Anyone have nerve damage to leg during surgery? Turned out to be minor stroke
Hello all,
I’m wondering if anyone has had similar issues following surgery
Brief summary:
- July 2022: had a heart attack and stent placed. Began 1 year treatment with Plavix to prevent clotting of cardiac stent.
- September 2022: diagnosed with DCIS. Surgery delayed due to recent heart attack and Plavix. Began treatment with Anastrozole.
- July 2023 Monday: Lumpectomy and bilateral reduction under general anesthesia. When I woke up, I could not lift my right leg off the bed. Sensations were all normal. My PS said most likely related to positioning during surgery. I was admitted.
- Tuesday: Very slight improvement. Neurologist consulted. Head CT, head MRI, lumbar spine MRI ordered. CT scan conducted, ruled out stroke. MRI was backed up. Physical therapy saw me, gave me a walker. At this point I could walk with tiny baby steps. Lifting leg off ground was extremely difficult.
- Wednesday: continued little by little improvement. Waited for MRI all day.
- Thursday: 1 A.M. MRI. Waited all day for results, but none were given. PT came to work with me again which was super helpful.
- Friday: PS surgery resident comes in early and says MRIs we’re clear. There’s no explanation for the leg weakness. Prescription for physical therapy. (They tried to get someone to come to our house, ut we live in a ti y rural town and agencies that did come here are not covered by my insurance .) Finally released mid day.
- Saturday (today): continued small improvements each day, but seems like a long way from my baseline. Since my heart attack I have made significant lifestyle changes to improve my health. A week ago I was climbing the hilly roads and hiking in the nearby state forest. This feels like a huge setback.
I will schedule PT with one of the in network providers outpatient and follow up with primary care on Monday. Putting aside my frustration about the delays and poor communication between my care team members and to me, not to mention what an emotional rollercoaster this last year has been, I am left with lots of questions and concerns.
Has anyone had a similar experience after surgery?
Comments
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@Granhillbillian , While there is no knowing whether the leg weakness is due to surgery or just happened for another reason at the same time, it is probably worth investigating exactly what happened during the surgery and while you were hospitalized. You can request all of the medical notes written by all of the providers who participated in the surgery (anesthesiologists, surgeons, residents) from the hospital as well as all other medical records from the hospital stay. They will be quite lengthy (hundreds of pages) but something might be noted or stand out. It's not easy to wade through this without medical training but you might be able to pay a professional to review them to see if a possible cause can be found. You can also ask for CDs of any imaging that was done for the reviewer.
I did this for an emergency surgery not related to breast cancer. While I have a pretty good science background my daughter, a PA, also read the notes and viewed the scans (which I couldn't do.) There was something relevant that had happened in the ER prior to surgery and I was able to contact the appropriate doctor for treatment. This is quite time consuming but given the change in your mobility it might be worth it. I hope you continue to improve.
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I agree with maggie15 - request your surgical notes and see if you can figure out anything unusual.
That being said, I had a similar issue, but the cause is still not straight-forward. About 9 years ago, I had a badly ruptured disc. It took way too many doctors and far too long for it to be diagnosed, and then once it was, it took a total of 3 surgeries to actually fix it, including spinal fusion. I couldn't stand on my toes on the left prior to that fusion surgery, but when I woke up from the fusion, I also could bend my toes or walk without a limp and have had significant weakness in the left leg ever since. I was 35 and came home with a walker and then used a cane for 6 months. I did PT, and it helped minimally, but I will always have weakness and impairment in the left foot/leg.
I can only assume that something happened in that fusion surgery that further damaged the nerve (maybe it got overstretched, or knicked during surgery) I will never know at this point. I do however, understand your frustration. You may never learn the reason for your weakness. It's possible you were positioned in a way that led to some nerve damage. It's possible you could have had a "small" stroke. So many things could have happened. Hopefully, you will have your full function restored over time. It's still early days for you, but I'd definitely talk with all the doctors/surgeons and press for some answers.
Christina
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@maggie15 , @momgoose Thanks for your suggestions. Just getting back to this post 1 year later. Thought I would give an update in case anyone experienced something similar, stumbles on my original post, and wondered what happened.
Tl, Dr: I had a small, MRI negative stroke during my lumpectomy, bilateral reduction in July 2023 that has caused ongoing weakness in my hip flexors, balance issues and gait abnormalities for >1 year.
Since I orignally posted about my weakness in the days following my surgery, it’s been a long and frustrating journey. I’ll do my best to lay out my progress and anything I’d suggest if someone finds themselves in a similar situation.
- I did request my operative notes and couldn’t see anything that that could explain the complication.
- I left the hospital with a walker and the ability to walk with tiny baby steps. Over months things have slowly gotten better and after 1 year, I get around pretty well, but not able to return to hiking, running, etc that I was doing pre surgery.
- I saw a variety of specialists : physical therapist, physiatrists, spine surgeons, neurologists,
- I had little treatment : physical therapy, multiple spinal injections. Neither worked.
- The only thing that really worked was time.
