Chiari, Worsening symptoms..

[Stroud5393]

This morning I woke up up my neck really sore and feels on fire and so does the back of my head. The throbbing pressure isn’t as bad first thing when I’m in bed. Soon as I get up everything gets worse... Is this throbbing head pressure that is in time with my heart beat a chiari thing? Please someone respond.

[Bebeethoven]

Some one suffering for years and seeing my MRI and now know I have CM1 and the list of problems a long I suggest you find a neuroscience center who specialize in and do not Waite because if this is the research says it does get bigger.

[selmaS]

Hi Bebeethoven and welcome to the Chiari forum. May I ask, were you able to get treatment for your Chiari? Do you have any of the related conditions? Were you able to find a Chiari specialist?

If you have any new info or helpful info, please start a new thread so it will be noticed easier for the members to see and respond. If you have questions, please feel free to ask.

selmaS

[Stroud5393]

Hi everyone I know it’s been awhile since I posted. I just now got insurance and trying to find a neurosurgeon near the Memphis area. Selma in one of my previous post you said that Dr. Stephanie Einhaus at seemes Murphy clinic was one of the good neurosurgeons. Is that true is she a chiari specialist?

[Stroud5393]

Is this still active?

[selmaS]

Hi, yes we are still active here.....sorry I also work and it hasn't stopped for me as a care giver......I will have to look up the Drs name and I never refer or nor affirm the Dr , I only give names that other members here have been to treated by and liked it is  up to you to research the Dr to see if they are right for you...so you do need to educate yourself to know the right Dr when you meet.

[selmaS]

Here is the list of Drs for Tennessee, again this is not a referral nor an endorsement , just a starting point for you to research Drs....since I have not been to them I can not say if any are TRUE Chiari specialists, only that members here with Chiari saw these Drs, and were treated by these Drs and liked them enough to share them with us....it is you that must decide if the Dr is right for you.

[Stroud5393]

I don’t see a list?

[selmaS]

Sorry...I forgot....lol...


TENNESSEE

Dr. Stephanie Einhaus
Semmes Murphy Clinic
Mephis, TN

Dr. Carl Hampf
Baptist Hospital
Nashville, Tennessee
800-668-9410
[phone]

Dr Reid Thompson
Vanderbilt Hospital
Nashville, Tennessee

Dr. Cheng
Vanderbilt Hospital
Nashville, Tennessee

Dr. Samuel Hunter
Nashville, Tennessee

University of Tennessee
Dr. William Snyder Jr, MD
Neurosurgical Associates
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
[phone] (Office)

[Stroud5393]

Thank you so much Selma I hope your doing ok. I’m definitely not my breathing is the most worriesome lately It feels like I’m suffocating 24 seven

[selmaS]

Have you been tested for  Sleep apnea? Breathing issues are something to look closely at...and I know a few Chiarians that were DX'd with sleep apnea....
Sending prayers you feel better soon and you find the right Dr for you <3
Keep us posted

[Stroud5393]

I have not been tested for sleep apnea but my doctor ordered a sleep study for the next couple weeks. Sadly I’ve been having increasing headaches that I don’t think are chiari related. They are mostly on my top left side and almost constant. I’m so scared I developed a brain tumor from all the ct scans I’ve had over the years :(

[selmaS]

Well if that could cause a brain tumor I would have one too, but I don't.....try to relax....sometimes the change in the seasons is harder on us and we  don't always connect that....look at your weather as it could be  adding to how you are feeling.

Is your sleep study one being done in your home?

If in fact you have sleep apnea , the lack of oxygen could also be causing your odd headaches....

Keep us posted on your test results.....good luck/

[Stroud5393]

Thank you Selma and I think the sleep study will be done at an office location. I will keep. I’ve also been feeling really nauseous all the time and hardly have an appetite can that be chiari related? I’ve also been getting really lightheaded a lot and woozy feeling and it feels like a weight on top of my head.

[Stroud5393]

Also I’m having throbbing pressure in my head constantly now..

[Stroud5393]

Could the constant throbbing pressure in my head indicate complete obstruction of spinal fluid? It really has me concerned but all I can do is wait to get in with the neurosurgeon they are supposed to be calling me soon with an appointment. Only other thing I can do is go to the er where my neurosurgeon is affiliated with my worsening symptoms.

[Stroud5393]

I’ve also been experiencing my neck being and back of head being on fire too...

