Need advice 3rd neurosurgeon

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Need advice 3rd neurosurgeon

Postby toport20 » Wed Jun 27, 2007 11:49 pm

Hi,

Have talked to some of you before about my condition, hope this finds you well. Have been having pain in my neck, shoulder and back for a few years and was attributed to fibromyalgia. Got fed up with the doc and asked her to do an mri. They found a syrinx that kind of runs somewhere between the cervical area, down into the thoracic and part of my lumbar off and on kind of. It is only 2mm in diameter. My first doc did a thoracic MRI and said it was a persistent central canal (where when you are born it just doesn't close properly) and doesn't consider it a syrinx. Had a second opinion with a NS and had a cine MRI which didn't show any csf flow blockages. He also said it was a persistent central canal and nothing to worry about and it should not be causing my pain.

Has anyone else had this diagnoses and what have you done? He also did not see (I really don't know if he looked) but there was nothing on the report about CM. On one of my slides I see what looks to me to be a tonsillar herniation (I'm no doctor but have seen several of these online). I even wrote the nurse and e-mailed her the MRI but have not heard back yet. It would really be nice to have someone who specializes in CM to read these MRI's just to put my mind at ease. Should I keep pursuing this or are the doctors right? My pain is just originating from the fibromyalgia/myofascial syndrome.Any ideas? Thanks, Tracy
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Postby gncrzy3 » Thu Jun 28, 2007 1:12 am

I have a syrinx that runs from my c3/c4 to my L1..no csm blockage.I
was told that it not an option to shunt,, due to the many complications that can arise unless it moved more tward my brain. I would FIND ANOTHER DOCTOR!!! I get severe shoulder and arm pain,, and radiating pain,, well just about every where.
I am on meds to help with the pain,, and they treat symptoms as they arise. So are they saying it is idiopathic?
I was dx 5 years ago,, and they could not tell me why. Then I kept persisting,, as they said my symptoms could not all be attribited to SM. I was finally sent to a specialist in washington D.C Dr Frazier Henderson.
He looked at my mri's and came in examined me,, and asked my about 40 questions of which I answered yes to about 35. He finally told me that I had basilar invagination,,, which was the cause of my SM. In my experience ,, at least in my area,, BFE of western PA.. most dr's do not even now what SM is... let alone,, what do for it. So.. I would search for a specialist of SM,, who can give you competant advice to work with your symptoms,, and help you maintain as normal of a life as possible.
gncrzy3
 
Posts: 70
Joined: Mon Jun 25, 2007 11:23 pm
Location: western PA

Postby mac » Thu Jun 28, 2007 2:31 am

Tracy, hi! Welcome back to the board. Sorry you are still battling your way thru the ol' doctor maze!

You know, I was about to say that you need to go to a full time specialist in Sm in order to get the best and clearest information on what is going on with you.

I have heard from a couple of others who have seen one of those experts, being told that they also have a residual central canal. I haven't done any research on this, have you? I am wondering if there are any articles online which do state that a residual central canal can cause pain? I hope you will research this, if you haven't. If you find a link to such an article, I'd love to read it.

Dr. Bolognese at TCI has written that fibromyalgia and chronic fatigue syndrome are basically "wastebasket diagnoses." He went on to explain that doctors give these dx's because they know you are in pain, but they do not know why.

It may end up that there is nothing that can be done for you surgically and your treatment plan would be to manage the pain and modify lifestyle.

However, it sounds like it would be a good idea to have a true specialist evaluate you for CM. A true specialist could also check you for other things, like tethered cord, craniocervical instability, odontoid issues as birdlover mentions...there could be a few options of things going on with you to cause your pain. Whereabouts do you live?

I hope you will keep on track to finding the correct dx and the best plan of trx for it. Don't give up. Yes, going to get another opinion is a good idea, but be sure this time it is to someone who practices full time and solely with CM/SM patients.

