Just wondering if anyone has had decompression surgery more than once. Just found out today that my daughter has a cyst on her cerebellum and now is having her 4th decompression next week.
Story Clan,
I am so very sorry. I have had 1 CM Decompression & 1 Micro Vascular Decompression Surgery. I cannot imagine what you or your daughter are going through. Please know we are here and you are not alone !!!
Tracy Z.
My daughter has had two decompressions,one October 2012 and one June 19, 2013.
I have had one decompression and a duraplasty. I do not think I am going through any more surgeries.
One with Dr. Henderson. I think if the decompression is done properly, you shouldn't ever need it again.
The reason she has had to go back in are different reasons. One was because scare tissue formed and was almost as hard as bone, once fluid formed on the inside of the cerebellum and this time there is a cyst on the outside of the cerebellum and it shows signs of scare tissue building up again. I don’t think it’s because it was done wrong. Nothing ever goes as it should and it has the Drs scratching their head. Back in October was her 3rd surgery and when she came out she couldn’t feel anything on her right side. I’m just ready for this to all end and she still needs spinal fusion surgery which we were planning until we found the cyst the other day
Please know you, your daughter & family will be in my prayers. I am positive you are a remarkable Mother with a remarkable daughter. It's just difficult for most adult Chiarians to even comprehend more than one surgery. Please let us know if we can help you in any way we possibly can.
Tracy Z.
Decompression surgery in 2010, again in 2011 followed by a third surgery to resew the dura patch due to leaking csf 30 days after second decompression. Now awaiting surgery for 4th time to deal with suspected scar tissue and build up (cyst) at medulla oblongatta. When will it end???
This is a lot for your daughter and you, but just keep moving forward and you’ll eventually be on the other side. How old is your daughter? Curious if she had a plate put on the back of her head??
Praying’ for you,
Jenn
My daughter is 15. She just had the 4th surgery yesterday morning and this recovery has been much better than the one back in October. There was a lot of scare tissue already built up again. I’m very hopeful this is the last one. She did not have a plate put in. I’ve never herd of that. They did cut more bone and put a bigger patch in this time.
jcdemar said:
This is a lot for your daughter and you, but just keep moving forward and you’ll eventually be on the other side. How old is your daughter? Curious if she had a plate put on the back of her head??
Praying’ for you,
Jenn
I've felt the same way at times. She just had her 4th one yesterday and there was more scare tissue built up just since October 31st which was her 3rd surgery. I will be praying for you cause I know what you and your family are going through.
Ivy said:
Decompression surgery in 2010, again in 2011 followed by a third surgery to resew the dura patch due to leaking csf 30 days after second decompression. Now awaiting surgery for 4th time to deal with suspected scar tissue and build up (cyst) at medulla oblongatta. When will it end???
My daughter is doing wonderful. Her surgery was yesterday morning and she is still in ICU but should go to the floor tomorrow. This is such an improvement since her last surgery when she spent 4 nights in ICU and another 3 days on floor. I’m hoping we get to go home this weekend. She is a very strong 15 year old. I couldn’t imagine going through all she has gone through.
Abby said:
Bless your daughters heart. Know this must be hard on you and her. Keeping you all in my prayers and thoughts. As Tracy said, your a wonderful mom. Let us know how she is doing. We are here for you both.
God Bless
I'm in a hurry but trying to help-- so I'm sorry it I seem short or to the point (I am not being rude, just trying to help fast)....please read until the end....
I hope your daughter has a comfortable, quick and full recovery.
****************************
I know why the question about a plate was asked- it is very significant re: what these surgeons have actually tried to do to help her.
I am an attorney with a medical background (education & experience) & I have done EXTENSIVE research & networking re: this issue.
Nearly EVERY surgeon does NOT perform this surgery properly--- that is, in a way to correct the underlying problem. As a result, many patients (esp. EDS, but others too), need multiple surgeries & symptom get worse.
I know of 3 surgeons who are successful with these surgeries -- their patients GET BETTER (not just stop getting worse or actually get worse). Only 3!! (if anyone knows of more, please let me know!)
(WATCH OUT how "successful" surgeries are defined. For decompression/Chiari, a "successful surgery" only prevents progression of symptoms or slows progression of symptoms. Success is NOT improvement...
Your DD should NOT need multiple surgeries if it is done correctly, no matter what anyone (layperson, patient, dr) says.
And this is why:
The traditional Chiari surgery involves widening the opening at the base of the brain to release the pressure...to provide support what I'm saying, here is a quote from the Mayfield Chiari Surgery Center:
The dura overlying the tonsils is opened and a patch is sewn to expand the space, similar to letting out the waistband on a pair of pants. The goals of surgery are to stop or control the progression of symptoms caused by tonsillar herniation, to relieve compression of the brainstem and spinal cord, and to restore the normal flow of cerebrospinal fluid (CSF). The surgery takes about 2 to 3 hours and recovery in the hospital usually lasts 2 to 4 days. - http://www.mayfieldchiaricenter.com/chiari_surgery.php#sthash.HaUlx...
