So after the latest round of MRI's, and visit to my NS, I made the decision to go for decompression surgery. Needless to say, I am SO SCARED! But my symptoms are getting worse, and there are just too many days when I can't participate in my own life! I go in on July 16th, and am crossing my fingers that all goes smoothly (and that I don't chicken out before then!). If anyone has any advice about surgery, what to expect, what to bring to the hospital, etc., please pass it on!
Thank you to everyone for all the shared information here, and all the love and support that can be found here! I do not comment or post often, but I DO read most posts and participate, in spirit, almost daily! Hearing others' stories has really helped, and it makes me feel better just knowing that there are people that truly understand what I'm going through.
Best Wishes To All!
Jenny
P.S. If there is anyone in the Upstate New York area looking for a GREAT nuerosurgeon, mine is Dr. Edward Vates. He is wonderful! He is not a Chiari "specialist", but has dealt with many Chiari cases, and definitely believes that your symptoms are more important and more indicative of treatment than what your MRI may/may not show. Here is a link to some info on him:
I know CM Decompression Surgery is scary to think about & you have a lot of emotions & thoughts that are wrapped around your decision. You must trust you made the best decision for yourself. I truly believe that Chiarians are the toughest people on earth. We have had to be strong in every way. Please take a day or two and process the whole idea of having CM surgery and I will send you a message with some things I found helped me pre & post op. When it comes down to it, we are stronger than we ever think possible and do what we think we are incapable of at the time most needed.
We have many lists of what to expect and advice & items to bring for surgery. Our search option is not working currently and has been reported to Ning. I will keep checking and load you up with information from past Discussions on these topics.
Thank you for the great NS recommendation !! Not all Fabulous NS work specifically with CM patients and that is a very important thing to remember. My NS is an overall experienced NS and incredible also. I wish other Chiarians would consider all NS's when trying to find a compatible NS. We usually consider a NS a CM expert if they treat 200 Chiarians a year. They might not label themselves as a CM Specialist but a Neurological Specialist that treats CM's. Which most do.They can be found in every area of the US and some nations. We do know NS's that treat many Chiarians. Some are great some are not. Chiarians may also have additional neurosurgical issues. I recommend everyone should be comfortable with their chosen NS's total capabilities, knowledge and experience.
wow after a lot of consideration I have scheduled my surgery for July 17th. We will be right after each other!!!!! I know what you mean though. I am so extremely terrified! I am really hoping I don't back out or push it out until August. My symptoms are just getting so much worse that I never expected things to progress so quickly. Please keep me up to date on you. Since you are going in before me, it would be good to hear form you :)
My biggest piece of advice is to always have someone with you who can take notes or be there as a second pair of ears. You will be tired, maybe a little confused from anesthesia or pain meds and having someone with you is if great help. Don’t be afraid to ask for what you need - specific food, pain meds, a walk, etc. and don’t be afraid to tell people “no” - “No, I’m not ready to do that” “No, I don’t feel good” and don’t be afraid to say “YES!” - “Yes, I need help” “Yes, I would live it if you brought a meal” “you want to clean my house for me? YES!”
Hi Jenny-
I live in Buffalo and had surgery by Dr. Kevin Gibbons of UBNS the end of Jan this year. He also is very gifted and I was blessed to cross his path. I have also suffered terribly terrifying debilitating symptoms since 2011 and continue to suffer undiagnosed until 2012 until finally visiting the wonderful Dr.Bolognese of the Chiari Institute on Long Island, after many many misdiagnoses including ‘its all in my head’ (why yes it is …LITERALLY genious…thank you!). I had to wait another year to find a ns in network willing to touch me since TCI couldn’t gain approval. Long story short, by the time surgery came I cried tears of joy because in my mind NOTHING could be worse than what I had already been through and haven’t regretted it for 1 minute. Don’t be afraid…is it a tough recovery? Hell yes! It’s brain surgery…but is it anything you can’t handle? Nope! Some ppl have an instant fix from it…others take longer to heal…having patience is key…something I’ve never been but have been forced to become good at. You’ll be fine
I just had surgery on June 12th. I was scared 2 weeks before but read a book on going into surgery with a positive healing attitude and met with my Pastor who also helped me and I never went into a surgery so at peace. That said- I have a few tips:
Take the pain meds before pain gets out of control. Stay ahead of the pain and you can get up walk, eat etc. Always use stool softners on pain meds. I recommend Sennocot day 1 first night at home and for two weeks- mild gentle laxative. They do not want any straining and this really helped. The steroids the first two weeks give a high and energy be careful not to overdo- very easy. As the steroids are tapered you will feel more uncomfortable and that is normal - adding Advil will help. ( of course all must be discussed with your doctor before you leave hospital). Stomach upset not uncommon. I was given Pepcid but still had some issues and found Tums helped. My Dr has me wash incision 2 x a day and apply neuosporin- my sutures are dissolve able in 1-2 months. I found cute pigtail elastics to keep hair off area first 2 weeks. They told me not to use shampoo on incision as too harsh so I wash my hair with a shower hose to avoid the area. I was instructed and shown neck stetches and started immediately- 5 x a day. I set a reminder on my phone so I get them in, they actually feel good to do- losens it up. I want to have good range of motion when I start to drive again as I travel with my job. Walking helps get things moving and builds strength. I was amazed how weak I felt but I was pretty deconditioned prior to surgery due to symptoms. I wish all of you the very best for your upcoming surgeries!
