Please help urgent- after mri head problems

General
1

Hello all:

i have had an unruptured brain aneurysm surgery on October 2013. I was OK but for sleeping problems, depression and change of personality.
Yesterday I had a MRI for the first time since then and since this MRI, I have horrible headaches, pressure in my temples, nausea. I had a scan and they said everything is in place regarding my clips and the surgery. But it’s impossible. My head is not the same. I can’t even think the same. Some terrible tiredness in my brain. I can’t even keep my head straight without pain. I am in a country that unfortunately is not at all helping and I am trying to find a good doctor either in America or England. But which kind of doctor should I see for this kind of problems ? I am completely alone and I have to know quickly if I have to become either paralyzed or insane. My legs are not responding as before. Very weak inside. Can anybody give me doctors’ names in England or America ? Thank you for your help all and I wish you all a wonderful recovery.

2

Hey Sheila,
Unfortunately it is not uncommon for the medicos to rely (or make a diagnosis) solely on images ie ‘Everything looks OK, so it’s all OK’, when it’s not. Often symptom reporting by patients is seen as anecdotal, so more emphasis is placed on imagery.

My last major (intracranial) surgery was in Sept '13 and I too have been on that roundabout of ‘Everything looks OK…’, but things are not OK. I have seen all sorts of dr’s, specialists, therapists and professors without any great success. I think the closest I got was when a specialist explained that the blood flow within the brain was established within my mothers womb and the brain developed around this, that blood flow has been altered. This has now altered the way in which the brain functions, making some functions and thoughts increase and others diminish. I even had one dr say 'Well, what do you expect? You’ve had brain surgery, there has to be a flow on effect…" to which I agree… …but I wasn’t expecting ‘This’.

Here is a link to another page which has some other members recommendations regarding Drs https://www.bafsupport.org/c/recommend-doctor-or-clinic

Hope it helps
Merl from the Moderator Support Team

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Aneurysm clips are made from pure titanium which is a metal that is ok in the MRI machine. Because my clip is so old, they won’t do an MRI without knowing the brand and type of clip,since some of them way back then had some tiny amount of other metal content that was not ok in the MRI. While you are waiting to talk to an expert, find out the brand and type of clip you have. In the US, the medical record has to include the model number and serial number of the clip. I don’t know where you had your surgery, but having a clip that wasn’t pure titanium can cause problems after an MRI. It’s very unlikely to happen anywhere, though, because those clips are now 20 years old.

4

Hmmm, little confused…your profile page says you are in New York. The depression you write about can cause a lot of different things both in mind and body. Perhaps a good Neuro psych can help

5

Dear Moltroub:

I read your story. I am so glad you are OK after such an ordeal. God be with you!

Thank you so much for your email. In fact I live normally in New York, but I came to Paris, France, to visit my daughter, and there I fell from a 6.2’ ladder on August 1st. To make a short story, the french are extremely lax and didn’t care. They let me without care until October 15. They did a scan only around this latter date and didn’t even see what’s going on.

Finally last week a neuroradiologist did an MRI on my spine and head, and he said I have now HYDROCEPHALUS. I believe the MRA did something to my brain because before the MRI I had no pain in my head nor any real hard problem, but only that my legs started to feel weak.

So I wondered if their machines, in France - they are quite old you know -, are responsable for the damaging on my ventricules’ enlargement.

Thank you again. I will try to edit my profile.

If you know anything about this please let me know. Thank you

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Dear Moltroub:

I tried to edit my profile to talk of the newest events since last August when I traveled to France, and don’t know how to do it.

Would you know how or who to contact who could give me the guidelines for editing my profile as well as my email address. I normally gave another email address (at least I think so: it was quite a while ago that I created my account), and would like to update my email address as well.

If you can, I’d appreciate your reply. Thank you

Best regards and wishes for a wonderful health and life

Michele

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Good Morning! Here’s the directions to change your profile information.

  1. Your Avatar button
    Click here to access your profile page
    You can bookmark posts for later, just like you do with internet pages. If you have bookmarked any posts, you will find them here.
    Access your private message inbox here.
    Here are your settings. You can update your username, email, “About you” section, and profile pictures here. You can also change your email preferences here.
    Below these buttons, a list of your notifications will appear. You will get a notification if someone replies to your post, likes your comments, or sends you a private message.

