Neurologist visit

[pocko]

Hi all again its been a while since I last posted but have been keeping an eye on things. But I have a question and need some help. I finally got to see a Neurologist and he ordered an MRI. He listed to look for a syrinx and they scanned my head and all of my spine.This is what they found : 7mm of cerebellar tonsillar decent everything else was fine. No abnormal signal is seen in the cerebrum, cerebellum or brain stem. There is no restricted diffusion. The spine was then scanned and said no syrinx and no abnormal signal in the spine.

So here is the question I have all the symptoms ie, numbness in hands and feet, high blood pressure, low sensitivity to hot and cold in hands and feet etc is it normal to have the symptoms and no syrinx or are the symptoms from the chiari and that causes a syrinx that then causes more problems?

However this was the conversation I had with the NL:
him: its only 7mm its probably nothing
me: what else could cause the syptoms
him: not sure could be anything
me: what are the symptoms of chiai
him: high blood pressure tingling and numbness in the hands and feet etc
(pause)
him: probably not in your case tho its only 7mm

Any help would be greatly appreciated and I hope the conversation above makes you smile cause after a while I did

Nathan

[*Stormy*]

Good luck...please let us know how you are doing:)

Carolyn

[pocko]

Thanks everyone it helped a lot. I had to fight to get the results as no -one would say over the phone it had to be an appointment and the soonest they would get me in is six weeks. Just for the results. But I will be looking for a chiari specialist now

[*Stormy*]

Again so frustrating.....these NL's see the herniation on the MRI, the patients have the symptoms...but yet they want to do nothing about it!!!!

I have or have had all the symptoms you describe and I don't have a syrinx either. In fact, they so completely disregarded my MRI that I wasn't even told about the herniation till about 6 mos after. I was only told then b/c I saw a NS who actually knew what to look for and knew that Chiari can cause all the symptoms. My gait was hugely affected which caused him to think there may have been a syrinx but when one wasn't found, he told me the pressure alone on my spinal cord could cause those symptoms. Having the surgery made a big difference for me especially with my walking. I am not cured but I have seen improvement and the progression has been stopped.

Take the others advice and start looking for a Chiari specialist...you will be so glad you did!! This NL you have seen sounds very uneducated in the effects of Chiari.

Good luck!
Carolyn

[STL5]

I have not been dealing with doctors for years like others so I am not sure if having chiari with a syrinx and csf blockage is better since I really have not had any of the run around that so many of you have had- kind of feel fortunate that I haven’t been “tortured” while in pain.  My primary care doctor basically said “I don’t know what is wrong.  I can send you for an expensive test or go the cheaper route first and send you to a neurologist.”  I saw a neurologist who put me through all kinds of simple tests in her office and basically said “You do not have MS or carpal tunnel but I do not know what is wrong so I am sending you for an MRI- cervical and thoracic.”  So when some of you are misdiagnosed with MS it makes me wonder what she knew by her simple tests that another neurologist did not.  When the MRI came back she referred me to a neurosurgeon and made me promise that I would get a second opinion from another neurosurgeon.  I saw one neurosurgeon who said that my symptoms were not severe enough and would recommend waiting.  I waited 3 months then saw a second neurosurgeon for my second opinion.  He redid the MRI but added on a lumbar mri and brain mri (this is when I was told that I had csf blockage).  He ran me through many of the same tests that I had done in the office with the neurologist and asked if my symptoms were getting better, staying the same, or getting worse.  Since my symptoms are progressively getting worse (along with syrinx & blockage) he recommended surgery.  I feel lucky that instead of making me feel stupid the doctor basically said that it is a condition that not a lot is known, research needs to be done still, but this is what we can do to maybe help you (surgery).  There are no guarantees or cure for this condition.  I appreciated his honesty especially since chiari is not his specialty.  He even offered to forward his notes and my test results to another doctor if I wanted a third opinion.  I do not have high blood pressure and only have that severe pain in my head when I cough- rarely have headaches.  I do have numbness and pain along with balance issues

[pamk5]

Hello Nathan, It took me several NS's and NL's to finally understand that there was a difference between a true CM specialist and the other docs.  I have heard it all from "that tiny herniation couldnt possibly be causing your symptoms" to "drink gatorade and see me in a month"  Most docs just dont get it.  

I have also had low BP all my life and as a complication to CM I have developed neurally mediated hypotension and postural orthostatic tachycardic syndrome.  So yes he is wrong.  I do have the tingling and at times cant tell where my legs and arms are if that makes sense.  Like they dont have feeling at all.  

I finally made it to a CM specialist a few months ago and am awaiting a surgery date now.  The difference is that you arent trying to qualify your symptoms, they already understand.   Even though there is a list of symptoms a mile long most of us have quite a few in common.  Seek out a specialist and gather your scans and go to see one.  Be aware you may have to travel.  

Best of luck to you!
Pam

[selmaS]

  

  Hi...I am smiling as I never had high blood pressure in fact mine tends to be on the low side...always has ....but I had the tingling too...so, not sure  where he gets his ideas from......

  Next, u said they MRI'd ur spine...the whole thing?,....the thoracic, lumbar and cervical spine?...all 3 areas?.....Many only do a brain MRI and then a cervical spine MRI.....

  The problems lie with the dr  u r seeing not having the experience with chiari...as he is looking at the size of ur herniation to dispel it being the cause of ur symptoms and a true chiari dr knows it is not the size of the herniation but the CSF blockage and overcrowding.

And symptoms....symptoms themselves should make the dr say ..wait we have to take a closer look...but they don't and they all have a diff magic number the herniation should be....so it gets confusing for us, the patient.

"selma"