Neurologists & Neurosurgeon

Welcome Greetings and Introductions
1

Hello Everyone,

Here's a bit of my story...

I had been having neck pain for a few days but on Sunday I was paralyzed from the neck down for about 2 hrs in bed only feeling tingling in my hands. I went to the ER they did nothing but just give me pain medicine. Monday went back to another ER they did nothing either but give me the same meds and both denied me an MRI or Scan or Xray. They told me since I had no major injury I had to see my doctor. Tuesday I saw my doc and he referred me to see a physiatrist who sent me for a scan and mri and it comes to me having Chiari just like you all.

I had 2 appointments today and wanted feedback from you guys. Being just diagnosed and referred to both by my rehab doctor and my pcp, well I went and the Neurosurgeon stated that I was ok and that he'd reassess me in 2 weeks. He stated that he wouldn't do surgery unless I couldn't swallow. (I'm not excited nor happy about this) Do I really have to wait for it to get this bad? I of course don't want someone who just wants to cut me open for a couple thousand dollars but I am in pain.

Onto my Neurologist, I saw him and he said people live on to lead normal lives. I understood that part but it's obvious if I have done it this long. This Chiari on top of just neck pain is also causing discs in my back to herniate. When he saw the MRI he said oh Chiari isn't a 2, it's just a Chiari 1 and that if I'm having this neck pain this severe it's probably just from the herniated discs causing pain in my neck. I understand one pain may trigger another but I think he's wrong!

He suggested I keep the neck collar on if it relieves the pressure from the neck, which it does. I'm having mixed emotions and am really looking into seeing other doctors now. I'm confused and have spoken to family and they don't see this as serious as I do. It's my health but they tell me doctors know best but with the doctors i've been seeing I've had nothing but bad luck. I'm feeling a bit depressed and thirsty for some more knowledge.

-Gabriela

2
  • Welcome Gabriela, sorry you are feeling so bad. First, im not sure about the paralyzing being chiari. Not that it couldn't be, I just have not heard of that happening. There are many symptoms that go a long with chiari. Did they tell you the size of your chiari? Mine was 8mm. Size really don't matter, it's how much compression there is and if you have normal CSF flow. I had to wait a few weeks then go back to my NS. But I am having a lot of symptoms that are taking away my quality of life, so my NS decided I needed surgery. A lot of NL and NS don't know a lot about chiari. You need to find a NS that specializes in it. Unless you have severe symptoms and they are affecting your quality of life, they don''t like to push surgery. Do you have any other symptoms with the paralysis? If you have a herniated disc it could be compressing a nerve causing your symptoms. Sometimes chiari is just a finding and is not symptomatic. I cant imagine the hospital sending you home being paralyzed! That just blows my mind! I hope you find the answers you need! Everyone here is very helpful, and if I didn't find this board I would have been lost and not known where to go. Good luck, and hope you feel better!
3

Doctors know best????????????????? I beg to differ! They are not the ones in pain, they don't suffer daily with various debilitating symptoms, they never have lived one day in your shoes...

Sorry that was one thing that just caught my attention in your post..

Hi and welcome! I'm sorry that you are having to go through all of this and unfortunately this many of us have gone through the same things you have.... and its because the doctor doesn't always know best!!!!!!!!!!! There are many doctors that don't even know Chiari is, sad I know, but it's true.. It doesn't sound like NS you had seen was well versed with Chiari and I urge u to find one that is! Its' great that the neck collar is helping you, are u supposed to wear it for the rest of your life to keep your symptoms at bay?

As far as family goes, I would just simply ask them this "Is it too much to ask to feel the same way you do, PAIN FREE"? that kinda put my family in there place and made them think about what they were actually saying.. Because how we feel is just as important as the next person!

I would keep searching for a new NS who specializes in Chiari Malformation and see what they have to say...

Good luck and keep searching for the RIGHT doctor for you!

Jen

4

Thanks Jen,

I'm going to call first thing in the morning to New York Presbyterian/ Columbia University Hospital they are known to have an excellent Neurological Department. I also found "The Chiari Institute" @ North Shore Long Island Jewish Hospital so I will be trying a few different places. I didn't appreciate him saying that since I had the collar...use it but seriously, forever?! Sorry meds and a collar aren't satisfying me !

Thanks for the support,

Gaby !



luvmy2grls said:

Doctors know best????????????????? I beg to differ! They are not the ones in pain, they don't suffer daily with various debilitating symptoms, they never have lived one day in your shoes...

Sorry that was one thing that just caught my attention in your post..

