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High intracranial pressure
Hey guys, sorry it's been a little while since I've posted. Just wanted to update a little. I found a very good neurologist who says I have high intracranial pressure. He put me on diamox. I've been taking it for 4 weeks. I saw him yesterday and he wants me to up the dose. He's sending me to ophthalmology for a visual field test which I've never had before. Mainly because of the blind spots and the flashing lights I see often.
I can't believe it's been almost 15 months since surgery and I'm just now getting some answers as to why I hear the helicopter and have fluid from my nose taste metal and see spots and lights. The CCI is still bothersome but no fusion scheduled as of now. What a road this has all been
I hope all of you are doing alright and Selma, I'm sure it's very close to your grand baby coming! Thinking of you and your family!
I can't believe it's been almost 15 months since surgery and I'm just now getting some answers as to why I hear the helicopter and have fluid from my nose taste metal and see spots and lights. The CCI is still bothersome but no fusion scheduled as of now. What a road this has all been
I hope all of you are doing alright and Selma, I'm sure it's very close to your grand baby coming! Thinking of you and your family!
Well I had this whole thing typed up and posted but it disappeared so if it resurrects itself I guess just disregard it! Ha!
Anyway I'll try to redo. I've had 3 visual field tests done in total and failed all of them. Neurologist upped the diamox again and I am now taking 1500 mg a day. Not a huge fan of the med but I'm sticking to it.
Still having the visual problems like blind spots and flashing lights and the ringing in ears. Still having headaches and fluid from my nostril. And the positional whooshing and pulsing. I have seen some improvement with the diamox but it enough for my taste.
Next neurology appointment is on he 16th and he said he was pondering the shunt but isn't quite there yet, thankfully. That honestly scares me.
It's all frustrating and I just wanna feel better
Anyway I'll try to redo. I've had 3 visual field tests done in total and failed all of them. Neurologist upped the diamox again and I am now taking 1500 mg a day. Not a huge fan of the med but I'm sticking to it.
Still having the visual problems like blind spots and flashing lights and the ringing in ears. Still having headaches and fluid from my nostril. And the positional whooshing and pulsing. I have seen some improvement with the diamox but it enough for my taste.
Next neurology appointment is on he 16th and he said he was pondering the shunt but isn't quite there yet, thankfully. That honestly scares me.
It's all frustrating and I just wanna feel better
Hi all!
So I had a total of 3 visual field tests done and failed all of them. Neurologist upped my diamox again and I'm now taking 1500 mg a day. It's helping somewhat but still have headaches and definitely the visual problems. I also still have the positional whooshing.
The last appointment with him he said he had pondered the shunt but says we're not quite there yet. Thankfully. I don't wanna consider that yet. I go back on the 16th to be re evaluated and for bloodwork to check for issues that can be caused by the diamox.
I'm so frustrated and just wanna feel better
So I had a total of 3 visual field tests done and failed all of them. Neurologist upped my diamox again and I'm now taking 1500 mg a day. It's helping somewhat but still have headaches and definitely the visual problems. I also still have the positional whooshing.
The last appointment with him he said he had pondered the shunt but says we're not quite there yet. Thankfully. I don't wanna consider that yet. I go back on the 16th to be re evaluated and for bloodwork to check for issues that can be caused by the diamox.
I'm so frustrated and just wanna feel better
Little update. My neurologist sent me to opthamology for another eye exam, except he also wanted me to have this vision field test. It was supposed to take 5 minutes per eye and it took 12 because it would retest areas where I couldn't see the flashing lights. I was scheduled to see the dr right after and while waiting in the exam room the head opthamologist came in and got me to go to his room. He said it was pretty bad but may not be as bad as it looked so he scheduled me for another one this Monday and then my neurologist appt is on the following Thursday.
He said my eyes themselves were good and the optic nerve wasn't swollen from the pressure, but I've been on diamox for over 3 months.
Gotta admit, this has me on edge a little....
He said my eyes themselves were good and the optic nerve wasn't swollen from the pressure, but I've been on diamox for over 3 months.
Gotta admit, this has me on edge a little....
@selma, thank you for the name. I'm gonna check into it Monday. As always, I appreciate your help more than you know
@cw, thank you for taking the time to respond. I'm very sorry you've been through so much. Chiari is just the gift that keeps on giving......
I do also have the vision issues. Had them since surgery and when I brought it to my NS'S attention he disregarded it among all the other complaints. I see halos and streaky vision and flashing lights especially when coughing or bending. Also blurry and ghost vision. I'm scheduled for a vision field test but it won't be till next month. I'm also unsure if I should be off the diamox for this test to get an accurate result. I'll prob have to call the neurologist about it.