[Stroud5393]

And I have episodes where it feels like I’m in a bubble and when people talk it sounds really muffled like I’m under water or something it makes me wanna panic I’m so sick of this...

[selmaS]

Hi Sorry, I work so I can't always get on the computer......

If you had a complete obstruction of CSF, you would collapse and pass out...when we have an interruption of CSF flow we have drop attacks, so I do not think you have a complete obstruction.

It sounds to me that you have some typical Chiari symptoms....as I mentioned to you before the more stressed out we are the worse symptoms can get...with all that is going on in our world it is possible for that to be affecting your Chiari symptoms.

Try to relax until you are seen by a specialist. and Keep us posted here.

[Stroud5393]

Hey everyone it’s been awhile unfortunately I’m way worse than I was a couple months ago. The neurosurgeon I was seeing this past year had his nurse call me the day before my follow up appointment to tell me he was no longer seeing me anymore... They told me I should follow up at another location and they we’re supposedly referring me to them but I never got a call from anyone. So now I have to see my pcp and see if he can refer me to someone else. My big and still current issue is I don’t have insurance which really sucks. My biggest problem right now is this constant lightheadedness it’s there almost 24/7. Since I think Sunday I’ve had the lightheadedness every single day and it’s got me severely depressed :( I’m at the hospital right now with my worsening symptoms I just don’t know what to do anymore so ready to give up....

[Stroud5393]

Please anyone?

[Stroud5393]

Another thing that really scares me is my vision has been really blurry lately and it’s like my eyes go out of focus temporarily...

[selmaS]

Hi I am so sorry you are still dealing with these issues and haven't gtten the help you need. I also am sorry that  no one was able to comment sooner.....I have been having issues myself and have been busy with the upcomeing holiday festivities.
I know you are scared, but to give up is not the option you should consider.
I am hearing most Chiari specialists are no longer working with INSURANCE so that shouldn't be an issue.....find a good specialist and see if the hospital they are connected to has a clinic, as you may get to see a Chiari specialist that way......
I've had surgery ten years ago and I continue to have vision issues it is one reason I no longer drive, but not everyone with Chiari has this issue.

I also do not have INSURANCE at this time and had to go to the er last week.....I know it can be frustrating and scary.....but , you have to keep pushing forward.

[Stroud5393]

Thank you so much for taking the time to reply... I’m sorry your also having issues as well... I actually went to the er Thursday night for this lightheadedness it was Methodist university which is a really big hospital. Now they have me following up with a neurosurgeon there and they are supposed to be really knowledgeable about chiari I hope so at least. I have a appointment in 2 weeks I really hope it goes well. I’m just so scared about this constant lightheadedness and heaviness in the back of my head. Can lightheadedness be constant with chiari? I’m considering going back
the er because this lightheadedness is getting so bad it’s not going away....

[selmaS]

Hi....I took a look at the Drs in Neurosurgery there, none are familiar to me and I didn't see one listing Chiari as a specialisty or even something they have done to date, and a few are no longer affiliated with the hospital any longer. Make sure to ask about their experience with Chiari and their specialities as just being in Neurosurgery is not enough.

[Stroud5393]

It’s actually all the neurosurgeons from seemes Murphy clinic is there any surgeons their that know chiari well?

[selmaS]

You need to get a current list of Drs as I am not sure if the list I saw was current....and when you look at their Bio's they list their specialisties....if Chiari is not specifically listed then no they are not Chiari specialists....
Do reseaarch the Drs.

[KerriC1]

Can you send your info and images to a specialist? I’m pretty sure most of them still review them and give you at least a better picture of what is going on. And I think at no cost but don’t quote me on that. It’s at least worth a shot

[Stroud5393]

I’ve talked to doctor bologanese I’m New York and sent my mris and everything to
him. He should receive everything Friday and said we would have a video conference on the results and everything after he reviews them. Even if he has a better picture of everything he isn’t gonna do the surgery without me having insurance would he?

[KerriC1]

Awesome! At least you’re in the right direction. I’m not sure about the insurance. But maybe there’s some sort of payment plan they can work out of need be. But right now finding out what’s going on is priority. I’m glad you have someone to take interest

[Stroud5393]

Selma I really need som advice now for sure. The past three days I think I’ve been have major headaches in the back of my head mostly. The thing is I haven’t really dealt with headaches at all through all this just head pressure. That’s what really scares me of what it could be? Why would I all of a sudden develop serious headaches in the back of my head?  I went to the er a couple days ago where they did a ct scan that was normal but I’m worried it’s something that can’t be seen on ct...