Hi and welcome! I'm sorry that you are having to go through all of this and unfortunately this many of us have gone through the same things you have.... and its because the doctor doesn't always know best!!!!!!!!!!! There are many doctors that don't even know Chiari is, sad I know, but it's true.. It doesn't sound like NS you had seen was well versed with Chiari and I urge u to find one that is! Its' great that the neck collar is helping you, are u supposed to wear it for the rest of your life to keep your symptoms at bay?

As far as family goes, I would just simply ask them this "Is it too much to ask to feel the same way you do, PAIN FREE"? that kinda put my family in there place and made them think about what they were actually saying.. Because how we feel is just as important as the next person!

I would keep searching for a new NS who specializes in Chiari Malformation and see what they have to say...

Good luck and keep searching for the RIGHT doctor for you!

Jen

5

Dear Gaby...

Sad to say...your experiences with both the NL and NS are all too common....These kinds of doctors have such HUGE EGOS..they cannot admit they know NOTHING ABOUT CHIARI!!!!!! Trust me, I have seen my fair share of uneducated medical 'professionals' and I use the word 'professional ' lightly.

I am still hot after reading your post..how dare the ER send you home in that condition????

Ok, I am taking a deep breathe here....Forget about those doctors....sounds like you are on top on this...looking into a new NS....Personally...NL's were flat out useless for me...all of them said Chiari doesn't cause all these symptoms..BS!!!

Now you also have bad disks in your neck, right??? Well, I did too...My NS wanted to fix those 1st, wait 6 mths and see what symptoms were left...His thought process was..let's first fix what we know for sure is broken, so to speak. We did that and I still had many, many symptoms 6 mths after my neck fusion. Had decompression 3 yrs ago with good result..of course surgery is not a cure...only a treatment to help stop progression of symptoms and restore CSF flow...I still still struggle with issues today..but the good news is..I am better off than I was b4 the operation.

Sorry this reply is so long..but I will forget if I don't ask you now...LOL.....Memory is BAD!!!! Anyway, Have you had a full spinal MRI to see if you have a syrinx (fluid filled cyst on the spinal cord)...and a CINE MRI, which checks the flow of CSF???

Please hang in there and I am sure you will get the answers you need...just need to find the educated NS..hopefully others will chime in and give you advice as well...I am in Upstate Ny, had surgery in Rhode Island where I was living at the time. So I don't know anyone in NYC.

Keep us posted.

Peace,

Lori

PS: Sorry this was a long reply!!!!

6

Hi Kay,

Sorry for not responding sooner. I asked the doctor (NS & NL) and neither had an answer. Some of my symptoms are, Numbness, tingling, dizziness if I move too fast. Ringing in the ears for years, didn't think much of it. I hear my heart beat in my ears, nausea really really bad, almost all day. I've had 4 episodes of Bell's Palsy (docs don't think it's related but when I mentioned that normally 3 out of 4 times I've had it, it was started with severe neck pain and 1-2 days later came the paralysis) I've had horrible headaches, muscle aches (spasms). Memory loss ( while at work I knew who the people were just couldn't put names to faces) I work at a clinic (although on short term disability) patients would spell out their names and I couldn't figure out what letters were which on the keyboard. Clicking in back of my neck when I take off the collar. I have worn glasses all my life but lately have seen tiny swirls in my sight.

My Chiari is also 8mm.

kay1990 said:

  • Welcome Gabriela, sorry you are feeling so bad. First, im not sure about the paralyzing being chiari. Not that it couldn't be, I just have not heard of that happening. There are many symptoms that go a long with chiari. Did they tell you the size of your chiari? Mine was 8mm. Size really don't matter, it's how much compression there is and if you have normal CSF flow. I had to wait a few weeks then go back to my NS. But I am having a lot of symptoms that are taking away my quality of life, so my NS decided I needed surgery. A lot of NL and NS don't know a lot about chiari. You need to find a NS that specializes in it. Unless you have severe symptoms and they are affecting your quality of life, they don''t like to push surgery. Do you have any other symptoms with the paralysis? If you have a herniated disc it could be compressing a nerve causing your symptoms. Sometimes chiari is just a finding and is not symptomatic. I cant imagine the hospital sending you home being paralyzed! That just blows my mind! I hope you find the answers you need! Everyone here is very helpful, and if I didn't find this board I would have been lost and not known where to go. Good luck, and hope you feel better!
7

Hi Lori,

The ER sure did send me home and I've spoken with 1 patient advocate at the 1st hospital I went to. The 2nd has yet to call me back after 4 messages I have left !