So you had an LP? It didn't diagnose your pressure? I haven't had one for this yet but had one many years ago when chiari first reared its ugly head and they thought I had ms. I ended up with a csf leak and after 7 days was hospitalized and had a blood patch done.
You now have epilepsy too? I'm very sorry to hear that. I had childhood seizures but at that time no investigations into it and I outgrew them. So they said.
Thank you again for taking your time and it's so nice to not feel alone in this bumpy journey!
@cw, thank you for taking the time to respond. I'm very sorry you've been through so much. Chiari is just the gift that keeps on giving......
I do also have the vision issues. Had them since surgery and when I brought it to my NS'S attention he disregarded it among all the other complaints. I see halos and streaky vision and flashing lights especially when coughing or bending. Also blurry and ghost vision. I'm scheduled for a vision field test but it won't be till next month. I'm also unsure if I should be off the diamox for this test to get an accurate result. I'll prob have to call the neurologist about it.
So you had an LP? It didn't diagnose your pressure? I haven't had one for this yet but had one many years ago when chiari first reared its ugly head and they thought I had ms. I ended up with a csf leak and after 7 days was hospitalized and had a blood patch done.
You now have epilepsy too? I'm very sorry to hear that. I had childhood seizures but at that time no investigations into it and I outgrew them. So they said.
Thank you again for taking your time and it's so nice to not feel alone in this bumpy journey!
1 Comments
Yes, I've had a few LPs at this point. NO, it's not something that I or the doctor was keen on but there were other conditions that warranted or made it worth the risk in the NSs opinion. They have used it in conjunction with the injection of a radioactive dye to see if csf is flowing in an arachnoid cyst on the cerebellum and to monitor flow in area showing hydro.
My understanding is that an LP normally is not done on someone with Chiari Malformation but I could be wrong.
As far as the rest KerriC1... we all carry our own albatrosses in different ways and different forms. So as I tell my wife 'it is what it is' we just keep moving forward. Perhaps much slower than we want to but every step means we are still breathing so it's a good one!
Best Wishes to you in the journey.
CW
My understanding is that an LP normally is not done on someone with Chiari Malformation but I could be wrong.
As far as the rest KerriC1... we all carry our own albatrosses in different ways and different forms. So as I tell my wife 'it is what it is' we just keep moving forward. Perhaps much slower than we want to but every step means we are still breathing so it's a good one!
Best Wishes to you in the journey.
CW
COMMUNITY LEADER
Other's with EDS in your area have given this name....check her out....
https://www.mercy.net/doctor/jennifer-michelle-heeley-md
I don't really understand the question if there was one. But am writing you anyway. Just because sometimes it's nice to know we are not alone. Not trying to say I know how you feel because we are all different and all feel things differently. However, I'll tell you a little in hopes it helps you somewhat to not feel alone.
Our reasons or causes may be different I don't know but I've been dealing with varying csf pressures since this whole thing began. At the time of my decompression surgery they did a tap confirming they felt my pressures were normal only to find out in my spine they were normal. But the intracranial pressures revealed a dangerously higher level. Since then the pressures continue to bounce around. Not all because of CM but related conditions. Anyway, I've been determined drug resistant for this and epilepsy.
As for the tastes, smells also in my case and constant issue of discharge from my eyes and nose - yeah I'm with you there. It's crazy irritating and embarrassing at times. People are always thinking I'm crying LOL or afraid to be around me thinking I'm sick when my nose won't stop. You didn't mention this but along with the high pressure my eyesight goes nuts. Special eye doctor.. forget the name of the type doctor but some sort of Neruo Eye doctor said it appears as progressive glaucoma but is in fact csf pressure compressing the optic nerve.
not complaining or whining just saying you are not alone. Don't give up. As I tell my wife "it is what it is we just keep going from one day to the next and find the best in each day".
CW
Our reasons or causes may be different I don't know but I've been dealing with varying csf pressures since this whole thing began. At the time of my decompression surgery they did a tap confirming they felt my pressures were normal only to find out in my spine they were normal. But the intracranial pressures revealed a dangerously higher level. Since then the pressures continue to bounce around. Not all because of CM but related conditions. Anyway, I've been determined drug resistant for this and epilepsy.
As for the tastes, smells also in my case and constant issue of discharge from my eyes and nose - yeah I'm with you there. It's crazy irritating and embarrassing at times. People are always thinking I'm crying LOL or afraid to be around me thinking I'm sick when my nose won't stop. You didn't mention this but along with the high pressure my eyesight goes nuts. Special eye doctor.. forget the name of the type doctor but some sort of Neruo Eye doctor said it appears as progressive glaucoma but is in fact csf pressure compressing the optic nerve.
not complaining or whining just saying you are not alone. Don't give up. As I tell my wife "it is what it is we just keep going from one day to the next and find the best in each day".
