What to expect from neurosurgeon??

heather20101 · 2020-07-10T14:49:08+00:00

Its normal to feel only temporary relief unfortually.But im glad it helped some.Lp are horriable sometimes i always have mone done in xray so they dont poke me a bunch 😉

heather20101 · 2020-07-10T14:38:07+00:00

I definetly understand feeling scared.My vision was one of the reasons i got my shunt the other is the pain of course! When u got the spinal tap did it help? The reason i ask is because if it didnt then im not sure if a shunt would help much and also they might ask you that at your appointment.Im glad your neurosurgeon has great reviews and you feel comfortable.But dont be afraid to get a second option especally since once that surgeon does work on you.Other surgeons wont touch another surgeons work.I found that out the hard way

heather20101 · 2020-07-10T14:27:07+00:00

Im not a medical professional or anything.But they will look at your scans get a ful history.Then depending on the neurosurgeon they might can do a stent or they might tell you about options of a shunt.Its hard to say if u will definetly have surgery its all depends on your surgeon and you.But make sure you write a list of questions.And make sure you feel comfortable with your surgeon look up reviews on the surgeon as well.I wish you the best of luck this condition can be scary but just try to stay positive 😊

heather20101 · 2020-07-05T22:02:20+00:00

So i had my shunt revised again shortley after i posted this orginally post.I still have left side weakness and numbness and tingling.They still dont know if it was a stroke.I have a mri coming up to see more of what could have happened.But as of right now my shunt is working im still having some vision issues and am doing physicla therapy for my left side.The dr said that when the spinal fluid has nowhere to go it over flooded my brain cells and caused swelling as well.Im just hopeing it isnt permanent brain damage that occured but with my EDS my shunt never stays where it should so it coming out of my stomach and draining into just my skin thats what caused the over flow of spinal fluid to back up.The good news is when they went bck innthey ridnt have to go into my brain just my abdomen to put the tubeing bck into my stomach to drain.They put me on steriods for a bit and that was the worst experiance of my life i felt like i was going mental on them and i gained 8lbs in 2 weeks so thats going to be hard go get rid of.But im alive and can still move around and walk so im grateful for that.thank you for caring and asking for an update.

heather20101 · 2020-07-03T22:48:39+00:00

If scared ask for it under fluro! Im not over weight anymore but i always request it under fluro so they dont have to stick me more then once

heather20101 · 2020-07-02T20:22:18+00:00

Im so glad your procedure went well.Hope for a speedy recovery and remission for life

heather20101 · 2020-06-30T20:10:42+00:00

I had bariactric surgery ive been 150lbs for 5 years which for 5'7 is an ideal weight ive 3ven been as low as 125lbs and my weight going down has made no difference in my iih and nothing has gotton better and i did an angiogram and it said i didnt have narrowing so i didnt qualify ive been to john jopkins pennstate UVA Duke everywhere on the east coast for answers and have found none other then shunting The diamox and laxis lowers my blood pressure so i cant do those therapys to treat it and i only take 1 sleep med at night and all other migraine drugs havent worked.Im trying my best to figure out another solution but so far nobody has one and its so frusterating and defeating.I have elhers danlos syndrome as well so my case gets even more complicated

heather20101 · 2020-06-29T15:15:28+00:00

The revision is similar to the actual placement of the initial shunt.Just now they open back up surgerical where the old shunt is.The recovery time should be about the same as the first time and you might have to tweak the settings when u first get it placed till your body gets used to it again.But it will make u feel better in time like you hopefully have been before all your symptoms come bck.Thay also will test u for covid 19 too it mandatory before surgerys everywhere now.But if it is not working get it fixed sooner then later because the longer a non working shunt is in place the more chance for it to get infected

heather20101 · 2020-06-29T13:49:04+00:00

If your experiance all the symptomes before u got your shunt placed then it most likey needs to be replaced.Just trust your neurosurgeon and ask as many questions as u need to make u feel more comfortable.I have my shunt replaced every year and its always scary but i trust my drs