Falling off a ladder isn’t fun. I’m short and was trying to paint a bathroom. I over reached and the 6’ ladder gave way. I broke the ugly blue toilet. Initially I thought it was my head that broke the toilet, but my head hit a rung. Ladder broke and the top of the tank. I’m not supposed to be on a ladder anymore​:crazy_face::rofl:. I wonder if it’s something in your back. Maybe a vertebrae or two are pinching some nerves.

I really, really like my Neurosurgeon, Dr Stacey Wolfe and her team at Wake Forest Baptist Health in Winston Salem, NC. She does a good bit of brain surgeries as well as back if needed. She had an MRI done on my spine and was extremely pleased with the work my other Neurosurgeon did so I could keep walking. I asked her new NP Ryann, and she said they can do second consults and review the tests if needed. This is her number (336) 716-4081

As for medical care in France, I thought they are some of the leading researchers on aneurysms. They may be like the States and some hospitals purchase newer equipment. I wish WFBH would get the software for music in the MRI machines.

Are you able to contact the Dr who did the scan and ask if the hydrocephalus can cause these issues?

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Hey Michelle,
Hydrocephalus is caused by a blockage of a little drain tube at the base of you brain that runs down our spinal cord, called the aqueduct. The brain and spinal cord are surrounded by a fluid called Cerebral Spinal Fluid (CSF) which is produced in the brain. When that fluid can’t get out of the skull, that’s hydrocephalus or ‘Water on the Brain’.
A sudden jolt can move structures within the skull, sometimes blocking the aqueduct. Also a jolt can cause a small (insignificant) bleed, that blood can congeal and block the aqueduct. We ‘normally’ produce around 600ml of CSF per day, we need a fairly exact balance between CFS, blood, oxygen and grey matter within our skulls. If one thing is out of balance we become symptomatic and fairly quickly. If the blockage is complete and no fluid can get out at all, within 12hrs, the symptoms are chronic bad.
With a restriction or reduced flow it can take months (years even) for symptoms to show and often start out small and seemingly insignificant, but as the pressure builds the symptoms increase.
I doubt an MRA caused the issue.

Merl from the Moderator Support Team

1 Like
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Dear Moltroub:

Thank you very much for your email and I am sorry for my late reply. I just saw your email. I don’t know why I just can’t understand how this site works. Perhaps I am too tired?

You say “click here to access your profile page”: Please, where “here”?. Also, Where is the Avatar button?

I am glad you didn’t damage yourself falling from the ladder. I hope I understood you correctly: you didn’t hurt yourself, right?

Me too, I shouldn’t use the ladder, but you are alone and short, what else can you do?

Thank you for the telephone number of your doctor. Do you think she would accept that I sent her my MRI and SCANS through an internet share site, like DROPBOX?

I will call her tomorrow. It might be too late now.

I really believe that something happened during the Cerebral MRI. I hope this doctor can tell me if something has been damaged on my brain surgery which was done almost artistically said the radiologist in France.

Since my Cerebral MRI, I am now having huge headaches, like if I was to have a rupture. My eyes burn, I have nausea, and my head is like compressed in a gas chamber.

I wanted to put a blog to know if some people have experienced the same after an MRI. I am very worried and mad at myself to have accepted this MRI.

As for France, Moltroub, what you hear, is not true. France is not what people think it is. I don’t want to talk politics at all, but tell you what I am noticing since my fall, and that I don’t think I am getting the care I need.

So I am afraid. I did say to the radiologist, about my headaches. In fact I had nausea and dizziness, and he gave me a perfusion afterwards. I had many MRIs and I never experienced such a thing.

He said that my aneurysm surgery was done artistically. He was amazed by the professional work of the American neurosurgeon.

He said that now I have Hydrocephalus, but only on September 2018, I had a cerebral scan, and even in the middle of 2019, and no doctor told me that.

I sent the MRI and SCAN to an ITALIAN doctor in Italy, and this doctor said he didn’t see Hydrocephalus. Is it possible that the radiologist lied to explain my pains and the change in my head?

