When Did You Decide to Have A Shunt

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When Did You Decide to Have A Shunt

Postby gunflint » Fri Jul 06, 2012 8:34 am

I was decompressed in October. There has been no change in my syrinx or in CSF flow. I have not had any increase in symptoms and the only change I noticed was a decrease in headaches. I know that it's a little premature at this point to be thinking about shunts but here's my concern. I'm a study participant and that means i have top medical care by the gang at NIH. However if socialized medicine does kick in I'll be 60 when the study is over. I find it extremely doubtful that the government will cover a shunt operation on a 60 year old man on SSDI that is no longer contributing to society. That and the fact that I have absolutely zero trust in our local neurosurgeons. The last one I saw said that it was ok to go back to work until my hands started to tingle. That and that he observed two decompression in school and he thought that they were "very messy."

What it comes down too is, is there some symptoms that I should be watching for that are common among people that have had decompression's and then went on to have shunts? I realize that I have some time but it's funny how that time can start to fly by. I really don't care to discuss socialized medicine here. That is not the reason for the post.
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Re: When Did You Decide to Have A Shunt

Postby reedy » Fri Jul 06, 2012 12:22 pm

Hi gunflint,

I'd say keep in mind the consistent advice that comes over the forum here - avoid surgery until you really have to have it.
As you know, you and I share the same neurosurgeon and I'd agree he is the best around. (Master of the Universe, we call him around our house, just for short.) Nonetheless, I wouldn't have pre-emptive surgery, even from him.

I'm not sure you need to worry that having medical coverage available for everyone will mean you will get poor care in the future. Have a look at the Chiari UK forum http://www.chiari.co.uk/chat/ - people of all ages and conditions get excellent neurosurgical care, and its free. (Its not problem-free, of course, as its a terribly difficult disease we have). You can ALSO have private medical insurance in the UK, lots of people do. That allows you a different choice of hospitals, and sometimes faster care. Sometimes, though, the difference is relatively minimal - better rooms, but the same high quality of specialist care. And you save something like $120,000. As for age, there are old folks on the forum who are getting plenty of surgical care. My neurosurgeon here in the UK says most of his patients are in their 70s and 80s.

Do spend some more time looking around for your backup doc after the NIH runs out. I share your concerns - anyone will pale in comparison to MotU.

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Re: When Did You Decide to Have A Shunt

Postby Dcuster » Fri Jul 06, 2012 3:26 pm

I would have to say then even more the reason to have it done by an expert then take a chance and have to have it by an idiot. Also be thankful you got into the study, I got my letter this week saying I do not qualify because of all the back surgeries I have had after my shunt. Now I have tethered cord at the site of the shunt which was done by a local Dr here who said if you can push a button on a keyboard with a pencil in your mouth you can work. hmmmm think I would take the expert while you have a chance.
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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Re: When Did You Decide to Have A Shunt

Postby gunflint » Fri Jul 06, 2012 3:33 pm

I have my one year follow up in October and I will discuss it with them then.
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Re: When Did You Decide to Have A Shunt

Postby pseudotumor » Sat Jul 07, 2012 3:07 am

Being less than a week out from my shunt surgery I'll tell you I feel mixed but hopeful. I was at a point where I was getting spinal taps every other week and taking a very high dose of diuretics just to survive. I put off surgery for a long time because I was afraid, and at the moment the recovery is agonizing. A million times worse than my PFD. But my head is doing considerably better and I'm holding onto faith that the pain from surgery will subside and that with a bit of valve tweekage I'll be doing great. You really have to weigh what you're going through on a day to day basis against the possibilities.
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Re: When Did You Decide to Have A Shunt