I have not had the spinal MRI nor the CINE. The NS stated he wanted me and my $25 back (he didn't really say this part) in the office in 2 weeks. Sorry but I'm just tired of copays ! ... Venting

Since you have had the surgery, do you still have symptoms? What size was it ?

lori said:

Dear Gaby...

Sad to say...your experiences with both the NL and NS are all too common....These kinds of doctors have such HUGE EGOS..they cannot admit they know NOTHING ABOUT CHIARI!!!!!! Trust me, I have seen my fair share of uneducated medical 'professionals' and I use the word 'professional ' lightly.

I am still hot after reading your post..how dare the ER send you home in that condition????

Ok, I am taking a deep breathe here....Forget about those doctors....sounds like you are on top on this...looking into a new NS....Personally...NL's were flat out useless for me...all of them said Chiari doesn't cause all these symptoms..BS!!!

Now you also have bad disks in your neck, right??? Well, I did too...My NS wanted to fix those 1st, wait 6 mths and see what symptoms were left...His thought process was..let's first fix what we know for sure is broken, so to speak. We did that and I still had many, many symptoms 6 mths after my neck fusion. Had decompression 3 yrs ago with good result..of course surgery is not a cure...only a treatment to help stop progression of symptoms and restore CSF flow...I still still struggle with issues today..but the good news is..I am better off than I was b4 the operation.

Sorry this reply is so long..but I will forget if I don't ask you now...LOL.....Memory is BAD!!!! Anyway, Have you had a full spinal MRI to see if you have a syrinx (fluid filled cyst on the spinal cord)...and a CINE MRI, which checks the flow of CSF???

Please hang in there and I am sure you will get the answers you need...just need to find the educated NS..hopefully others will chime in and give you advice as well...I am in Upstate Ny, had surgery in Rhode Island where I was living at the time. So I don't know anyone in NYC.

Keep us posted.

Peace,

Lori

PS: Sorry this was a long reply!!!!

8

Hi Gaby....

Oh Boy...You story is so much like many of us here...stinks.....1st off...In my opinion, and I hope others chime in on this..you need a FULL SPINAL MRI to see if you have a syrinx (fluid filled cyst on your spinal cord which can cause many Sx's)

Yes, many folks with Chiari never , ever have a problem..symptom free...However, like yourself and others here..we are not free of this pain and agrivating symptoms.

Reading your last post..WOW..it brought back so many memories!!!!! the ear thing..that use to drive me insane...24/7 to hear that swooshing...and if not the swooshing...ears felt 'full'....then the crazy rapid hear beats that came out of nowhere..that was very scary..use to wake me from a sound sleep...SPELLING....thanks for reminding me..LOL

I was working then and the spelling errors were beyond embarrassing!! I remember blaming "Spell Check" on the computer..when I knew in my heart something was up. Memory...Oh yeah...big one...I kept having to recheck where I was suppose to be...my job then required me to travel to different locations each day..And it goes on...

I had decompression 3 yrs ago...no more ear issues for the most part, spelling has gotten better, I think anyway!!! No more crazy heart rates..Naturally, if I am upset , my HR goes up just like anyone elses!! My memory is not that hot...I don't know if I can say it is all Chiari or just my life issues and stress that everyone has, that makes my memory worse, ya know.

My H/A's have gotten better..they have changed in nature..THANK GOD....I take Fiorocet when I feel a dozzy coming on.

Balance is still an issue for me....not like b4 surgery..b4, I actually had drop foot on the left side, tripping over my own two feet for yrs...always blamed the tripping on me just be a klutz!!! once I began dragging my left leg..I knew I was in trouble..I no longer have drop foot and do not drag my left leg...However, I do tend to sway when I walk and loose my balance easily..so I try and be very careful when walking and through away all my clogs...which, honestly , to this day, I miss..loved those things!!!LOL I bought a pair of Shapers by Sketchers(sp) and they are great for me...feel secure.

Oh, yeah, the nausea thing..OMGosh!!!! Gaby..I use to DREAD going in the car....every little turn I thought I would vomit..any sudden move of my head, same thing..that is better now.

So, in my humble opinion and my own experiences..the doctor that told you to wait til you cannot swallow....loose his phone # and address!!!!!

Have you sent for the packet yet from TCI??????

Keep us posted....

Peace,

Lori

PS: Still have from time to time visual problems...yet eyes are 'healthy'..went to a very good neuro opthomologist. Oh yeah..gotta tell you this one..which I have written on this site so many times sorry for repeating, guys..but this is interesting, I think.

