My 2 cents on MRIs and getting told that one is crazy and your pain is not real

General General TN & GPN (Old Site)
1

Hi

I realized that there are a lot of stories about MRIs that did not show any nerve compressions or damage.

Regarding all these posts about MRIs and that nothing can be seen on most of them.

I had about 10 MRIs, before I did a "special" high resolution 3D MRI where my doctors could see a compression of the GPN.

First of all, most compressions or damages to nerves cannot be seen on an MRI because the "abnormality" you are looking for is way too small for the resolution of the MRI picture. It is like looking for the US flag on the moon with your IPhone camera.

There are some good MRI machines that take pictures at different angles and higher resolution and combine the pictures with 3D imaging software. Using such a machine will usually give you good results to visually identify the problem.

The next hurdle is that most doctors, even so called "specialists" have no clue about what they should be looking for on an MRI picture.

It is sad but most doctors are just useless if it is about GPN. Most doctors don`t even know that this condition exists.

Another problem is that most doctors have no experience with GPN and consult their textbooks. Most publications about GPN are a copy and paste version of some old book from the “stone age” and only mention ONE single GPN condition, which is the one with the temporary pain attacks. Permanent pain is not mentioned in most publications and there is the reason why it is so difficult to get a diagnosis, if your condition does not exactly mirror the textbook description of GPN.

A really good doctor/surgeon will spend a lot of time with you, talking to you and physically examining you.

Even if nothing shows up on an MRI a good neurosurgeon will perform a MVD or Rhizotomy surgery solely based on your symptoms.

About being told that you are crazy and your pain is not real.

There is also a big problem with patients being told that they are crazy and have mental problems, just because a lot of doctors have no clue about GPN and nerve pain in general.

I was told many times that my pain is not real and that such a condition does not exist at all.

I had surgeries with 2 different surgeons during the last 1,5 years. First they come up with a plan ... perform the surgeries according to their plan and if you are not fit by the end of the planed procedures, they tell you that you have mental problems and give up.

What I recently did, was to get myself thoroughly checked out by a psychiatrist who is specialized in pain symptoms. I attempted 10 sessions including a lot of talking, performing tests, hypnosis etc.

The result was … guess what ? ... I am not crazy and now I have a 7 page report including test results that clearly state that my pain is real.

The reason for doing this is, because when you are starting treatment with a new doctor, the entire Bla Bla Bla about mental illness and psychosomatic pain is off the table from day one.

I am telling you that this where the best spent 1000 Euro in my entire life.

Of course if you have mental problems and they are the source of your pain you will at least know what your problem is.

In my experience, doctors start talking about mental problems and psychosomatic pain as soon as they realize that they have no clue. That`s a convenient way for them to get rid of you.

Just my 2 cents on MRIs and getting told that one is crazy and your pain is not real.

Get well

Mike

2

Hi Mike,

You raise some interesting points above. I know I had a couple of MRIs then went and sought a second opinion with another neuro and she specified a different MRI image cut (closer together) and it was this that picked up an issue. Before hand though she flagged that finding something definitive wasn't the be all end all. It was more to rule out obvious other issues such as tumours or MS etc. I think its really important that as chronic pain patients we assert that the condition is physiological, not psychological. Has anyone got any tips on how they have managed situations where Drs have tried boxing the issue into the psychological basket?

3

Hi

MRI image cut is the way to go. My last MRI even did these image cut combined with taking pictures from 3 different angles and combining them with 3D imaging software.... great results.

I think you have a good point that an MRI is there to rule out things like tumors etc.

Invest the time and money and go to a specialized psychiatrist. Let him/her thoroughly check you out and do all the psycho tests available. Based on the talking and testing you will have to ask for a detailed report on your psychological status.

The report has to specifically mention that your pain is not caused by any psychological problem, psychosomatic or already chronical (without physical issues).

If you have no psychological problems then you have a proper paper that immediately stops any doctor to put you in the psycho basket.

I just started to pick up my treatment after a 4 month brake. I had appointments with 3 doctors to pick the most suitable and I will continue with him.

The psychological assessment helped a lot by meeting these new doctors, because from the very beginning they knew that the guy sitting in front of them is mentally healthy. We could skip all this psycho talk and new medication approach and could get straight to business :-)

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I would note that the MRI should take between 2-3 hours to do. Yes, seriously! This is so they can do thin enough slices as well as contrast. As Smiley stated it’s more to rule out other things like MS or tumors.

