I am scheduled for my second decompression on July 9th. This is due to brain slumping. Has anyone else had or is having this problem. I was not aware my brain could move after the initial surgery.
I have not but I have been really feeling bad lately and need to get an MRI and see the dr.
When did you have your first surgery? I thought once the decompression was done there would be additional surgeries needed.
I had to have a second decompression surgery. I had my first done in 2011. He said he did a great job and there was nothing he could do for me. He said I could do more physical therapy, get a nerve block or just live with it. I was getting headaches like before the surgery, my head felt like it was going to fall off, my neck felt weak and I just didn't feel good. I knew something was wrong. I ended up going to so many surgeons in the Baltimore/ Washington D.C. area. I had so many MRI's and tests to make sure I didn't have a spinal fluid or intracranial hypertension. I even tried wearing a cervical collar. It made the symptoms even worse. The surgeons I saw said that there was something wrong, but it would require exploratory surgery and they didn't want to risk it. So one of my primary doctors sent me to Wisconsin to see Dr. Heffez. He was a bit hesitant about doing surgery, but after talking my doctor back in Baltimore, he decided to take the chance. He said the surgery was well neeeded. Half my brain was slumping due to the first surgery being done at an angle, I had a lot of adhesions and scar tissue. He fixed the mistakes from the first surgeon and put in a mesh plate. The surgery helped a lot. But now I am having issues with bulging disc's at c4-5 and c5-6. Some doctors think I could have Ehlers Danlos and that the 2 brain surgeries have shifted the discs. I am only 25, so they can't find any other explanation for this happening so young. I hope your surgery helps. I am here if you have any other questions or just need to talk. I know how scary surgery can be.
I had my 3rd decompression surgery in 2012 by Dr Heffez also. I felt good for awhile but am now having horrible headaches dizziness numbness in my arms hands and recently my legs. I have urinary incontinence every time I cough or sneeze. Dr Heffez tells me theres nothing more to do so I am seeking advice at Mayo Clinic and Chiari Institute. Both will be a burden to get to since im in idaho but as a 29yr old mother of a high speed 6yr I already feel like a burden. Im just greatful to have such a great husband
I have read that there is a bone that often gets smashed in chiari patients. It cause lots of dizziness and numbness in extremities. i wonder if this my be my problem but with my metal plate we cant be sure with mri. Ill research it more and post more abt it
My son had to have a second decompression surgery 8 mos after the first. His neurosurgeon said it was because the syrinx had not shrunk and that he had scar tissue build up and boney growth. His last decompression was January 2012. So far he hasn't needed another and he still has a syrinx but it has shrunk a lot. Good luck with your second surgery!
jlutrzyk, We had my son's surgeries done at the Hershey Medical Center in Hershey PA when we were stationed in Indian Head Maryland. We ended up just staying with his Neurosurgeon in Hershey which is great btw so if you want a second opinion I would try him...Dr Mark Iantosca.
jlutrzyk said:
I had to have a second decompression surgery. I had my first done in 2011. He said he did a great job and there was nothing he could do for me. He said I could do more physical therapy, get a nerve block or just live with it. I was getting headaches like before the surgery, my head felt like it was going to fall off, my neck felt weak and I just didn't feel good. I knew something was wrong. I ended up going to so many surgeons in the Baltimore/ Washington D.C. area. I had so many MRI's and tests to make sure I didn't have a spinal fluid or intracranial hypertension. I even tried wearing a cervical collar. It made the symptoms even worse. The surgeons I saw said that there was something wrong, but it would require exploratory surgery and they didn't want to risk it. So one of my primary doctors sent me to Wisconsin to see Dr. Heffez. He was a bit hesitant about doing surgery, but after talking my doctor back in Baltimore, he decided to take the chance. He said the surgery was well neeeded. Half my brain was slumping due to the first surgery being done at an angle, I had a lot of adhesions and scar tissue. He fixed the mistakes from the first surgeon and put in a mesh plate. The surgery helped a lot. But now I am having issues with bulging disc's at c4-5 and c5-6. Some doctors think I could have Ehlers Danlos and that the 2 brain surgeries have shifted the discs. I am only 25, so they can't find any other explanation for this happening so young. I hope your surgery helps. I am here if you have any other questions or just need to talk. I know how scary surgery can be.
I had a corpectomy with c5 to c7 fusion on 2013
My first decompression was on 2012. I felt alot better even went back to work full time, i had too. I helped a family member shortly after my neck surgery. I lifted them a few times. I was not thinking at the time. they checked out my neck no change but I continued to have more pain and vertigo. I got a new n and she ordered new mri. My brain had slumped over a centimeter, went back to ns, doctors can be so annoying at times. He said i need a second decompression to hold it in place and stop further damage. I had been complaining that something was wrong. They don’t always listen. Thsnk ypu for your input and I hope everything goes well with you. I am 53 now and have had been mis diagnosed for a very long time. I just got approved for disability. I am still in shock. it took a very long time.