- I had a very difficult time getting access to or answers from neurology at the medical center where I had my BC surgery. It’s hard not to think they pushed back because they may have missed something in early days that could have helped me recover more or faster. After 6 months they agreed to see me. They said that my issues were due to nerve irritation related to degeneration in my spine but couldn’t explain how surgery caused the sudden onset of symptoms, why I had weakness but no pain (typical with spinal degeneration that compresses nerves) or why it was only 30% recovered after 6 months. Honestly, they barely listened to my symptoms and based their explanations on MRIs only.
- Real answers came when I sought help at a major medical center in Boston, where I was assessed by a neurosurgeon and a neurologist. Their conclusion was that I had a small stroke during my surgery, due to small vessel disease in my brain. Luckily not a massive stroke that left me with much more severe deficits. They based this on my clinical picture and history, not on imaging alone, saying that MRIs don’t pick up everything.
- Interestingly, both my Radiation Oncologist and my Cardiologist, both women, when I described my symptoms and slow progress said they thought it was a stroke.
My suggestions if you aren’t getting answers - whatever your symptoms:
- advocate for yourself
- If your symptoms aren’t taken seriously enough, or questions answered to your satisfaction, go for a second opinion. Discuss with the first opinion with the Dr giving the second opinion and visa versa.
This has been an incredibly difficult year for me with such slow progress and unclear prognosis. I am getting better. I have plausible explanations and relationship with a provider I trust. I feel more hopeful.
Even when we have positive outcomes for out cancer treatment (which I wish all my sisters!) none of us comes out completely affected physical and emotionally. Hang in there sisters, you are not alone. 🩷🌸🩷0 -
@Granhillbillian , I’m glad that you finally got some answers and are improving. I now travel 100 miles to Boston for anything non acute since my local rural hospital keeps missing things. Nobody wants to admit that routine treatment for early stage breast cancer like your surgery can cause grave problems. I ended up with a rare serious SE from radiation at the major medical center. I was referred to a specialty pulmonologist as soon as I figured out the cause by reasearching the description of my chest CT (neither the local radiologist or pulmo knew what it was.) I was dismayed to hear from my specialist that a lung cancer radiologist would have seen the red flags in my medical history and advised against radiation. Hindsight is 20/20 and while this has altered how I have to live I’m happy to still be here. I hope your improvement continues.
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this is so interesting. I am in the middle of a quest trying to figure out what happened to me. I experienced sudden left side numbness. I was admitted and lots of tests ran with no answers. The numbness lasted for about 5-6 hours was pretty severe and sometimes uncomfortable. It affected the left side of my lips, my left hand mostly my thumb and my entire left leg. It might have included my side but I can’t remember. It was intermittent. The next day I had hypersensitive sensation just in my lips. Going home from the hospital I occasionally felt numbness and tingling in those locations but they were mild and brief. I have follow ups with neurologist today and later a rheumatologist because one of my autoimmune markers came back abnormal. I am generally healthy. I can’t understand what happened to me
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@monarchandthemilkweed I hope you get some answers very soon. I was 65 when this happened to me, had had a heart attack 1 year previously. One of my goals after the heart attack was to get as strong and healthy as I could so I’d be ready for my BC surgery when I was vpcleared to have it. I got regular exercise, adopted plant based diet, etc. My brain MRI did show signs of small blood vessel disease, so that’s something you might ask about.
take good care of your self and let us know how you make out.0 -
@monarchandthemilkweed I am in west of Springfield MA. If you care to share, where are you?
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I’m in Granville. I see docs at Baystate. For the most part, they have been fantastic. Except for neuro. Have you gotten any more answers?
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@Granhillbillian hi I’m near Pittsburgh, PA.
Neruo is thinking either mini stroke or autoimmune. I see rheumatologist on Tuesday. Very anxious. I’ve been feeling ok. Occasionally I feel tingling but it’s very brief. If I hadn’t had this episode that landed me in the hospital i probably wouldn’t even think about brief tingling. But I feel hyper vigilant right now about my body and health. I desperately don’t want another diagnosis but answers would be nice0 -
An update for anyone following. I had stroke like symptoms that lasted for hours but also didn’t clinically fit a mini stroke. No imaging to back up a mini stroke. I had a abnormal ANA result. So was referred to rheumatology.
So the appointment went as good as it could have. He’s not too worried. I don’t present like lupus. My symptoms that I presently have are very transient. So he is going to run some more bloodwork. And you know I like to be informed and understand the tests ordered and he explained but I don’t understand. If the results are abnormal he might consider sending me to hematology 🤷🏽♀️. I feel like he understands my symptoms and I agree with him that i do not at the time want to do more tests.
As far as MS, since Neurology isn’t worried about that he isn’t either.
If I do have an autoimmune condition then it will eventually present itself with more or worsening symptoms
I asked him if he thought a mini stroke was more likely to explain my symptoms than autoimmune and he declined to give me his opinion which is fine. I respect that. So really it went as good as it could have
He doesn’t expect the bloodwork he is ordering to come back abnormal. He’s just being safe and thorough. I’m ok not knowing right now. I have peace of mind at the present because I’ve followed up with every dr suggested. Ans nothing is definitive.
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HI @monarchandthemilkweed, Good to hear the rheumatology appointment went well and that doctor is satisfied with the neurology report. Even though there is no answer it seems that all aspects were thoroughly investigated. I hope the bloodwork is normal. Thanks for the update.
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