Acquired Ataxia from Anesthesia - Patti Tilden

[PattiTilden]

In July 2014 I went through a shoulder surgery and was given 12 drugs for anesthesia. The dosage levels were way too high, there were many duplications of drugs, and too many given within a specific class of drugs. It started out with balance problems within 2 months of the surgery, but was told they would resolve if I just did the balance exercises given in physical therapy. Not true. I did all of the exercises and much more, to no avail. It progressed to ataxia, and I got a wheelchair a year ago, which I tried to only use when really necessary. But, in the past several months, the need for the chair has increased, and I'm afraid I've reached the point where I need it almost all of the time. I can only walk maybe 25 feet, or stand for 5-10 minutes before I collapse. My legs are still very strong from balancing me, but it feels like my hips and lower torso have lost all muscle strength. I have much nerve damage throughout my body: peripheral neuropathy, severe muscle cramps and spasms in my legs, feet and hands, foot drop, my right leg is now shorter than my left, both knees are bone on bone from my wide gait to balance, my handwriting is shakey and sloppy, and I was just diagnosed with PTSD. My surgery was a near death experience, and I suffer from nightmares that wake me with feeling that I cannot breathe. I found out a year after the surgery that it had been unnecessary. The surgeon and anestheologist were irresponsible and careless in their treatment of me. Bringing a lawsuit against them has proved to be impossible. My left arm and shoulder were ruined as a result of the surgery. Worst of all is that I am now totally alone in life. Family and friends could not understand the new me, and ran from my life. The loneliness is excruciating. I was widowed quite young, so there is no one in my home to help me. I just want to make some new friends who will accept me the way I am now. This has been very hard to do. It seems that no one wants to be friends with a cripple, and no man wants to date one. I am not an invalid. I'm resourceful and manage very well on my own so far. My fear is that could change as I've learned that ataxia is progressive. I had been an athlete and dancer all of my life prior to this. It is so hard to not be that active anymore, and I miss many physical activities, as well as having a social life, or any kind of life, for that matter. My quality of life was reduced to zero in the last 2 years. BTW, I live in Laveen, a suburb of Phoenix, AZ, USA. Any feedback and/or new connections with others would be most appreciated.

[february]

Dear Patti, I'm so sorry this has happened to you! I have ataxia, although it's the result of an unknown cause. If you ever want to email, I reside in the USA (in the State of Michigan). My best to you..., ;o)

[PattiTilden in reply to february]

Thanks so much, February. I'd like to hear more of your situation, but only if you want to share. Sharing my experience helps me "get it out", and not that I wish this on anyone, knowing about another's experience will help me for further knowledge, and knowing I am not so alone. I look forward to hearing back from you. My best to you as well.

[february]

Dear Patti, OK, here goes...,ha! I was diagnosed with Sporadic Cerebellar Ataxia thirteen years ago (I'm now 63 years young...,ha!), unknown cause, progressive, symptoms 24/7, although I had extremely mild symptoms starting about eight years before diagnosis. No one in my family, as far back as we know, had/has ataxia except me. My ataxia effects my gait/balance (I use a cane or rollator when I leave my home, but am still able to walk, extremely carefully, in my home without any aides), dexterity (writing, printing, fine motor skills) speech (slurred), swallowing (coughing and sometimes choking) and vision (no nystagmus, just slow to focus). Over the years, I've had genetic and exome testing for the known recessive and dominant ataxia's, which was either negative or inconclusive. I try to exercise for strength and balance and eat as healthy as possible. Exercise can be a bit iffy for me, as I have arthritis in both knees. I too was very active and athletic before ataxia reared it's head...,ha! If there's anything else you'd like to know, please ask me...,;o)

[PattiTilden in reply to february]

Hi February,

Sorry for the delay in writing. I've been applying for a mortgage and moving out, staying different places, and then moving in. A old friend from high school has come to help twice and is here now. Please email me at [e-mail]. I've typed out messages here and lost them, so email is better.

I am so sorry for your 13 years of this. We will have to exchange more info. Ok? All the best, Patti

[wobblybee]

Hi Patti😊

In case you were unaware, there's an Arizona Ataxia Support Group on Facebook🙂 And, you can also contact [e-mail] tel [phone]🙂 ( info from National Ataxia Foundation - Support Groups)

I live in the UK, and have been coping with ataxia symptoms since the early 1990s. Initially I was misdiagnosed, and didn't get a definite diagnosis of Cerebellar Ataxia until 2011 but at the time it was thought to be Idiopathic. I donated DNA for research, and a couple of years ago a partial link was found. Currently, I'm being tested for Episodic Ataxia😏

You've had a nasty experience😑 My daughter had PTSD, therapy did help but she hasn't completely been able to deal with it. Did you see a Neurophysiotherapist🤔xBeryl

[PattiTilden in reply to wobblybee]

Dear Beryl,

I apologize for the late reply. I wrote a very long message to you and lost it.

So, this will be short. Let's exchange email addresses. There is so much I want to say and ask. I did read your profile too, and my heart breaks for you with the breast cancer as well. After more research, I realize I have canvas ataxia, and it is awful. My pain increases almost by the day. Luckily it is often fatal, as this is progressing very fast. My email is [e-mail]. Please do write me there as I want to correspond with you!! Best always, Patti

[wobblybee]

🙂Patti and I have corresponded🙂xB

[AZWobbly]

I don't know if anyone follows these, but as of 10/2/2018, I have good news. At first my worst fears came to pass and I spent about a year in a wheelchair. But, I keep fighting and searching for answers and cures. I have now not even used the chair in the last 4 months. My balance and walking are getting much better. I am too tired now and not sure of followers, but shall report more when more rested. Thank you all for the support and replies. This is Patti Tilden again.