Shunt?? Panicking...

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Shunt?? Panicking...

Postby drummergrl » Tue May 21, 2013 8:50 pm

I hate having to be the one to ask questions, to seek support- I far prefer offering my own experiences to others. But yet again I'm seeking out your guidance.

As some of you know, I had a decompression and duraplasty for Chiari/SM and all was well for a while. I was told the syrinx would hopefully drain on its own, and it didn't. Flash forward a few years, and my right leg (the side affected by syrinx) became completely immobile, essentially paralyzed. After discovering it was caused by Increased Intracranial Pressure, Diamox solved that problem.

Flash forward to the last few months- my right hand (again, the side affected by syrinx) has been having problems. My pinky finger and ring finger begin to tremble, but strongly...if I'm holding something- a pen, a fork, etc.- and the tremors start, I drop what I'm holding. Sometimes it stops at that. Other times my right hand becomes like a claw, I can't unclench the fist unless I flatten it out with my other hand. I met with my neurologist, and he is "very concerned." He says that he thinks my syrinx could either be leaking or be getting bigger. He is talking the possibility of shunting. My last scans were 12 months ago. I'm getting an arm EMG and cervical/thoracic MRIs ASAP.

Question 1: has anyone dealt with the hand symptoms, and have they been connected to SM?
Question 2: is it possible for a syrinx that has been small but stable for 6+ years to all of a sudden grow to be problematic?
Question 3: is shunting something anyone has dealt with in relation to symptoms like these?

I'm trying not to panic. But that's not really working for me! I've dealt with "false" possible diagnoses tons of times...I can't even count how many times multiple sclerosis, guillan barre, and even ALS have been thrown at me, only to be taken away after test results. I'm doing my best to convince myself this will not require shunting, that it's just a pinched nerve or something simple. But I have to admit that after I walked out of the appointment, I found the nearest restroom and threw up. As so, so many of you know- once you've gone through brain surgery, you'd do anything to avoid it again. I cannot face having to go through this process again. I am literally sick to my stomach just thinking about it. Any advice you can give, I would GREATLY appreciate. I'm feeling beyond lost.
CM, SM, Scoliosis
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Re: Shunt?? Panicking...

Postby Graybo » Wed May 22, 2013 7:48 am

Drummergrl

I can only keep repeating what I always say, and that is, I believe it is a muscle problem rather than the syrinx.

I have had the claw hand thing too. My right hand - little finger and the one next to it curled in and I also pulled my elbow in to my waist. My right shoulder was very weak too, and often dropped out of the socket, trying to straighten the fingers made them turn a whitish colour. I have got rid of the claw hand now as well as improving the other symptoms, and I have had them all believe me. Almost 22 years with this SM and I am hoping to have cured it later this year. It's a slow process but I am making progress gradually. I already told some people I am going to fix it, so I've got to do it now or make myself look stupid.

The last few months, I have seen the biggest changes through using plenty of magnesium, selenium and now I have added borax to the list. As I have said before, magnesium helps muscles relax whereas calcium hardens them. Too much calcium that most of us have through diet causes calcification of soft tissues. The muscles get hard and stay that way and can even turn to bone - look it up for yourself. Selenium also gets calcium out of the muscles and into the bones where it should be. Borax that you may have used for laundry seems to be similar to selenium.

Read 'The Borax Conspiracy' you can find easily on a search. It tells you about how your body uses calcium and how it takes a lot of the cells energy to remove it. After an injury or when your body is weak it causes problems. I have used the magnesium for quite a few years with some success but it wasn't until I added selenium that things improved faster.

My whole body feels different and my muscles are becoming very supple in some areas. The lumps I have found in my neck muscles are the most stubborn and I think it will probably take me some months of working on them to sort them out. The first muscle I noticed was on my backside which I believe is the biggest muscle in your body. I sat down and it felt like I had sat on a water bed or something - very strange to start with but so comfortable. My thighs have gone the same way now and also parts of my arms which has gotten rid of the claw hand and more.

