surgery success

[loweg23]

I am fairly new to chiari and very scared.  I have so many questions. I am having a lot of back pain all up and down spine and breathing troubles and I have a lot of scary weakness that is getting worse fast and can barely sleep.  And lots of anxiety.   Has anyone else experienced this and had a successful outcome after sugery?  Where did you get it done?

[loweg23]

thank you.  I have contacted dr. oro's office and sent them paperwork.  Hopefully will hear from them soon.  I pray that we all find strength to deal with this until they find a cure.  I see that you had no more limb numbness and less weakness 50 days post op.  Is that getting better?  I would love to say that also. I struggle with a lot of pain and fibro-like stuff and a lot of back pain/nausea when I am sleeping.  I saw a post about a lady that was symptom free for 18 years before some came back  and one who has been for 11 years(though it took her 2 to fully get there)  I would like to be able to say that

[Rylanesmom]

Surgery would only be recommended by a chiari specialist if necessary....to stop progression.  For me I hade cf blocky found when they did cine flow study.  They also move faster if you have a srynx. Some things make surgery necessary as some damage is permanent and hey aren't really able to tell exactly what will be better.  If you don't have blockages then they may watch wait and see how you progress.  Dr Oro said when he oes sop urgery on someon without related conditions 80% have improvement.  My chances where lower since I have several related conditions yet I am thankful to say I have many improvements.  I also feel stronger:) feel free to browse my journal andi posted a lot of pictures post op so you could really see hi the scar progressed.  

[loweg23]

true, they did run a lot of blood tests.  I guess since my son has also been having some similar symptoms, I worry that it could be something else.  Especially since a house test showed some moderate mold levels, which can really harm someone with a low immunity or who is predisposed. My son and I both tire out very easily and on certain days have a lot of breathing trouble.   No, not allergic to dye, just don't like putting that kind of stuff in my body.  I mean, I don't want to just go get brain surgery if it's not going to make things better in some way.  Unfortunately I have seen lots of bad stories, along with the good ones.  I'm glad you guys are here though to talk to.  Had a very bad "spell" early this morning (thought it was it for me) and so have been furiously searching all day for something to help. All I have is an appt. with local ns in two weeks. He was apparently trained by Dr. Oro, and my husband has confidence in him, but I havent met him yet and feel like it would be better to try to go somewhere maybe  to actually see dr. oro or maybe to the wisconsin center.  When its your brain, you don't want to mess with it.  I've read so many things about surgery helping some people and making others worse, or symptoms coming back after awhile.  

[Rylanesmom]

The ontrast did not fell like the ct contrast that gives you he warm feeling if that makes a difference....wasn't bad

[Rylanesmom]

I don't know that I think Lyme is worse but that is a simple blood test.  Your symptoms certainly sound like it could be your chiari but they will check you for a lot...again make sure NS is a true chiari specialist as it makes a huge difference.  Your pcp did not use out all the blood and auto immune things before MRI nd finding chiari?  For me it was well no cancer, well no, lme, well no RA.....usually hey go through so many you don't haves before hey find it.

[selmaS]

Yes they use a contrast dye for the CINE as well as the brain MRI that they did....most chiari specialists will want one with and with out contrast and the same goes for the CINE...it is with and with out and a BP clip.

R u allergic?

[loweg23]

No, just going to see the ns in two weeks, but very hard to wait.  Do the cine mris use contrast dye?  I am scared of that stuff.  Of course, I'm scared of csf blockages too.  

[selmaS]

  The herniation size is not as important as if u have an obstruction...did u have a CINE MRI to check for a CSF flow issue?

[loweg23]

thank you. you guys are great.  5mm.  Have been sick for 7 months, with symptoms all over the board and that makes me question partially my diagnosis.   Am very depressed all the time. Just want to be better.  I am very stubborn about not taking anxiety meds, but my husband is going and getting some right now and will force me because he is at his wits end.  Been having really bad muscle spasms and nerve/muscle pain that just popped up in my back and stomach and I am seriously worried.  How do I know it is not something worse like lyme?  I don't want to just treat chiari if that is not all there is.  my mom offered to take me anywhere.  she is so wonderful.  I just don't know where to go.

[Rylanesmom]

Welcome to our group:) sorry you had to find us.  This website is a blessing as you have found people who understand.  I was in your shoes in November and now am 2 mos post op.  It is scary but as you learn it gets better.  I could not sleep without ambien preop (combined with narcotics) due to pain.  2 mos post op I only take ibuprofen.  They also gave me anxiety meds right after diagnosis because there were times I just couldn't qui crying its ok to ask pcp for help.  What mm was your tonsils hurniation? My neurosurgeon is Dr Oro in Aurora Co.  He is one of the top in the country and I love him.  As Selma said there is a list here just do your research and see a true chiari specialist.

[selmaS]

  Hi and welcome to the Chiari forum.

Each of us will tell u a different story as each of us will be affected differently....u can read many of our our stories in our journals by clicking on our name, and going to our profile page to locate the journal.

I had surgery and this May it will be 3 yrs ago.....I am glad I had the surgery and am doing better as a result.

  We do have a list of the members chiari drs for u to use to research drs, the list is NOT a referral, just a means to help u get started researching drs.

  Ask as many questions as u would like...the more educated u r the better chance u have to finding the right dr.,...

This can be scary, but try to relax, stress can make ur symptoms worse....know that u r not alone.

  "selma"