First decompression not a success, need another surgery, scared!

General
1

Hi all! I'm 7 months post op and I still feel terrible. Head still sore and tender @incision, joints are stiff, left side stilll a little numb, left shoulder and elbow frozen, bells palsy since Feb. 2011 still terrible, ears ringing, headaches and pressure still there.

My surgeon who performed the surgery has been very dismissive to my concerns about my recup. All I keep hearing is "this is all normal", "I told you this surgery is extensive and will take time to heal". I get all that, but, well.....I know I feel something isn't quite right.

So....I took matters into my own hands and went to see another neurosurgeon for her opinion on my recovery. I went this past week. First let me say, I was very impressed with this doctor. She listened, she truly listened, she cared, hung on every word I said. Most importantly, she is a true expert in Chiari!! She knows everything about it!! I actually had an intelligent conversation with a doctor, it was so awesome, surprising and so emotional at the same time.

After examining me, talking with me and looking at my latest brain MRI, she concluded that my 1st surgery was not a success. I wasn't decompressed enough and I have a large amount of cerebral spinal fluid build up from a leak (aka pseudo menningocele) putting pressure on my brainstem. I had a laminectomy & that looks fine, but the hole made via craniectomy is too small. I virtually still have no room for csf flow. Crazy stuff!! I knew I wasn't feeling well and no one would listen. She is recommending a 2nd brain decompression surgery.

I'm scared and just so upset right now. Part of me says I'm NOW in good hands and part of me says who's telling the truth, my current surgeon or my new surgeon?? Definitely was impressed with this doctor, but I am going to try and find other NS's for other opinions to confirm her findings. Want to feel better, but not going to be hasty and rush into anything.

Need prayers and any kind of positive feedback. How common is a 2nd decompression?

Thank you for reading (I know it's long, sorry!) Just freaking right now. The mere thoughts of going through this surgery again makes me cringe.

:( Christine

2

Hi Beeba, oh my goodness, we're twins!! Thank you so much for your reply, I appreciate it. In my case, the dura was opened, but he made no extra space and when it was closed up, that's where the leak started. I'm crazed about all this. Taking one step at a time.



Beeba said:

Ps the reason I am having the second surgery is because the dr didn't open the dura and put a patch. As a result there is no extra room for expansion. Pretty similar cases huh?
3

Christine,

I will pray for you. I promise. If it were me I would probably get a third consult. I am sure your second NS is correct, but before I went through surgery and recovery again......I would have to make sure it was necessary beyond a shadow of doubt. Please know though I had a horrible experience with my Decompression, Crainectomy & Laminectomies C1-C6 surgeries. (All at once) I am not trying to be negative. I am so sorry you are having horrible symptoms.

4

Feel that same way, skeptical for sure. However, I can't go through life like this, I'm miserable!! Good luck to you next Friday. My prayers are with you and I'm so proud of your strength to go forward with the surgery.



Beeba said:

Christine, this sucks doesn't it?!?!? You go into the first one so hopeful then BAM!! You are sicker than before and now in bad pain on top of everything. I was very resolute in my decision the first time being that I thought my head was going to POP and I couldn't stop throwing up. There really was no choice for me. This time I am basically functioning and I do have some relatively good times. But it just looks like such a long life feeling this way. And to find out that almost everything that I went through after surgery was because he didn't do it right the first time is so disheartening. They were more the effects of the chiari than the surgery. I went back to the hospital so many times and my ns never even came to evaluate things. He just said I needed to stop sitting around and get back to life. Does anyone allow a dr to do this to them without the hope of returning to a normal life????? Of course that was what I wanted to do and the fact that I couldn't was so discouraging. I am happy that I am not as bad as so many but with that being said being on the fence really makes it hard to know what is right. There are so many symptoms,headache,neck aches,racing heart but I have to say for me it is the overwhelming fatigue. I have been tired before but now it feels like I am carrying 100lbs extra all the time. To have to sit and rest after walking across the room is my motivation. I have to hope that with the right surgeon who knows about this that my result will be better - also if this is my life - I need to feel that I did everything I could before I have to sit my life out on the sidelines. I have read everything I can find, watched videos, listen to experts but the most powerful thing I heard was from dr Ellenbogen(sp?) where he said if you are still super sick it is either you had too much surgery or not enough. I made the appointment that day and it was exactly that - not enough. It will really stink if I go through this all again and have no different result but it is a gamble I have to take because I want some semblance of a normal life again. Please let me know what you decide - and if you have some sort of insight I haven't thought of please share it with me. I think when you go in the second time you are far more skeptical about what your results will be. I hope I am pleasant,y surprised. My surgery is next Friday I will be sure to let you know from a more experienced point of view. Good luck to both of us and everyone else on here!!
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Dear Christine....

