After being blown off by several surgeons who thought my pseudomeningocele was just an artifact from my decompression surgery, I decided to go see Dr. Heffez at the Wisconsin Chiari Center. He ordered a very detailed MRI of the base of my skull and (Surprise!) you can actually see the hole in my dura patch! I have been convinced all this time that my pseudomeningocele was not just an artifact, but caused by an active leak, and I was right!
Of course, this means that I need a revision surgery. While he is in there, Dr. Heffez also wants to take my right cerebellar tonsil up some more. Might as well get everything done in one shot.
I don't know the date yet, but I was told that they are hoping to get me in before the end of the month. The scheduler is supposed to call me by Friday.
I am so relieved that someone acknowledged that I have an actual complication and that they can fix it. I am also terrified to have surgery again. The pain management on my first surgery was atrocious. I had a detailed conversation with Dr Heffez about my experience and my needs, so I'm hoping that things will go better this time around.
Thanks for all of your support during this debacle!
Sorry that you have been going through all of this...but, thank God you now have a plan of action with a well respected NS!
Please know you are being thought of and prayed for.
Keep posting..let us know if you need support..a friend..anything. Please keep us 'in the loop' as far as how things are going with your surgery plans, ect..
I know exactly how u feel. I suffered for almost a month after my first surgery with the same issue. I could not walk or do anything for myself. The pain and pressure inside my head was like an electric storm going on. It was so bad I could not even lay down long enough to have an MRI done or allow something as simple as a pillow touch my head. I had 2 ER visits the 2nd by ambulance because I was having a seizure and no one would believe me that something was terribly wrong or even tell me what was wrong. Finally at my post op my NS discovered after the ER finally sent him all of my scans told me I had a pseudomeningocele and it needed to be repaired. I had the surgery 9/6/2013 was discharged on 9/9/2013 readmitted 9/10/2013 this time to another hospital due to a serious CSF leak that was so bad I went through 3 towels and 2 shirts by the time I was admitted. I had to have a lumbar drain inserted stat I’m talking I barely had enough time to get the hospital gown on, the CSF was pouring from my incision site like a faucet. I was in the hospital for 7 days on STRICT bed rest. Had to lay flat the first 5 days, day 6 they clamped off my drainage tube and begin to raise me slowly to see if I could tolerate the elevation and to see if I would leak again and develope a train wreck headache. This happened for 24 hours and on day 7 they came in removed the drain because I did EXTREMELY well. After removing the drain they stitched my lower back and I had to walk the halls to see if I would have any complications. I’m happy to say that I was discharged and I continue to do remarkable. It was a long road to get to where I am today but I kept fighting and just refused to give up. My first surgery was 7/12/2013 and I did well with that surgery for about 2.5 wells when things started to go down hill. Before now I lived in a constant painful nightmare after nightmare but it got me to where I am today. I wish you success in your revision surgery and will be praying for you a speedy recovery.
Glad you got answers, even if they aren't the "best" ones, but hopefully after this you will be one of the success stories! I wish I lived closer to there so I could see him!
Oh, thank goodness! I’m so happy someone took the time to get to the bottom it!!! Heffez did my surgery-post op my pain level was so minuscule that when the nurse would come in to ask if I was in pain I would have concentrate to detect any. The pre and post op staff were really great. I’m thinking really positive thoughts for you!
You have no idea how happy it makes me that you had a good post-op experience.
After my last surgery I was in absolute agony and no matter how much I asked they wouldn't change what medications they would give me. They would only give me a set number of pills and if I fell asleep and forgot to ask for them before they wore off they just let me sleep and let my pain management lapse! I felt like I was being tortured.
I really need this experience to be better and everyone who I've talked to who has worked with Dr Heffez has said he has good pain management skills. Hearing it again from you helps : )
Also, they waited to do all the “yuck” stuff after you are under anesthesia (head shave, arterial I’ve, foley) one of the nurses on the unit had a Chiari decompression herself!
I just received your message....You are in very good hands with Dr. Heffez....He has been helping Chiari patients for a long time.... He is very focused and thorough.....It can be very hard to move forward again with another surgery....but it is important to listen to him and as you yourself is the best one to know in your heart what makes sense.....
Don't be afraid......just move forward.... I had two surgeries with Dr. Heffez in 2012...I am forever grateful to him!
Write down all of your questions.....he will help you....
Let me know when you have your surgery....and if you need to know of any places to stay etc...I have been down that path a couple of times....Since I had to travel out of state four times to Milwaukee.....with two surgeries...Everything went well.....Dr. Heffez is excellent!
Keep in touch,
Mary Lou
Even though I am not always responding on this site....I am praying for everyone on this site every day!!!!