Postby Andrea » Sat Jul 07, 2012 12:13 pm

I got decompressed in march of 09 and after I recovered (which took a LONG time) I was better. The pressure in my back from the syrinx had gone and I was feeling ok. Few months later (end of Aug 09) my symptoms returned and worsened quickly. That's when I had my shunt. My syrinx never decompressed with anything I did but the pressure and numbness/tingling in my hands/feet have left for the most part. Difficult decision. I would wait until you need one. Unfortunately I dont know anything about the medical system in the Us. I'm in Canada and have free health care. Can't imagine having the worry that they wouldn't cover a surgery. I hope you get good answers from your f/u appointment.
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Re: When Did You Decide to Have A Shunt

Postby gunflint » Sat Jul 07, 2012 1:49 pm

We need to make a quick rudder change here. My fear is not that I don't have insurance now or that I can't chose my NS now. My fear is if the US does tragically change over to socialized medicine I won't have those choices. As it sits right now I could get an MRI this afternoon, I can choose my surgeon, and I can choose where I go to have it done. No one knows at this point what will happen without repeal. I do know one thing for sure. Nothing is for free. Not in the way that we (American's) are accustomed to freedom anyway.
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Re: When Did You Decide to Have A Shunt

Postby reedy » Wed Jul 11, 2012 2:51 pm

Hi gunflint,

The irony here is that your surgery at NIH is one of the few pure examples of socialised medicine in the US. Every US taxpayer has contributed a tiny bit to your treatment there, and mine as well. It's pure social support that gets us that top-level service. So your concern is actually should you get in gear and take advantage of this socialised medical support before its available to everyone. :wink:

If you stay in an insurance plan, then your situation should remain the same. In the UK if you buy private insurance, you get more speed and easier choice than if you are in the NHS (but you still do have choice on the NHS, it just takes a bit of paperwork and pushing). Private insurance will always give you whatever coverage you are able to pay for (and that they arrange in their dealing with medical institutions). Since you now have a pre-existing condition, you probably HAVE to stay with the insurer you've got now, so you probably don't have as much choice as you think you might.

Having medical care available to everyone, even if its not delivered in a very glamorous way, really makes for a more stable, civil society. Doctors are still very well paid here in the UK, they extremely skilled, and if you need them, they are there for you.

BTW, I am a US taxpayer too, despite living in the UK.
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Re: When Did You Decide to Have A Shunt

Postby gunflint » Wed Jul 11, 2012 9:39 pm

I was hoping this subject was dead. I reject outright that the National Institute of Health is a form of socialized medicine. If they were, anyone could be treated there and it would take a 6 month wait. Much of their funding comes from big pharma, private donations, etc. here's a little taste of what Canadians are doing. It appears that choosing to live takes precedent over socialism. I regret posting this as the original post had to do with my question of when someone decides to get a shunt. Not if socialized medicine is what the USA needs.

http://www.freep.com/article/20090820/B ... ealth-care

Hospitals in border cities, including Detroit, are forging lucrative arrangements with Canadian health agencies to provide care not widely available across the border.

Agreements between Detroit hospitals and the Ontario Ministry of Health and Long-Term Care for heart, imaging tests, bariatric and other services provide access to some services not immediately available in the province, said ministry spokesman David Jensen.

The agreements show how a country with a national care system -- a proposal not part of the health care changes under discussion in Congress -- copes with demand for care with U.S. partnerships, rather than building new facilities.

Michael Vujovich, 61, of Windsor was taken to Detroit's Henry Ford Hospital for an angioplasty procedure after he went to a Windsor hospital in April. Vujovich said the U.S. backup doesn't show a gap in Canada's system, but shows how it works.

"I go to the hospital in Windsor and two hours later, I'm done having angioplasty in Detroit," he said. His $38,000 bill was covered by the Ontario health ministry.
Canada eyed in the health care debate

Dany Mercado, a leukemia patient from Kitchener, Ontario, is cancer-free after getting a bone marrow transplant at the Barbara Ann Karmanos Cancer Institute in Detroit.

Told by Canadian doctors in 2007 he couldn't have the procedure there, Mercado's family and doctor appealed to Ontario health officials, who agreed to let him have the transplant in Detroit in January 2008.