I am so sorry that you are going thru all this. However it does sound like this new NS is good. I don't blame you for wanting yet another opinion. Please know I am here and that you are in thought and prayer.

Dear Beeba....You are getting ready for surgery on Friday...sending you thoughts and many prayers. Pls keep us updated, ok???

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I am thinking about & praying for both of you. Just really sick today .....Sorry

Tracu Z.

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SUSAN, THANK YOU SO MUCH FOR SHARING YOUR REMARKABLE STORY WITH US. I AM MORE THAN STUNNED AND AMAZED! I'M SO SORRY YOU HAD TO ENDURE SO MUCH PAIN AND SO MUCH FEAR. SCARY STUFF YOU WENT THROUGH. YOU'RE SO BRAVE, YOU'RE MY HERO!! I SURE HOPE ALL IS OK WITH THE LATEST BUMP ON THE NOGGIN. THAT COULDN'T
HAPPEN TWICE, OMG!! LOL YOU POOR THING. PLEASE LET US KNOW HOW YOU ARE.

ALL MY BEST WISHES,

CHRISTINE XXOO
Susan J said:

Christine and Beeba,

I had my first decompression surgery in Feb 2010. I didn't know what recovery was supposed to feel like so I went along for the ride when I was told that everything looked great. I was told the swelling and feeling of pressure at the back of my head was normal. I had relief for the 3-4 weeks, but then started feeling worse again. The day I was supposed to return to work half day was about 8 weeks post op. I woke up that morning and just couldn't go. I knew in my heart that something was wrong. I called the doctor and I got the run around. I passed the phone to my mom and she "bullied" the doctor into faxing an MRI script to the imaging place I used. I am lucky that my cousin is the business manager to the imaging place and he got me in that night at 6:30 pm. I did the scan and left. My cousin called about 10 minutes after leaving saying that his radiologist was on the phone with the hospital to immediately admit me to through the ER for possible surgery. I was told then to hang up and the on call Doctor would be calling me. All in all, this is the scariest moment out of chiari related events. I had a very large psuedomenegeocele that was dangerously close to causing serious damage. I was told that had I gone home or not got the MRI that I could have had a stroke, seizure or died. I was admitted straight to ICU and they decided to wait until morning for my surgeon to come on duty. Morning turned into afternoon and at 5:30 pm the following day the doctor came to take me for surgery. They had taken another scan and the doctor took a look... at the same time the nurses were preparing me to go done to the OR. The back of my head is bulgng out about 3 inches at this point. The doctor came in told my mom and sister that there wasn't time to go to the OR. They kicked my mom and sister out and put some extra pain killer in my IV. I was told if I didn't fight them they wouldn't restrain me. I was told to lay on my side and someone held my legs and someone held my arms. They then stuck in a very long needle and drained 4 ounces of CSF fluid out. I was told this wasn't even a 1/3 of what was in my head. I was also told that I had psuedo tumor cerebri and hydrocephelus. They pressure wrapped my head and I stayed in the ICU for a total of 5 days. I was sent home with the pressure wrap. I went to the doctor a week later. I was told to take the wrap off the night before. He could visually see the fluid building out again. I was told I needed a right VP shunt.