Other books I have read such as 'Transdermal Magnesium Therapy' and 'The concise book of trigger points', and 'The Calcium Lie' have helped me understand this better. I have got into the habit of working on the trigger points which can be very tender and painful to start with but ease off over time as you release the pressure In the muscles. I do all this myself and don't need a dr or anyone really.

An easy way to see if your muscles are tight is to touch your neck gently around the throat and all over and find the tender points which I am sure you will find. I believe it is the muscle tension on the neck that restricts the flow of blood, CSF, and puts pressure on the spine. A good example for me, is to put a bit of pressure on my throat with my hands laying flat under my jaw - you don't need much pressure, and I can feel my voice is weak and I cough and choke in the same way as when the muscles were pressing before I worked on them. On thinking back to some of the people on ASAP that I knew who have died, I can remember them talking about the choking feeling. It always worried me that I might choke to death when things got too bad, but not worried about it now.

It has been maybe 5 or 6 months of working on my muscles with this idea and the minerals I talked about, and I think I am maybe about half way to fixing it - I hope! After all these years I can be patient a while longer. People keep telling me I look better, so the difference is noticeable. It is giving me the muscle definition I had when I was young and fit.

So I would suggest you try magnesium selenium and borax and careful stretching exercises pressing on the painful points. You don't have to press so hard that it is agony - just be persistent. I gave up on drs years ago cos they never fix anything. It's up to you to sort it yourself and it doesn't need to cost you more than the price of a few simple minerals and some light exercise.
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Re: Shunt?? Panicking...

Postby LFRM » Sun Jun 09, 2013 12:12 pm

I do not agree that all the symptoms you have are caused by muscle spams, this is a symptom of SM, and this means it is probable that your Chiari surgery was not well done in my opinion. There is an article named: Pathophysiology of persistent syringomyelia after decompressive craniocervical surgery that explain that a persistent SM after a Chiari decompression surgery is related to the lack of CFS circulation at the posterior craniocervical union. Dr. Heiss took 16 patients with SM not resolved after decompression which has the same symptoms you have and made another surgery to all of them right there in the same place as many of them had developed an arachonid cyst right there in the cranio cervical union that impede CSF circulation down into the posterior spine or there was a very slow circulation of the CSF causing the SM to increase. So what he did was to open more the posterior fossa and more important to open the vertebras a little more, giving the chance for the CSF to circulate down into the spine. It is more complicated than this but I am explaining it in an easy language. The result was that the SM was resolved in 15 o the 16 cases, they were cured!! So tell your doctor to read this article before you have any shunt. If the CSF is still not circulating properly then you will have high intracranial pressure as it is like a funnel, a lot of CSF in your head but a liitle circulation into the spine, so putting you a shunt will not help the SM, as the main cause is not resolved yet. I already have experience in this case.


Or download the article in:
http://www.google.com.mx/url?sa=t&rct=j ... 4661,d.aWc

I hope this serves.
Laura
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Re: Shunt?? Panicking...

Postby reedy » Mon Jun 10, 2013 12:35 pm

Great link, Laura, and nice explanation.

drummrgrl, have you contacted the NIH to see if you qualify to be on Dr Heiss' study? I know that it is still accepting patients, but like any study you need to meet their profile.
http://clinicalstudies.info.nih.gov/cgi ... -0143.html
there's the link! now call them, and send in your scans!

Oh and on your clear questions:
1) yes - hands are my major issue, as for many others. They are very worth worrying about.
2) yes - syrinxes and their symptoms are unpredictable
3) shunts are one way to go, but there may be other solutions. Dr Heiss avoids shunts when he can, but sometimes that's the best option. So far I have not had one. He did some other things to get around the issues. My other NS, here in London, refuses to discuss anything EXCEPT shunts, and is not very nice about it. So far, I prefer Heiss.
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Re: Shunt?? Panicking...