CW
No I haven't been to a geneticist as of yet. I have met all the criteria for EDS and scored 7/9 on the Brighton score. 2 well respected chiari specialists both agreed on that. I knew I had it before surgery and told my NS plus it was written in my papers. Yet he chose the one size fits all bovine patch.....
I agree tho, a geneticist might be the next step. Thank you for that advise. I'm sure it will be a long wait if I'm even lucky enough to find one semi close
I agree tho, a geneticist might be the next step. Thank you for that advise. I'm sure it will be a long wait if I'm even lucky enough to find one semi close
COMMUNITY LEADER
Have you been to a geneticist for an EDS DX?
If you have EDS and depending on what type the geneticist may consider the patch as the culprit....
Other specialists true Chiari specialists will help you even when you had surgery elsewhere
That sounds really awful. I deff don't want that
I don't know how I would find out if it's the patch causing the excess csf. The original NS and I pretty much wrote each other off because he wouldn't follow up with any of my complaints. I may be in a bad position....
I don't know how I would find out if it's the patch causing the excess csf. The original NS and I pretty much wrote each other off because he wouldn't follow up with any of my complaints. I may be in a bad position....
COMMUNITY LEADER
You deff do not want to live in the collar...I got atrophy wearing a boot....and it is not easy to undo....keep up with the neck exercises....but the collar could be of help on long car rides where you may get bounced around....
The patch if not your own tissue can cause rejection and with rejection so many have over produced CSF....so that creates pressure.....
Can the patch cause high pressure? I didn't know that....
Yes they prescribed an aspen vista collar. I had 2 opinions for this and both agreed however 1 NS recommended basically living in the collar and the other said I should wear it but not that much because it can cause muscle atrophy and you wanna try to build up the muscle. So I'm not sure which direction to go in. I do know it's extremely uncomfortable but it does give support.
Yes they prescribed an aspen vista collar. I had 2 opinions for this and both agreed however 1 NS recommended basically living in the collar and the other said I should wear it but not that much because it can cause muscle atrophy and you wanna try to build up the muscle. So I'm not sure which direction to go in. I do know it's extremely uncomfortable but it does give support.
COMMUNITY LEADER
The symptoms could be due to the patch then....so any way they choose to treat the symptoms will not help the cause...
Have they tried having you wear a cervical collar?
Thanks..I will post pics on my profile page when I am done....it is the most patch working I have done on a quilt and my first half square triangles.....I am still trying to figure out the actual quilting....
Yes I had a duraplasty done. My patch is bovine which with having EDS I know isn't good but the NS didn't seem to care.
I assume he's going by the symptoms of extreme pressure and sounds in ears and lights in my eyes along with the fact that the headaches are worse when lying down. They will wake me from a dead sleep, when I'm lucky enough to sleep that is... Lol!
I'm seriously in no rush whatsoever for any fusion surgery. I've been told how debilitating it is but I also know how wobbly my head and neck are and the intense pain that never stops. I can feel my bones click and pop and almost slide out of place a little. It's a horrible feeling.... Dr M took my head and lifted it up off my spine and for a few minutes I felt the best I'd felt in years. But I guess there's still time for improvement.
My last MRI was at my 6 week check aside from a cine flow study done about 6 months ago I think.
Thank you for taking the time to respond and good luck on that quilt. I'm sure it will be beautiful!
I assume he's going by the symptoms of extreme pressure and sounds in ears and lights in my eyes along with the fact that the headaches are worse when lying down. They will wake me from a dead sleep, when I'm lucky enough to sleep that is... Lol!
I'm seriously in no rush whatsoever for any fusion surgery. I've been told how debilitating it is but I also know how wobbly my head and neck are and the intense pain that never stops. I can feel my bones click and pop and almost slide out of place a little. It's a horrible feeling.... Dr M took my head and lifted it up off my spine and for a few minutes I felt the best I'd felt in years. But I guess there's still time for improvement.
My last MRI was at my 6 week check aside from a cine flow study done about 6 months ago I think.
Thank you for taking the time to respond and good luck on that quilt. I'm sure it will be beautiful!
COMMUNITY LEADER
Thanks...soon.... I am working on a quilt now...hope I get it done in time....
Did you have a dura patch? Sorry I can't remember....do you know what type?
Metal taste...could be a CSF leak.
Don't rush into a fusion....I have come this long with out mine....doing the neck exercises given after surgery I think really helped mine....
Have you had a recent MRI?
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