He gave me a scan after the MRI and he said nothing was wrong. But I am not confident I can trust him. I believe he wants to protect himself because I gave him all information on my clips and “hardware” in my head, prior to the MRI, and he accepted to do the MRI. What I believe happened, is that he was supposed to monitor the whole operation himself to be sure that the machine didn’t inject too much magnetism, and he was not there all the time. He gave this work to a young assistant who was a student. It happens all the time in France. I know. I could see everything from my MRI table.

I am really worried that the cerebral MRI has damaged some of the “hardware” in my head that were used to clip my aneurysms, and perhaps the plate, screws, whatever. My head had no problems before or after the fall. It’s only on the MRI table that I started to have headaches and nausea.

I do have a fracture compression on my vertebrae L2, and my legs are becoming weaker by the day. That was already very bad, and I didn’t need to have the pains on my head as well.

Moltroub, I believe I didn’t get your first part regarding how I can change my profile. Also, I think I’d like to write another post regarding this MRI’s matter to see if anybody else has experienced something similar.

Can I write a second post besides the one I already wrote?

Tell me about you. This is also my problem since my MRI. I can’t think straight as I did, my memory is not as sharp, etc. So Please forgive me if I asked you twice the same things.

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Dear Merl:

Please forgive my late reply. I am extremely tired and have a lot of pain, and also I don’t know why I don’t know how to navigate so well in this site.

Thank you for your explanation. The radiologist said I have enlargement of my ventricules, but nothing about aqueduct or what you describe. Also, why didn’t I have any symptoms at all before the MRI? Why did I started to have headaches and nausea while I was on the MRI table? This is what is so confusing to me. Since my surgery in 2013, I was really very well despite some fatigue and sleeplessness that I finally more or less corrected with melatonin.

Is there any test to be made to see the progression of this condition? or a surgery?
It seems my symptoms are worst by the day. Does it mean that very soon I might be totally impaired?

The radiologist made a scan after the MRI because of my sudden headaches and nausea (my headaches are pressures and not migraines) but he said he doesn’t see any difference with the MRI. I did send my MRI to an Italian neurosurgeon in Italy, and he said that he doesn’t think I had Hydrocephalus. So, which one is right? I am dumbfounded, and in the meantime my life is a nightmare. Sorry to complain, but it is true.

I really would like to have a diagnosis from a neurosurgeon who can read my MRI and scans (I can send them on Dropbox.com) and tell me if he really sees a difference in my brain between before and after this last MRI, and also to confirm or not that I have hydrocephalus. And then, I can perhaps make some decisions.

Thank you a lot. I tried to read your profile and couldn’t go to it. If this is Hydrocephalus, it is making me “stupid”. LOL. I hope not.

11

Dear Kate.

Please forgive me if I didn’t respond quickly. I am not well.

To respond to you regarding the clips references, I had the list. I had my surgery in San Diego on October 2013. The neurosurgeon wrote me a letter saying that it was OK to have an MRI because the material was all in Titanium. I also had the list and the references that I gave to the radiologist.

I also made an extensive search to find all the manufacturers and all gave me their product description and brochures that I gave to the radiologist.

He had said that he could do an MRI under condition, i.e. no more than 1.5 T and that he had to monitor himself the whole operation, all the time without leaving the monitor to be sure that no more magnetism that the maximum allowed is sent.

Unfortunately, despite his promises, he left his young assistant alone in front of the monitor. In fact I have been told that it is normal procedure in France and don’t have to ask for your consent.

Until the MRI, I had no problems at all on my head. No pain whatsoever. Only sleeplessness, some depression time to time and fatigue.

While I was on the table, I started to have headache. That was on October 25. Until today, the pain has been resistant, as well as nausea, huge fatigue, weakness on my legs. I also have difficulty thinking or concentrating for long. It’s horrible because I am very involved intellectually.

Thank you for any idea you may have. I don’t know where to go from here because I cannot travel back to the US for now due to my bad health, and because the French system won’t help. They give you appointments in 3 to 6 months to see a specialist, or have tests. In fact they don’t even tell me which tests I might need.

They say I have hydrocephalus, and they just let me be. But why didn’t I have hydrocephalus until my MRI? That is what is disconcerting to me.

I need to speak to an American surgeon who can really tell me what tests I must require here, and if I really have this hydrocephalus or if it is something else.

