Hi everyone, i have type 1 chiari malformation and i suffer with really bad headaches, i had a vp shunt fitted in about a year ago to relieve some of the pressure but now my headaches are back and they are much more worst due to the pain and sensitivity around the shunt area, my doctor said that it was normal to feel pain around the area where the shunt is, but that along with my headaches is beyond painful... the next stp for me is to to have the foreman magnum decompression surgery, my neurosurgeon was very quick to decide that i should have this surgery without giving me much information on the surgery, and played it down like it was a 5 minute surgery and i had no reason to want to know more, they booked the operation after 2 days of me being admitted, i was freaking out as i felt they weren't telling me much about my condition and i was annoying him by asking him to explain more about the operation, so i decided not to go ahead with the operation, since then i haven't heard back from the hospital to have another appointment to discuss my options, and every day things get more painful. so im stuck in limbo right now, not really sure where or what to do next, but i have a 2 year old son, and im a full time uni student as well as working part time also, things are very hard to deal with right now as im in constant agony due to the headaches... can anyone help me on what avenues i should turn to next? thanks kay
I’m so sorry your symptoms are getting worse:( I know how scary that is. Was your NS experienced with Chiari? You should really talk to a NS that specializes in Chiari. It really bothers me that your NS wasn’t willing to answer your questions…you have every right to have your concerns addressed. If you need help finding a NS, there are lists of patient recommended doctors…you can find links on our resources page or our doctors page. I hope this helps.
Thank you Crystal it has helped im going to check out the list of NS, my NS wasnt experienced with chiari, and in some extent i felt like a guinea pig to him, as he said that not many people have chiari, he was pretty annoyed that i didnt do the operation, so im scared to get really sick again and have to return back to the same hospital under him again :( but thanks again for the advice, i appreciate it.
Crystal said:
I'm so sorry your symptoms are getting worse:( I know how scary that is. Was your NS experienced with Chiari? You should really talk to a NS that specializes in Chiari. It really bothers me that your NS wasn't willing to answer your questions...you have every right to have your concerns addressed. If you need help finding a NS, there are lists of patient recommended doctors...you can find links on our resources page or our doctors page. I hope this helps.
Hi,
I too am very sorry to hear about all your troubles and pain. I also would get in with a neurosurgeon who is very experienced in decompression and chiari. There is nothing more unnerving than to face surgery with a dr. who doesn't seem to know much about your particular problem. I have been dealing with a very large brain cyst, a shunt that overdrained due to my doctor's lack of knowledge and caring. And that overdrainage caused a significant chiari to develop along with brain sagging. I wrote a book, my memoir of what I went through and it's called "It's all in Your Head." You may want to look into it. I have heard that others have learned from it and gotten strength from my story. You can find it on Amazon and through Barnes and Noble, through Tate Publishing, and other places books are sold.
Keep us updated and I hope that you are able to find a good, knowledgable and trustworthy doctor that you feel comfortable with.
Sincerely,
Maria McCutchen
Hi Kay I have chiari malformation type 1 i had surgery in january of this year i still have trouble i feel like my surgeon did the surgery and now he acts like i am a bother to him. i wish i had an answer for you as for everyone else that suffers from this. i would have wanted more information and not went in to surgery 2 days after seeing the doctor he should have explained more to you. i hope all gets better and i wish you luck..
Hey Kay! I had my decompression in November. I went to dr Henderson and spent a small fortune making sure I went to the best. I am a lot better. I am not 100% by any means. It is a pretty long recovery time as well. I still have not started back working. I am weaning myself off all the medicines I was on. financially this is a huge decision to make. I pray you get relief from your pain!
Had the surgery exactly one year ago, and my headaches have gone, the procedure went well, it takes quite a while to fully recover but I would personally recommend you to go for surgery, before I hade mine, I could not bend, cough, laugh, smile, clean my teeth, without getting a headache, if I sneezed I thought my head would explode, that has all gone. I can now have a good sneeze and not feel a thing.
Two weeks after surgery I had to have a lumbar puncture because of pressure in the brain, I was getting really bad headaches, that did take away the headaces, but since then I have (they think, still testing) nerve damage and I get pins and needles in my feet and legs and hands, but that is better than the headaches.
GOOD LUCK !!!
Thank you all for all the superb advice, your words have truly made me feel alittle more reassured that im not the only person going through this, i wish you all continuous good health and happiness. :) x
Have the surgery definitely. But find a doctor that specializes on this procedure. I am almost nine weeks post-op and am now finally feeling better than I have in years. I went to the Chiari Clinic in Milwaukee. Dr. Heffez does two surgeries a Chiari surgeries a week. He is the best in this field. He explained everything from beginning to end, and tried other options before he preformed the surgery. My sister had the same surgery over ten years ago because the doc didn't do all the proper procedures. She does not have a titanium plate to cover the removal of the skull, just a dura patch, leaving her brain stem exposed to potential danger. You have the surgery on a Monday, stay in ICU two days, then another two days, when released you have to stay in Milwaukee until the following Tuesday to remove the stitches. I stayed in a place called "Kathy House". It was cheaper than a hotel, they picked me up and drove me to the hospital. Let me know if you want more details. Deborah
Hi
I also had surgery in Milwaukee with Dr. Hefeez on Jan 16th. I went back to work on March 7th. I feel like a brand new person. I don't regret having the surgery at all. I think the key is to choose a doctor who specializes in Chiari and someone you feel comfortable with. The first few weeks of recovery were kind of tough but it was so worth it to finally be feeling better. I also stayed at Kathy's house and they were wonderful. Good luck with your decision.