The Karmanos Institute is one of several Detroit health facilities that care for Canadians needing services not widely available in Canada.

Canada, for example, has waiting times for bariatric procedures to combat obesity that can stretch to more than five years, according to a June report in the Canadian Journal of Surgery.

As a result, the Ontario Ministry of Health and Long-Term Care in April designated 13 U.S. hospitals, including five in Michigan and one more with a tentative designation, to perform bariatric surgery for Canadians.

The agreements provide "more immediate services for patients whose health is at risk," Jensen said.

Three Windsor-area hospitals have arrangements with Henry Ford Hospital, Detroit, to provide backup, after-hours angioplasty. Authorities will clear Detroit-Windsor Tunnel traffic for ambulances, if necessary. The Detroit Medical Center also provides Canadians complex trauma, cancer, neonatal and other care.

"In the last few years, we've seen more and more Canadian patients," said Dr. J. Edson Pontes, senior vice president of international medicine at the DMC. They include Canadians such as Mercado, whose care is reimbursed by Canada's health system, as well as people who pay out of pocket to avoid waiting in Canada.

Pontes declined to give revenue figures for the DMC's international business, but said the program "always has been a profitable entity." About 300 of the DMC's 400 international patients last year came from Canada, he said.

Tony Armada, chief executive officer of Henry Ford Hospital, said the hospital received $1 million for cardiac care alone.

Critics of a health care system like Canada's -- a publicly funded system that pays for medically necessary care determined by provinces -- often cite gaps in Canada's care to argue that the United States should not allow its current debate over health care to move it to a socialized system.

No plan currently under discussion in Congress calls for a universal plan like Canada's, but opponents fear socialized medicine, anyway.

Canada's U.S. backup care "speaks volumes to why we don't need government to take over health care," Scott Hagerstrom, the state director in Michigan for Americans for Prosperity, said of the Canadian arrangements with Michigan hospitals. "Their system doesn't work if they have to send us their patients."

But Dr. Uwe Reinhardt, a Princeton University health economist who has studied the U.S. and Canadian health systems, said arrangements with cities like Detroit "are a terrific way to manage capacity" given Canada's smaller health care budget.

"This is efficient," he said. "At least in Canada, you don't worry about going broke to pay for health care. You do here."

Pat Somers, vice president of operations at Windsor's Hotel-Dieu Grace Hospital, one of the hospitals that sends patients to Henry Ford, said the issue of finding ways to pay for and prioritize care requests is not in only Windsor.

"The ministries are quite aware of" waits for care in Sarnia and Hamilton, she said. "That's why we are investing in a wait list strategy" to best determine how to prioritize cases for people who need hip and knee replacements, cataract surgery and treatment for cancer, for example.

Mercado, 26, faced a longer wait because he could not find a matching blood donor, even though his family conducted a broad search.

He said doctors told him money was limited for transplants, particularly ones using unmatched donors, which are riskier.

After his family's doctor wrote the Ontario ministry, the agency agreed to pay $200,000 for the operation.

The family, their church and Mercado's school, Conestoga College in Kitchener, raised another $51,000 to cover expenses going back and forth to Detroit.

"I think of this every day as a gift from God," Mercado said.
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Re: When Did You Decide to Have A Shunt

Postby hegnauea » Thu Jul 12, 2012 8:45 am

Hi, Regardless of your feelings on how the new healthcare plan will affect people like us with rare conditions, I don't think you should go seeking out this type of serious surgery prior to when you would need it. And I doubt you would find a surgeon that would cut your spinal cord simply because of your fears of us perhaps heading towards socialized medicine. I think many of us who currently have good healthcare and good doctors are fearful of the future of medicine in this country and what that means for us, so I am not trying to discount your worries. You can always get a second opinion though from a top doctor and see what they say about a shunt - there is no harm in that and it may help you feel better about the situation. Good luck!