Gaby, b4 surgery, for YEARS, I would get bronchitis/pnemoneau at LEAST 3-4x per yr..PCP and Pulmonologist said it was all b/c I smoked ciggs...I know smoking is awful..but ..I am weak, never quit.....Since decompression surgery, I have not had the SLIGHTEST sign of bronchitis never mind pnemonea (SP)....Weird, huh??

9

Hi Lori,

I'm ditching the appointment for the NS on the 11th. I've made an appointment with a new NS. I have the appt for the 17th of October. I'm just concerned about waiting that long to have a the MRI. I'm worried. I'm also currently out of work and have applied for short term disability but I don't know if I should apply of SSD. I'm lost. I know my health comes first but this is all new to me. I did request the info from TCI have yet to receive it though. I'm sure it's on it's way. As for your pneumonia and bronchitis, that is weird...hmmm but I must say AWESOME congrats to you !

I get it often (bronchitis) but this year I got walking pneumonia. I've also almost always had throat issues...really ENT issues but mostly my throat since I was a child. As an adult almost all the time a bad post nasal drip...the most annoying thing ever !

lori said:

Hi Gaby....

Oh Boy...You story is so much like many of us here...stinks.....1st off...In my opinion, and I hope others chime in on this..you need a FULL SPINAL MRI to see if you have a syrinx (fluid filled cyst on your spinal cord which can cause many Sx's)

Yes, many folks with Chiari never , ever have a problem..symptom free...However, like yourself and others here..we are not free of this pain and agrivating symptoms.

Reading your last post..WOW..it brought back so many memories!!!!! the ear thing..that use to drive me insane...24/7 to hear that swooshing...and if not the swooshing...ears felt 'full'....then the crazy rapid hear beats that came out of nowhere..that was very scary..use to wake me from a sound sleep...SPELLING....thanks for reminding me..LOL

I was working then and the spelling errors were beyond embarrassing!! I remember blaming "Spell Check" on the computer..when I knew in my heart something was up. Memory...Oh yeah...big one...I kept having to recheck where I was suppose to be...my job then required me to travel to different locations each day..And it goes on...

I had decompression 3 yrs ago...no more ear issues for the most part, spelling has gotten better, I think anyway!!! No more crazy heart rates..Naturally, if I am upset , my HR goes up just like anyone elses!! My memory is not that hot...I don't know if I can say it is all Chiari or just my life issues and stress that everyone has, that makes my memory worse, ya know.

My H/A's have gotten better..they have changed in nature..THANK GOD....I take Fiorocet when I feel a dozzy coming on.

Balance is still an issue for me....not like b4 surgery..b4, I actually had drop foot on the left side, tripping over my own two feet for yrs...always blamed the tripping on me just be a klutz!!! once I began dragging my left leg..I knew I was in trouble..I no longer have drop foot and do not drag my left leg...However, I do tend to sway when I walk and loose my balance easily..so I try and be very careful when walking and through away all my clogs...which, honestly , to this day, I miss..loved those things!!!LOL I bought a pair of Shapers by Sketchers(sp) and they are great for me...feel secure.

Oh, yeah, the nausea thing..OMGosh!!!! Gaby..I use to DREAD going in the car....every little turn I thought I would vomit..any sudden move of my head, same thing..that is better now.

So, in my humble opinion and my own experiences..the doctor that told you to wait til you cannot swallow....loose his phone # and address!!!!!

Have you sent for the packet yet from TCI??????

Keep us posted....

Peace,

Lori

PS: Still have from time to time visual problems...yet eyes are 'healthy'..went to a very good neuro opthomologist. Oh yeah..gotta tell you this one..which I have written on this site so many times sorry for repeating, guys..but this is interesting, I think.

Gaby, b4 surgery, for YEARS, I would get bronchitis/pnemoneau at LEAST 3-4x per yr..PCP and Pulmonologist said it was all b/c I smoked ciggs...I know smoking is awful..but ..I am weak, never quit.....Since decompression surgery, I have not had the SLIGHTEST sign of bronchitis never mind pnemonea (SP)....Weird, huh??

