Chiari Malformation Community
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nervous

Ive already been to 2 neurologists who say my syrinx cant be causing the pain and symptoms I have. Thursday im going to a neurosurgeon who specializes in the chiari and syrinx. Just worried I will hear the same thing again. I do have fibro also but dont think all my pain is just from that. I picked my granddaughter up yesterday just one time and that caused alot of neck pain and a headache. Ive also been getting a numb feeling in my face, sometimes the whole thing and sometimes just on one side, im also very clumsy lately and drop things. Most of my pain is in my neck, shoulders, arms, and legs, and sometimes my chest and ribs. I have gotten very weak to, even a gallon of milk is really heavy to me. Are these some of the symptoms everyone else has? I lost my password for this sight so I havent been on here for quite some time.   pm64
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1429415_tn?1308271820
Oops, sorry everybody. Just noticed the discussion on symptoms. So forget my post. lol.
pm64
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999891_tn?1407279676
Hi, you need a Neurosurgeon as a Syrinx is resolved by surgery if it is deemed problematic, the best surgeon is one who is dealing with CM/SM as a big part of their practice.
I see from an older post that your Syrinx is @ C6>C7 and you do not have CM.
A Syrinx can causes a wide variety of symptoms due to damage of the spinal cord including chronic pain, abnormal sensations and loss of sensation particularly in the hands. I find it hard to distinguish hot from cold in my feet & hands.
Any straining caused by coughing, sneezing or LIFTING can cause CSF pressure to increase, this could cause the Syrinx to expand.  

The numbness you have in your face is a cause for concern and could be a CM problem.
You should make a list of your symptoms and bring it with you on Thursday, also make a list of questions you need answering.
Start with What is causing the Syrinx formation?
If there is damage caused by the Syrinx will it be reversible?

Good luck on Thursday :)

Ray
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1429415_tn?1308271820
Hi Ray, thanks for your input, all this is just crazy. And you can tell I dont know a whole lot about it. I just know when I lift anything it can take days to get over it. And I feel like its all getting worse. The pain meds only take the edge off, I take them daily just to get thru the day. I wrote down all my symptoms that I could think of and the questions you suggested. If you think of anything else before thurs please let me know. Im so fed up with doctors that say its nothing to worry about. Ive said all along that I dont really feel I have fibro, maybe true, maybe denial. I just know my whole world was taken away from me and I hate not having much of a life. Im just venting, not crabin at you, lol. Take Care and Thank you so much!!!
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620923_tn?1413427272


Hi and welcome to the Chiari/Syringomyelia forum.

It is unfortunate but many drs many of us see mis dx us with conditions like fibro, lupus..etc...and they tell it is not our chiari or syringomyelia is not the cause of our pain/symptoms.

The forum here is for u to vent , crab, get it off ur chest...and know we all understand : )


   "selma"
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1429415_tn?1308271820
Thanks for welcoming me. I dont have this site all figured out yet, still clicking on everything so I know. It is SO nice to talk to people who do understand, family and freinds just dont get it. They know you hurt but have no idea what its really like. This morning I took pain pills at 10am, went and took a shower, did a few dishes and back on the couch I am. So much pain and presure in my neck, shoulder area. I dont get alot of terrible headaches, just have a little one most the time. But I do take alot of ibuprofen so who knows. I just hope and pray that this is the doctor I need, anxious for my appointment. Do you think I should take a copy of my mri's or just let him do new ones. The ones I have were done at a rinky dink small town hospital, where im going they have all the new technology more so. Even talking for to long causes me pain in the neck, ugh. Thanks so much, this site is awsome for support.
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620923_tn?1413427272


  Hi...if u have the copies of the MRI's and they were done less than 6 months ago take them, most ins comps will not pay for more in a short time frame...so, take what u have and if u have old ones that were done get copies of those as well so he can compare them.

If they r the wrong slice or magnification they mayu be able to ask for new MRI's under a diff code that the ins will have to accept, so no worries about the small town hosp.....

I am so glad u r getting the support u need from the site it was my rock and salvation as well...the friends u make here r lifetime friends : )

   "selma"
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999891_tn?1407279676
Hi pm64, vent away, we understand the need to vent. It can be very frustrating when you are dealing with so much ignorance and lack of a desire to understand No one can begin to understand what having this illness is like.
I have had many different diagnoses over the past few years, everything from Menears Disease, Benign paroxysmal positional vertigo to Peripheral neuropathy. One doctor will come up with a DX, I will be sent to a doctor who specializes in this illness, this new Dr will say no it is not that and so the cycle begins again. Eventually when I got my DX it was very obvious on my MRI so the Dr's could not deny the DX. This did not change anything because now they say my symptoms are not consistent with my DX yet they cant say what is causing my symptoms, add insult to injury they dont seem interested in finding out what is causing my symptoms.
OK now I'm venting lol

You should ask if there are any other abnormality's on your scans.
If you have had any injury to your neck in the past you need to make your Dr aware of this.

