I just want to know when I'm going to feel right again sick so much!

[mistyp29]

I seen a NS for my AMC and he did surgery, I had to be put back in the day after my reliece
From the hospital because my CSF was leaking they put in a lumbar drain and fix me back up (I had a leak in the mesh patch) I do believe he removed the brain tonsils as well, well now fastforward 4yrs and I am still throwing up, and numbness in hands and feet, I was told that I would be better after the surgery, am I the only one that goes to bed feeling fine and wakes up dry heacing, vomiting, and having bowl releace when I SO don't want ro have bowl loss, or am I just nuts, they have done test that say I have an ulcer due to the non stop vomiting right after the first surgery, so I know I have acid reflex , so they have me on omep., and my thyriod started acting up after that, I just want to kmow if rhere is any hope that I will one day wake up and feel great for good with no (flare-up, that what I call my boughts with sickness)

[wonderchiari]

Yes it is fine to use sodium bi carbonate if it is tolerated well ., and I think so mostly it is tolerated well when used in limited quantities ..I was told by a friend that High BP people need to be extra careful while using it.,since it can raise sodium levels .
personally I have used baking soda many times., when I was treated with drugs for menopause -period  problems.The drugs used to cause irritation and gerd issues and I used to have a glass of coldwater with baking soda dissolved.I used to feel much better .I did not have any problems .
  
Yeah It is always better to talk to the dr and know about the acid levels like ... you have said .and I think  that  Baking soda is alkaline.

[selmaS]

  Many like to use home remedies for GI issues...sodium  bi carbonate is often in many meds,,,,so it should be ok if tolerated by the individual...and should not have any effects if someone has Chiari...only if they have an issue with sodium bi carbonate.

Others will drink apple cider vinegar but should only do so if they have low acid levels as it will add acid to the system. plus it is never taken alone it is usually diluted.

Always talk with your Dr to find out which is the situation...high or low levels of acids so you can choose the right course of treatment,

[wonderchiari]

Hi.,

as far as I know carbonated drinks contain carbon-di-oxide in liquid form but baking soda as you would be aware is  sodium bi carbonate ..

as far as I know ....It is not the one which is  used in carbonated drinks , it has been used  at homes by grandmothers  in small quantities for gastric remedies  and also for making certain delicacies fluffy even at home .

However I dont know if everyone tolerates it well and if it is safe  for  especially the chiarians  .

[selmaS]

  Have to agree ginger has worked well for me...I get ginger tea and that is great for GI issues.

Carbonated drinks can cause more issues like you said so soda's are to be avoided and when looking at a tea it needs to be herbal or green tea which is decaffinated as caffeine can also affect GI track.

[mistyp29]

I will sure give that a try I love ginger ale that has been the best but sometimes to much carbanarion, these sound like things that may help so I'm all for it! Thanks wonderchiari

[wonderchiari]

Hi  

would suggest a home remedy ...if  it suits you ...you are comfortable with it and does not cause stomach irritations do follow it .

take a pinch of baking soda dissolve it proportionately(neither  diluting it too much nor concentrating it too much) in cold water..Drink it an hour after meals or in between any  meals .

you can try to drink a glass of cold mud (clay) pot water or water kept over night  from copper  vessel  with basal leaves half an hour  before you eat ...it also helps .if having such water is not possible... try to make ginger dicoction (ginger cut into pieces.,  boiled and the essence filtered) and drink it before the main meals .

[mistyp29]

I am 30 I had the DPS amd cerebral tonsils removed since then have what I call flare-ups, but your right I think I maybe on the right path as I have preyed for so long and these doors just keep opening up it took me almost 5yrs to find others likeme and now I'm going to talk to the primary doc about sending a request to see a chiari specialist in the comming weeks have been to 2G.I. specialist and I'm going through the same test that were ran b4, I'm just hopeing no more cutting on me, that's what I'm nervous about

[wonderchiari]

hi I felt very bad while reading your writeup.
shall remember to pray for you.

selma has briefed about the need for testing for other associated conditions and other factors which might be left out by some drs while performing chiari surgery

How old are you? if you are quite old then digestion might be slow due to aging, gerd issues might be there due to chiari as well as age and might be some other gastric condition not related to chiari but which popped up  after chiari surgery is also a distant possiblity.

hang in there patiently.i know it is easier aid than done .but dont get frustrated.

[selmaS]

  We do have a list of Drs for you to use to research them....I will bump it up for you....I also know of 2 Chiari Drs in Fl one in Miami and one is Orlando.

And I know many of us have reflux and thyroid issues those are not what I was referring to, I mean Syringomyelia (syrinx) disk issues, ICP, POTS, tethered cord, sleep apnea, ehlers-danlos, CCI....

I will bump that list up...keep in mind the list is not a referral nor an endorsement for those listed it is only meant as a tool to start researching Drs.

[mistyp29]

If by related problems do you mean, acid reflex, pmdd, tyroid disease, glaucoma, thoes are the issues I delt with b4 well most, all but the ulcer, acid reflex, tyroid,  those I delt with after, the new G.I. specialist thinks maybe pmdd might be the cause, its weird how I go to bed fine one night wake up about 1hr or so after I start feeling the feeling of just knowing its comming and then its count down till about 11 or when it was worse I would stay sick day and night for days at a time, but yes I will let you know what doctor says I'm trying to find the right NS but my luck with the doctor lotto *****, not sure where to begin to look, to be honest

[selmaS]

  Did they rule out related conditions? Many times when we have persistent issues post op it can be a related condition we were not aware of b4 surgery....you would not be the first to have this occur...and many of them were able to get relief....it is finding the right Dr that knows what is going on most times....

But ,.,you are tight you should not have to deal with it like this...I had surgery 5 yrs ago and only had nausea and vomiting while in the hospital....you should be feeling better a few yrs ago already.. I know it can take time for  us to heal...but not all of these issues should still be present.

Let me know how this other Dr is and how that visit goes.

[mistyp29]

Yes they fixed the spinal leak, they even put a lumbar drain in, I'm going to get into see another NS in the next couple of months but I'm pretty sure no fluid leaks, but I DO know they took the cerebral tomsils, because they where down in , y spinal colum and my spine was creating a cyst in there to prevent it from moving any further forward, I'm just really scared this will be permanent, I mean it seems to get less harsh as the years go by but....

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry you have been going this long post op and still are feeling like this.....do you know what all was done during your surgery ...you said you think you had the cerebral tonsils removed....and they put in a mesh patch....

Do you know if you have any related conditions?

Are you sure the leak was stopped?