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DR. Said. I need surgery the surgeon said no?

4 years ago I noticed I have a problem with my eyes  strange thing happens for days then it will go away only to happen again.  It’s weird but it feels like my eyes are going gross or it’s hard  for me to look at something .  It’s weird it not like I’ll see blurry at times it just that my eyes don’t seem to work normal and I’m having to force them to look at  something and it’s hard to do. I notice now when I yawn my hand will shake.    I than started to feel vibrations in my legs to where I’d felt like a cell phone was on vibrate ringing in my leg.  I would look at my leg in the area and nothing was moving on the outside but I could feel it on the inside .  Than my fingers began to hurt and get numb and sting, eventually my feet began to feel like pins and needles and numbness and tingling, lower back pain frequent urinations, horrible headache that last at times 11-14 days non stop, brain fog, talking and can’t get words out my mouth but in my head I know what I want to say, my scalp hurts so bad at times only from the middle center down to the base, crying, more unable to control anger, frustrated easily, ringing in ears, had ear infection for over a year right before these other symptoms started.  Oh let me say I’m 54 years old.  Continuing, my face and jaw in the past 7 months started hurting feeling like someone is twisting my lower jaw from the top, at times my teeth would hurt when I get headaches, and for past 5 months or so the area between my shoulder blades in the back and neck hurt and feel tense as if someone is pulling  them upward and I find myself always tense and having to intentionally relax them all day long.  I wake up now in pain that will go away about 20_30 minutes of walking around. I get nauseous sometimes  but have never thrown up.  I get upset very easily and even I feel crazy not understanding why things frustrate me and I can’t control it. Some days when my jaw and face feel weird tingly or numb it’s apparently swollen because my devices will not recognize  my face  but off thing when I fell better and face not hurting my phone will recognize and open .   After three years of complaining, thought I can’t say i was  running to doctors often, because I don’t like going to doctors, my doctor ran test to see if I had Fibromyalgia lupus some other neurological issue because she felt my symptoms were neurological. The test she ran didn’t come back with anything so she was stumped didn’t know what to tell me because she couldn’t find what was wrong. After a while my headaches started to get worse and that they hurt much worse and differently and they were lasting five days, a week, 11 days, 14 days nonstop. I was getting depressed and anxious tired of the headaches that were pretty much unbearable and I went to her crying pleading basically she ran an MRI and they saw something that they were not looking for. I understand that Chiarai  malformations  are usually found accidentally. They happen to find mine accidentally  looking for other things and thank God someone studying my scans noticed it  which is 5.5 MM and needed to do a CT scan and determined it was in fact CHIARI malformation and whatever other information they needed to know. I was told by my doctor called me after I received a letter in the mail saying that they found a significant abnormality in my skull and that I needed to contact my doctor immediately. I was scared but I called and eventually was told that I have CHIARI and that I needed to see a neurosurgeon because mine is at a point where I would need surgery. I was scared I cried but I was tired of hurting and being sick that I was just ready to do when I got to the neurosurgeon he walked in and the first thing out of his mouth worse you don’t need surgery and then he proceeded to show me the scar on his neck and it felt to me like he was really trying to discourage me from having this surgery. He complained or talked about how bad his pain was that it was not a simple surgery that most people don’t get much relief from it if any at all. I felt like they thought I just wanted surgery and that’s why am there. I was Only there because my doctor said I needed surgery.  As I begin to tell him my symptoms it was clear to me that some of my symptoms he thought I was probably making up. I began to cry because at that moment I knew or felt okay im not going to get any relief at this point.  They sent me to a neurologist who tell my info had me have blood works and urine test abs it’s been months and I never got a call for test results and could not make my
Appointment they set because i was sick and concerned I may have. Had covid never got a cal back from them and being so tired and frustrated and felt like no one thought it was serious I have left doctors alone  and have been dealing the best I can. I’m afraid or surgery but want some other kind of relief and I don’t like taking meds synthetic drugs.     The neurosurgeon also fave me the impression that he did not think all
My symptoms were from Charai malformation because mine was only 5.5mm .  I’m just tired of feeling sick daily however for the past few days ironically I have felt okay enough and didn’t have a headache.   Also, anxiety and feelings of depression are when I’m feeling today and I don’t understand why I would have anxiety or feeling sad and down . Thanks to this site I can vent .   I’m tired of crying and not being taken seriously .   Sorry if I’m all over the place as I am
Aware that even my thoughts are not able to be organized .
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620923 tn?1452915648
To- WhitneyJ03-- I had the posterior fossa decompression surgery which is done to allow more room for CSF to flow freely. I also had a partially retroflexed odontoid which narrowed the area for me even more. I hope that helps answer your question...if not, continue to ask...and I will try to answer to my best ability.
Helpful - 0
620923 tn?1452915648
Hi and welcome to the Chiari forum.