Also, I don’t think that most Drs know what to look for. My last Neurologist before my MVD was never convinced that I had GPN because it didn’t fit what he had seen symptom wise and he commented that the vascularization in my brain was great. Post-op Dr Horowitz told me that I had not just one, but two large arteries sitting on my nerves. “In fact” he said, “the largest I have ever seen before.” Yes, there’s that great vascularization!

The Neurologist was kind-of winding up to the “psychological” angle prior to my surgery. The one thing that I think helped was that my husband went with me to my appointments. There is greater weight to what you are saying if you are not the only one saying it. This is especially true if your symptoms come and go, they might not be there when you are in the exam room. The other is that I went above my Neurologists against his advice to consult with a Neurosurgeon, two actually. The first was local and told me he couldn’t help. The second at UPMC said - Yes, we’ve seen your symptoms before. I cried!

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Wow after 10 MRI's I would understand if you WERE crazy. That seems insane. However kudos to prevailing until it was properly done with the right MRI.

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Coming from the other side I think you are more right than you could probably possibly know. I have a pretty long history of having depression on my medical records. It's a mark of death, everything from eye rolling, to people walking in the room, looking at me for 10 seconds, and saying, "I've seen a lot of pain, but this is clearly emotional.'

If you have enough social capital, you can leverage it to get access potentially effected treatments. Do it earlier rather than later, as after years of living with this it will take an enormous psychological toll on you and you can end up battling for your life whether you had depression in the first place or not.

7

Amen Mike. I could have written this myself - 18 MRIs and finally had a "fiesta-series" and hey presto there's the offending vessel! Wish I'd had the foresight 4 years ago before I got into the first MRI machine to find out what kind of imaging it was capable of.

8

18 MRIs … WOW … die you have Surgery already? Did it help?

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I sought a second opinion from a reputable neurosurgeon and former professor. He re-did my contrast MRI with a 3 Tesla (AKA 3T) machine, which is supposed to be much more precise. Both he and my surgeon said they "saw something," which was the main reason I proceeded with surgery.

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Come to think of it, I did have an MRI and CT scan toward the very beginning of getting my issues. But it was like a 5 minute deal in a random hospital with no idea of what to look for. I'm sure it excluded a huge tumor at the time, but for any fine details would have been completely useless.

Reading the experiences of others here does make me realize I shouldn't be excluding possibilities based on quick low res scans of random people with no idea of what they are looking at. I'll be seeing pain specialists soon, so I'll try to be open with them.

Part of the problem I've found with doctors, is sometimes if you're too open and honest, they can become combative or rebellious, as sometimes they feel their authority is being usurped by informed patients who might stumble onto a 'self diagnosis.' They have words for things that patients do autonomously, like 'self medicating,' which in theory could be highly effective, but if the doctor doesn't approve or didn't make the call it can ruffle feathers.

I don't want any long term relationships with doctors like this, but everywhere you go they jot down more and more things in your medical files. I've had a couple of cases where doctors who felt 'usurped' by my autonomy would reach out to primary care and try to sabotage my health. A bad doctor is dangerous, even if you don't let them do whacky operations. For better or worse they have a degree of authority in western societies.

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Mike I’m with you on everything you said. As I look back on my 17 year experience of dealing with this illness, the biggest mistake I made was going to bad doctors early on and dealing with their egos and wrong diagnosis. I lived in Columbus, Ohio at the time and just assumed that I should be able to get adequate medical care in a city that large with a one of the biggest universities in the country. I was terribly wrong. I discovered bad doctors, probably due to their egos, were not willing to say “I don’t know”. Instead they would give a diagnosis that was wrong including saying my pain was psychosomatic. Since Columbus did not have a top 15 or top 10 medical center, they did not have doctors experienced enough in GPN. You would think they would have learned enough in medical school to at least say “your pain suggests problems with the 9th cranial nerve therefore you should go to a top medical institution where they see enough of these cases to give you better medical care”.

I have read many medical books and you are correct concerning the description of glossopharyngeal neuralgia. Many of these books give details that are mostly incorrect and assume medications and treatments for other neuralgias work on GPN. The treatments for GPN are different than other neuralgias. In the end, I decided to stay away from local doctors in general unless I knew their background and had someone refer me to them that had very good reviews. I only see local doctors that are willing to work with me on a personal level and are willing to follow the advice given to me by true specialists in GPN. If a doctor starts talking about psychosomatic issue, I never see them again. I decided it was in my best interest to go to a major medical center that specializes in GPN every year or two and find out what is the cutting edge in GPN. I say this as someone who already had a MVD of the 9th cranial nerve. Unfortunately, I had an atypical case that included complex regional pain syndrome (CRPS). This made it difficult early on to find the nerve in my head that was the main source of my illness. So I waited too long before having a MVD. If you wait too long, you run the risk of having permanent nerve damage. That is just my experience.