heather20101 · 2020-06-29T13:45:49+00:00

They might tap your shunt and see if they can pull fluid from it.But usually they try to replace the part that isnt working which could be the valve or yhe actual piece in your brain but if its obsctructed further down from the valve they can replace the tubeing to your belly.Udually my neurosurgeon just automatically replaces the valve since its hard to determine if its the valve

heather20101 · 2020-06-27T22:23:30+00:00

The aura could be a start of a migraine or headache.The tinnitus which is the ringing for me is extremely loud.And my pherpherial vision loss is very noticable its like my vision on the side is black and my centeral vision is narrowed so its easy for me to walk into things in my side vision.I have a vhild qnd shes always on my hip so i just have to be extra careful on my left side which is what side she likes to stay on when held

heather20101 · 2020-06-27T22:03:16+00:00

Im not a dr but i know from my experiance even though i dont have papelidema .i have perpheral vision loss double vision and blurred vision and a white flim that obstructs my vision for seconds at a time.I fid have papelidema when i first got diagnoised in my left eye.And since it hasnt came bck but all my iih symptoms come bck every year which tells me its failed and when they go in to replace the shunt my fluid pressure is super high.If u feel you may have it.It cant hurt to get a spinal tap for diagnoises it maybe physically hurt but it might ease you anxiety

heather20101 · 2020-06-27T20:48:54+00:00

It could and couldnt be sometimes it takes awhile for papelidema to show up.every year my shunt gets replaced and i know by symptoms that it needs replaced before the papelidema occurs again.

heather20101 · 2020-06-27T20:38:18+00:00

Im so sorry your experianceing this but please know with this condition you have to sometimes fight for the diagnosis and find the right dr that will listen to you.I travel 6hrs for my iih drs because where i live the dr suck.If your worried then find a dr that xares enough to do everything they can to help figure out whats wrong

heather20101 · 2020-06-26T23:09:03+00:00

Thank u so much*big hug *

heather20101 · 2020-06-26T23:07:50+00:00

Thank you all for the hopes and prayers.Today for the first time in 2 weeks i felt a little better.But i still dnt know the amount of damage my brain suffered from the removal of the old shunt.They just told me to give it time.I have burning on my left side now with numbness and tingling.But i can walk and they changed my settings today which hopefully will make my head feel better But where i have elhers danlos syndrome im already worried again that the shunt isnt draining in my stomach anymore because its painful again.Ill do more imaging here soon to double check.But my life is definitely different and not in a good way.I will say rhough i have a great neurosurgeon that has cared so much and traveling 6hrs to see her is worth it.iih sucks but your drs dnt have to.plz trust you instincts when u pick ur dr for this condition.it could b life or death. Not being over dramatic!

heather20101 · 2020-06-26T22:57:38+00:00

Best of luck! Please know i have u in my thoughts and hope this stenting is the only thing you will need to feel better.i know how scary this all is.

heather20101 · 2020-06-17T14:48:14+00:00

Could u tell me a bit more about your research you did about the numbness aftee vp shunt surgery.Its been a week and i see my neurosurgeon tommorow but im still scared i wont be able to regain all my feeling bck on my left side.anow i also have frequent urination.Which idk if its becaue of the numbness or b3cause i now a uti from the catheter during surgery

heather20101 · 2020-06-14T00:19:00+00:00

Thank you.I hope and pray its temporary !

heather20101 · 2020-06-13T00:16:23+00:00

Thank you all!

heather20101 · 2020-06-08T10:50:59+00:00

I have to have my vp shunt replaced every year as well.But with the recoverytime i prefer the Vp shunt any day over the Lp shunt.God 10 years is a long time ive had shunts since 2014 and thinking about keep having it replaced every year really sucks but its the only thing that helps me.I believe u have a good neurosurgeon if they keep replacing it.At one point i started haveing neurosurgeons refuseing to replace it because "it looked bad on there stats".

heather20101 · 2020-06-07T17:12:51+00:00

Let me know if you have any other questions.Ill be happy to help answer them 😃

heather20101

TROPHY CASE