Hi Everyone, I have to see my NL later today I'm feeling some anxiety about it. He always has a way of making me feel like I am exaggerating my pain level. I have already written down all of my new symptoms but I already know he's going to tell me that they can't all be coming from the chiari or the syrinx.
Last time I was there he told me my back pain isn't from the syrinx because it's not very wide. He has no Idea what he's talking about because while it's not wide it runs the whole length of my spinal cord from C1-L2. I already have a referral so I can start seeing someone else I have yet to find a NL that has experience with chiari and will take my insurance.
I'm a nanny so I don't get health benefits that leaves me with Medicaid which is like taboo to doctors. I have been in so much pain can barely do my job anymore that I have no choice right now but to go back to him until I can find a better doctor to go to. I wasn't supposed to see him until June cause in December he told me I was stable what ever that means. I am seeing him today in hope of getting better pain relief and another MRI. I am nervous that the syrinx is getting bigger cause I have alot of burning in my spine.
Anyway I guess I just needed to vent about it. I'll let you guys know how it went when I get back tonight.
This is just my experience.....NL's were USELESS ......no clue about Chiari and its many, many Sx's...some folk were lucky and found good NL's..not me...and it sounds like yours is a fool. Hasn't this NL referred you to a NS yet???????
With a syrinx from C1-L2.....come on now....you need to see a NS...in my opinion.
Do you have a primary doctor??? I was lucky and had a great primary who helped me with seeing the right doctors....for me, NL's were...lets say.."out of the loop"...once I saw the NS . See, my primary sent me to the 1st NL who was a complete idiot..asked me if I could run....I had drop foot...I could barely walk and this joker tells me to run for him!!!!!!!!! But at least that fool ordered every test known to mankind...so basically everything else was ruled out.
He didn't know what was wrong with me but he said it wasn't the Chiari!!! On to next NL...nice guy...but knew nothing about Chiari..and it went on like this til finally my primary said...."Go see Sampath"...Dr. Sampath is the Chief NS where I use to live...
He went over MRI's and 1st he addressed the bad disc in my neck...his thought was...lets fix what we know for sure is broken..wait 6 mths and see what Sx's are left.....did that...still had Sx's ...then we went on to the decompression.
I went to Boston to get a 2nd opinion on the decompression and the doc there totally agreed with my doc.
I has surgery 2.5 yrs ago and have had positive results...don't get me wrong...there are still issues , but there has been progress as well.
Don't get intimidated by these "specialists"...you are in pain and it does not matter if you are on Medicaide.....you are a suffering human being....you deserve to be treated with respect!!
Ask this NL today if he can refer you to a NS....and see what the NS has to say.....make sure you keep all copies of MRI's , reports and such......Once again, this is just my opinion and how things went for me.
Hey Lori, thanks for the advice. I have not seen a NS because my neurologist said I don’t need surgery so he won’t send me to one. He looked at my MRI’s from October and said the syrinx is narrow so I wouldn’t need surgery. I still don’t know how much of a herniation I have, all of my mri reports just say " chiari malformation with peglike cerebellar tonsils extending inferiorly to the level of the posterior C1 arch ". I don’t know how bad that would be. i’m going to ask him today if he knows the exact mm it is extending. They also found out I have mild scoliosis along with spinal atrophy. I just feel like I’m 29 yrs old and falling apart but no one wants to do anything about it. I feel like my hands are tied and there is no hope for me.
Please ask this NL for a referral to NS..whats the harm in asking??? Doesn't your Dx warrant a NS consult???? I would think so...
Oh... please don't lose hope...i know that feeling though, trust me..it is awful...to feel like there is no light at the end of the tunnel....There is hope...don't let this NL make you feel as though this is nothing and nothing can be done to improve your quality of life.... things will get better...I hate when people say that to me..but , truly, things will get better once you get to the right doctors....Do you have a good primary who can advocate for you?????
Please keep us posted on this,ok????
We are all here to suppport and listen to each other.....
Frances - It does sound as though you might need a more compassionate doctor. Having them listen and knowing that they care makes a lot of difference in the quality of the care. I'm kind of living proof that Chiari can at least contribute to back pain. After I had my chiari surgery a lot of my back pain went away. I still have lower back pain because I have slipped disks. We do have to sometimes fight for how we know our body is feeling so be persistent. I hope you find someone who can help you.
frances you do feel like your falling apart. i went through a stage, that bit by bit my body was shutting down, things were sore or didnt work properly anymore.
you push for what is right for you, this NL sounds like a droopy man, you got his degree out of a cereal box, go to a NS,
let us know how this goes, we are here for you step pf the way, even holding your hand and giving you strength, spirtitly,
Please believe me when I say that you are not alone in this! Doctors have no right to treat you with disrespect or not want to see you because you are on Medicaid. They ALL act like we are exaggerating our symptoms. I could go in there crying in pain and tell them my pain level is at a 10+ and they would not believe me. Neurologists are worthless to me, too. Like Lori said, I have yet to find one that knows anything about Chiari or Syringomyelia. If you have a syrinx, you need to see a surgeon. Call a neurosurgeon on your own. I don't think that you necessarily need a referral from any other doctor. Tell them you had an MRI and what the results were and you want to come in to have the surgeon look at it. Please don't let this go!
Please update us when you get a chance. Very curious as to what happened at the appt. Hope you are feeling okay and got some positive vibes from the doctor this time:)
Hi Ladies, I have to say this visit wasn’t as bad as i thought it was going to be. I felt like he really listened to what I had to say and all the new symptoms I am having. He put me on a whole new cocktail of meds. Lets hope this combo works. I am now taking Opana for pain, Voltaren, Baclofen, Lyrica, and Cambia. I am hoping I don’t get too many side effects from all these new pills, I feel like I was just getting used to my old regimen.
I have to go for 3 MRI’s Brain, cervical, and thoracic. I have to go back to see him in a month once all the tests are done. He said that he is going to send me to a NS next month. I am feeling better now that I have new meds that may work and that I will get to see a NS for a second opinion. I want to thank everyone for all the advice and support you have given me.
I am so glad that the visit was productive.....I pray the new meds help you...Also..that is great you are having the entire spine as well as the brain MRI'd.
I know I am late in saying I am so happy that your appt went well. It sounds like you found a caring doctor that truly wants to help you. He is being thorough in ordering the MRIs and helping you with different meds. Please keep us all posted on how you are doing with the meds and when your next appt is scheduled!