Has anyone had the surgery and then had all of the symptoms come back, even a little worse? Please let me know, I have tried reaching out to others but not able to get an answer. Please answer if you can.
Thanks
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Courntey
Hi. I did not have the surgery but my son did. He felt better immediately and about 3-4 weeks after he felt worse than before. He felt worse for about 6 or 7 weeks. His neurosurgeon said it was due to the swelling caused by the surgery, not from symptoms actually getting worse. I was scared at first that things were worse and not due to the surgery, but as they said, it got better. They said that immediately you feel better b/c you suddenly have a release of pressure, but then once the swelling and inflamation occur as a result of the surgery(which takes a few weeks after surgery to feel the full affect), the swelling and inflamation increase the symptoms. Who did your surgery? What do they say?> To: beth_8@hotmail.com> From: acm-cpt8305@lists.careplace.com> Subject: [acm] Had surgery…still have problems> Date: Sun, 30 Mar 2008 19:18:00 -0400> >
Yes, I have had surgery and still have the problems…Lots of them!!
On Sun, Mar 30, 2008 at 4:18 PM, sev72 acm-cpt8305@lists.careplace.com
wrote:
After my decompression surgery in 2001, then the cervical fusion in
2002, I had really bad pressure headaches. 2003 and 2004 were
terrible. I was treated for “migraines” during that time period. In
Sept 2004 I went to eye doctor who did my lasik and he noticed my
optic nerves were really inflamed. A brain MRI the next day showed my
brain had herniated again to 5mm. This time though it turned out to be
from high pressure from too much fluid. In my case the pressure and
fluid had finally built up enough to show on a MRI. I had 3 opinions
and had a shunt put in - in 3/2005. It had it’s issues and my last
replacement of a sticky shunt valve resulted in a bad shunt infection.
So now I am without the shunt but the symptoms are all back as they
were before - Pain and pressure back and top of head, neck pain,
nausea, balance problems, optic nerve shows inflammation. Talk to
your doctor and see if high intercranial pressure or pseudotumor
cerebri (another name for it) could be causing your problems. Take care.
Lorene
ACM 1 - 10mm Decompressed 6/2001
Laskik 11/2001
Cervical Fusion 2/2002 C4-5 and 5-6
VP Shunt 3/2005
Removed Shunt 8/2005 due to abdominal problems
VP Pleural Shunt 9/2005
VP Pleural Shunt 9/17/2007
Staph Infection 10/4/2007
VP Shunt Removed 10/18/07
Lung Thoroectomy and Decortation 10/19/07
On Mar 30, 2008, at 6:18 PM, sev72 wrote:
Hi. I had the decompression surgery in 1995 and still have the same problems and a few more. I also had problems in 2001 with pressure and spinal fluid build up causing hemorrhaging and pseudotumor cerebri.
So, by reading the replies here it sounds like you’re still having problems and it’s NOT unusual. Hopefully you have a good doctor. Mine was supposed to be one of the bests but I’ve decided that he’s not. Every year since my surgery he’s spent about 5 minutes with me to say, “Hi young lady, how are we feeling?” I tell him and he will then say, “ok, we’ll that’s to be expected, here’s for lorcet and I’ll see you in a year” and when I first got the pseudotumor cerebri problem he told me it wasn’t related to the Chiari. He’s the top doc at a University Hospital and that’s the help I get. He also told me about a year after my surgery, that with a certain number of patients the surgery doesn’t help and unfortunately “I was his failure”. I think when he decided that, he technically or mentally wrote me off.
So, I hope to God that you have a good doctor. I don’t see mine anymore, I can’t go through it again.
I did see a Neurosurgeon/Ophthalmologist who helped a bit with the pressure headaches, the pseudotumor cerebri but that was 5 years ago and they’re back so I just live with it. You may contact one of those doctors but they’re hard to find.
If you can see Dr. Milhorat out of NY then do it! He’s the best.
I’ve heard that with some people who have symptoms after surgery they just wake up one day and all are gone.
Good luck! Julie
It seems way too many people have recurring problems some time after decompression surgery. For some, it’s years, others months, weeks or days … and for others, it’s never!
Does that tell anyone anything about the long-term success rate of surgery? Although Chiari appears to cause symptoms in of itself, I believe it’s secondary to Th1 disease (which is being found to be at the heart of chronic disease). Your D-metabolite blood levels might provide a clue to the root cause.
“Th1 disease
(which is being found to be at the heart of chronic disease).
Your
D-metabolite blood levels might provide a clue to the root
cause.”
