syrinx

[beestr]

Hi all,

Im 31 years old male and I recently started feeling weakness, and loss of muscle strength in my legs and now slowly to my arms.
I had a MRI scan for my whole spine. According to the results of the films, it shows I have a syrinx extending from c5 vertebral level to c6-c7 intervertebral level. My report also mentions that the cerebellar tonsils are low-lying about 4-5mm below the cranio-cervical junctions.

I have seen 2 different neurosurgeons for different opinions.

First neurosurgeon advises in the mean time to monitor the symptoms and wants to profile if anything else might be causing the issue. He suspects the the syrinx is causing my symptoms but doesn't want to rule that it is. He thinks from the films its a bit swollen but can't be for sure how long the syrinx has been there.

Second neurosurgeon advises in the mean time to also monitor the symptoms and wants to profile if anything else might be causing the issue. He advises that he believes the syrinx is causing the symptoms. He advised surgery to do a “shunt” to help me feel 100% better. He also mentioned that we need to notice of the cerebellar tonsils for possible Chiari I Malformation.

My symptoms have only been happening for about nearly 2 weeks and I can’t live like this. I was active and mobile, and now my legs feel achy, and very weak. I feel like I have no stability and no strength. I don’t want to go out as my legs start to get really achy, I don’t want to do anything, and Its effecting me everyday and I just can’t cope.

If I do the surgery, will this FIX all my symptoms?
Has anyone have the same symptoms as me and had the surgery and fixed everything?

Thanks for listening.

[STL5]

I just wanted to say that my original symptom was that my left side was numb.  This is why I sought out a neurologist.
I kind of miss just being numb :)

[STL5]

It was probably a year between seeing the neurologist who referred me to the first neurosurgeon and getting my surgery.  The first neurosurgeon said to wait and monitor symptoms.  He also recommended getting a second opinion.  I saw the second neurosurgeon months later.  He had me go through different tests since I felt that I was getting worse.  Once I got all the tests done and the results back it was 2 months later.  I was told not to wait more than 6 months to get the surgery due to my breathing was getting difficult (I used to walk 5 miles daily and had trouble crossing the street without having trouble breathing) and I was having bad balance issues and my legs would give out from under me.  Surgery was in 2011.  I am still in pain on a regular basis.  I still get headaches but not the really excruciating one where I was not able to do anything for minutes until it passed.   I have nerve damage in my right hand.  It is also numb.  I can cross the street now without being totally out of breath though.  If I look at the whole picture things are better overall.  Will I ever be the same – no.  I have a new normal.

[oops1990]

I am able to walk normally now. It took about a year of hard work, but I'm very proud of how far I've come, and I know that it can be done. The only problem I have with walking is a few balance issues every now and then but I always catch myself without difficulty. I'm glad you're seeking out different opinions and I hope you're able to find something that works for you.

[selmaS]

  Hi...I know it is very confusing...and I am curious do you have copies of your MRI?

Next, is this Dr well informed and experienced with Chiari....many are not and do not or will not admit or DX Chiari.....I am not sure why

Lastly what or how did he say  your syrinx developed? Did you have an injury to your cervical spine?

Typically if there was no injury,, an obstruction of CSF flow will cause a syrinx to form....just curious as to what he says.

[beestr]

Hi, yes I do have copies and reports of my MRI.
This DR, I believe is well informed, I've read media articles about him and he also did brain surgery or someone who had brain cancer etc. I've researched about him before I went to see him. I did ask him about Chiari, and he showed the MRI scans and explained to me why I don't have Chiari 1 Malformation in detail.
From what the DR told me about my syrinx, he advised that no neurosurgeon can determine WHEN the syrinx was formed. He did tell me the syrinx can be developed from Chiari malformation, trauma to the spine, and tumors.
I have not had any trauma to the spine, but I do remember one time I ran on some tiles when it was wet, and slipped and hit the back of my head real hard. When I lied down and try to get up I couldn't. This was when I was young though and not sure if its related. Other than that, I do not remember any other time that I have caused any direct imapact to my spine. As you said, if no injury, would the obstruction to the CSF flow be related to tumor? or chiari?