10

Gaby, You have all the symptoms of chiari! Don't let any dr tell you it's something else! I too have had bell's palsy. I also have hemi facial spasms. I was told about 8yrs ago that i have a blood vessel pressing on my 7th cranial nerve causing the bell's palsy and facial spasms. They wanted to do surgery and put a teflon wrap around the vessel. They go in behind your ear and cut a piece of skull out to do it. I opted out cause I figured I could just deal with the spasms rather than have brain surgery. My NS now said if I would of had that surgery it could have been fatal with chiari. Said that the pressure when they opened me up would of been bad. I knew something kept me from having it, thank God! My NS thinks that after my decompression surgery that vessel will go down. Said the pressure from my brain was the cause of it. And if it don't go away after 2 months after the decompression he's going to go back in and fix it. Sounds like you might have that going on too with the bell's palsy. I had to put my NS in his place at my last visit! First he said I definately had compression, then I didn't. I seen the Mr I'S and read the reports. He was confused since he had MRi's form 3yrs ago. Find a good NS that knows about chiari! Don't settle for anyone less! Your symptoms are sever enough to warrant surgery! LIke Lori said, you need a spinal CINE MRI. Your could have a fluid cyst in your spinal column causing your paralysis. And that is serious! Keep on top of it like you are, you have to fight for your health! Sounds like you are headed in the right direction. My thoughts and prayers are with you. If I can help in any way, please don't hesitate to ask! My surgery is scheduled for Oct. 21. My NS is in Cols. Ohio. Good luck to you!

Sorry for not responding soyooner. I asked the doctor (NS & NL) and neither had an answer. Some of my symptoms are, Numbness, tingling, dizziness if I move too fast. Ringing in the ears for years, didn't think much of it. I hear my heart beat in my ears, nausea really really bad, almost all day. I've had 4 episodes of Bell's Palsy (docs don't think it's related but when I mentioned that normally 3 out of 4 times I've had it, it was started with severe neck pain and 1-2 days later came the paralysis) I've had horrible headaches, muscle aches (spasms). Memory loss ( while at work I knew who the people were just couldn't put names to faces) I work at a clinic (although on short term disability) patients would spell out their names and I couldn't figure out what letters were which on the keyboard. Clicking in back of my neck when I take off the collar. I have worn glasses all my life but lately have seen tiny swirls in my sight.

My Chiari is also 8mm.

kay1990 said:

  • Welcome Gabriela, sorry you are feeling so bad. First, im not sure about the paralyzing being chiari. Not that it couldn't be, I just have not heard of that happening. There are many symptoms that go a long with chiari. Did they tell you the size of your chiari? Mine was 8mm. Size really don't matter, it's how much compression there is and if you have normal CSF flow. I had to wait a few weeks then go back to my NS. But I am having a lot of symptoms that are taking away my quality of life, so my NS decided I needed surgery. A lot of NL and NS don't know a lot about chiari. You need to find a NS that specializes in it. Unless you have severe symptoms and they are affecting your quality of life, they don''t like to push surgery. Do you have any other symptoms with the paralysis? If you have a herniated disc it could be compressing a nerve causing your symptoms. Sometimes chiari is just a finding and is not symptomatic. I cant imagine the hospital sending you home being paralyzed! That just blows my mind! I hope you find the answers you need! Everyone here is very helpful, and if I didn't find this board I would have been lost and not known where to go. Good luck, and hope you feel better!
11

hi Gaby....

So happy you got a new NS...the 17th seems like an eternity to you i am sure...Is your Primary on board with all you are going through???? The reasons I ask is b/c maybe your primary can call the new NS and plead your case and get you in sooner..or, just a thought, can you ask primary if he/she can order the complete MRI's so when you do go on the 17th ..the new NS will at least have a Full Spine, brain MRI to view...My own experience was that my primary wanted the NS to order

the CINE MRI (pronounced 'cinny, like minnie mouse!!LOL).

I applied online for SSDI..actually, hubby read the questions and I answered,he typed..anyway...it , for me, was a very emotional process...b/c once we were done doing it..I remember saying to hubby.." I really am screwed up..I am seriously sick." To see it all typed out..was sad for me..I did not exaggerate any Sx's..all true answers..which really got to my head..ya know what I mean..If I was"trying to scam the system" and lied about all these Sx's..I would have been ok mentally..but, I don't do crap like that to begin with...'scam'...so, it was about a full week after the app was done that emotionally i snapped out of it.

I was approved without a lawyer on the 1st try..I think in all it took about 4 mths to hear back...I suggest you tell ALL your doctors and their office managers you are applying..b/c the faster the dr. sends in his/her paperwork..the sooner and smoother it goes. SSDI did send me to 1 of their doctors...I phycologist ..therapist....I was pretty shocked they didn't want me to see a NL or NS...anyway...that was it....

If you do apply..get all your dates in order..last day you worked, places where you had testing done, all dr.' s names and addresses and ph#..if you have kids have their SS#'s handy.

If you do apply...and have questions...I will be happy to tell you whatever I know..Also, there are others here on SSDI..you can always start a discussion on it and see what others went through during the process.

Good Luck...Please call your PRIMARY tomorrow and see if he/she is willing to order the MRI's so when you go on thein 17th the new NS has something to look at.

Peace,

Lori