[Stroud5393]

Ive also been dealing with confusion where I can’t follow conversation and can’t think clear at all..

[selmaS]

Hi Sorry I was babysitting today and didn't have access to my computer.The headaches in the back of your head are typical Chiari headaches....and the symptoms can cycle....meaning they can come and go, OR change at any time.Brain fog, or Chiari brain is something we all deal with, even though you are not use to these symptoms.

[Stroud5393]

I just think it’s odd that I suddenly develop these serious headaches..

[selmaS]

I know it is difficult to deal with these vast changes....I know because I too had them....and sometimes still get them....so you are not alone in being confused to the ever changing Chiari symptoms.

[Stroud5393]

Really scared about my worsening symptoms... Today my head feels like a weight is pulling my head downward and feet feel disconnected off and on. And the pressure in the back of my head is unbearable :(. Any idea what could be wrong? I'm really thinking of going to the er again I'm so worried...

[Stroud5393]

I’m really getting worried now for sure. For the past two or three days I’ve been having this prickly/tickly feeling in the bottom of my feet and I’ve been really unsteady on my feet. Could this be a Syrinix that’s developrd? Or possible something else like gullian  barr? I’m so scared of what this is it feels like my feet are disconnected and I feel so unsteady when walking...

[Stroud5393]

Do you think this sounds like I should go to the er?  It has seemed to come fairly quickly that’s why it worries me so much..

[selmaS]

I thought you went to the ER...what was that outcome?  
There a couple of things it could be and as I mentioned before, anxiety itself could be playing a roll as well.....try to relax, see your PCP.. I know you have a visit planned, but try to get on the cancelation list to get in sooner and see what he/she has to say about all that is going on.

[Stroud5393]

Does it sound like it could be a syrinix?Have you heard of chiarians complaining of the tickly feeling in the bottom of feel plus’ hard time walking?

[selmaS]

A syrinx can affect a person in so many different ways, it all depends on where it is located as to which nerves are affected, so I could not say if it was a syrinx.  Plus there are other conditions that could cause issues with the feet as well.....so just becuase you have a DX of Chiari does not mean ALL your symptoms are from it or a related condition....at least one can not assume.....you need to have it looked at and ruled out.
What did they say at the last visit to the ER?

[Stroud5393]

They just did blood work and sent me home... Maybe I should just go back?

[selmaS]

The ER is not going to  DX you...they only treat symptoms and send you off to another Dr for more testing where you will get  a DX and course of action.

[Stroud5393]

Selma I truly appreciate all your advice and everything I hope I haven't become a burden to the board..

[selmaS]

You are not a burden, this is why this board is here....I am only sorry I can not always get right back to you as I know how anxious you are about these increasing symptoms......I know you are considering the ER again, but know they will only give you something for the current symptoms and release you. And most of Chiari symptoms do not respond to meds.

[selmaS]

What type of surgery are you hoping for? I can't recall if you were decompressed or not....I know how scary this all can be....hang in there and keep us posted  on what they tell you at the ER.

[Stroud5393]

I haven’t had decompression surgery yet I don’t know if they would do that here or not but my symptoms are really bad :(

[selmaS]

Trust me you DO NOT want to have surgery just any place just because of how you feel now, you need a true CHIARI specialist.....not just the NS on call......

[Stroud5393]

Well I don’t have insurance so there is no way I can see a chiari specialist so I have to settle...

[selmaS]

Have you looked into the clinical trials? I am not sure where you are located but they do the trails all over......and it is possible to get a true specialist.

[selmaS]

Hi....just knowing you have an irregular heartbeaat does not mean your brain stem is or isn't compressed...as there could be other reasons.....such as POTS which is a comorbid condition of Chiari so, until a Dr sees you and DX's you there is no way to know for sure.
Have you been to your PCP about the irregular heartbeats?

[Stroud5393]

I’ve been to the er a couple time and had ekgs that were normal but the skipped beats never happened during the ekg so it wouldn’t have picked it up.. I see my pcp in 3 weeks about it. I’ve just been progressing so fast :( I’m losing my mind because of it. My head feels like it’s constantly being hit with waves or something and I always feel woozy I use to have some good days but not anymore I don’t know what to do anymore... I can barely walk because I feel so unsteady.

