Update from NS--Surgery Date Set

[rach444]

Hi,

I just wanted to give an update on my NS appointment today.  Both he and the neurologist agree that my symptoms are related to the chiari (6mm), diminished csf flow and overcrowding, so the NS scheduled me for May 18th for my decompression surgery.  I'm relieved to have a course of action in hand, but I'm scared to death of the recovery from the surgery. I've been lucky that my trial with this has been shorter than most...I was diagnosed at the beginning of March, by a fluke MRI to rule out stroke in the ER. But, my symptoms came on like a train that hasn't stopped, so I will be happy when I can walk without a limp, have my legs and arms quit jerking randomly, and stop this God-awful tingling, numbness, stinging mess that has me wanting to scream! :-) I am ready to go back to being an active 35 year old mom, who can go for runs, play with her kids, and have a career...I'm ready for my life to come back!

So, I'll be a Duke zipperhead come mid-May....scared, but excited there is an end in sight.

This forum has been a blessing to me...thank you so much for all of your support. Selma...you have been an angel.

Rachel

[pamk5]

I am glad that you feel comfortable and have done your research.  We will pray for each other.  Best wishes to you.  

Pam

[selmaS]

Hi , I am so happy for u that u have a surgery scheduled with a NS that u r comfortable with...that helps with how scared we r...knowing the dr is the right one to take care of us.

Even with that, I was scared...it is normal...trust me....

But be advised, take it slow and do not expect to have ur life back post op, it can take up to 2 yrs to heal completely and not all symptoms may be relieved.

I am trying to have u go in with eyes open....and u need to be relaxed. Read some of the journals posted by the members here on their surgical experiences...I have mine posted and I hope it will give insight that u r not alone in how u feel.

Again, I am happy for u.....and pray for u the best in surgical  outcomes and recovery!!

  "selma"

[rach444]

Hi Pam,

Thanks for your concern. It means a lot. Dr. Grossi is chief of neurosurgery at Duke Raleigh hospital.  I originally wanted Dr. Grant at the University,Durham location, but it was hurdles to get to him. Dr. Davenport, my NL, was recommended to me as a Chiari specialist and he referred me to Dr. Grossi. I asked Dr. Grossi how many chiairi's he does and he told me at least 2 a month, which basically is one every other week.  He also volunteered that his leakage rate for csf is 3-5% which, he said is the national average. He did tell me that he wasn't sure that the surgery would cure all of my symptoms, but I did warrant the surgery based on the size of my herniation and the level of disrupted csf flow.  He was very open and honest about the recovery and the pain I would feel and how hard the first 4 weeks would be.  I felt like he gave me an accurate and forthright picture. Dr. Grossi was very concerned with my myleconic jerks and he was afraid that the surgery may not remedy those; however, the NL thinks that they are directly related to the chiari as misfires. I asked Dr. Grossi all of the questions that I learned off of the forum and my research and he answered them accurately and honestly, even when they weren't in my favor.  I have faith that he is the right doctor for me. I researched him through some contacts I made with the chiari and syngo... foundation of NC, and he came highly recommended.  Thanks for all of your well wishes...it truly means so much to me that all of us are virtually strangers but still share a common bond and concern for each other.  

Best of luck to you and your surgery with Dr. Rosner...I know you are relieved to finally have answers.

Rachel

[pamk5]

Hey and congrats!  Did you ask how many CM surgeries Dr Grossi has done?  Does he specialize in CM?  The teaching hospitals can be good but not always the best.  It is amazing you got them both to agree.  It concerns me somewhat because the Chiari Institute says that 49% of their surgeries are redos from inexperienced surgeons.  That is the reason that I chose a pioneer in the field to do mine.  I am not wanting to alarm you ... but possibly check his experience out.  I did check his profile and he doesnt mention Chiari as an interest.  Did he tell you that the surgery was to stop progression and hopefully alleviate symptoms?  Did he tell you that there were no guarantees and that surgery is not a cure?  

I was seeing a NS at Wake Forest and he told me that surgery would cure me.... I ran the other way!  Sorry if I made you second guess... but it isnt a bad idea to get several opinions about this surgery.  Especiallly if you arent sure of their level of experience. The concerns are if too much bone is removed the brain can slump and require more surgery.  If too little is taken out then the decompression can be inadequate and more surgery is required.  Also the chance of leaks, etc.  They are much less in experienced hands.  

Sorry I know that you didnt ask my opinion but I just couldnt not make sure you knew there was a difference between a NS who sees CM occasionallyy and a NS who devotes his practice to this disease.   Good luck to you!

Pam

[Mazie1209]

Happy for u! Being terrified of the recovery is one of my main reasons/issues for having trouble deciding if I should go through with it! Keep venting your thoughts and fears, we are here for you!
Mazie :o)

[rach444]

Thanks for your warm thoughts, Niki.  My docs are at Duke in North Carolina...Dr. Davenport is the NL and Dr. Grossi is the NS.  We've been very impressed with both. I got the original run around with my local NL (thought Chiari was cause) and NS (thought issue was autoimmune) in Pinehurst, and then I said forget it....I'm going to Duke....I figured a research hospital would have more insight and experience with seeing the "atypical and the unusual"....and I think I was right.

Best of luck to you....I'll say prayers and send positive thoughts your way!

Rachel

[niki3350]

p.s congrats on getting a NS and NL to agree you are very lucky keep hold of these 2 honey.

Wow im sending my scans over to your ns and nl mine are in battle like you im 6mm with diminished posterior flow who took a downhill turn in August with symptoms but still fighting for answers.

But reading your post gives me hope!!!!!!
Hugs
Niki x x

[niki3350]

Great news that they are sorting you and that you will be able to recoup in the summer months.

I guess being scared is only natural its the unknown but just hold onto that thought that you can get your life back.

Hugs
Niki x x x