Time to let it go!!!!!!

Question

Hi all,

Just a quick update on my NS appointment that was on Monday.

Basically there is nothing they can do for me, yes I have mild chiari 6mm with diminished flow but there is flow in and out of 4th ventricle and around my brain.

Was told that I will not be discharged but at this stage I have to live like this, as i write today I have numbness, vertigo, and weak arms.  Im upset but know that I have explored all avenues, my odontoid is not retroflexed and they say im not seriously overcrowded.

I did have more bloods taken again to check for lupus, lymes b12, sjorgens, thyroid etc etc, but ns states he thinks again they will all come back normal.

I have been told to monitor my symptoms and that they may or may not progress, was given symptoms to watch out for, severe arm pain, drop attacks and black outs and told that if this does start to go back straight away.

I truly dont no what else to do now, the thought of living my life this way is just awful but I just have to get on with it now.

Im not going away and will pop by and say hi and check out how you are all doing.

Massive thanks to all of you on this fab forum and I wish you all the luck and love in the world with your treatment and diagnosis.

Maybe oneday we will be believed and this awful condition will get the recognition is so needs.

Loads of love to you all
HUGS
NIKI X X

selmaS · Answer

niki has not been on this forum for some time....but you can send a PM (private message) which will generate an e-mail informing her someone is trying to make contact....sometimes members may continue to read the forum but not always post....so give it a try...but it has been sometime since I spoke with her.

Krispt · Answer

Hi I wonder if anyone talks to niki at all
Her symptoms almost mirror mine and I was wondering how she got on?

niki3350 · Answer

Thanks for all your views and kind words they really mean so much.  I do have a cm specialist, and am monitoring it my symptoms very carefully.

Thanks to all the members on this forum for your kind remarks and messages of support.

Hugs

Niki x x

patti615 · Answer

Ladies, I need someone else to type for me and am not going to ask him to go back and get exact names. I do however, feel compelled to let those who said they had a 5-6 mm herniation and were denied surgery at this time know a little bit about my situation. I lived and functioned somewhat normally with a 5 mm herniation for 10 years. Some of my symptoms included arm weakness and problems with incontinence as I've heard mentioned. My symptoms came and went. I could usually lift no more that 1 pound, had headaces, dizzyness, fogginess in my brain and sometimes could hardly walk. I'm not saying that because I believe that I should have had surgery much sooner that you need to. I just want to BEG you to monitor your own situation carefully and to begin immediately to make sure that whatever Dr. is monitoring you is truely a specialist in Chairi. Even when I was finally so incapacitated that I could barely brush my teeth or make it to the bathroom and was having many other symptoms that were excruciating I was still told by surgeons that I had plenty of room and did not require surgery. It was only after several trips to the ER that I was referred to Dr. John Oro here in Denver who did further studies and determined that I needed the surgery. When he got in during the operation, he said that I was even more compacted than he thought from the studies, so much so that I had a callous on one of my toncils. I can now walk from chair to chair in my house and use a wheelchair on days when I'm good enough to get out. I cannot type, write or even hold my phone for too long. Somedays I can't wash my hair or even take a shower. Despite all of this it's quite clear to me that my surgery stopped the progression of my symptoms and I have some significant improvements. I still hope to imporve more. I just feel that I need to add that if someone had taken my symptoms seriously a long time ago and not told me that a 5mm herniation was still normal, I would not be nearly as incapacitated as I am today. So please, if you're not seeing a true specialist, do everything you can to find one. Perhaps you really don't need surgery now, but my sympotms progressed to near incapacitation very rapidly (4 months) and I wished that I had already been seeing an expert and didn't have to wait additional months for my surgery. I may have brain and or nerve damage that may never go away because I was monitored by people with complete lack of expertise and it took me so long to find someone who truely understood Chairi. The size of the herniation I now know is not as much the issue as your own anatomy and how much crowding is involved. I will look up your names when I can and will keep you in my thoughts and prayers.

Patti

epsion22 · Answer

hi niki,

i too have a 6mm with diminish flow.. i went to a NS specialist, Dr. Frim who saw me and talked about my situation. he said the symptoms where not too bad and did not recommend surgery. but did not seem to discount it as it was having an effect on some of my cognitive abilities at work. then I saw a NL who thought I was crazy even though there was an MRI, CINE flow study.. i didnt meet text book requirements... what a idiot...