I am so sorry your Drs.  have scared and frustrated you...unfortunately most of us here have had the same experience. The biggest problem is MOST Drs. do not know enough about Chiari to make the statements of you needed OR not needing surgery.

From what you explained above, you had a MRI...a 5 mm herniation....that alone does not indicate you need surgery....you would need further testing to find that out. And the Dr. is correct in surgery may not help with the symptoms you have....Surgery is done to restore CSF flow when it has been disrupted. You will need a CINE MRI to check CSF flow.

Many Drs. look at the length of herniation of the cerebral tonsils to determine if you have Chiari or not...However...Chiari is not the herniation, it is a malformation of the skull which creates the herniation since that portion of the skull is too small....

Chiari symptoms also cycle which could explain you were feeling better....it can also worsen when you are sick or stressed.

The first thing you need to do, is educate yourself on Chiari and ALL related conditions...and then research Drs. to find the right one for you....NOT ALL neurosurgeons are experienced or have the knowledge to help with Chiari and all the related conditions.....for this reason surgery could leave you in worse shape then before surgery.

I had surgery on May of '09...so coming up on 12 years....and it took years for me to see all the benefits of having the surgery....it is not instant, and you have to be patient. Too many want to "return to normal" and rush their recovery and could also cause set backs. Then there are those of us that also have a few related conditions that can blur the lines of symptoms...not knowing are they from Chiari or one of the other many lovelies we have hanging on.....

Take a deep breath....exhale and take your time....there is no reason to rush into finding a Dr. and having this surgery....for many of us it can be life altering....some have fantastic results...while others do not. I am lucky in that I am better then before surgery....but I am not the same.

Be prepared for your life's path to possibly change directions, if for a few years....or indefinitely....
taking time with recovery is the best way forward in my honest opinion....as I said this journey will be different for each one of us. You need to research not only Chiari and related conditions but the Drs. you expect to help guide you....if they do not do their own research and work primarily with Chiari , then you may want to reconsider them as your Dr. AS I have mentioned many times on this site..Most car mechanics can replace a transmission.....and do a good job, but they may not have the proper skills to do one on a foreign car...you need a specialist...and not just a Transmission shop, BUT a Foreign Car Transmission shop....

Having the right Dr. is key!
Take your time...
and know you are not alone.
Helpful - 0
I forgot to tell you, one of the first NS's I went to told me I didn't need the surgery.....and he wanted to do surgery on my cervical spine for stenosis...he told me that was my issue....funny , I found a different Dr. and had surgery and my cervical spine wasn't touched and I am better then I was.....so, do not let a Dr. that most likely wasn't capable of helping you, to upset you....Plus, he may be right...maybe you are one of us that does not require surgery...as I said surgery is done to restore CSF flow and slow progression...and by that I mean with CSF flow is obstructed it can cause a syrinx to form, the condition is called SYRINGOMYELIA....restoring CSF flow will slow progression of a syrinx....or prevent one from forming. If you do not have an obstruction there is no reason to have this surgery. That does not mean there isn't some form of treatment to help you....so again, I say educate yourself on this and related conditions and get more testing done to know what is going on.
Thank you for that information. I am wondering what type of surgery did you have performed? I am currently dealing with the same problems.
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