I need to know what to expect in the near future. Am I going to become totally impaired, invalid, or else?

I am sorry to sound so depressed, but this is because I am not used to the French medical system which for me is very scary.

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This is terribly wrong. If you can get copies of your medical records, you can send them to a US surgeon. There is a well respected international telemedicine neurosurgery program at a Boston hospital that will give you an expert assessment while you are in France. I don’t know the details or the cost, but you shouldn’t wait a few months. The other thing to know is that the brain can heal, even after trauma. Be kind to yourself while it is recovering. Eat high protein meals, keep well hydrated, and rest. Get as much sleep as possible, even if it is with multiple naps. I believe it is how the brain heals. It is natural to worry and I think seeking a telemedicine consultation might give you some answers as to what happened. Thanks for giving everyone this warning about the clips.Trust that the brain can heal over time and that things might be better soon. Take care! https://www.brighamandwomens.org/neurosurgery/international-neurosurgical-services

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Hey Sheila,
"I tried to read your profile and couldn’t go to it. If this is Hydrocephalus, it is making me “stupid”. No, it’s not making you stupid. As I’m a moderator here on Ben’s Friends my profile is not shown via the Modsupport avatar, so that’s not your stupidity at all but rather the server’s setup.

Now for your situation.
“Sorry to complain” As I have stated to other members previously, PLEASE DO NOT BE APOLOGISING for querying or complaining or expressing concern or venting or any of it. This can all be rather distressing to say the least. We know that, because we live it too. So stop.

Hydrocephalus is an excessive build up of fluid within the ventricles of the brain. The fluid surrounds and cushions the brain and we need a certain amount of fluid within the ventricles to do this. Too much fluid and we get hydrocephalus, not enough and we develop what is called ‘Slit Ventricle Syndrome’. Personally I have had to deal with both of these conditions due to issues with a shunt.

The way in which both of these were diagnosed was by measurements from the scans. It is the radiologists role to interpret these scans, then write a report based on their interpretations. Some may use a range ie between 10mm to 20mm, some may use a defined measure ie 15mm. Because of the variability of the human body using a defined measure can be problematic as not everybody with the exact same measure is going to have the exact same result/symptoms. Also that interpretation may vary from specialist to specialist be that neuro or radiologist. A radiologist could write “Signs of hydrocephalus” where another radiologist could say ‘Minimal signs of hydrocephalus’. Often if we are not symptomatic no action will be undertaken but it can be recommended a ‘wait and watch’ scenario be enacted. ‘Wait and Watch’ is very common. There are a couple of tests that can be conducted, but the safest, less invasive is a CT or MRI scan, both with and without contrast dye. Another, more invasive test, is an intracranial pressure (ICP) test, where they drill a hole in the skull and place a monitored pressure gauge within the skull.

" Does it mean that very soon I might be totally impaired?" This is highly unlikely. I say this because as the pressures increase so do our symptoms. For me a headache, even a bad headache, is a daily occurrence. But if things increase from a headache to tingle in my hands and feet, to chronic issues with balance, to sight issues, to nausea and vomiting I know I need to act promptly. Now, these are my progressive signs that I have an issue, your signs maybe different. You will learn your own signs. Initially, every ache, every pain and I was ready to PANIC but I soon learnt which was ‘Normal’ (as if any of it is normal) and which were a sign to act. I may seem to make this sound easy or simple, it ain’t and we know that, but… …the less stress, the better.

Merl from the Moderator Support Team

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Your avatar is up at the right corner of the page. Mine is one of our dogs, yours is an orange S. You will click on it and it opens up your information which you can edit

I don’t know if my Neurosurgeon can access Drop Box, you will have to call them. It may be that you will have your doctor send the information. I don’t really know but call them first during business hours which is Eastern Time in NC.

An MRI or MRA doesn’t inject magnetism into you. They may have injected contrast dye so they could see the brain and all the arteries better. If previous MRs did nothing to you, then it’s probably not the MRI or MRA. I’m surprised you could see anything from the MR machine but that leads me to think it was an open MR machine. You might be allergic to contrast dye, ask your doctor. Here is more information on MR imaging

It also sounds like you went to a teaching hospital. The hospital I go to is also a teaching hospital. The students know what to look for and the doctor oversees them. When I have my angiograms or coiling, there’s always a student or more watching.