I found exercising everyday on the elliptical has helped me as well as a reduction in alcohol, its frustrating for sure. Cause drinking is fun, esp when at 29... argh

Stephiec79 · Answer

Oh Niki-
I wish I had the "right" words to say. Being told by the people that are supposed to be able to help us, that we have to live our lives in like this is unacceptable! Don't ever give up! Remember that you have your chiari family always here for you! You are always in my heart & prayers! HUGS!
Steph

niki3350 · Answer

Thanks Molly, you are a star and an amazing advcate for this terrible condition and the strenght you have found to carry on is amazing!!!!!!!!!!!!

Honey its people like you that have kept me going, you are so young and have been to hell and back, yet you still have found time to get your education and enjoy life, im nowhere near as bad as you and with all things looking clear regards flow etc im guessing im on a waiting game and praying it does not get any worse than it is.

I pray that everything goes well for you and dont worry iam not going away, just putting it to one side at the moment or at least as much as my symptoms will allow.

You take care and have a great summer

Hugs
niki x x

soccero · Answer

nicki i am sooooo sorry but never stop looking! just because one ns said ur fine doesnt me he is right never quit!!!!!!!!!!! also this fourm is not just for chiari people having surgery it is for all chiari at any stage of the game! the people which im sure uve found out here are soooo wonderful they always make situations better! please dont leave! anytime u need to vent about anything come here! im praying for u!
molly

selmaS · Answer

I will PM u that diet and I hope it helps...btw, there is also info in the Health pages on anti inflammatory foods that may help as well.....

 Plus, I just started with the pro biotics and they  r to balance out ur  digestive system and help with absorption of vitamins and minerals, plus help with -
The following health benefits are associated with the intake of daily doses of probiotics. [1] [2] [3]

Enhanced immune system response
Reduces negative affects of taking many types of antibiotics
Aids in preventing and treating colon inflammation following surgery
Helps to prevent eczema in youth
Increased ability to digest food
Therapeutic for viral respiratory tract infections by enhancing the overall immune system
Reduces lactose intolerance
Reduces incidence of yeast infections, vaginitis and candidiasis
Increases ability to assimilate the nutrients from food
Alleviates many common digestive disorders such as constipation, diarrhea and IBS
Acts as a remedy for bad breath (halitosis)
Increases ability to synthesize vitamin B
Increases ability to absorb calcium
Promotes anti-tumor and anti-cancer activity in the body

I just started taking these and already see benefits.....what is not listed here is they can help reduce cholesterol....naturally.....so, I am praying no more statins....

  It is not easy to adjust or accept the "new" us...but we have no choice...the sooner we do the better....like I said it is what it is and we can't change it.....

 With a step back and a little time, I am sure u will be able to  re-address this will clearer vision : )

   "selma"

niki3350 · Answer

Thank you Selma, It would be lovely if you could pm me the diet, I will seriously try anything just to keep me on an even balance.

I have made some adjustments to the way I go about things, no more heavy lifting, and im careful not to do to much prolonged bending forward as I have noticed that this does affect me, with regards to my balance and spaced out cog-fog type feeling.

I have reduced my workload at home too!!! my girls and hubbie are helping me out a bit more after a day in work and at weekends, and I have learned to not stress if the ironing not done or the hoovering etc etc.

This is amazing for me Selma as im the type of person that likes neat,tidy order and would not rest until i got it, but it took me a year to learn this. he he!!!!!!!

I agree it is an existence and on leaving the hospital on Monday I apologised to my DH saying "im sorry honey, but you are just going to have to get used to the new me"  I hate it, but accept that this is me now and there is nothing or noone that can change it.

Hugs to you Selma

Niki x  x

selmaS · Answer

When I look back at the yrs I can see when I was plodding along...I did not have a DX but was compensating just to be able to get up and repeat my day...it sux u know....and to sleep on ur days off just do u can get thru the next few at work is not life, it is existence,....and we deserve so much more....

 I feel at some point this will change, and it may with those of u that come here and offer ur journeys as a way for others to see  it is not just them , they r not alone in this and oh look, I can do it this way and feel ok...so can u....

 Have u tried a diff diet?.....there is one for anti -stress, I can PM it to u if u would like to try it???

  I know it may not sound like the answer to ur issue right now, but who knows it may help at least a little and may give u a few days more  of living : )

   <3
  "selma"

niki3350 · Answer

Thank you Selma,

you always have those words of wisdom that cheer me up.  Yes they did check for tc, im ok on this!!!!!

