I’m about in the same boat as you. Bless you in finding a dr. I’m very concerned as well, finding a dr has been a venture, however Selma, she will help you, she has lists of drs. Not to recommend, but yet give you guidance from others whom have used certain drs, whether great or no. I have learned when looking if it doesn’t say CHIARI in their description, no go, or at least that’s been my experience. I have already had 4 neck surgeries and a back, none done correctly. So I get your GO BIG OR GO HOME. Hopefully we BOTH can find a dr sometime that can guide us, and one we feel confident with. Best of luck to you!!
First of all, I want to admit that I am not 10 years out. That said, I had decompression surgery in Atlanta, Ga at Emory University Hospital 6 years ago and have been very happy with the results. No, I am not completely symptom free, but the difference has been astonishing. I would do it again in a heartbeat. The herniation may continue to grow, so I would definitely get it looked at. Although I chose Emory, I also liked Dr Kim at University of Texas in Houston. The key is finding someone who knows Chiari. Best of luck to you!
I’m only a year and a half out of surgery. From all the info I have read..... and I’ve read as much as I can find.... Chiari is progressive if you are starting experience symptoms then you will continue to experience them probably progressively, the longer there’s pressure on the nerves in your spinal column the more permanent damage can become. Surgery is not a cure it is only used to manage symptoms, it has been my experience so far that you need to find a neurosurgeon that has an extensive knowledge of Chiari, not all of them do.
Hi and welcome to the Chiari forum.
I had my surgery in '09...is that close enough? I had only one surgery....was told I needed two others before I had the first and to date still have not had them.....
As for symptom free....surgery is not said to rid of us symptoms, it is done to restore CSF flow and slow progression....help prevent a syrinx from forming.
You said a syrinx was not noted.....but what area was the MRI of? A syrinx can form anywhere in the spine, so if you have not had an entire spine MRI, you will not know if you have a syrinx or not.
As to how we feel post op.....it depends on you, your age and what other related and non related conditions you may have.
Am I happy I had surgery, you bet I am....I would do it again if I needed to....it was rough, I won't sugar coat it....and no I am not back to the life I had before, but I wouldn't want to go back to that life.....I worked far too many hours a week and felt like an 80 year old when I was in my 40's....I am doing much better, but I still have symptoms but they may be from my related conditions as many have the same symptoms. Hmmm productive life....I should say so....because of the changes to my life's path, being derailed by Chiari....I found new ways to be productive.....I paint, sew...and have a grandson I watch a few days a week, plus I help care for my sister in law who is an adult with Downs and early onset dementia....I also help my mother in law who is in her late 80's and has an ostomy anda had a stroke....I am doing more now with my life then I was before....but I still have to listen to my body and not over do it....and I have my moments when I just can't do more.....BUT I feel I am very productive..and it is also very rewarding what I do with my life.....
I really feel you need to take a deep breath and slow down....rushing into a DX especially if you have the wrong Drs....could lead you to more surgeries and to feeling worse then you do now...from the time I was DX'd until I had surgery was over a year.....and almost a year until I met the Dr that would do the surgery....I am so grateful for being able to not only find the right Dr, but to have been able to see benefits from the surgery....it is not something that happens right away...it takes time, in fact over the course of several years until I saw all the benefits....and it was all worth it, for me. I am not sure what you mean by relapse of symptoms since I still have symptoms....no I have not had some of my worst symptoms return..I had drop attacks and have not had any since surgery.My headaches I would get when straining are rare.....but still on occasion...and I still get headaches....but I am better able to handle them now....I know what I need to help reduce the pain....and it works most of the time....again it is rare to have it that bad that I can not cope with help from Ibuprofen and some CBD daily intensive cream.
I would strongly encourage you to search out a true Chiari specialist....CO has one of the country's best Chiari Drs and I heard he is back from retirement!!
Do not expect to get into a Dr right away, and even if you do, do not jump at the first offer of surgery....you need to make sure you are tested and have ALL related conditions ruled out before, and if the Dr does not look into those...run away from that Dr.
You have already received some valuable input here. However, being as I recall being in your boat several years ago... we will add my input.
Firstly, a larger community does not necessarily mean better doctors for a given issue. For example - my own case - after many months of trying to find out what was wrong we ended up at Cleveland Clinic Main Campus in Ohio. Since then I have seen more NS and a couple NL in this massive hospital that DO NOT know what to do with Chiari than I have that do know what to do. Only two of those doctors seemed to be able to relate to the patients feelings or what you go through. Both of those Doctors are now gone from Cleveland. I do hear they have another there now who is supposedly skilled with CM.
Every person has their own individuality just as we have our own physiological differences. As such we each will recover/recoup in different ways. Yet I respect your desire to research as with deformities such as CM that is the only way you will ever get an idea what to expect. No book or doctor can give truthful answers as to what you should expect.
Sorry I babbled enough so I'll try and answer what I think you were asking in shortened fashion.
First the surgery- do I regret it? NO!
Why, did it take away all the symptoms? No. In my case there is also a cerebral arachnid cyst that was growing and causing further compression and blockage. After the surgery the Doctor apologized to me as he said the post op testing didn't reveal the degree of csf pressure in my cranium. In his estimation some of my symptoms will never go away due to nerve damage caused in the cns from that pressure. The bright side of the story though is as Selma pointed out to you. No further damage can be caused by CM after the surgery.
Second- I'm in Ohio so can't really help with doctors in TX.
Thirdly- That is such an individual choice I refuse to give you a yes or no answer here. I know from personal experience that is most likely what you want at this time. I would highly recommend coming back to this list with your doctors comments and explanations though. Others may be able to offer input the more we know about your particular situation. One bit of advise I'd give you though. Write down all your questions now. Take those questions to the doctor. If he can't or won't take the time to answer them in a way that you can comprehend then more on. Just as there are dozens of M&Ms in a fresh bag - there are many more doctors on the planet. To find the right doctor is the key to your outcome. Thus again if he/she can't make you feel confident then the surgery should raise questions in your mind. Also perhaps take an astute friend or family member with you in case you miss something or forget to ask something that you wish to ask. My wife was very helpful in that way.
I do hope this babble helps you feel more comfortable at least to a degree.