I’m not understanding what type of scan you had after the MR so I can’t help you there.

You don’t need to start another topic on this issue, the one you’ve started is fine. Perhaps other members don’t have anything to add, or have not experienced the same concerns

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Hello Moltroub:
Thank you for your information. I will call your doctor Monday.
The reason I talked to you about magnetism, is because the radiologist said he must adjust the machine to 1.5t so not too much magnetism will go either on my head, or whatever. But he was concerned about magnetism due to my brain surgery with clips and other materials, such as screws, plates, etc.

I never had an MRI since my aneurysm surgery. Most doctors didn’t want to give it to me. But this doctor asked me for my medical records, clips references, and all the hardware. He studied all and then he said he can do an MRI under certain conditions, i.e. 1.5 t and that he had to monitor the magnetism. These were his exact words even by writing.

Thus, I had only one MRI for my back 2 days before the one on my head: I had no problemes regarding MRI on my whole spine. But it was done in another machine. He himself said that he will check the equipment in case something went wrong but he was not affirmative about that.

It was not in a student hospital at all. I know, I went to one in Boston for my teeth, and the work on my teeth was extraordinary. It was the root canal.

No, in France, it seems it is normal procedure. It is their laws and policies. Don’t forget all hospitals and care systems in France belong to the government. Nothing is private.They have social healthcare and this includes everything, scans and MRI included. But, as an American, I did pay the doctor as a private client (or patient as they call us in France).

Anyway, it seems that my head is not the same at all. I feel like if someone is pulling my skull (or perhaps the plate recovering my skull they fixed during my aneurysm surgery in 2013) away from me.

Well I especially wanted to know if someone with a brain aneurysm surgery, having clips and hardware like me, ever experienced something similar.

This because the neurosurgeon in Italy I consulted online said I didn’t have hydrocephalus, while the radiologist in France said I have it.

But thank you very very much for your kind assistance and interest. I hope everything goes well for you.

All the best

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Good luck!

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Thanks. You too.

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I have the same issue. My clip is 12 yrs old. Years ago my surgeon gave me a letter stating that the clip was ok for imaging. I’ve had at least 6 MRI over the years. The last I went for said I needed to get the brand & all the information your speaking of. Even called the hospital for the surgical record, it is not mentioned in there. They did not have to record it in 2007. So what do I do now?

19

Dear Debbie:

I had my surgery at the end of 2013. You said that you already had a few MRIs since your surgery. What’s new now? Why are you concerned about it just now? Also you have to analyse the benefits of an MRI versus NO MRI. Why do you need one? If you don’t have the references of your clips and all the hardware they put on your head, I would call the hospital or my neurosurgeon who did the surgery.

I would ask my doctor what kind of magnetism strength he will send? I understand they have 3T and 1.5T. The neurodiologist in France dit it on a 1.5T machine, at least it is what he said. But I wouldn’t trust him entirely. He left his assistant monitor the operation so she might have made some mistake while manipulating the command.

But of course, I cannot give you any advice. I am not a doctor. I only can tell you about my terrible experience, and this is in France, not in AMERICA.

For my part, I never had an MRI since my surgery. This was the first time, and this is why I am suspicious. Also, I had my MRI in France because while in my daughter’s home, I fell from a 6.2’ ladder all the way on my back to the hard floor. The French waited 3 months before prescribing even a scan. Only X-RAYS. Then I complained about my legs getting weaker, and then the MRI.

But America is not France, fortunately. They are not as advanced, and their equipment is older. Plus, because every hospital and medical center belongs to the government, they don’t have the same standards as in America.

Now, is it possible that the brain surgery provoque hydrocephalus years later? I don’t know. Also, who says that my ventricles were not damaged in some ways during surgery? Again, who can tell?

My concern, when I wrote the post, was that before the MRI, I had no problem at all with my head, or the weakness on my legs, or anything else. Now, I am almost on my way to become a kind of vegetable. It will be very helpful if other people would come out and tell about their experiences with MRI after brain surgery.

I hope everything will go smoothly for you if you decide on the MRI.

Please keep me posted. Thank you

Best regards

Sheila