There was no shunt in my case. Nor was there discussion of one. I have suffered from headaches since the age of 4. I am now 52. I had many many other neurological problems due to the Chiari. Things have been much better. I actually two surgeries at once, I also had spinal surgery and the I was terrified of it, but the spinal surgery is giving more trouble than the Chiari surgery ever did. Look up on-line, find a specialist in Chiari. Most Neuros only do one or two a year, but my my Chiari specialist does two a week. 49% of his surgeries are do-overs, from people who had the surgery by other Neuros, and it wasn't done properly. Like I said my sister needs a redo.
Hello, my name is heather, my 2yr old daughter had chiari decompresion surgery jan 10th. Sounds like you need a new neurosurgeon. I switched my babys becuase I wasnt comfortable with my 1st one and my ns now is great. My baby is doing better since surgery but children bounce back alot quicker than adults. Your ns could be the best surgeon ever but if hes not willing to take the time ti answer a few very important questions…then u need to look into finding a new ns. I wish u the best of luck and god bless you.
Kay,
My daughter has undergone all of the above surgeries. Generally a surgeon will suggest the least risk, highest result surgery. This doesn't always result in what we want, but having a surgeon who is caring and takes the time to describe to you what you are about to undergo is critical to your mental wellbeing. I think you need to also take someone close to you to your appointments. You need to write your questions down before you meet your next surgeon. Every questions is relevant, no matter how simple or complex you may feel that questions is. Don't just accept fate, question it.
All the best
Thank you Susan, its so refreshing to talk to someone who understands how painful having a shunt can be, i took your advice and went to get it checked out, and found out it was set at the wrong setting and too much csf was being released...atleast now i can have some sort of relief now that the shunt has been sorted, once again thank you for comment, very much appreciated x
Susan J said:
Kay,
I have a shunt too. Don't let them tell you that the shunt shouldn't hurt! I have have had my for 2 years as of tomorrow. The feeling in my head is just barely getting back to normal. It doesn't hurt as bad as it did but when the storms come in, I can really feel it in the chiari area and the shunt. When I have pressure spikes a little fluid seeps out at the site of the shunt between my scalp and skull. It makes it very uncomfortable. I finally had a doctor tell me that this was normal in very small amounts. At the top of my shunt there is a little "button" (I don't know what it is really called). You should be able to push on it and it should sink in. I was told that this was a quick way for me to check if things were okay.
I had the decompression surgery then developed complication. I had complications from the shunt also. Have they checked your shunt setting? Have they checked your ventricle size? It is important to do both of these to make sure the shunt is functioning properly. They can tell the ventricle size with a CT or MRI. They can check you shunt setting with a shunt series X ray. I think it is pretty standard to put programmable shunts in. If found that your shunt setting is not right it is easy to change. It doesn't require surgery. They put this piece of equipment against your skull and push a button. It is quick and doesn't hurt. You then need another X-ray to show what the new setting. My shunt was set at 100 for the flow. When they finally checked the shunt setting with an X-ray, it was at 150. It shouldn't change that much on its own. The doctor up it to 200 to see if it offered any relief. It didn't in my case but you should know within 24-48 hours if this will provide relief. My shunt had malfunctioned and the tubing was split. The shunt was replaced. It was soon discovered after that I didn't need the shunt. They ligated the shunt essentially turning it off without taking it out. It is tied off by my ear.
I know I have rambled, but get the doctor to check your ventricle size and shunt setting. I had problems with my doctor. I had to go to another neurologist on a consultation basis. I had to go back to the clinic that I had my surgery with, but consulation doctor gave the knowledge and phrases I needed to say to get someone to listen.
I firmly believe that the doctors have no right the tell what the shunt should feel like unless they have gone through it themselves. There is nothing anyone could have done to prepare me for what it feels like having a shunt in your head.
Best of luck and if you any more questions just ask,
Susan J
Thank you all for your comments and advice as well as sharing your own experiences, it has really given me the strength and determination to find a good ns who knows more about chiari. im still looking at the moment but hopefully il find one soon. Thank you all again
My daughter has type 1 and it is a 5 mm herniation. I put her on biomor curcumin from healthysource.com .18002001203
Her headaches don't seem to be as bad. It is a natural anti-inflammatory and pain reliever and has many wonderful health benefits. Since she has been on it, I have noticed that her eye hasn't been twitching either or the episodes are further apart. Please research turmeric curcumin and see if it is something that can alleviate the symptoms. On one site, I saw where the herniation is referred to as a tumor. I am not a doctor or trained in anything medically, but I did a lot of research. A derivative in curcumin is proven to shrink cancer tumors in mice. So, since there isn't a whole lot known about chiari, I would hold off on the surgery if possible because there is no going back. Try this product and see if there is any improvement. Good luck and God bless. I would like to know if anybody else has tried this and what results they are having.