[oops1990]

From the beginning my symptoms from the syrinx came on pretty suddenly as pain in my left arm in the summer of 2012. A neurologist suspected a pinched nerve in my neck at first, so we did an MRI and discovered Chiari malformation and the syrinx in the cervical region of my spine. Because of the syrinx, I had my first decompression in December 2012. The syrinx continued to grow so I had a second decompression in June 2013 right after my college graduation. The back pain and leg weakness came on very suddenly. I had a decompression in June of 2013 - the back pain and leg weakness came on in July of 2013 and the syrinx had grown at such an alarming rate and my legs were becoming so weak that the shunt was placed in August 2013 in my thoracic spinal cord. The syrinx did shrink down for a while after that, but it eventually began to grow again and in June 2014 I had my cerebellar tonsils resected. I never know whether to say the decompressions caused my problems, or if it's just my body not responding properly to treatment. Either way, I'm okay with my decisions to have the surgeries because I can't change the past, and I never know if I might have ended up paralyzed. The leg weakness and foot drop I experienced were pretty terrifying, especially because they came on so suddenly and the back pain was awful. Now, my neurosurgeon and I agree that it's best to just let things be for a while because the risks of having more surgery outweigh the benefits, even though the syrinx continues to grow. I'm in some form of pain pretty much every day, and I don't work anymore for the time being but I manage it. I see a pain specialist and take medicine for the nerve pain from the syrinx and it helps some. I spend time with my family and friends and find other things to occupy my time such as reading, lots and lots of TV shows and taking walks. I generally just have a positive attitude and it works wonders. I'm sure there are plenty of success stories out there. All of my decompressions went very smoothly, I just had difficulties with the shunt placement, and my body apparently doesn't cooperate with the syrinx =]

[beestr]

Thanks for your reply, definitely keeping positive and keeping my mind active and going for exercises etc. Im also taking vitmain complex b tablets which contains vitamin e - 100mg, vitmain b1 - 300mg, vitmain b6 - 300mg and vitmain b12 - 1mg. I feel this will help me...probably a mental thing but vitmain b helps with nerves.
I guess everyone is different in regards to their symptoms, and how things develop etc.

So are you able to walk normally now? without a walker? or cane? etc. or do you find difficutly?

[beestr]

I met with the neurosurgeon today , and he advised I do not have chiari I malformation.
My symptoms are arm and leg weakness. Where my syrinx was found was in the c5,c6-c7 section and the neurosurgeon advised he did not see exactly how my symptoms relate to my syrinx. He was very adamant that the symptoms due to syrinx MUST include temperature sensation loss and some pain. I currently do not have any of that. He wants to to observe me in 3 months.
He was very strong about having surgery is something not to take lightly. He said the syrinx could have been there when I was young, and might not be related to my symptoms. I just don’t know what else could be causing these symptoms. No tumours were found in the MRI along my spine / spinal cord.

All I can remember was before all this weakness happened, I was doing house cleaning and a lot of bending down etc and I have always had lower back issues. I was having a mild lower sore back after the cleaning and then next week this all happened with my leg and arm weakness.

He told me to go about my daily life, and will do another MRI in 3 months. I know it sounds as if he probably didn’t care too much, but he was very concerned, listened and explained a lot to me during out meeting.

I just don’t know what to do now…

[selmaS]

  I had my surgery in May of '09 so going on 8 yrs ago.....

Chiari symptoms cycle and flare so it is possible to go long periods in a flare or out of one...this makes a DX difficult...

If someone has a syrinx also known as Syrongomyelia....surgery is the best option at that point as decompression surgery may help the syrinx shrink. BUT it is important to know ALL related conditions b4 surgery is considered.

Ehlers-Danlos is one such condition we need to rule out as most that have had a negative surgical outcome is due to not knowing EDS was a factor b4 hand.....

I am happy with my surgical outcome and if needed would do it again....happily I have not required further surgeries at this point and am doing better then I was b4 my surgery.