Postby hotsauceman » Mon Jun 10, 2013 6:14 pm

I have two shunts and my syrinx is supposedly stabalized and minimalized. After my last shunt in 2010 I rapidly lost the use of my left hand, it started with the spasm you speak of. Now the spams burning and stiffness is worsening in my right hand. My neuro keeps telling me to file for disability but I can'y because I'm still working. I just returned from the Mayo clinic where they said they can't help me. they also don't know how much longer I will be able to use my right hand. Sorry I have nothing positive but SM /CM can be a mental battle as much as a physical. Keep as positive and mentaly strong as you can. I still work 40+ hours a week and told my neuro "I'm not leaving till they kick me out.
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Re: Shunt?? Panicking...

Postby drummergrl » Tue Jun 11, 2013 7:50 pm

Thank you all for your replies. I met with my neuro about the test results. MRI's showed my syrinx (C3-T2, i think?) to be stable, but there is spinal cord atrophy in my cervical spine, along with "shrinkage?" The EMG showed nerve damage and weakness in my right hand (duh!). After much discussion, my neuro decided to get a brain MRI (which I'm positive will show nothing) and an OT evaluation with a hand therapist to get a baseline. He's also sending my current test results to the neurosurgeon I once met with at the Cleveland Clinic. She has agreed to look them over and let us know if she or her colleagues feel anything can be done.

Essentially, my neuro has said that if the brain MRI is clear, Cleveland comes back with nothing, and the OT has little to add, I'm out of luck. He said he'd see me in a year unless test results come back with an issue.

I am so bummed. Obviously I'm pleased that my syrinx appears stable, but it's so FRUSTRATING!!! The day I met with my neuro my hand was all seized up and stiff, which he noticed, but he still had nothing to add. We're considering upping my Neurontin to 300 am, 300 noon, and 800 pm. Who the hell knows, at this point. My husband would prefer I get more opinions, and was discussing Mayo- but it sounds like I'd likely end up where hotsauceman is, and Mayo is not local to me by far.

The great news is that the shunt possibility has died down again. Thank goodness- after a decompression and a spinal fusion, I'm not at all interested in another big surgery.

I'm terrified of losing use of my hand- I'm a grad student, working full time this summer, and only in my twenties. It was bad enough losing use of my leg for a month or so, but I just do not have the lifestyle where I can be "handless" for any period of time! It's so depressing. Luckily, I have an amazing support system with my husband and my friends. I'm trying to be positive, I really am- hopefully the OT evaluation will provide guidance as to how to keep my hand functional. Again, THANK YOU for your advice and friendship...
CM, SM, Scoliosis
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Re: Shunt?? Panicking...

Postby reedy » Wed Jun 12, 2013 11:51 am

I think you should see if you can get on to Dr Heiss' study. He is the best. He is conservative about doing surgery. Send a letter and your scans.

Good luck with grad school. That's hard work even if you don't have something giant like this to worry about. Good for you for sticking with it - do as much as you can, and do it for your self.
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Re: Shunt?? Panicking...

Postby drummergrl » Wed Jun 12, 2013 2:38 pm

Thank you so much for your support, reedy. It is definitely hard work but it gives me a sense of purpose and something concrete to focus on. In many ways, grad school has been like therapy!

I will look into Dr. Heiss's study, it sounds very interesting. I'm really hoping my neuro at Cleveland Clinic has something to add, and she promised to have her colleagues look at it too, which could be promising. This is all such a frustrating situation we're in, that much I know!
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Re: Shunt?? Panicking...

Postby lunderwood1949 » Wed Jun 19, 2013 2:17 pm

I had shunting surgery back in 1987. In 1987 chiari was not well known. I too was tested for MS and everything else .Finaly an MRI was ordered and chiari and SM were diagnosed. Since then I have developed the claw hands on my weak right side. I have seen many NS since my surgery and all say there is no pressure on the brain and the syrinx is not growing. They tell me the damage was already done and no additional surgery would help. I have had many rounds of therapy. One type that I highly recommend is aqua therapy If you can find a therapy pool near you try it. It really can help strengthen your weak side. I understand your hesitancy on further surgery. I just had a partial knee replacement on my left(strong) knee. It is taking me a while to rehab even this simple surgery. It is my prayer that you will find the best course for you.