I was told that the psuedomengeocele would not heal on its own. I had the shunt put in April 2010. I still didn't feel right. I went back to the the doctor a couple of times and even went to the ER. I was told every time that the doctor did his job "flawlessly and now it was up to my body". I had a very difficult time getting a second opinion. It took almost 6 months. I saw another doctor who agreed to see me on a personal favor for my primary care doctor. I had to agree to not use his name for complicated reasons. He found a number of things wrong. First he didtn't think that I ever needed the shunt. He thought that I needed to have the decompression revision. Second the shunt had been placed in the wrong angle into the wrong portion of the brain. He gave me some phrases to say to my original doctor and basically said because he broke me, he had to fix me. Needless to say this has been the most frustration, scary event I hope to ever face.

I did call back to my original doctor. Lucky for me he was on vacation for 4 weeks. I was passed off to a fellow that was there to train in aneurysms. He was the best thingt that could have ever happen to me. My first appointment, he was professional and asked a lot of questions. He changed the setting of my shunt and said to call him on Monday (this was Thursday). I called him and it had been a miserable weekned. This is when I fell in love with my NS. He validated all of my concerns and confirmed that I may not have needed the shunt but now he had to deal with that first. He felt strongly that the shunt had completely malfunctioned because it was also sucking in white brain matter. He order a lumbar puncture to check for my open pressure--which is was really low. This was on Thursday. He was out of state at a conference but was calling the shots from St. Louis. I didn't know whether to be appreciative that finally a doctor was listening or scared that he was concerned enough to be checking in from St. Louis. I had a follow up appointment on Monday. He informed that he had scheduled surgery for the next day. Talk about fast. He did the shunt revision and found that the shunt in my head did not match my records. The tubing was split. He put in a new shunt and fixed the tubing. He confirmed that he catheter of the shunt can never come out or it will kill me. He also added a second devise called a shunt assistor to alleviate the pressure it was putting on the misplaced catheter that was sucking in parts of my brain that shouldn't be going anywhere. A month later he did the decompression revision in March 2011. He ligated the shunt so that it is turned off, but I have to keep the shunt because the risks are to high if I take it out. I had a lumbar drain in for 5 days. He checked my pressure every day. He confirmed that I didn't have psuedo tumor cerbri. The psuedomenegoecele is gone as is the hydrocephelus.

The point of this very long response is not to scare you. I wish that someone had been willing to do the decompression revision. It was very clear and evident that the patch that was put in was defective 8 weeks post op. I had a CSF leak and psuedomenegecele for an entire year. The second doctor cut a little more skull out also to make more room. He put in a bovine patch instead of the synthetic type that was there before. The recovery for the decompression revision was so different. I had no pressure. I had surgery on Monday and went home on a Friday. I didn't even need pain meds very often. I was back to work half days in only 4 weeks. I felt really good after this surgery. It was the first time in a very long time in which I could say I felt good.

All my symptoms were gone except headaches. I have a very strong family history of migraines. It took a couple months to get those under control. There was definite difference between my migraines and the horrible headaches due to CSF leak, psuedomengeocele and hydrocephelus. I actually got to a point where I went an entire month with no headache, not pain, no numbness, nothing!!!!

I have another psuedomengeocele, it is due to hitting my head. I was sleeping in a recliner and my boxer decided to get in the chair with me. She made the chair top heavy flipping the chair backwords. I hit the wall and knocked myself out. They believe I have another CSF leak. There has been talk of another posssible surgery...but I'm currently waiting for the doctor to call back. He had me take another MRI. It was sent to him Friday...now I wait for the call.

I do regret the shunt surgeries, but I don't regret the decompression revision.

Wishing both of you best of luck,

Susan J

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Susan,

Once again, thank you. I too have such pressure in my head everyday as well. It's not like anything you can describe to really anyone who doesn't live it. In addition to all the other symptomology I have, the fatigue is sooo intense. Makes me crazy! I actually woke up today with a little energy, but now I'm pooped and back on the couch. I take care of soooo much when the spurts of energy happen because I know when I crash, I'm done!

Beeba, remember I'll be praying and thinking about you Friday. Everything will go okay. Remember what you ultimate goal is.....feeling better! :) XO PURPLE POWER ON FRIDAY FOR BEEBA AND FOR EVERYONE ON THIS SITE. YOU'RE ALL SO AMAZING!!