I hope this helps
mac
mac
 

Postby toport20 » Thu Jun 28, 2007 8:13 am

I called TCI yesterday and I'm going to send them my MRI's. I don't know if I'll have any luck or not but it's worth a shot to me just to find out what is going on. Mac, here's the only article I have found on this persistent central canal http://www.conquerchiari.org/subs%20onl ... ssue%203(2)/Slit-like%20Syrinx%203(2).asp thanks.
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Postby toport20 » Thu Jun 28, 2007 8:17 am

Sorry you'll have to copy and paste the link.
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Postby cash71 » Thu Jun 28, 2007 11:31 am

Hi Tracy,

As others have said I would persist and get to a specialist in the care of sm. I just got back from TCI several days ago. I have a syrinx, largest in the thoracic area and when I told Dr. B that my NS here had said I was most likely born with the syrinx he said " I can assure you, you were not born with it" Also he told me that I have an Occult tethered cord and that this is most likely the cause of my thoracic syrinx as the tether pulls or puts traction on the cord which can lead to the syrinx forming. Dr. B states that this is the third most common cause of thoracic syrinxes behind cm and trauma.

I think if you go to TCI you will find that they will search out to real cause as only they are able too. I was really surprised that I was dx with tethered cord but now when I look at some of my symptoms it makes sense. Good for you for pressing on, I know it is difficult when several NS are saying the same thing to you but please try to get to TCI it will be a different story I'm sure.

Wish you all the best,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
User avatar
cash71
 
Posts: 1362
Joined: Wed May 16, 2007 1:30 pm
Location: Vancouver Island

Postby mac » Thu Jun 28, 2007 12:35 pm

Thanks tracy...When I mentioned above about some experts feeling that a slitlike syrinx is asymptomatic, Dr. Batzdorf was the one I was thinking of b/c I'd read others reports after having seen him. And he was the author of the study that the article you sent pertains to. (forgive that horrendous grammar!)

thanks for including that. Don't give up. Sadly, in that report, 19 did not get better at all, so it seems that nothing was really done to help them. Keep on track to find someone who will help you, okay?

mac
mac
 

Postby Sandy » Thu Jun 28, 2007 1:00 pm

Hi Tracey,

I just have to add that any doctor who says a small syrinx cannot cause symptoms (TCI included lately) should have to live with one for a month or more. They would most certainly change their minds.

IT's very easy to be all preachey about a diagnosis you don't have.

Hang in there.

love,
sandy
Sandy
 
Posts: 1150
Joined: Wed May 16, 2007 2:44 pm

Postby toport20 » Thu Jun 28, 2007 3:06 pm

Thanks all, I just wish there was someone to specifically tell me what is wrong or if it is the syrinx or not. I hate to plan another trip if it is going to be the same DX. Sandy, you mentioned TCI talking about small syrinxes not causing pain, is this documented somewhere or has someone had the same experience? I just feel like I'm chasing my tail but can't rest till I know. There's so much conflicting information and so many doctors that disagree. I'm just tired of being treated like a hypochondriac, we pay these docs and it would be nice if they could at least explain why they've come to the conclusions they have, not just don't worry and have a nice life, bye. I think we're all a bit smarter than that and have probably spent more time studying this stuff than they have (or at least some of them).
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Postby cash71 » Thu Jun 28, 2007 3:25 pm

Tracey,

I know when I pressed Dr. B for an answer as to why I have had unrelenting, severe back pain right where my syrinx is the largest he did say that it could be the syrinx and that in some people they do cause pain.


Mine is very long but I only get pain in the one spot and coincedentally that is the same spot that the syrinx is the largest. It is only 3-4mm at it largest though and that is considered small.

I will copy an answer to a question about syrinx size that was posted on the CCI website by Dr. Heiss who is conducted the NIH study on sm/cm currently

When Is A Syrinx Too Small?