You will be in my prayers.

Big Blue Wildcat Larry in KY
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Re: Shunt?? Panicking...

Postby marymac » Thu Jun 20, 2013 9:42 pm

IMO, Graybo has given you the best advice. . . he has helped me tremendously and given me so much new info and inspiration, and it IS working. I've rarely, if ever, heard of anyone getting better with the shunts: more problems than before half the time. My right hand also was getting clawlike but started using Magnesium Chloride liquid on them (and my syrinx which goes from C6 to conus: the butt)
and had much improvement. There's a lot of new attitude in his remedies and so far, it beats anything else I've tried (thank you Graybo). It's itchy at first, but only for an hour or so. Got it online, along with some other things he recommended. Might as well try it while you wait, ya know? Good luck and blessings to you.
Sunshine & gentle hugs
Marymac
Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: Shunt?? Panicking...

Postby drummergrl » Thu Jun 20, 2013 10:11 pm

Larry: your situation sounds so similar to where I am right now...my neuro called today actually and said my brain MRI is fine and that my cervical/thoracic MRI shows no new growth in my syrinx. Out of luck for any relief, I guess. thank you for sharing your story. Even if nothing changes for me physically, knowing I'm not alone in this means a lot.

MaryMac: I will read up on some of what Graybo discussed. I have to admit, supplements and things like that make me nervous. I'm always "that person" who has the rare side effects from medication, so I always get picky about what I take. But I will definitely read up!

I sent Dr. Heiss the forms for the study and will hopefully have my scans and letter in to him by early next week. I really REALLY hope I get into the study...it truly feels like my last option to have anything help. My neuro here has essentially given up (says he'd see me in a year), I've heard nothing back from Cleveland Clinic, and my PCP has been ineffective as of late. So if I don't get into Heiss's study I think it's time to give up. I'll throw myself back inlo school and try to pretend that I'm perfectly healthy and feel totally fine. Clearly no one is able to help me, so there's no use sulking and obsessing over it- I need to find a way to be ok with my symptoms. I just want to cry right now, though...so frustrated.
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Re: Shunt?? Panicking...

Postby reedy » Fri Jun 21, 2013 12:52 pm

drummergrl wrote:...I'll throw myself back into school and try to pretend that I'm perfectly healthy and feel totally fine. ...


Faking it, within limits, does have a lot going for it.

Most people are faking it in life in some way or another. We just have to be a little bit more so, at least to the outside world...
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Re: Shunt?? Panicking...

Postby drummergrl » Thu Jun 27, 2013 9:39 pm

You are so right! It's time for me to let go of my frustration, disappointment, and sadness. It is what it is! I submitted my info to Heiss's study and am crossing my finger that I get in. But if not, life will go on and I will need to be positive and optimistic that things will eventually improve. Thanks for the encouragement, I appreciate it!!!'
CM, SM, Scoliosis
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Re: Shunt?? Panicking...

Postby reedy » Sat Jun 29, 2013 3:27 pm

Great that you are giving it a go!
Remember if you don't get in, its definitely not personal or anything about the prognosis - Heiss is doing a study, so needs to meet specific starting criteria. I don't know what they are - only he and his staff can say.

Keep faking it! :mrgreen: In a good way! :P
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Re: Shunt?? Panicking...

Postby syrinx48 » Tue Jul 09, 2013 10:56 am

@ drummer girl,

I hope that you will/are accepted to the study of Dr. Heiss. I wish I could give it a go, but mu husband who also is a doctor, do not want me to write him. So I am sort of stuck to the doctors here. I know I don't have to listen, but I don't want marriage problems over this!

I hope you already heard something. Will you let us know how it went?

Annemarie
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