Susan J said:

Your words are kind. I feel anything but brave. I truly don't regret the second decompression. I actually had a chance to know what it feels like to feel good. I think the hardest symptom to explain to others is the dang pressure that builds in my head. Most people have experienced nausea, pain, headaches, even that pins and needle feeling of when your foot goes to sleep. How many people without CM have experienced that pressure sensation? How do you explain it to those around you so that they understand? My mom recalls me describing headaches as having a sinus headache at the back of my head when I was only 11-12 years old. I was 29 when I was diagnosed and 3 months later I had surgery.

Finding this website has brought the most validation that I'm NOT going crazy. It is such a comfortt to know that there are other people who know how I feel. I had always had headaches...this is my most debilitating symptom. I have a lot of family members that have severe migraine issues. I really think that there are several other family members who probably has CM. My niece, Amanda, goes to the same primary care doctor that I do. He sent her for an MRI shortly after getting my diagnosis and finding out I needed surgery. I knew what the results were going to be. I only hope that everything I have gone through may guide us in the right direction for getting her treatement. The NS didn't think she was surgical yet. Her headaches are quickly getting worse. We come from a family of edcuators. Amanda is a senior in high school, is second in her class, and is taking college classes at the same time. She will almost have her Associates degree by the time she graduates from high school in May. Her headaches are getting increasingly worse. She's missing 6-10 days of school a month. Her dad and mom are teachers, I'm a teacher, her brother is working as a long term sub (he will have his degree by August), and our uncle is the Superintendent--all in the same small school district. The school has been great about her being absent, but I have to think that if so many of our family weren't employed by the school district...they wouldn't be so nice about it. She couldn't bring herself to go to the hospital after seeing a picture of my head after the first surgery. She wouldn't even come around. She is in such denial and I can't blame her. She has a standard response of "I'm fine" when anyone asks her how she feels. She won't go to the doctor. She had to go last week for a prescription refill. Our doctor lectured her strongly about how she needs to be honest with him so he can help her find something that might work for her headaches.. He sees her at church every Sunday and can see how she feels because there is no hiding the headaches. Did I forget to mention that severe stubborness also is a big problem in my family!!

Sorry... I didn't mean to write a book again. I will be praying that your doctor will use every ounce of knowledge he has to make the right decision for you and that pain free days will soon be in your future.

Susan J

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Christine,

It sounds like you already know the answer as to which NS to believe. If the first one has been that dismissive I would not go back and allow him to do that to you again. One big lesson I have learned after going through this for 16 years is that doctors are people first and foremost. They come to every situation with their own personal beliefs, prejudices, experiences ect...on top of their medical training. Your surgeon does not and will not admit to mistakes. Surgeons really want to deal with only people asleep on their table. If you find one like the second one that you went to that will take the time to explain things, help you with your fears and reservations walk you through the pros and cons ect then you have a very rare NS. I am going through the same thing. I had my surgery in 2001 and I have never really felt better other than some minor changes. I was with a nuerologist for 12 years who was very dismissive and condescending. I suffered through and instead of looking for anothere doctor I thought I could chnge mine. I thought eventually she would believe me and really help me find answers. That never happened and I finally gave up and spent a year going to doctor after doctor having one awful experies after another until I found a wonderful NS who also listened to me and validated all my concerns and symptoms.She ordered a Cine MRI for me right away with alot of other tests. I had been begging fot a CIne MRI for 5+ years. It showed that I have a complete blockage at the site C2 of my last surgery and it's probably been blocked since 2003. I am completely disabled and spend 85% of my time in bed. I also found a great Primary doctor who doesn't know much about Chiari but she takes my symptoms and concerns seriously. I've never had doctors like this. It was extremely hard and humilating going to so many doctors but the pay off has been worth it.

I am also terrified of having the surgery again. It prompted me to seek out others to talk to on here but I really like my NS and believe she knows what she's talking about. I feel like I wasted so much time suffering in silence and that makes me angry. I have hpoes that this surgery will give me some quality of life back so I can be a better wife and mother. I live in Mass but I am going to have my surgery in RI I hope in the next 2 months. I scared to death but eager to get it over with. I am sending prayers and good energy your way.

Wendy