Recovery is not going well... what to do?

I'm new here and haven't been able to post until now as surgery didn't go as well as it could have. I went to one of the top facilities in the nation for a little 3 to 4 mm unruptured aneurysm. Don't know what happened during surgery as no one will say & I don't medical records yet. From a couple documents I got my hands on, it appears I either had a stroke or rupture during surgery. Recovery notes say I lost function on my right side and couldn't speak, plus they "snipped" my III cranial nerve. Later that night had a severe Tonic-Clonic Seizure. After such a seizure there is normally a 10-20 min. recovery period, I went into a coma for days and almost didn't come out of it. I was never told about what to expect for recovery at home.

Been home for 5 wks. In the last 7 days my blood pressure was all over the place and all I could do was sleep for 5 days, the 6th day, Fri., I felt pretty good until 4 am when I started slurring my words, couldn't think straight & was having visual symptoms so I called 911. Once back home I slept all day & night until Sat. a.m. when the door bell rang. I started the conversation ok but in a couple of minutes I was slurring and not making any sense. I then checked the paperwork the local hospital sent me home with which said they couldn't find anything wrong. What would you do at this point???

Thanks, Karen

Karen,

I am so very sorry to hear about your surgery and recovery. What state and what facility? There might be some people on here that are local to you that can give some specific help. Do you have someone home with you? If not, do you have a significant other, family member or close friend that can help and be your advocate? Is there a phone number on your discharge papers to call in case of...?

My husband would probably take me to the ER at the hospital I had the surgery at since my surgeon is affiliated with that hospital.

My husband would be calling the doctors office and demanding to speak to the doctor immediately (no later than end of business day) if he did not show up to the ER to see.

We would not be leaving the hospital until they figured what was going on.

Did you have a follow up with your doctor? Have you talked to your doctor? If yes, what is he/she saying?

Terri

Karen...welcome here...and, so regret it is so worth all the worst reasons...

Prayers you have a strong advocate...spouse/partner/family/friends...

Did you have open surgery/clip or the minimally invasive coil/stent procedure?

Hugs and prayers for you, your recovery...

Pat

I had the paramedics take me to a hospital in Rogers Ark. The hospitals in Arkansas are rated poorly so I had my surgery done in Rochester MN, which is about 12hrs away, so going there was out of the question at the time. Unfortunately I live alone and don't have any family living near by.

The big shot surgeon and assistant surgeons in MN have refused to talk to me. I finally got to talk to his nurse last week and was told that if my eye didn't heal in 1 yr. that I would need to travel to a neuro-opthamologist for surgery on my eye & prism glasses. The nurse didn't know what was causing the Essential Tremors or blood pressure or slurred speech, etc. etc.

This surgeon & hospital have a top notch reputation which from my experience is certainly not justified based upon how they have treated me.

It's funny, sometimes I can't speak but can type with some extra effort, other times I can't do either. When I look at what I type it just looks like a bunch of garbled words that make no sense.

Thanks, your response is very much appreciated.

Karen

Karen,

Can a friend help you research some information? Find out who at the hospital you can call regarding the doctors refusing to speak with you regarding your surgery and lack of information. Let them know what is going on. The doctors in MN need to connect with a doctor in your area that can treat you now. I am not normally one to complain and I have never sued anyone, but in this case they are FAILING you. I would let the person responsible at the hospital know that if the doctors continue to not speak with you, you will file complaints with the medical board and will be contacting an attorney.

Karen, P.S...

Did you order the basic med records...or all the supporting data? It will be expensive...however, it includes the clinical data (CFR reg) that supports/confirms diagnostic and procedural written records...

Suggest you order CD/DVDs of all your radiographic imaging...ask if the DICOM data will be included...

Then, order an itemized billing statement...secure the admit/discharge records from your insurance company...not usually in the billing/customer service tel #...

I have no expertise...however, I was also treated in a highly rated facility...

Pat

Hello Karen..

Clipping or coil?

You need to request (in writing )all your surgical records from the Minn. hospital , names /positions of each and every person you've dealt with from start to finish, each Doctor, , Health Care practitioner, -- Surgeon,etc., and go to town with the Minnesota State Medical Board . File a complaint. do it online. Honestly Karen , it sounds like they've conveniently washed their hands of anything to do with you or your medical care (How lovely for them , you living in Arkansas and all) but I hope to God you, your advocate, a friend, or most appropriately your medical malpractice Attorney, will harass the living hell out of your medical team in Minnesota....meanwhile, you need to be helped medically..and perhaps the best approach in you getting the help you need might begin at the hospital Administrators office of the same hospital you had your surgery , armed with the facts related to their lack of care , names of all, the dates, the whole enchilada.. at their hospital...and do not threaten them with a complaint--MAKE the complaint! They are there to CARE for you, not to discard you conveniently since you live in another state! You made the journey to their facility for a reason, to get the best of care and the quality of excellence that they've made their business--not to get tossed aside and considered a problem due to medical mishaps made by their staff! they work for YOU, not vice versa Karen. ... Is this a teaching hospital? Who performed your surgery, and how long have they been in practice, and how many prodecures have they got under their belt? I know these are questions made in hindsite, however the first phone call i'd make is directly to their hospital administrator.... with the same questions ...and go from there. do NOT threaten..just DO.

I'm sorry about our dilemma karen, and I pray that you're able to get the care you need. ..and if memory serve me correctly, the laws state that if a person is in need/want of thier medical file, then that person can be charged up to a maximum amount of $ 300.00 , and that is it. After the $300 mark is hit, its then on the hospital , and not you..(.and if an attorney who is representing his client makes the request for the records due to a possible lawsuit pertaining to their care, then it should cost you nothing upfront to obtain your records. ) Peace to you Karen as you go thru this, I consider it an absolute crime how they've mistreated you..

Janet

Hi Karen...

You are your only "medical advocate"...and I can't believe you are going through all of this health wise and no one is helping you out...that being said, Call the Neurosurgeon office and tell them you want to be seen "sooner than later"... be sure to take someone with you and have notes written down...you really need to get to the bottom of what is going on...worried about you ~ Colleen

Karen~ so sorry you're going thru this- i would pray for starters, i cant understand their doctor lingo so i don't try-i hide the xrays under the bed ettc etc--keeping you in thoughts and prayers, remember we are here for you 24/7