Ab
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Re: When Did You Decide to Have A Shunt

Postby hegnauea » Thu Jul 12, 2012 8:49 am

Oops I realize I didn't answer your initial question. I think alot of doctors reserve the shunts for when things are quite bad. Like you can't walk, or other parts of your body are shutting down. I have seen 3 neurosurgeons and none of them would even consider it. I have a short, wide syrinx at C5 - C6.
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Re: When Did You Decide to Have A Shunt

Postby gunflint » Thu Jul 12, 2012 11:25 am

I agree completely that no NS would do a preventative shunt surgery. My thinking is that as long as the success of my PFD is questionable and if over the next 4 years I start to have symptoms that point to more trouble, is this a viable option. It is not uncommon for me to get way ahead of myself.
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Re: When Did You Decide to Have A Shunt

Postby reedy » Thu Jul 12, 2012 2:40 pm

Dr Heiss turned himself inside out - and me too - not to put in a shunt. He recognized it as the current considered 'standard of care' for my condition, but felt that if it could possibly be avoided, it should be. Only time - and my MRIs in 2 weeks- will tell if we need to go to back to doing a shunt.

This is just to say that Heiss is conservative on this kind of thing, so I'd trust his judgement.

You are right, we shouldn't get in a political wrangle on this thread (lets start another one if we want to!) but I did find the articles you posted interesting and informative. But there weren't any surprises in there for me - it all made a fair amount of sense from a management perspective.
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Re: When Did You Decide to Have A Shunt

Postby AKShel » Sat Jul 14, 2012 5:49 pm

I agree with Reedy, and am glad that Doc Heiss is conservative...and I also feel that I can trust his judgement (with appropriate homework on my own part too....but the more I read, the more things make sense....)

I had my decompression done in AK June 2011, unfortunately my outcome wasn't as good as one would hope. Doc H installed a VP shunt this past April to deal with the communicating hydrocephelus (a sometimes tag-a-long friend of the SM....the infections from first surgery insured that the SM wouldn't get lonely in my case). So far, so good. I go for my 3 month check up early August.

There has been some talk of redoing the decompression as there isn't any CSF flow at the surgery site (scar tissue?) I am investigating some less invasive possibilities. If they sound promising, and Doc H likes the idea, I'll pass the info on....it's all preliminary and subjective right now, but I am working diligently to gather facts (and avoid another surgery)

Gunflint, are you thinking syrinx shunting, or other? All of our decisions are tough ones...take care.
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Re: When Did You Decide to Have A Shunt

Postby Tanya2 » Tue Jul 17, 2012 9:53 pm

I found this thread to be of particular interest. I have mixed feelings you see I am a Canadian citizen who coincidentally enough was living in Windsor Ontario at the time I was diagnosed, and coudn't get the MRI I needed for diagnosis in Canada after 12 yrs. of symptoms. I couldn't get meds or treated seriously either, it was a living hell. I went to Detriot and within hours had an MRI and a diagnosis. I paid for it but at that point I would have given my first born for help. I got medication for the first time in my long history with SM respected finally I have never looked back. Fast forward several years and I have had an MRI at no cost every year or more. I have consistently available specialists and as long as you live in a big city center, they are good. I hate to get into the political discussions but I have to say gunflint this one is a good one. Not all confilct is bad! Never be sorry for posting this because life with a disability is political. No matter the system of government or medical care. We all fear change it is natural. Truthfully, I believe in a system that provides afforable health care AND choices. In Canada that doesn't make my viewpoint popular but I have 3 rare diseases and I have struggled in our system to get all three properly dx and dealt with.

Anyway, on a different note I have struggled with the neurosurgeons too but I have seen several who have all said the same thing, don't do it until you have to. After going over the whys with them I had to concede I agreed. Despite being symptomatic ( syrinx C5-T12, three central herniations and significant cervical arthritis). Mast cell activation disorder and cystinuria.
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