Medical records destroyed, last surgery was so long ago

General
1

Had a pretty frightening experience that was a huge lesson learned.
I have been experiencing a lot of old problems the past few years, dizzy, headaches, horrible balance. These are all the same things I experienced back in 1976 when I first had my surgery, but instead of doing the decompression, my doctor chose to fix only my hydrocephalus with a shunt that I also had in addition to the ACM. It worked for a few years but things started to go bad again 4 years later. I then went in for the decompression and C1 Vertebrae removal. I was never told to come back for checkups after being released in 1980. So except for 1 particular time in 1992 I never went back to him.
I had the CT scans from in 1992 and that was something I never returned to him.

My recent bout with these symptoms have prompted my Primary Doctor to order a CT scan. He said that after he saw the results he wanted me to go to a neurosurgeon in town. I went and was through rigorous physical testing and questions etc… He decided that he wanted a series of Xrays to check the shunt and 2 MRI’s. That is where the problem that I want to warn you all about came in. All of this testing was scheduled and when the Hospital called the day before to ask the usual questions…are you claustrophobic etc… then they said be sure and bring your Medical ID card indicating what kind of shunt you have. I told them I had no Idea what they meant, I never had an ID. I was informed that if I can’t come up with that info, i would not be allowed to get the MRI’s.
I was in a panic, I was on the phone all day trying to find this info out. It all ended up that my Doctor from 1976-1980 had retired and sent my files to a holding office and they destroyed them after 10 years.
I was defeated, I drove home from work that afternoon and gave it all to God in prayer. When I got home something told me to look at my CT Scans that I had in my closet. I was like they are CT scans, they won’t be of any help. That voice said look in that folder anyway. To my complete surprise and excitement, I found MRI’s in with the CT Scans, I checked them against a light and they were actually from 1992 as well. I have no recollection of getting an MRI in 1992, but this was my key to unlock the whole situation. I called the hospital and was told to go ahead and come in for my appts and they would start with the X rays while the radiologist was confirming the MRI’s were after my shunt was installed. Once he was satisfied that they were in fact after the shunt was already installed, he allowed the MRI’s. Phew…
He said if I hadn’t have had those films, since I didn’t have a medical ID or records, he would have refused the MRI’s all together.
I don’t know the results yet, but this particular topic is not about that.

The reason for this topic is if you have a shunt or implant of any kind, please get some sort of indication that it is or isn’t safe for MRI’s or any other test that could cause a problem. I want to save you all the panic I was in.

Thanks for listening and sorry it was so long.

2

Glad you persevered and got answers. When you have a serious medical condition, perseverance to get answers is hard work, diligence and energy. It is much easier to give up. I know that my dura patch from decompression surgery is a surgical type of metal and that I can still get brain MRIs.
However, my neurosurgeon insists I do not need a card of any kind. I still get hassled if I visit a different MRI place than I usually go to. You would think by now everything would be mandated and in black and white…guess not. I will look into that. Technology certainly wasn’t like it is now in the 70’s or 80’s.
Also, what has saved me quite a few times is that now they can put your records online and you can go in and print them off. This makes life easier, so you don’t have to go to the hospital and hunt them down (guess you still would for MRI CD’s though).
Thanks for your sharing your story :).

3

It was a pretty harrowing day, I needed these MR’sI badly and to have it turned down was a little defeating to say the least. The hospital told me that I don’t need anything NOW since they will have record of it, but like you, I wondered yeah but if something would happen while traveling or if you should move. What then? I think it would be a good idea to get at least a letter which sounds like you are already trying to do.
My patch was made with meat meat from my leg, there was no dura patch back then. I wonder if that is part of what is going on right now? That along with suspected shunt problems. Well anyway, that is another story all together, I am glad to know that you read my story, I hope many others do too, This would have been easily avoided, but how are we to know unless someone tells us right? :slight_smile:

Something else good to think about is how long has it been since you have seen your doctor? If all doctors get rid of old medical records after 10 - 15 years, might be a good thing to ask that he give them to you.

4

Sorry to hear of the issues.

Note that this is not just a problem with old records but often a problem when traveling(if there are no comparison films, interpretation of new films may be less exact or additional films may be required).

The federal government legally requires all medical records to be held for 7 years, after which they may be destroyed.

With current medical technology, all images are digital and may be placed on a CD-ROM. I always recommend patients keep a CD-ROM of their most recent images. If they have had surgery, the most recent operative note is also helpful.

In terms of shunts, there are identifying marks on all shunts that can be seen on X-ray, which will allow the MD to identify the maker and location of the shunt.

Living in Orlando, we seen many people who travel here without helpful medical records and with complex medical histories. When I began practice here in the 1990s, I had to contact Make-a-Wish and have them alter their policy so that all patients that came here came with their images and operative notes to optimize care if their condition worsened(which was almost a weekly occurrence through our ER).