Ok, explain what is “Th1 disease” and what you mean about “D-metabolite blood levels”.
Thanks,
Julie
Granted our symptoms do come back but in my opinion its just Chiari. Do we understand it? No. Do we accept it? Sometimes. I wish there was an answer for our pain. All we can do is go on, continue to be strong, and believe that one day DR. B and/or Dr. M will find a way to make this unbelieveable condition better for us all.
chilo
Why would anyone suffering want to wait a life time?! At this rate, and in the direction things are heading in chiari circles, it will take them a very long time to find the cause. However, I have reasons to believe knowledge of the root cause is already here but, as with anything relatively new and revolutionary, it’s going to be a huge uphill battle - in fact, it’s already hugely controversial and the powers-that-be in some circles have already been trying to derail it. If you’re interested…
http://winmlm.neostrada.pl/vitamindbook/vitamindnewresearch.pdf
I know of acm patients who’ve already embarked on this and know of others with the indicators. It may not jump out to you as it’s complex. Take the time to learn and properly measure your D levels and with time you may start to understand.
Ok, Amigo, got it. Vitamin D deficiency (found probably through a blood sample, I’m guessing-?) is commonly found with chronic disease, and the D deficiency is not what is causing chronic diseases, but is a result and a sign of something else going on in your body, that is causing the disease.
And the answer is NOT to add Vitamin D to your diet. In fact all the Vitamin D that the FDA has added to our food has caused this very problem, in that ingested Vitamin D actually causes the Vit-D deficiency found in blood sampling.
So the answer must be to take in less Vitamin D - but how? What do you recommend? Organic foods? Let us know what you see as a solution to this!
I have something else to add but will do so in a second post.
Julie P. (not the Julie above, but a different Julie)
Hey, Sev72 and Julie and Chilo,
Another thing may be causing the recurrence of symptoms after decompression surgery.
Dr. Bolognese and Dr. Milhorat and Dr. Chen at TCI have in the last year or so focused on the connection between Chiari and Tethered Cord. If your spinal cord is tethered, it will pull down on your cerebellum and cause herniation/tonsillation. An initial decompression will reduce the pressure, but in time the symptoms will reoccur as the tethered cord again pulls on your cerebellum. In these cases, the tethered cord needs to be detethered. I was at TCI in December 2007, and three others with me all had situations which required cord detethering. One had already had decompression surgery, and symptoms had reoccurred and he was being seen for cord detethering, and the other two had not yet had any surgeries (a young woman and a little boy), and both were being recommended for cord detethering FIRST, due to minimal tonsillation, and all the signs of tethered cord, which often will clear up the symptoms without having to have a further decompression surgery.
Dr. Oro in Colorado is also just beginning to work with tethered cord issues as related to Chiari. TCI is ahead of the game in this area though, and has already helped many people with this. A fourth person I met at TCI, a woman from Texas, already had the cord detethering after having had the decompression surgery, and it completely cleared up her symptoms. She was there with her husband this time, as he is having some troubles. Let me know if you’d like to contact her to hear her story. She makes and sells Chiari Chill Pillows and scarves for coolness against your head/neck for Chiari sufferers.
Julie P.
“Vitamin D” is not a vitamin. This has been a huge medical error. It is a secosteroid. Supplementing/fortification of “Vitamin D” suppresses the immune system by inactivating the Vitamin D Receptor (VDR). After all, that’s what steroids do. However, in doing so, this causes the proliferation of intracellular cell wall deficient L-form bacteria and chronic disease.
Read this:
http://bacteriality.com/2007/09/15/vitamind/
The medical community has a poor understanding of this and what they consider as “low” is inaccurate. They think that “low” Vitamin D is the cause of people’s problems so they endorse supplementation. Many people feel better soon afterwards because it’s a steroid. However, everyone knows that steroids just do not help in the long run. The disease continues to worsen as a result of the intraphagocytic bacteria and it’s a matter of time before the patient will worsen.
Yes, the D-metabolites are measured with a blood test:
1,25 dihydroxyvitamin-D (this blood sample must be frozen)
25 hydroxyvitamin-D
The answer is to activate the VDR and the immune system by stopping all exogenous Vitamin D and taking Olmesartan while weakening the intracellular bacteria with specific low-dose, pulsed, antibiotics. Once the immune system has been activated, it can start to kill the bacteria.
All this is being referred to as Th1 inflammatory disease. Common to this is weakening of the connective tissues, leading to hernias, such as disc disease, and bone loss, such as osteoporosis, among many other problems. I have reasons to believe chiari is secondary to this.