[Stroud5393]

The back of my head feels heavy and weird my head feels like it’s on fire and I’m so dizzy... I don’t know why I would be progressing so fast I’m so scared :(

[Stroud5393]

I’ve also been dealing with vertigo type spells like everything looks like it’s tilting I’m so distraught :( I’m currently at the ER for these symptoms I honestly hope they do surgery tonight...

[Stroud5393]

Also for the past month I’ve been having a lot of skipped heartbeats I’ve read with the skipped heartbeats lightheadedness etc. it may be brain stem compression could it be?

[Stroud5393]

Well a little bit of an update. I was supposed to have my 6 month follow up th neurosurgeon yesterday but I had the appointment time wrong... So now I have to wait till October the 15 to see the neurosurgeon.. I wish I could say that I was better and not getting worse but the past couple of months I have progressed it seems.. The past 2 weeks my unsteadiness has been really bad I'm scared to even get up and walk because of it.. My lightheadedness and head falling feeling has gotten worse too :(. Should I go to the er about this? I'm so scared that I'm eventually not going to be able to walk on my own :(

[Stroud5393]

I keep getting feeling like my head being hit by ocean waves like a back and fourth wooziness... Every day I just keep declining I'm so scared of not being able to go to work and take care of my family...

[Stroud5393]

Has anyone had constant lightheadedness with chiari? I’m scared it could be something else :(

[selmaS]

Hi I am so sorry you are so stressed out over these symptoms and I know the ER will not be of any help to you.....so I  know it will be a wasted trip, but if it helps you feel better going then maybe you should.

I can only offer info on what I know, and all I can suggest is to try to relax, keep hydrated as that can affect how you feel....and look at your weather....we all tend to be walking barometers.....and that too can add to the light headed feelings you experience.

I used to get like I was hyperventalating just with taking....my husband had a few suggestions for me on that one....but I do understand your being worried, afraid....etc....I was too....all we can do is try to see if our activities are a contributing factor, our diet, the weather....etc...then try to avoid some of the things that may add to the symptoms.

[Stroud5393]

I’m really becoming so scared the lightheadedness is there constant even when lying down :( I want to go to the er again but don’t want it to be a waste of time again... The lightheadedness even at rest is what really worries me.....

[selmaS]

The ER can't help, only a CHIARI specialist can.....the ER is for life saving and to help with intollerable pain....outside of that they have no idea how to begin to treat someone with Chiari.
I don't think  spinal tap will help in fact it could make you feel worse......

[Stroud5393]

I’m just really worried because my lightheadedness is constant and it’s hard to walk because I feel so unsteady..

[KerriC1]

With me, the high ICP causes positional unbearable headaches and sometimes will wake me from a dead sleep with the worst headache ever. If I move my head up and down or side to side I get a whooshing thumping sound. Also if my heart rate is increased it pulses loudly.

Some of what you’re experiencing could be that or it could be a combination of things like POTS and chiari.

I agree that the ER isn’t of much use. A specialist is where you need to be. If you’re able to go to one, that’s your best option.

[Stroud5393]

Well my head pressure and headaches never really woken me from sleep I don’t think. So maybe it’s not ICP? I’ve also just had my eyes check d and my optic nerves looked ok.

[MattMarshall]

I get frequent "high pressure" headaches typical of intercranial hypertension. While it is sometimes the case that these pressure headaches can develop over the course of the day, usually I wake up with them, and they are only resolved by me getting up and moving.

Occasionally the pressure headache will be severe enough to wake me from my sleep at which point I get up because I wouldn't be able to tolerate laying down with them any further. They get better and are resolved as time goes.

And, while as these pressure headaches progress, they regularly reach a point where I feel pain, pressure, and at least some modest discomfort behind my eyes, my most recent MRI does not show any flattening of the ocular globes (thank goodness). But, when the headaches are particularly intense, my vision gets blurry.

I'm looking at getting formally tested for this in the near future.

[Stroud5393]

I just don’t know what to do I feel like I’ve done everything I could possibly do :(. I’ve been to the er countless times and they do nothing regardless of how bad I am. Every day gets worse I’m progressing fast and just don’t know what to do... Should I go back to the er and demand a spinal tap?

[MattMarshall]

I've been offline as of late and just noticed your posts. Forgive me if you've mentioned this before now, but have you been diagnosed w/ intercranial hypertension (IH)?

