Hi all. Had surgery nov 16. Been home one week. Feel a little better each day. Have visiting nurse , PT and OT came to house. Go to see surgeon dec 2 and he reports sutures will
Disolve in six to eight weeks. Fluid flowing well on spinal cord but don’t know however damage is done. It won’t get worse. Go back to my. Dec 15 for another swallow study as wont know if any improvement has been made. I’ve Ben aspirating for years. Balance is a little better and everything wrong is located on my left side. Vision still awful. Close one rue to see without blur but surgeon says edit six weeks to see if improvement shows when brain swelling goes down. After I see neuro eye dr in jan. I look great with exception of the stitches that look like football stitches people don’t understand your not sick but mechanically not able to do things. Grateful for wonderful friends family and husband, hospital stay wad wonderful Andy surgeon and his staff were amazing. I’m in pain still, trying to cut back on the Percocet and Valium as I do t want to become too dependent. Sorry for typos. I’m having a bit of a hard time with it. Will post wed after my first follow up appt. I see pain management dr too to determine if I need another nerve block. I know a few people mentioned they wryr having surgery this month as well and would like to hear how it went. It was my first ever, 51 Yeats old and think I would definitely recommend having it. My Chiari was gigantic. Hope everyone had a wonderful holiday. Keep head up… There’s help out tjeye.

Hi, tomygirl! I'm really happy you had so many wonderful people around you through that time and you're filled with such positive emotions! :)

not to be a downer. but I have never seen a forum where so little people respond to you with support and what they went through. Very disappointed and I think I will search for another more helpful forum. Like I said, my husband has had numerous medical issues and till this day, I am on his forums and they seem to care more about how my chiari surgery went than this one. Is everyone here depressed. It doesn['t appear many people get results. I am a very positive person and always look forward to hearing both positive and negative results....I['m not finding that here. I apologize for my rant, I am a wonderful person who works for NYS govt full time and a local county jail part time, so I feel I have lots of empathy for people. Please someone try to talk me out of it, or write, respond, something....I am shocked at the lack of actual support this forum is my opinion, very little. I am very sorry, friended a few people privately, and they may be the only ones I correspond with. for the monitors here.......shame on you!!!!! I don't believe I will be posting about my first post surgical visit on Wed although, I bet I am doing excellent........

On-line support forums are not research-based to be effective in providing meaningful relationships or feelings of affirmation, self-worth, and empathy. It is more helpful, though more effort, to seek empathy and actual support from people who are present in your life or have the potential to be so.

May you have the strength to seek out the care and the support that you need and please try and refrain from disparaging a group that tends to fluctuate as people come and go - both in their on-line commitment and in their health. Everyone is at a different stage in their lives and can only provide what they are able to - that applies for on-line presence and in real personal relationships.

I understand completely what you are saying and find it very disheartening to hear so many unsuccessful stories on this forum. This is my first surgery but husband has many, including cancer, and other forums have been very different were as the provide links, supports, yays and nays for both. Too be honest, when I first joined a few weeks before surgery, I was terrified because all the stories I had read were negative. That shouldn't be what you want to hear. My boss told me everyone's story is different and people heal differently. All I know is that I had severe symptoms for eight years and finally got a diagnoses and DO NOT regret one moment of this surgery. Maybe I was lucky, but I was operated on in one of the best hospitals in NYC and my surgeon was a chiari specialist.....but realistically, it was the ENT there who discovered it and I am grateful. Please don't take my writing as negative, I am sharing my opinion, due to the fact, like I said previously, when I joined I was scared to death of the surgery due to what I read. I don't believe that is ALL people should be reading. I've lurked this site so many times trying to find positive outcomes, and realistically, look yourself, there are not that many happy endings. I find that quite unbelievable since I work in a Forensic Psych Center and County Jail where outcomes are extremely important with funding, research, etc. Again, I apologize if I hurt anyone's feelings, not intended to, and it is up to each persons choice to have the surgery or not, I didn't have a choice, I would have lost all vision, balance and had a feeding tube. good Luck to everyone here....I wish you success. Now I hope I didn't jinx myself and take a turn for the worse down the road. for now pain, but tolerable, PT, nurse and OT coming for home visits, and no leaks, blood, etc and for that I am grateful. Again, thanks for listening and just expressing my opinion. The other forums I have joined in my hubby's name, I do not care to share, but you would all be amazed. People from every part of the world on there, and we actual met one transplant recipient by coincidence at Mt Sinai a few years ago, and although we never met, we figured out who we all were what does that say?????

Tomygirl, it's pretty simple really, and we see it across all of the 30 odd Ben's Friends communities. People come looking for information or when they are in a health, recovery or relapse crisis and need support. The vast majority get what they need, have treatment, get better and they are able to pick up their lives and move on. For me that is a success story.

As a peer-to-peer network all we ask is that to get support you give support. Our communities belong to their members. And our members here come from every corner of the world, language and time zone all experiencing different levels of health, medical and social care.

I'm sorry that you have not found what you are looking for and that on such short acquaintance with our members you have found it necessary to express your negative opinion. I do not wish these amazing people to be dragged down by reading debate on this so I am closing this item to further comments.

You can, of course, stay around and try to help other people or leave our community as you wish.