Syringomyelia Surgery/Recovery

[Autumn55]

I've been doing a little research regarding surgeries for SM.  And I can't find any info on full recoveries.



After you have surgery to improve the flow of fluid, have a tumor removed, a shunt placed, or whatever you require are there any instances where your syrinx will disappear and you go back to being 100%??



Maybe I am just dreaming, but I am wanting to get my life back.



Let me know what you know!

Thanks :)

[selmaS]

  I understand u r not getting enuff info on the shunts them self...I do have an article on shunts in my journal...just click on my name...u can read about them...I am not sure , it has been a while since I read the article so I am not sure if it will answer ur questions or not.

Basically it mentions diff types of shunts where they r placed.....

The other thing u want to research is the type of patch they will use for the duraplasty.....some people have a higher risk of rejection , so some Drs will harvest skin from the pt to use, this was done for me, I have not had ne issues with my patch so far.

"selma"

[Autumn55]

Below I pasted in the best info I could find on a website, regarding treatment for just a syrinx, no chiari.  From what I read there, the shunt would be a last approach.  So yes Selma, I only have the syrinx.

I was just wondering after reading all this, if they operate at the site of my injury (tailbone), is it possible that when they make the extra room for the fluid, could my syrinx collapse and never again cause me troubles??  I'm guessing not, because everything I read says it is incurable and will come back over time.


In the case of trauma-related syringomyelia, the preferred surgical approach is to operate at the level of the initial injury to expand the space around the spinal cord and decrease fluid volume.  This operation is performed outside the spinal cord.  An alternate operation is to place a shunt in the syrinx, which requires a hole to be made in the spinal cord.  Shunts may injure the spinal cord and may require replacement if they clog over time.  Many surgeons now consider shunt placement only as a last resort.  Instead, surgeons usually choose to expand the space around the spinal cord.  This is done by removing scar tissue that “tethers” the cord in place and prevents the free flow of CSF around it, and adding a patch to expand the “dura,” the membrane that surrounds the spinal cord and contains the CSF (a procedure called expansive duraplasty).  In some cases, the vertebrae may need to be realigned to correct spinal deformity that is narrowing the spinal column.
Many spinal cord-injured individuals have a cyst at the site of the original injury.  These cysts do not always require treatment, although treatment may be warranted if a cyst grows larger or begins to cause symptoms.
Drugs have no curative value as a treatment for syringomyelia but may be used to ease pain.  Radiation is used rarely and is of little benefit except in the presence of a tumor.  In these cases, it can halt the extension of a cavity and may help to alleviate pain.
In the absence of symptoms, syringomyelia is usually not treated.  In addition, a physician may recommend not treating the condition in individuals of advanced age or in cases where there is no progression of symptoms.  Whether treated or not, many individuals will be told to avoid activities that involve straining.

[Outlawjjk7]

This is probably one of the saddest injuries a healthy physically fit person can get. Absolutely devastating. It’s because of the lack of options. I’m going in because of my thoracic herniations and a syrinx in the same area. I just hope that the herniations are the problem and when they clear up I can get back to working out. But can I work out consistently with a syrinx? Some say without symptoms you can get on with life but with it being there I think it would be a problem waiting to happen at some point. If it is causing my problems then I will fight,scratch and crawl to get a procedure done. Just mind boggling that cancer seems easier to manage.

[selmaS]

Hi and welcome to the Chiari forum.
Many in this forum have Syringomyelia due to an obstruction to CSF flow caused by Chiari and not an injury as in your situation, so, you may not find the results you are seeking.
Chiari itself is as problematic to treat and live with....having both Chiari and Syringomyelia doubles the hardships.....and unfortunately we even have many that have additional conditions  to those two.
I agree it is sad that Syringomyelia alone can be such a difficullt condition to treat, Drs just do not understand how to treat or even when to start treatment.

As to if you can continue to exercise, it all depends on where your syrinx is located.....if your thoracic herniations caused your CSF obstruction it may be a possibility they caused your syrnx to form and correcting the herniation may help the syrinx shrink in size aliving some of your symptoms.....but be advised , not all syrinx's shrink....
One thing I will suggest is for you to research Drs, having one that deals with Chiari and Syringomyelia would be a place to start as they deal with them on a regular basis.

Do keep us posted on your journay to get treatment.

[Outlawjjk7]

Thank you very much for your response. I will take your advice. I have an appointment this Friday with a neurosurgeon to get their opinion but I do hope they have the specific knowledge on this. I will keep you posted and hopefully this can help others.

[Outlawjjk7]

I live in Buffalo New York and am having trouble finding on line which ones specialize in this area. Any help in that would be appreciated.

[selmaS]

Finding Drs that are educated, experienced and close to home is not easy, so many of us have to travel....I traveled from PA to NY.....you are lucky in that NY has Drs...but again you too will have to travel, below I will post a list of Drs the members here have been to , treated by ad liked....HOWEVER the list is not an endorsement or a referral, just a starting point for you to research.

New York-


· Dr. Rohit Verma
University Orthopaedic Associates at Great Neck
611 Northern Boulevard
Suite 200
Great Neck, NY 11021

Tel: [phone]
Fax: [phone]


· Dr. Sol Mora
Caremount Medical Group
600 Westage Business Ctr. Dr.
Fishkill, NY 12524

· Dr. Amit Shelat
200 Old Country Rd Suite 370
, Mineola, NY 11501
Phone:[phone]


Dr. Paolo Bolognese  MD
The Chiari Neurosurgical Center@ NSP
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
[phone]

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310

[selmaS]

  Hi...refresh my memory...do u have chiari too?...sorry I can't remember....

But if it is just a syrinx, a shunt is only used if the syrinx is of a size where it  is compressing nerves  which if left untreated could lead to perm nerve damage.

If u also have chiari, usually the PFD surgery for chiari will restore flow of the CSF and allow the syrinx to shrink....

Like nething, this is an individual thing as to who feels better, gets better or develops other issues post op.....

I am not sure neone will ever be 100%...chiari and syringomyelia r life altering conditions....surgery is to help slow progression and restore CSF flow....if a Dr says they can cure u....RUN!!

    "selma"

[jenshead]

I don't have a syrinx, but this has been one of my concerns about Chiari.  To think it may never fully go away is very depressing.  However, I think it's important to realize something about the internet:  People who are feeling good don't sit on their butt all day in front of a computer posting information on medical forums.  They go outside and ENJOY life.  Sure, there's some people that are fully recovered that will continue to support Chiari/Syringomyelia sufferers, but many will go on with their lives.

So while you see many people who have had surgery and are still having problems, keep in mind that there are plenty of people you're not seeing.

[Outlawjjk7]

I COMPLETELY agree. I have herniated discs from T6-T10 which is probably causing my pain but I do have a small syrinx in there too but feel when I talk to anyone on there forums that there is no hope for me and good luck. There HAS to be some success stories where people are exercising and feeling good or doctors are pathetic because they can’t fix something that should be fixable.