Ray
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Avatar_f_tn
This is my first time here. My 31 year old daughter has just been diagnosed w/Chiari 1 Malformation and Syringomyelia. We have had two surgeons recommend surgery.

It is my understanding that given she has developed the Syrinx, though her symtoms (symptoms) aren't too severe yet we should have decompression surgery.

I would appreciate any suggestions/input regarding this.

Thank you-

Pamela
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

Well first u may find NS's that suggest surgery, but do be sure they have experience ....this is a surgery that u do not want a dr that only does a few of these...u want a dr that their main focus of their practice is chiari and chiari related conditions.

Not knowing whom u got the surgery rx from, I can only suggest u take a look at their credentials.

Once u have a dr u feel comfortable with then move forward with what they suggest is the best method of action.

Did ur DD have a CINE MRI?...was she checked for tethered cord, ehlers-danlos?...ICP?

  Do u know how large her syrinx is?Where it is located and what symptoms she has as a result of it?

   "selma"
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Yes, she had a Cine MRI, but nothing has been said about a Tethered Cord, or the other things you mentioned. The neurosurgeon we me today did not seem to want to share where the Syrinx was at. My daughter really like him and felt good about surgery.

He  said he had performed hundreds of surgeries. Nothing on his bio said anything about Chiari or Syrinxmyelia, although he does specialize in the skull base.

Thanks, Selma.
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1429415_tn?1308271820
Hi again. So it sounds like you have been to a bunch of quacks to. I hope this one im going to takes this serious, or I might blow up, lol.  Have your learned whether or not the size of the syrinx matters??? Mine is only 8mm.  Ive heard both so just curious how people that know more about this feel on the subject. Thanks.           Peggy
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1429415_tn?1308271820
Well I had my appointment today. And this is what I was told. Im not sure what we are seeing in the mri is in fact a syrinx, and the pain you are feeling wouldnt be from this if it is a syrinx. Im not saying its not so lets do another mri and then we will know. I saw the mri and there is definately something within my spinal cord.  So frustrating!!!
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620923_tn?1413427272

  Hi...I am sorry, but what u r experiencing is  what we call the Royal Chiari/Syringomyelia run around.Not all Drs r well informed or experienced in this area and will not admit that nor will they concede that either could be causing pain.

I am not sure who u saw today, and what experience they have/had in this area...all I can suggest is go get another opinion. I had this happen to me a few times with so called experts  in NS...but they did not know chiari even tho they claimed to....

  Chin up : )

  "selma"
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I saw Dr. Thorell in omaha.  Thanks for your opinion.  If I had not seen the mri I wouldnt be so upset, but you could clearly see something within my spinal cord. Im going to go for the new mri and then get copys of both and go elsewhere.  Thot about going to Denver, sounds like that Dr. Oro (or something like that) is very good with this.
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  Many time there r artifacts on MRI's...and they mean nothing....so, do not look for something that is not there...just a thought...and a possibility.

Dr Oro is very good....and would be an ideal person to get another opinion from.

  Hang in there : )

  "selma"
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Hi!

I am sorry to hear that things did not go well.  It is discouraging when you have these symptoms and the DR is unable to validate why.  In my own circumstances, when the Dr said "I believe you" I was so relieved.  I have a syrinx as well as chiari.  The DR was not as much concerned with the size as he was with my symptoms and how they were progressing.  I have/had problems with left side numbness, right hand numbness, cold hand/feet, balance issues, dropping items, pain on left side- especially around shoulder/chest area, severe head pain when cough, when I did too much my chest would get very tight and painful and I would have to stop what I was doing because it was hard to breath...well you get the idea.