Most of the Drs that are true Chiari specialists do have videos of the surgery on line for you to view if you can stomach it....I can not....but there is info on how the surgery is done, what it is meant to accomplish and what the benefits could be.....

Any Dr that claims to be able to "fix" or correct you is delusional....run away .... Chiari is a malformation of the skull leaving the area too small for the cerebral tonsils to fit so they get forced out onto the spinal cord or brain stem....this compression causes the symptoms as well as an obstruction to CSF flow....so the Dr should be doing testing to see if you have an obstruction....once an obstruction is there, a syrinx can form....so Drs will do surgery to restore flow to help prevent a syrinx to form....once a syrinx is there surgery is done to help it shrink, left untreated could lead to perm nerve damage.

My surgery was done to prevent a syrinx...I had a CSF obstruction and a partically retroflexed odontoid as well as tethered cord and EDS.

There are many success stories....only they do not post as much as those that have had a bad experience....keep that in mind when viewing stories online.

[beestr]

I just posted my update with the neurosurgeon. Can you tell me what you think please.

[oops1990]

I had a shunt put in as kind of a last resort for a syrinx, and it still isn't working. I don't mean to deter you, as everyone is different, but I had a very hard recovery. I had 2 decompressions before the shunt and the syrinx continued to grow and my legs continued to weaken and I got such horrible back pain to the point that I had to stop working, so we decided to place the shunt hoping to drain the syrinx. After the shunt was put in, I ended up unable to walk without assistance for almost a year. I had to use leg braces as I had developed foot drop, I used a walker for several months, then canes and I spent a total of about 11 weeks between 3 different inpatient rehab facilities learning how to walk again and rebuilding the strength I had lost. I would hold off on a shunt as long as possible. Almost a year after the shunt I still had to have another surgery to resect my cerebellar tonsils. Now, the syrinx in my spinal cord continues to grow, slowly, almost 3 years after having the shunt placed and I have chronic back and nerve pain. From personal experience, I never expected any of my surgeries to "fix" all of my symptoms, but it did relieve some. For instance, I rarely have headaches anymore, and there used to be times where I would have a headache for several months. I wish you only the best!

[beestr]

Thanks for your reply. I do understand everyone is different. Just wondering, before you got your decompression surgeries, were your symptoms developing slowly i.e leg weakness, or all of a sudden?
Did the back pain come after the decompression or did you already have that?
Im trying to find out if things got worse after the decompression.

How are you now? how do you cope? I find this very frightening, as I was very active and socialable, and after my leg and arm weakness I feel as though my life is "torn" apart. I feel so depressed but trying to be very positive. It effects my daily life.

Have you heard of any successful stories?

Thanks for your reply

[STL5]

I also have a syrinx.  I had weakness in my legs and they got worse over time.  Keep monitoring your symptoms.  If they get worse you may want to discuss options.  I had decompression surgery instead of a shunt.  It did help with the leg weakness, balance issues, and breathing issues.  My neurosurgeon did not recommend a shunt due to the high failure rate.

[beestr]

How long ago did you have your surgery and how are you feeling now?
Also, after you were diagnosed with a syrinx, how long till you went into surgery?
thanks

[beestr]

Another thing, you did say that decompression helped with the leg weakness, balance and breathing issues, but was there any effects after the surgery? i.e numbness, nerve pain etc?

[selmaS]

  Hi and welcome to the Chiari forum.

A Syrinx should always be monitored but keep in mind it may have been there a very long time and you may have had symptoms but they may not have been as bad as they are now....for those with congenital conditions we grow accustomed to symptoms and consider them " normal" as they are our "normal"....

Make sure you find a true Chiari specialist...and I would not suggest starting with a shunt for the syrinx as many times that does not really help...a decompression for Chiari is what most specialist do to allow the syrinx to shrink.....

If you need a few Drs  names to research , let me know where you are so I can give you a list for your area......keeping in mind not all areas have a true Chiari specialist and you may need to travel.

[beestr]

do you have a good link about decompression and how it works?

I am in Singapore.