loss of taste

[DAWGS]

Crazy question...in just the last week I have noticed foods I used to love taste ever so bland. Almost as if I am losing my taste...anybody else have this - does it come and go? is it permanent?

I have been contacted by Dr. Oro's office and it seems I am a canidate to be seen by him. Dr. Ellenbogen said I am not surgical right now but I had an inclination that I need to pursue possible surgical correction of this. Crazy neuro symptoms for over 11 years. So tired of this! UGH!!!!!

[selmaS]

Ok...I am back up to speed on u again...lol....my memory needs a jump start every now and then...lol....

Ok....well, again u will have 3 very good opinions at hand to help guide u....

I was dx'd with fibro many yrs ago...I was told by my chiari drs it was not fibro, bu the chiari....the biggest issue is linking all the symptoms as chiari symptoms cycle and  r then considered to be the cause of something else and when u r asked to list chiari symptoms, u do not even consider some bcuz u have written then off on something else.

Keep an open mind, list all the symptoms u have had and r having regardless if u feel it may be fibro, or thyroid or what ever....give it all.

I just got a pair of sneakers MBT's I think, they really help me with balance and they help with toning muscles...right up the spine...and this helps all the joints as well.....I notice I can walk more with these on then a reg shoe....so I guess there r helping me.

Yup, they r all still practicing...I wonder when they will get it right...lol...

Have u been tested for Ehlers-danlos?....that could be an issue and is very similar as far as the pain goes....


ChiariWolf is one member that has had surgery from Dr Di....I know we have more, just can not remember who right now.

I am sure if u PM him he will share info on him.

I hope, that one of the next 2 drs u see may find a way to give u some form of relief....

"selma"

[DAWGS]

Selma...you are always so good at answering and quite profound with your answers as well. I am actually from Seattle and have seen Dr. Ellenbogen who has said at this time I am not surgical. Yet I am planning on seeing Dr. Oro and Dr. Di this summer to verify that I really don't. My mri has been just 5mm and i have had symptoms (other than headaches) for 10 + years even when my herniation was as small as 0-1mm...So my Docs are questioning whether these symptoms are fibromyalgia and the headache is only chiari or if possible all of these have been chiari all along. I guess they are all still "practicing medicine" you know...LOL

I notice with exercise/walking - my other symptoms are better for the day???? Not ever gone just better - helps me with balance, etc...Some other symptoms worsen - crazy - just crazy

[selmaS]

Sorry I don't remember where u r from, but u have good choices of drs to be seen by...I have heard a lot of wonderful reviews of Dr Di....and Dr Oro as well....

Dr Di does the endoscopic PFD....so the amount of hair shaved is less and  the scar is much smaller as well.Like Carolyn said, it is best to get 2 opinions, and to have them both from respected chiari drs is fantastic.!

Do keep us posted on how the visits go.....

as for the taste goes, most have noticed this after surgery....I did not experience an issue with taste as much as I did with smell....I find more and more odors offensive.

I hope it is not a permanent thing especially if it was something u really like : )

"selma"

[*Stormy*]

HI I have heard a lot about him...from several members that have had their surgery done by him and most of them seem extremely satisfied with his care.
He seems to be a caring person, from what I hear..

I would suggest doing a separate post with DR.Di in the headline b/c I know there are many active members here that could give you more advice who have had him as their NS. (They may miss this post).

I am really glad to hear that you have appts with two solid Chiari NS!!!

Carolyn

[DAWGS]

Thanks for the answer...Chiari is a bummer, huh!

Have you ever heard of a Dr. Di at Cleveland Clinic - I also have an appt with him July 14th and will be flying there...I hear he does a less invasive decompression surgery with less complications - have you heard anything about him?

thanks again!