Keep searching for a DR that is able to help!  I would always have a copy of any MRI so that they have something to compare to.  Someimes they may not like how the original MRI was done.  I am just sorry to hear that you have to go through this.
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1429415_tn?1308271820
Thanks for your concern. I guess all I can do is wait for the mri to be done and go from there. I also have chest  pain if I do to much, and many of the same symptoms that you do. He said all of it could just be the fibro.  I will definately go for another opinion before I give up, just sick of going to doctors that dont care. This one didnt say a word about my symptoms either. It would be great if I dont have the syrinx, but for  peace of mind I want another opinion. Ive seen the report on my mri from last july and it says a syrinx, just dont get how a trained radiologist could be wrong but I suppose anything is possible.
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1429415_tn?1308271820
   I am NOT looking for something that is not there. I just know what ive been told by 3 other doctors and ive read the radiologists report on the mri. I also know what im feeling and it is not normal. Ive been told go to this doctor, no go to this one, no go to this one and on and on. Its a vicious cycle that ive been on. Ive done tons of reading on this stuff as well. From what ive read theres only 2 real experts in this and that is in new york and denver (aurora). Maybe the new mri will tell us more, dont know, just know im tired of bs answers and tired of feeling like this. I would give anything to just have one day pain free, as im sure alot of others are to. And finding a doctor that cares would be great to.
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Just want to apologize for that last one, im just very frustrated over this whole thing. And obviously I have not accepted this, whether it be a syrinx or fibro. Hope you have a great day and again im sorry for taking a bad day out on you.    Peggy
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620923_tn?1413427272


No worries...it is just very frustrating dealing with the MRI films and the reports as the radiologists all use diff verbiage and there can be things like an artifact that shows up and it is in reality nothing....that is all I meant by my comment, sorry to have upset u on a bad day.

A syrinx or chiari neither is an easy condition to accept...who would want either...no one...so I understand completely.

And there r more experts than the 2 u mentioned...there is Dr Rosner in NC, and Dr Henderson in Bethesda, MD.....and many others.....

  Trust me, if neone is going to understand how u feel , I do as do the other members here....I just saw my PCP yesterday to up my meds for pain....

Just know it is safe to blow ur stack here and no 1 will be ofened : )

  "selma"
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1429415_tn?1308271820
Thanks selma, you made me feel lots better. I felt so bad after I read what I put. Is there a list of specialists somewhere? Since im in nebraska I was thinking denver is probly the closest one for me to go to. Plus it depends what the new mri shows. Ive looked at many pics of mri's with a syrinx and mine looks identical only longer so I still dont know what to think, just know how I feel. Where do I go to look at the list of symptoms? I found it once but now I cant. Thanks for your support!!!
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620923_tn?1413427272

No worries...we all understand here : )

Sure we have several lists that the members helped to compile...they r not meant as a referral, only a means to help u start ur research on the drs. Members list their Drs on the list when they r happy with them, not all may fall into the classification of a true chiari specialist, but is well experienced and informed.U have to see several and decide which is best for u.http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
Below is the link for syringomyelia symptoms.
http://www.medhelp.org/health_pages/Neurological%20Disorders/List-of-Syringomyelia-Syrinx-Symptoms/show/1025?cid=186

These can be found in the Health Pages-http://www.medhelp.org/health_pages/list?cid=186

  "selma"
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Avatar_n_tn
Pm64 and selmaS, My wife has been on this same journey for 13 years. We had the surgery in NY six years ago. Helped with so many symptoms. HOWEVER, her major complaint has been spastic gait and problems walking. not helped by the surgery. We found she has a congenitally narrow spinal canal! This is a common co-morbidity with A-C. The narrow cervical canal can be easily measured from any disc image MRI's. It's called the Anterior-Posterior spinal canal measurement and even the best radiologists don't look for this condition. Ask the Dr to measure the canal on sagital images. A huge study was done with fibro pts and found them mis- diagnosed.Some had a corrective operation and all with the laminoplasty/laminectomy procedure improved. Non of the non operated people improved. Check it out. It explains why so many chiari pts fail to improve.
Basically the upper spine and skull is decompressed but no one pays attention to the rest of the cervical spine. A normal spinal canal should br 15-17 mm. Less than 12 is considered symptomatic
"Stenosis_steve"
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620923_tn?1413427272


Hi and welcome to the Chiari forum.

U r soooooooo right...I know I have cervical stinosis and need that surgery...my NS did tell me about it, but I have yet to get back for  it...many reasons...but I know what u r saying...plus, I have a bulging disk in the area of stinosis which can create the same CSF obstruction as the herniated tonsils.....

Too many of us have additional issues going on and not all Drs look to see what all is going on once they made a dx...they tend to stop and treat....when  if they would continue to look and see what else is going on, they may be able to offer more relief.

Thank u for sharing that bit of info, and I do hope u stick around and continue to share and contribute to the forum.

   "selma"
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1429415_tn?1308271820
Hi again, I have a question for you. Is a syrinx and a lesion the same thing?
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620923_tn?1413427272

  Hi...I saw the other thread and answered...no, it depends where they r located..a syrinx is located in the spinal cord.....the lesion was not....

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