Patients with Chiari I can have symptoms with a large syrinx, small syrinx, or no syrinx. These patients may benefit from craniocervical decompression.

Small syrinxes are difficult to assess because they appear on MRI scans to be identical to the central spinal cord canal, a normal structure. The central spinal canal, being normal, would not cause pain and another cause of the pain would need to be considered. Small syrinxes may result from conditions such as trauma, infection, or inflammation that cause a small amount of injury to the spinal cord. The injury occurs over a short period of time. Pain originates from the injured spinal cord around the small syrinx. The injury that occurred to the spinal cord during the formation of the small syrinx cannot be reversed by surgical treatment and may be made worse by it.

Dr. John Heiss


HTH,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
User avatar
cash71
 
Posts: 1362
Joined: Wed May 16, 2007 1:30 pm
Location: Vancouver Island

Postby Sandy » Thu Jun 28, 2007 10:28 pm

Hi Tracey,

About syrinx not causing symptoms...what I said. I've just noticed that lately people who come back from TCI are told that. THe first time somebody was told that from there I just had to pick my jaw up off the floor. I'm not saying that it has been documented or anything, but just from paying attention here on the reports that come back from people who go there, and to some other places as well, not just TCI.

One lady was told that same thing from a doctor in Little Rock. And he walked out, told her to go live her life. HOw do you do that?

I've had this syrinx probably for a lot more than 10 years, I think more like 20 from an accident. And it just gets my goat when they brush it off like just because they think it can't cause symptoms you shouldn't have any. It just doesn't work that way.

I disagree, and like I said if they walked around with a syrinx for a while they would definitely change theirminds about that.

Thankfully my doctor knows that indeed my syrinx is the cause of my pain and symptoms. He's warned me about symptoms before I've experienced them. I worry about him retiring.

love,
sandy :D
Sandy
 
Posts: 1150
Joined: Wed May 16, 2007 2:44 pm

Postby socialdkitty » Thu Jun 28, 2007 10:55 pm

Ive been told the same thing - I have a very narrow C6-C7 syrinx, which the neurosurgeon called a persistent central canal even though I have a lot of pain, etc... Still wanting to go to TCI when I can.
socialdkitty
 
Posts: 83
Joined: Mon May 21, 2007 10:19 am

Postby toport20 » Fri Jun 29, 2007 8:52 am

Socialdkitty,

What kind of pain do you have? I don't know what I'd do without this place, it's the only place I've been getting support from at least on the medical side. All I know is something isn't right and hasn't been since my 20's and I'm 39 and no one can figure it out.
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Postby socialdkitty » Fri Jun 29, 2007 9:12 am

Well, Im 25 and I have had neck/back/shoulder pain since I was about 15. In the past few months, I started experiencing headaches that start at the left base of my skull and radiate up to my left temple/behind the eyes. It gets so bad sometimes I feel like I'm going to die and then other times its hardly there at all - the pain gets worse with sneezing/coughing/straining. I also have random muscle twitches and some pins and needles in my hands and feet. I was also diagnosed w/fibromyalgia before I had the MRI. My 'syrinx' is about 2mm wide and 4mm long, but my symptoms lead me to believe I have Chiari or something like that going on too which did not appear in the MRI.
socialdkitty
 
Posts: 83
Joined: Mon May 21, 2007 10:19 am

Postby toport20 » Fri Jun 29, 2007 10:27 am

Funny, I've got the neck back shoulder thing going too all on the right side, dx'ed with fibromyalgia. Haven't had too many headaches, I did have a spell where I had a couple days of debilitating headaches where I felt like my head would explode but they went away. Sometimes I feel pressure in my head but no headache. I've had lots of weird things with my hands falling asleep and burning in one spot between my ring and middle finger, have had nerve tests for that - nothing shows up on my tests.
User avatar
toport20
 
Posts: 279
Joined: Wed Jun 27, 2007 11:32 pm
Location: Ohio

Next

Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 5 guests

cron