I assume not, and this is why they'd want to do the spinal tap to check for excess CSF. Obviously we discussed this earlier, and the associated risks. (I believe especially for patients w/ stability issues, like maybe EDS??)

That said, I think there are precautions an informed chiari specialist could detail (or maybe the precautions and guidelines are already published somewhere out there) that can be followed to reduce the risks for CSF leak problems that could lead to further sagging of your herniation.

Otherwise, there are at least indicators out there, such as the following, that could at least give a reasonable amount of evidence of IH.

For instance, by MRI (I believe) it could be indicated (or at least hinted) by a finding of CSF in the pituitary sella,  by a flattening of the back of the eyes' globes, by findings of large pockets of CSF, and maybe more. (I'm not an expert on this matter, so my knowledge is limited here.)

A neuro-ophthalmologist can also look into your eyes and verify this flattening if the relevant MRI images are not available (though, my understanding is that a MRI would normally be ordered to verify what the ophthalmologist found).

Often times, patients with IH will also complain of headaches or head discomfort that is worse when laying down, and made better by getting up. I assume this is because when the head pushes against the pillow, mattress, floor, whatever, it applies a certain amount of pressure on an already inflated pressure created by IH.

This is my best non-professional advice for determining if, in fact, you are suffering from intercranial hypertension. Beyond this, you really need to fight like mad to get yourself in front of a chiari specialist. Only they will be able to most safely navigate the issues you are experiencing.

[selmaS]

YES, it can be Chiari related.....and it can be related to the weather in your area, including temps, and barometric pressure.....it can also be what you do activity wise as well......there are so many variables to what could be causing you to feel this way....including worry and stress, they factor in as well......

[Stroud5393]

I definitely do think stress is playing a big factor in everything... I found a old cat scan report from 2015 that said 6mm chiari and according to the mri I had last week it’s still 6mm.. So why would my symptoms be getting worse if the herniation isn’t changing?

[Stroud5393]

Please guys I’m really worrying today. I’m feeling really faint for some reason :( I’ve had everything checked out so many times so it’s gotta be chiari related right? The fluid and fullness feeling is really bad what could be happening??

[Stroud5393]

Alright I’m really starting to get worried.. This heaviness I’m the back of my head is so bad along with the lightheaded spells. I’ve also developed nausea the past couple days does this sound chiari related?! The back of my head just feels so heavy and I’m having derealization where it looks like everything seems unreal I’m really scared I don’t know what to do  :(

[Stroud5393]

Everything has thrown me into a deep depression :( I’m so scared I’ll drop dead....

[Stroud5393]

Also with the nausea I have this bad taste in my mouth all the time..

[selmaS]

I am very sorry you are so distressed, and I wish I knew what to tell you to help you with the anxiety you have in addition to all your symptoms......I am familiar with the feelings you are having....and I can not say difinativly they are Chiari as I do have several other related conditions.....but, I do know how you feel.

Did you look into the NIH for clinical trials to see if you qualify for any?

[KerriC1]

Hope you’re doing well

[Stroud5393]

Thank you I’m honestly just trying to do the best I can.... Just so tired of the fullness and pressure feeling and almost constant woozy feeling... I do have an appointment with the neurosurgeon June 28th which is over a month away.. I talked to the neurosurgeons nurse yesterday and she said they were probably gonna order the cine mri. I just hope I can make it to the appointment..

[selmaS]

Hi...have you had POTS ruled out? HHI?.....Chiari can come with other conditions, and until all testing rules these others out it is near impossible to say what is causing which symptoms. OR how to treat them and which one first....

[Stroud5393]

HHI? How do you rule out pots? I know going from lying to sitting to standing my blood pressure doesn’t drop at all.

[selmaS]

They do a tilt table test for POTS. HHI ...intercranial hypertension....which I believe you felt you might have.....until things are ruled out, you have to consider everything.

[Stroud5393]

Well I did have my eyes checked and my optic nerves looked good. I read that they become damaged if you have intracranial hypertension.

[selmaS]

Well then it could be Chiari, EDS and a few other things like your activities, or the weather......

[Stroud5393]

I got discharged last night I still worry about having ICP... I did read I had moderate disk bulging in c-6 and c-7 maybe that could be causing the headaches and neck pain? It wouldn't really explain the ear and fullness in the back of my head though.. I just really wonder whats causing everything if not chiari. Is it less likely I have ICP with a clear eye exam?  