The bottom line is, everything can be reconstructed with new images but old records speed diagnosis and often reduce imaging requirements.

5

I appreciate your comments Dr. Trumble. It seems just very irresponsible to destroy medical records of this magnitude. I felt like my identification was thrown away without my knowledge.
I would like to think that they would be offered to the patient first. I am just glad I was defiant enough to keep my films from back in 1992 hahaha. That was the only saving grace in this whole thing.
It turned out that everything is still relatively stable, but the shunt is so old that it is not visible along the path where it should be. It shows up plain as day in my skull but they can’t detect its exit. It randomly shows up then disappears along the path.
But degenerative disc disease shows up in my spine.

Between the surgeons office and my primary care Doctor, they have put me in physical therapy. My therapist was recommended by my primary care Doctor because he knows that she deals with brain injuries and malformations. I have been going for a few weeks and am already scoring better on the balance machine. So that is good.

I asked the surgeon if I could get a card or something this time around. I was told that they really can’t give a card since they still don’t know what type of shunt is installed. But if I would ever need proof of MRI’s being taken, they have the proof that can easily be accessed and provided.

I asked about tossing my 1992 films but was told that is my decision, but it would be best to keep then in case anyone would ever want to compare them to the newer ones.

Again, thank you. And if something I was told doesn’t seem right please let me know that as well.

6

Hello there, new here. My name is Kris. I wondered if you know why they wanted the card? Is it because they worried there was metal in it that could hurt you or the machine if you have it done? I know you said yours was made out of your leg muscle, but I’m just curious.

7

Hey there krispynachos, The reason for the Card was because without knowing what brand my shunt was, they were afraid of a metal component in it or possibly being a programmable shunt. Their fear was that the MRI magnets would rip it out of my head or erase the program. I assured them it was not programmable, but I had no idea about a metal component.

The part that was made out of muscle from my leg was the patch they made to cover the area in the back of my head where part of my skull was removed during the decompression surgery. Please feel free to ask me anything else you might be curious about. It si surprisingly easy to talk about it after keeping the entire thing a secret for over 40 years.

Dennis

8

My Diagnosis and surgeries were for Hydrocephalus and Arnold Chiari Malformation. The malformation surgery itself was not a problem. It was just the shunt that kept it from almost happening.

9

I appreciate the comments Dr. Trumble. It seems just very irresponsible to destroy medical records of this magnitude. I felt like my identification was thrown away without my knowledge.I would like to think that they would be offered to the patient first. I am just glad I was defiant enough to keep my films from back in 1992 hahaha. That was the only saving grace in this whole thing.It turned out that everything is still relatively stable, but the shunt is so old that it is not visible along the path where it should be. It shows up plain as day in my skull but they can’t detect its exit. It randomly shows up then disappears along the path.But degenerative disc disease shows up in my spine.
Between the surgeons office and my primary care Doctor, they have put me in physical therapy. My therapist was recommended by my primary care Doctor because he knows that she deals with brain injuries and malformations. I have been going for a few weeks and am already scoring better on the balance machine. So that is good.
I asked the surgeon if I could get a card or something this time around. I was told that they really can’t give a card since they still don’t know what type of shunt is installed. But if I would ever need proof of MRI’s being taken, they have the proof that can easily be accessed and provided.
I asked about tossing my 1992 films but was told that is my decision, but it would be best to keep then in case anyone would ever want to compare them to the newer ones.
Again, thank you. And if something I was told doesn’t seem right please let me know that as well.

Dennis K. Brooker

Dr_Trumble
October 26 |

Sorry to hear of the issues.

Note that this is not just a problem with old records but often a problem when traveling(if there are no comparison films, interpretation of new films may be less exact or additional films may be required).

The federal government legally requires all medical records to be held for 7 years, after which they may be destroyed.

With current medical technology, all images are digital and may be placed on a CD-ROM. I always recommend patients keep a CD-ROM of their most recent images. If they have had surgery, the most recent operative note is also helpful.

In terms of shunts, there are identifying marks on all shunts that can be seen on X-ray, which will allow the MD to identify the maker and location of the shunt.

Living in Orlando, we seen many people who travel here without helpful medical records and with complex medical histories. When I began practice here in the 1990s, I had to contact Make-a-Wish and have them alter their policy so that all patients that came here came with their images and operative notes to optimize care if their condition worsened(which was almost a weekly occurrence through our ER).

The bottom line is, everything can be reconstructed with new images but old records speed diagnosis and often reduce imaging requirements.

Visit Topic or reply to this email to respond.

In Reply To

dekabe
October 21 |

It was a pretty harrowing day, I needed these MR’sI badly and to have it turned down was a little defeating to say the least. The hospital told me that I don’t need anything NOW since they will have record of it, but like you, I wondered yeah but if something would happen while traveling or if you s…
Visit Topic or reply to this email to respond.

To unsubscribe from these emails, click here.