I think that’s how I was and was trying to push through thinking I was losing the plot. Since I collapsed I can’t push through anything I just exist. Hopefully the ctv will pick up something tomorrow. How sad that I want it to find something but you know how that feels. Dr Timothy not reviewing it until March but if there’s anything urgent at least I’ll know. Well I’d like to think so.
At least you can work and function now and I’d be happy with that I really would. Need to get back to work to pay my medical bills
Thank you. They have informed me that the scans will not be looked at today as dr T has ordered them. I am hoping that someone will look sooner rather later when I explain my symptoms. I could always ask Dr T
Secretary when they are back on Monday.
I am guessing you get lots of sad but interesting stories on here. I cannot believe there isn’t more awareness and easy to access treatment options when it’s such a debilitating condition.
My latest NHS mri scans from 2 months ago have finally been read. I cried when I opened the letter this morning as csf leaks do not usually show on MRIs and it has done.
However what has caused this in the first place and surely that needs sorting before doing an epidural blood patch? Still no conversation or appointment with the neurologist which is shocking
Will see what todays appointment brings and at least I know that I’m not crazy
@kel34ban of course not great news about the leak! But hopefully this is the start of recovery! Ridiculous that it took this long for the MRI to be read, but hopefully the blood patch will come soon!
I think still worth pursuing the jugular vein stenosis as it could be the cause of your hypertension leading to the leak, then causing hypotension.
So glad that you’ve been vindicated by clinical evidence! Obvs still a way to go & the possible compression needs addressing or you could get another CSF leak, but at least this is hopefully a start for you
Yes and I’ll carry a copy of that letter to every appointment.
Apparently epidural blood patch’s do not work on ventral leaks as it’s a surgical repair. NHS will try several patches first I know this from
The csf leak page. I trust the patients more than any dr!
Definitely looking at the cause of it and I suspect I have vascular eagles. Hopefully dr T can advise on all of it.
@kel34ban - It’s definitely best to wait for the blood patch until the cause of the leak has been determined & dealt with. We’ve had members who had patches placed prior to styloidectomy & IJV decompression, which nearly immediately came off due to continued pressure.
I agree that it sounds like your leak(s) may be the result of IJV compression & IH though it’s curious the doctor mentioned hypotension vs hypertension but seemed to indicate both in the letter i.e Acetazolamide is usually Rxed for “high pressure headaches” yet hyptotention is low pressure. Hypotention would indicate not enough fluid thus lower than normal pressure in/around your brain. If this is the case, why would you have a leak caused by excess CSF & need meds to reduce CSF production?
Maybe the logic is that the leak is caused by hypertension, the letter states its suspected spontaneous so reasonable assumption. So by reducing CSF production you slow the leak, giving time for the dura and thecal sac to heal, plugging the leak alongside the blood patch to close it up, and then hopefully prevent a reoccurrence.
The medication is for rebound hypertension caused by sealing the leak. It’s very common with an epidural blood patch.
I definitely have inter cranial hypotension as my headaches disappear when I lie flat and I have many other symptoms also. The fact they can see evidence of the leak on my mri confirms what I knew anyway.
I leak from my nose, not a lot but it’s positional only. That is usually cranial leaks but my neurologist said he has many patients with spinal leaks who leak from the nose due to cranial nerve irritation. I’d not discussed EDS with him at the time as did not think it was a possibility but now I do so could have both spinal and cranial
I’m more thinking I need to know and treat what caused the leak and believe I must of had hypertension at some point. Hopefully the ctv will provide some answers.
Well I got to 44 and went from super fit athletic to bloody EDS, CSF leaks, vascular eagles, compressions and who knows what next just shoot me now!
So many people with all of this going on and searching for answers and treatment. At least I have confirmation for the csf leak even though that doesn’t make me feel any better.
Thanks for the clarification, @kel34ban. I obviously still have much to learn. I am sorry that your good health crumbled seemingly overnight, but I do understand how it goes. There’s a reason it’s said “Aging ain’t for sissies!” I’m right there with you experiencing the physical decline of age while trying to cling to youth (at least mentally!!).
@Isaiah_40_31 i have learned everything from reading other csf leak patient stories on the Facebook group. Thank goodness for that group! I’d never commented on there as I felt like a fraud without diagnosis, yet I have every single symptom.
I kind of know my jugular vein is compressed as even I can see that on my MRIs and so I felt comfortable to ask on here. I am sorry that I come on here all hysterical but that’s how I feel and I I’m not good at wording things.
Again I bet I’ll know more from being on here than any dr could ever tell me.i I will be straight on here asking you guys what you think about what has been advised. I wish our drs would join these groups and educate themselves.
Everyone in the csf group knows blood patches are not successful for ventral leaks, yet why I am being offered one and why am I going to take it. Just hoping for some relief, hoping it’s just a csf leak and I don’t have other issues but I know that’s not the case.
No one other than patients have explained anything to me. That letter is all I have and not being able to ask the drs advice about my symptoms or treatment success is scary. Most drs have never heard of our problems. Surely this has to change.
Yeah getting old is not fun and apparently my insides are 50 years ahead of the outside lol
@kel34ban - We’re here for you no matter your state of mind, & I’m so glad you’ve felt comfortable enough w/ this part of your “family” to share your fears & misery so that we can try to lift you up & give you hope. I know the process of getting diagnosed & treated may feel like it’s eternal, but with persistence you’ll get there. You’re doing the very best thing for you - educating yourself so you can take a stand against the ignorance of the doctors you see & fight for what you know or have learned will be most helpful.
I know very little about CSF leaks & blood patches, but I do know that if the pressure that’s causing the leaks isn’t relieved prior to patching, the patches don’t last long. I’d just hate for you to go through that surgery to have it not “stick”, but I understand your desperation for a positive change so perhaps it’s worth a try. Are there any medical research papers or links to studies that have been put up on the CSF FB page which show the sort of patch he’s recommending doesn’t work which you could print off to share w/ the doctor who’s recommending the patch? Would you be able to ask him about how successful the patches have been in his experience? I know you said there’s no communication between patient & doctor (sometimes not even much during an appt.), but it seems if you’re considering surgery, there would be an opportunity to ask a few questions before going under the knife?
It is a sad situation that in these cases the patients know more than the doctors. It would be great if the doctors would at least take the time to read the posts on these forums. I think it would be eye opening for them. Doctors aren’t allowed to join this forum unless they themselves have ES, but they’re certainly welcome to read the posts. Those are available to the general public. They just can’t join the conversations.
I’m praying for you & hoping that your care will progress at a more rapid rate once you see Mr. Timothy.
Mr Timothy has opened a new clinic and brought my appointment forward to the 18th January. At least I’ll get to discuss everything before my blood patch and get his opinion.
I have a copy of the ctv report which doesn’t sound too bad? Is this vascular eagles? Also like @GCD said there is no mention of the lesion at the back. ENT requested an mri that I had yesterday and I’m assuming it’s to rule out acoustic neuroma which I don’t think I have. My jugular vein was extremely swollen when I lost my hearing, it seems to intermittently swell up which is strange. Hopefully dr Timothy can explain this also. What do you think of the CTV report in relation to all my symptoms and could this be the cause of my csf leak.
I know this from