I am very glad i found this forum. It makes me feel like I am not alone. all of us are very brave and strong and we will get through these difficult times. Thanks to all of you for your thoughts.
what is decompression surgery?
Hi there kameo, I see you are very new to your diagnosis so rather than try to explain myself I'm going to point you towards the section of our site which has some great information about Chiari and it's treatment and surgery that you can take a look at. It's in our Chiari Info For Members tab towards the top of the page but you can follow this link for ease.
Hope this helps explain. Just shout if you need any more help and we can get your questions set up in your own discussion.
All the best, Jules
Hi Sherry, sorry about the delay in responding, not having a good week. in my case I have to have another decompression, I am not sure if it was the situation where I assisted a family member and strained my self or if it was an accumulation of the other neck surgery. I will try to dtau current on here.
With decompressions additional surgeries may be necessary in order to help with relieving but not curing the symptoms. I knew a person who needs to have decompressions every like 5-10 yrs since his so ok bad. This is rarw but could be needed.
Hi College, I feel for your friend. I plan on this being my last one. I intend on behaving and really allowing my self to properly heal. I no longer have to work thank goodness.
Hi, I had my decompression in October 2012, had fantastic results until I started having the same symptoms last year and getting dizzy, so I went thru a huge work up thinking it was my eyes or inner ears, nope they were fine, so I had no clue, have still had headaches but definitely better after the surgery. Last yr they came back with a vengeance, so my doc just upped my tramadol I was good with that, but the dizziness was getting worse and I thought my head was going to explode. My neurologist sent me to get rechecked w my neurosurgeon, so I had my Cine MRI, and low and behold my CSF isn’t flowing well and My brain has slumped down. Now I’m scheduled for another decompression with a dural patch on May 26th.
The last one was scary enough, this time they’re actually going into my brain, so I’m scared to death thinking of stroke, etc… Doc said this should work out great and I have all the confidence in him as he did a great job on the last one and I was pretty much pain free for about 3 yrs, so here’s hoping this one will be the same! I’m having it @ Dartmouth Hitchcock in Lebanon NH, great hospital!
Hello everyone, sorry about the delay. I had my second decompression with mesh on July 2015. I came out of the surgery just fine. This one took over 5 hours, so let your family know it may be a while longer than your first. I went straight into the NSICU, to be honest the pain was more than the last one, and I have a high pain tolerance. My doctor knowing this, put me on a pain pump to manage myself, it did wonders. I had to lay flat for the first 24 hours. It went by pretty quick, the first day of recovery, I mean, my main concern was my husband and two sons, they have had to go through alot with me. I have recovered, the only thing I will stress to anyone having this, be mellow like they tell you, take it easy, that has always been hard for me to do. I want to get up and do things, clean, take care of my family. They had to threaten to duct tape me to the bed. My Doctor knowing all of this due to my husband and sons telling on my from past surgeries, made sure physical therapy taught me how to use a walker to take home. If they offer you this, take one with you, it was most helpful. I am at 10 months past my surgery, I was doing ok until I fell on the ice on News years day. I didn,t hit my head, so I did not want to go to er, I freak them out here. I am going through test right now, they are worried about my neck, my head looks ok.
I wanted to ask. Did you get another surgery. And if you did. Was it here in jax florida
Hailey said:
I had my 3rd decompression surgery in 2012 by Dr Heffez also. I felt good for awhile but am now having horrible headaches dizziness numbness in my arms hands and recently my legs. I have urinary incontinence every time I cough or sneeze. Dr Heffez tells me theres nothing more to do so I am seeking advice at Mayo Clinic and Chiari Institute. Both will be a burden to get to since im in idaho but as a 29yr old mother of a high speed 6yr I already feel like a burden. Im just greatful to have such a great husband
Doctors seem to be very good at not listening to patients!! I’ve had this!! First NS did think my tonsils extended that far (7cm). Neurologist sent me on a ton of tests to see if I had something else to blame symptoms on, since mine weren’t that bad 
. After sending me to a Neuroopthalmologist, who told me I had 20/20 Vision and that my other symptoms were “All in my Head,” my Neuro finally sent me to a different NS to get a Cine MRI to check CSF flow. My results said I had a 4cm tonsil on left side and 8cm on right side and CSF flow on right was totally blocked!! Didn’t even know there were two tonsils- one on each side- and the MRI sure didn’t point this out!! So I had surgery June 2. Now some symptoms are back!! 