helpful to explore possibility that there is some dysautonomia associated with these’ … Pots to be properly diagnosed - to have tilt table test and blood tests for pituitary failure and adrenal insufficiency’
I am wondering if these all could be the vagus nerve trapped in ES?
Hi Peony,
Interesting thought about vagal involvement in your daughter’s unusual symptoms. It certainly bears looking into!
I think you’re correct in the translation you gave to the neurologists report regarding acute asthenia episodes being well characterized i.e. it’s not something that’s happened just once but is an ongoing problem.
I’m so glad Natty has given you some good leads & I hope you begin to find solid answers for your daughter’s health challenges.
thank you Isaiah, feel very lucky that we stumbled on this group, you are all so supportive, I second Natty’s comment, so good of you all to stick around even though you are through it, thankyou
Just a guess but a quick read up on asthenia suggests that it can be perceived weakness, or actual weakness, maybe he feels it’s genuine weakness & not just a feeling? will be thinking of you both…
yes he does know it is an physcial feeling Jules, she had a reaction to a medicine in a & e last year, metacopromide - when her headache went so even worse suddenly after the dentist, and I knew somehting was not right, she would not respond, afterwards she felt as though could see what was happening but couldn’t move, or talk - this is the closest that is happening now, something to do with ‘relaxing’ letting go, like that moment before you go to sleep, but it is lasting far longer. We ve got everything booked now, MRI upright ( doing head again, all cervical and flex & extend, and lumbar) in fact they have sent the sequence - Ill post it, Tilt table has come through, just waiting the blood tests ( pituitary & adrenal) she has had cortisol morning, and it was okay. Going to have a zoom with Kjetil Larsen ( from Natty) on monday and look at the old scans generally get his impression incase anything can be added to the MRI. I can not believe we have only now come across more compressions like theTOC and one in the shoulder, ofcourse we had the nutcracker ( renal) and they all, like the ES, are working on the same principal - blocking something usually a vein, causing a near or distant problem, just can’t get over why this is not more known. Like Isaiah said, everyone is ’ made’ slightly differently, doesnt take much for a glitch - either naturally or accident, or growing ( as in a child) things change…
Back pain could be rheumatic, or could be auto immune from the compression ?? This all feels such a night mare, we never thought the medical would be so unknown, having had no involvment until this, we never really needed to go the doctor
here s the sequence for MRI - do you think they might see the styloids? have said it will go all round not just from the back
Brain – Sag T , Ax T2 , Cor FLAIR , Ax FLAIR , Cor T2 / Axials T2 Thru CVJ
C Spine – Sag T , Sag STIR , Ax T2 , T1 / Flex & Ext Cspine – Sag T2 , Ax T2 Flex / Sag T2 Ext
It sounds like the scans will cover the important areas with the added benefit of seeing what’s going on w/ your daughter’s head/neck/spine in many different positions. That is fantastic. It seems too many vascular studies are only done in a neutral position which often is not “telling”. As a mother myself, I can imagine what you’re going through as you see her symptoms displayed & have no idea what the cause is or how to help her. This is such a difficult time for you. So many people on our forum have gone from being the picture of health to being nearly completely debilitated in a relatively short time.
Psalm 139:13-14 says, “For You formed my inward parts; You wove me in my mother’s womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.”
I take comfort in knowing that even though no doctor will ever fully understand the intricacies of the human body, there is Someone who does, & He is capable of guiding the minds & hands of our medical community to paths of healing.
I will pray there is something obvious that shows up that can explain what is going on in your daughter’s body so the doctors know how to proceed with her care, and if not, that the doctors she is seeing will be able to think “outside of the box” to help her.
Good that you have a plan & tests lined up, I hope that gives you some small sense of control. Please let us know how it all goes- I agree with Isaiah that it must be so hard as a mum watching your daughter go through this, it sounds as if you’re being a wonderful help & support
Hi All, getting the ’ new user of the month badge ’ has brightened my day and made me laugh! so for asking for help, and all our woes, we get a trophy!
Something good has come of it! a trophy for burrowing and turning over stones…
Couldn’t have got this with our all of you! If you hadn’t replied and helped, I d have been very quiet, so thankyou
Im sorry that you have experienced csf leaks. Not nice! i am unsure as to what symptoms are coming from es and those from a potential leak
Since sleeping on a bed wedge elevated and avoiding caffeine i have leaked a lot less from my nose, however i do believe i experience post nasal drip during sleep
I am not happy that you can relate to the sucked in head and eye feeling, but it reassures me at the same time
I did have a blind blood spinal patch, which unfortunately made no differnce what so ever. The fact that i leak from my nose i believe that i have a secondary cranial leak from untreated high pressure from the ES. As my nose didnt start leaking until around 6 months post symptom on-set
I have emailed the suspicious areas in my skull base to my neuro, so he usually writes to me with any concerns i have, as i am aware of the menigitis risks
sounds like they are investigating things for your daughter. I have read that if any arteries are being compressed or the vagus nerve then this can cause a whole host of symptoms
So i had my consult with Kjetil, then kindly asked him if he could write his findings down in an email which he sent me and attached pictures with arrows on to show his findings from my mri.
Our session ran over so i paid an extra £45 but i was happy as i had some written literature to present to my neuro dr ellis
thanks Natty, we are struggling to download to Kjetil - how did you do it? he said to use Dicom which we are, but when we click on the image there are maybe 20 in it, did you do all of them? was your disc from NHS? thankyou!
So this is what I did. I put my nhs cd in with my mri or spine and head in my laptop drive. Then I clicked on the cd drive in files and selected all files, I then right clicked and copied, then pasted on my desktop
I then went on wetransfer website and dragged the file from my desk top in to we transfer and it uploaded and gave me a link. I copied the link and then pasted it in the booking form to Kjetil
I hope this helps
Apologies for the delay.
Good luck and give me a shout if you need anymore help xx
It looks like a very interesting article, Peony. Thank you for the link. I’ll take time to read it later today. It looks like it may have some helpful information for you to consider.
Yes for sure Isaiah, we have a skype booked for thursday so he is definitely someone to rule out the area he is proficient in - seemingly ES he often finds the TOC also, we are very interested to see what he makes for intra cranial hyper tension part, and wonder about any leaks. So this is the next step, thanks so much for caring, it means alot to be understood, and you have experience of this difficult path
’ has brightened my day and made me laugh! so for asking for help, and all our woes, we get a trophy!