I just had surgery on June 12th. I was scared 2 weeks before but read a book on going into surgery with a positive healing attitude and met with my Pastor who also helped me and I never went into a surgery so at peace. That said- I have a few tips: Take the pain meds before pain gets out of control. Stay ahead of the pain and you can get up walk, eat etc. Always use stool softners on pain meds. I recommend Sennocot day 1 first night at home and for two weeks- mild gentle laxative. They do not want any straining and this really helped. The steroids the first two weeks give a high and energy be careful not to overdo- very easy. As the steroids are tapered you will feel more uncomfortable and that is normal - adding Advil will help. ( of course all must be discussed with your doctor before you leave hospital). Stomach upset not uncommon. I was given Pepcid but still had some issues and found Tums helped. My Dr has me wash incision 2 x a day and apply neuosporin- my sutures are dissolve able in 1-2 months. I found cute pigtail elastics to keep hair off area first 2 weeks. They told me not to use shampoo on incision as too harsh so I wash my hair with a shower hose to avoid the area. I was instructed and shown neck stetches and started immediately- 5 x a day. I set a reminder on my phone so I get them in, they actually feel good to do- losens it up. I want to have good range of motion when I start to drive again as I travel with my job. Walking helps get things moving and builds strength. I was amazed how weak I felt but I was pretty deconditioned prior to surgery due to symptoms. I wish all of you the very best for your upcoming surgeries!
What was the book you read? I am 2 weeks out and have just about the worst attitude a person could have. I can't stop crying and thinking how my life is over. It's just surgery right? I should be happy they are allowing me to have it.
Jenny I know that the idea of someone cutting your head open is frightening, but breathe deeply and try to stay positive you indicated that you have a great NS and that is important. My grandaughter was 8 years old last year when she went through the CM Decompression Surgery, was I scared of course I was, but I read everything I could get my hands on spoke to others online who also had the surgery or their child did ( I am raising my grandaughter by the way) and took alot of deep breathes and asked the good lord to see her safely through it all, plus prayers as well for her NS and the team. She did great ( by the way the graft that was used to cover the dura when it was cut open , was taken from the back of the scalp just above the other incision made for the surgery. I as well as alot of others highly recommend this method of graft rather than artificial ones. She was in hospital for a total of 5 days, never once threw up, was asking for food to eat by the afternoon of the surgery ( crackers as she was still groggy) so she did fantastic. She also has Syringomyelia, scoliosis, and wears a Boston Brace 16 hrs aday, so she has and continues to go through alot, but she is a great kid. She was back in school two weeks after she returned home ( had a home tutor provided by the school) . Plus we had so many saying prayers for her before, during and after her surgery, She is like my small angel ( only here on earth :) Her NS was a caring, soft spoken man who was not a Chiari Specialist but had great knowledge of it and had done many of these surgerys. I had no idea until all of this happened how few Pediatric Nuerosurgeons are in the United States, I had been told that there are about only 200 in the US. She has been back twice now for checkups and continues to do well , almost a year now since the surgery, she is having a few issues popping up of concern at this point ( her two syrinx in her spine actually got larger after surgery ) so I have requested another MRI with anesthesia of her complete spine just to see if they have increased or hopefully have now started to dissolve, which is what was supposed to happen with the surgery. She is starting to have headaches again in the back of her head, as yet not as frequently as before, but we are still hopeful that these issues are only temporary and can be resolved. If I had it to do over would I have said yes to the surgery, most certainly. I sat her down prior to going to the hospital for the surgery and we discussed ( within reason for her age) what would happen, how she might feel, that she would not be awake for any of this, that I would be by her side until she fell asleep ( all garbed up and "Looking funny" as she said ) they than removed the mask long enough for me to kiss her and escorted me to the waiting area, 4 hours later she was done and in Pediatric ICU, later that evening she and I were moved to CHAD ( the pediatric unit ) at Dartmouth. From there we were moved to the other end of the unit where we stayed until we left the hospital. The care she was given, the level of compassion shown to her and I was excellent ( I did neglect to mention that when her surgery was over the NS joined us in a conference room to discuss how everything went ( I held my breath, but the smile on his face told me she was fine ) and in detail he said what he had found, what he did and that everything had gone as he hoped ( as he told us prior to surgery ) with any surgery that involves the brain, it is serious and there can be complications, but in her case all went well. And I had my angel back again :) Please know that Chiarians are true warriors and though the journey is long and sometimes hard, you all our surrounded by others that care......prayers being sent your way, take care and keep us up to date on your journey ok.
The book I read: “Hope, Faith, & Healing” How your outlook can help you fight disease. Publications International. It is an old book but gave me what I needed… Best wishes to you!
Hello all! Two weeks out from my surgery and the recovery process is slow but I am feeling a lot better. My doctor. Dr Hou. Was amazing. I am still in a bit of pain and I think I have more headaches than I did before but that could just be the meds and stress and who knows what else.