BUT if this is done on an certain patients (esp EDS but others, too) the brain simply falls again, or other problems occur because the surgeon didn't do EVERYTHING that is really needed to ensure success.
It is telling that the clinic above states the surgery takes 2-3 hours. My DD's Chiari surgery took almost 9 hours!! (in surgery!) Mine took 7 hours. (I wasn't out there waiting during mine :)).
The actual cause of the problem needs to be fixed to ensure success. Only a FEW U.S. SURGEONS do this.
************************************************************************
Dr. Fraser Henderson was first to figure out what to do & how to do it right. (and it involves a plate in the skull).
If the operation is performed correctly, your daughter should NOT need any more surgeries for this issue --- EVER.
SO PLEASE---
If another surgeon EVER says she needs another surgery or she worsens, PLEASE consult with one of following doctors
- Dr. Fraser Henderson only sees pediatrics in special circumstances, BUT I'm sure he would see your DD. Just explain the situation to them on the phone. If you need help getting to or staying in Maryland, or anything, please contact me and I will help or find someone who can. ----------------------------------------------------------------------------------------------------------------------------------------------
- Dr. Gary Tye, 417 N 11th St, Richmond, VA 23298 (804) 827-4080 (Office). Dr Henderson is sending pediatric patients to Dr. Tye and I have heard many success stories re: his operations. ----------------------------------------------------------------------------------------------------------------------------------------------
- A specific neurosurgeon at Georgetown - who I can't remember the name of now, but Dr. Henderson is also sending patients to him and I know of one successful surgery (personally). You can ask Dr. Henderson or I can find out for you later.
I wish you and your daughter the very best. I hope she recovers well.
If you just need someone to talk to (my daughter had major health issues) or need info, please message me.
You both are be in my thoughts and prayers.
I'm sharing this info for Storyclan & any readers, to try help re: the multiple surgery issue.
Dr. H has fewer problems & better outcomes for many reasons. I assume the Dr's I listed above operate similar to Dr. H since he refers his patients to them.
small incision
Post brain surgery, I had a 1-2 inch incision closed w/ steri strips(!!!) high on back neck.
Certain methods (small incision, operate slowly, carefully, etc) reduce infection, improves healing & overall outcomes; cutting carefully reduces/prevents excessive (or even average) scar tissue.
To CORRECT underlying problem Dr. H:
- took bone graft (DD: rib; me: piece of hip)
- opened base of the skull (like the other surgeons do)
- "repositioned" my head on my neck
- put in a plate,screws & bone (thru TINY incision) to keep my head & neck in place
- stabilized upper neck vertebrae (c1, c2)
***(Dr. H doesn't include c3 after he found it wasn't helpful)
So glad to hear your daughter is doing well post op, she deserves it and so do you. I had asked about the plate because, in my own research before my decompression, I spent a lot of time reading about the different approaches surgeons take. Although I cannot site the articles or who wrote them, I have read that some surgeons place a titanium plate at the back of the skull to prevent scarring from binding up at the base of the skull, creating a shortage if space where it was intended to create an opening of space. Now, I’m am an adult and I did not read theses things in reference to pediatric cases, and I certainly do not consider myself an expert on the subject. I also know that not all surgeons use the plate and only they can site the reasons why, I just thought of this while I was reading about your daughters scarring. Please continue to post about how she is doing and I’ll continue to send positive thoughts your way.
Jenn
jcdemar, I second everything you said.
Hi how are you. Just wondering why she had four decompressions? I have had one but my symptoms are all back again and back to how i was before surgery. I had a forman maganum decompression. i have another appointment in a couple of weeks and yeah i just trying to find information so i can take with me. It is so fustrating.
After her 1st one she never got better and we went back in and she had fluid on the inside of her cerebellum. They didn’t know how it got there but it wasn’t there before the surgery so they went back in and instead of using the patch they used her own tissue. Everything was fine for about 8 years and she started having headaches again so we went back to the Dr and he said that it could be scare tissue built up but the only way to know was to have surgery so we decided to try and see if medication would get rid of the headaches. After a year and a half and no luck and her back getting worse(She has scoliosis because of the Chiari) the Dr decided we needed to have surgery. Glad we did cause he said there was so much scare tissue and it was almost as hard as bone. He was shocked. Well that was back in October and she went in July 2nd to follow up with her Orthopedic Dr and her back is now a 43% curve so we were headed to have that fixed when we did an MRI and found that the syrinx in her spine had tripled in size and there was now a cyst on her cerebellum. So didn’t do back surgery ended up doing brain surgery again. The Dr showed her images to other Drs cause they were all just amazed how this could even happen. There was also more scare tissue building up again since her surgery on October 31st and this one was July 24th. I really hope you don’t have to go through another surgery. It sucks and my daughter still has to have back surgery. Sorry this is so long and it’s only half of what all she has been through. Her recoveries have had some strange things happen like not being able to feel her right side after one.
Stephanie Allen said:
Hi how are you. Just wondering why she had four decompressions? I have had one but my symptoms are all back again and back to how i was before surgery. I had a forman maganum decompression. i have another appointment in a couple of weeks and yeah i just trying to find information so i can take with me. It is so fustrating.