[Stroud5393]

Well I saw a neurosurgeon about they scans I had yesterday and he said it’s a small malformation at around 5mm. He said he knows quite about chiari and he didn’t see any kind of blockage or anything and he said he didn’t think chiari was causing my symptoms... Which I don’t really believe that but guess I’m gonna have to investigate other causes. I did get a eye exam here at the hospital awhile ago and their was ok swelling of my optic nerves which is good but doesn’t rule out ICP..

[Stroud5393]

I meant their was no swelling of the optic nerves.

[KerriC1]

I did have burning pain in my neck and back of head. And the shoulder blades. And the ringing in the ears (which I always have but gets intense with the pressure) is very high pitched and it’s literally all I can hear along with a helicopter sound thumping nonstop. Very frustrating.

I wouldn’t let anyone jump to inserting a shunt as those can cause more issues than they help sometimes. It was proposed for me but was a last resort. Most times the decompression surgery can help and sometimes the surgery can cause high ICP. Which is what happened to me after surgery no 1.

[Stroud5393]

I really think it’s ICP just from research and look at other people’s mris. I noticed my optic stuff is being smushed on the scan and I’ve heard that’s characteristic for ICP

[Stroud5393]

Did you also by chance loaves liquid sounds in the head like the sound water makes going through skimmed water hose?

[Stroud5393]

Kinked I mean

[KerriC1]

I don’t know if I would call it liquid sounds but I have a whooshing feeling like my brain is swimming. Kinda hard to describe

[Stroud5393]

Sounds like they are gonna try to send me home without a spinal :(. I could lose my eye sight or worse... Just don’t get why they can’t do it.. I’m starting to get the ringing in my ears now..

[KerriC1]

Sometimes things happen for reasons we can’t explain and can be a blessing in disguise. Maybe the person performing the LP could’ve done more harm than good. Have you ever had vision field testings or your eyes dilated? They can see high pressure that way also. And they will look for papilledema which is swelling of the optic nerve caused by high ICP. Maybe you could go that route

[Stroud5393]

Yes it’s been over a year when I had the eye test done but I probably need another one. Yeah you are right about everything happening for a reason just wish I could understand it..

[KerriC1]

It would prob be a good idea to get those testings. Might answer more questions thank you think. And I’m still searching for my reasons also butteying to power through all the madness chiari causes.

[Stroud5393]

Kerri thank you for all your advice I appreciate it more than you know

[KerriC1]

I think we can all relate to the fear and confusion when you’re new to chiari. It takes time and I still have questions. But just know that we are all here for each other. No one can understand more than a fellow chiarian

No need to thank me, but you’re very welcome

[KerriC1]

Without the proper testing it’s haed to say what it is or isn’t. I can only go by symptoms that I’ve had. I had throbbing pressure headaches that pulsed loudly and painfully inside my head. Couldn’t move my head even slightly without it. I literally heard my heartbeat every time I moved and the ringing in the ears was deafening. Also I had visual disturbances including bright flashes of light and black spots that caused loss of vision. I had many visual field tests and had significant abnormalities show.

If you proceed with an LP, be sure they are aware of your chiari because drawing too quickly can cause the brain tonsils to be pulled down further causing worsening symptoms. Also be aware of the chance of spinal fluid leak from this procedure. It happened to me and had to have a blood patch to seal it

[Stroud5393]

Thank you Kerri. I guess it could be ICP because I do have the throbbing pressure when I stand and stuff. Did you ever have burning pain in the back of your head and neck? Was the ringing in your ears high or low pitched? I don’t really have a lot of ringing in the ears just more of a throbbing pressure that goes with my heartbeat.. Just seems like my symptoms have progressed a bunch in the past month

[KerriC1]

Hydro and high ICP are similar but different things. Hydro is fluid inside the brain itself and high ICP is fluid buildup on top of the brain. I have high ICP and although miserable I’ve not heard of it causing death. It can lead to permanent blindness if not treated due to pressure increase on the optic nerve. There is a mad that is used to treat it called diamox. It has nasty side effects but it reduces the amount of fluid. I was on it for well over a year.

Hoping you get some answers soon

[Stroud5393]

I’m suppose to hear something from the neurosurgeon about the mri results and see what he wants to go. Surely he wouldn’t wanna do emergency surgery?

[Stroud5393]

I don’t know why I’m so terrified of surgery.. I’m scared I won’t wake back up or I’ll have a complication or something..

[Stroud5393]

Does this sound like ICP??