Like you say surgery does not always help and although I do struggle this for me would be a last attempt at helping me, but there not going down this route anyway.

im not giving up just taking a break from it all and praying I can stabalize enough to carry on with my job and have some quality of life.

Great idea about the journal thanks!!!!  Seem to be following the route of if I overdo it then im worse, and if I plod along I can manage, well get by anyway, it just seems so unfair that this has to be the case, but the brain is a complex thing.

Hugs
Niki x x

selmaS · Answer

Hi Niki....u know even if u were here u might meet the same answers unfortunately...and those  that r not happy go to NS's that will do the surgery and end up with major issues as a result....the benefits must out weigh the risks and this surgery has its risks.....do not think the drs r taking this lightly or dismissing u, they r not, they r still going to monitor u which is what many chiari drs do here as well.

 As I have said, not all with chiari r surgical candidates, I know, but surgery is not a fix or a cure....and can lead to more issues.

 The fact u r not having drop attacks is a good one....but they r right, if u do go back asap!

 Surgery is not the answer...I know so many think it is,..it is not....look at all of those that have more issues post op....and look at those that had surgery and the issues they had b4....

 I am not saying u r not suffering, bcuz I know u r....but, there must be another way to get relief we just do not know about yet.

 Keep a journal of ur pain cycles....see what triggers them and how u progress with trying anti inflammatory foods etc.....

  Did they check u for tethered cord?.....just wondering with the incontinence .....I know sometimes we feel like we r grasping at straws, but do not give up....

 When I look back at all the drs I saw over the yrs and the time it took to get a dx....it can get down right depressing....but u have us, and we will find a way...and I hope it is soon to get more awareness out there and a way to help us feel better even without surgery and for those that do get is.....the problem is to the outside world we do not look sick, so we must be ok, and I say I do not just want to look like I feel good , I want to feel better!!!!!


  Hang in there Niki
    "selma"
<3 <3 <3 <3 < 3

zygy2 · Answer

I am so sorry to hear that it sounds like England is the problem.  At least here in the states with insurance I have the ability to keep going.  I had many more issues other than head pain, I was just saying that not being able to laugh was making my life miserable with my kids.  I had plenty of issues to get help, it is just that Getting from a NL to an NS is quite the hard process even here.  I am so sad to think it is even harder there for you.  It is just hard to hear you have all of these issues but think you have no other options to you.  I know my surgery improved so much for me so I hope you are able to find the help, somehow, someday!!!

Sparklyjojo23 · Answer

I'm so sorry for you :( I'm also from England and I'm kinda scared that this is what is the result I am going to get when I see a specialist next week.

My symptoms are the opposite to yours really, the head and neck pain is the constant and I only have very mild versions of some of the symptoms you list. I really hope you can eventually sort things out and they don't get any worse. x

niki3350 · Answer

I hear you Honey, but over here in Englad they are adamant they can do nothing for me, my life ***** at times but head pain really has always been the least of my probs.

My balance, numbness,weakness,dizziness,incontinence,eye pain,vibrating body, to name a few are the worst but they are not constant and can come and go all the time but they can last upto 12 weeks at a time.  My balance has been my biggest issue for the past 11 years.

Good luck to you 2

niki3350 · Answer

Thank you for you kind suggestions, Im on restricted duties at work, so this is good, and am learning to restrict lifting, prolonged bending forward and pulling.

You take care too and good luck to you 2

Nikix x

zygy2 · Answer

I am so sorry this path is so hard for you!!!  You can keep monitoring things or you can always continue to look for second, third or forth opinions.  You really have to know that you are willing to live with your current situation.  I was only 6mm but the squeezing head pain that made me unable to laugh was just not workable for me!!  It was a long process to find the right person to listen but I got there eventually.  Only give up if you are okay living the way that you are!  Even with my complications since surgery number one,I would not change things.  I am very happy to be trying to fix this situation.  Good luck with things!!

Marybz · Answer

Hi, Like you I have mild 5mm herniation with flow, but everyday i have nausea, dizziness, numbness and tingling in my feet.  My NS says surgery would be my last resort and he would rather treat my symptoms for now.  Thank God I always wake up feeling better than when I go to bed at night or I don't think I could take it either.  Anyway, taking good care of myself helps, ie exercise, eat right (less salt), drink plenty of fluids, Advil and ice on my neck, avoid alcohol, don't lift heavy objects over my head, etc.  Take care and Good Luck!

Mary