Gipp

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Gipp said:

Mike I’m with you on everything you said. As I look back on my 17 year experience of dealing with this illness, the biggest mistake I made was going to bad doctors early on and dealing with their egos and wrong diagnosis. I lived in Columbus, Ohio at the time and just assumed that I should be able to get adequate medical care in a city that large with a one of the biggest universities in the country. I was terribly wrong. I discovered bad doctors, probably due to their egos, were not willing to say “I don’t know”. Instead they would give a diagnosis that was wrong including saying my pain was psychosomatic. Since Columbus did not have a top 15 or top 10 medical center, they did not have doctors experienced enough in GPN. You would think they would have learned enough in medical school to at least say “your pain suggests problems with the 9th cranial nerve therefore you should go to a top medical institution where they see enough of these cases to give you better medical care”.

I have read many medical books and you are correct concerning the description of glossopharyngeal neuralgia. Many of these books give details that are mostly incorrect and assume medications and treatments for other neuralgias work on GPN. The treatments for GPN are different than other neuralgias. In the end, I decided to stay away from local doctors in general unless I knew their background and had someone refer me to them that had very good reviews. I only see local doctors that are willing to work with me on a personal level and are willing to follow the advice given to me by true specialists in GPN. If a doctor starts talking about psychosomatic issue, I never see them again. I decided it was in my best interest to go to a major medical center that specializes in GPN every year or two and find out what is the cutting edge in GPN. I say this as someone who already had a MVD of the 9th cranial nerve. Unfortunately, I had an atypical case that included complex regional pain syndrome (CRPS). This made it difficult early on to find the nerve in my head that was the main source of my illness. So I waited too long before having a MVD. If you wait too long, you run the risk of having permanent nerve damage. That is just my experience.

Gipp

Hi Gipp, I don’t think I’ve heard of complex regional pain syndrome (CRPS). Can you recommend a good resource so that I can learn more?
Did you have any sucess with your MVD even for a short time?
Thanks

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There are many sources of information on Complex Regional Pain Syndrome (CRPS) on the web. One of the better descriptions comes from the Mayo Clinic site found here:

http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/definition/con-20022844

Although I don’t typically recommend Wikipedia, they have a fairly decent description of CRPS as well on their site found here:

https://en.wikipedia.org/wiki/Complex_regional_pain_syndrome

This condition is not very well known by physicians. There are two types which also makes it more complicated. Type 2 is basically a nerve being damaged and the pain spreads to other nerves in that area of the body. So my GPN pain started with just throat pain but the pain spread to the other nerves in my face and head then down the right side of my body, head to toe. This made the diagnosis of GPN more difficult. My CRPS pain is minimal compared to my GPN but CRPS can cause horrible pain. Doctor’s sometimes refer to this as “nerve crosstalk”. Note, nerve crosstalk can also be described as “peripheral neuropathy” which makes the whole subject even more confusing. Doctor’s don’t know why some people like me get this nerve crosstalk and other people experience pain only with the damaged nerve.

Concerning my success with MVD. My neurosurgeon, Dr. Amin Kassam, then at the University of Pittsburgh Medical Center (UPMC), told me before I had my MVD that I would likely not have complete pain relief because I had the condition too long before have surgery. He gave me an academic article co-written by himself that showed the success rate of MVD goes down the longer you wait. From what I remember, I believe the success rate for complete or near complete pain relief drops drastically somewhere between 6 to 9 years upon initial symptoms of the condition. The success rate also is impacted by how badly the 9th cranial nerve is pinched. Like I said previously, I had an atypical case. I had constant right-sided head pain from 1997 to 2008, when I finally saw Dr. Kassam at UPMC. I also had daily episodic surges in pain that I would describe as excruciating and suicidal. The episodic pain symptoms are more associated with the typical GPN. Atypical GPN usually causes constant pain that may or may not involve episodic spikes in pain that are excruciating. After waking up from my MVD, I knew immediately that my pain was better. Since that time I have not had any episodic pain. So the MVD was successful from that point of view which makes my life drastically better despite the residual pain. My overall constant pain is also lower post-surgery. However, since my nerve was pinched for so long and because my nerve was “badly pinched” according to Dr. Kassam, I have permanent severe pain all the time on the right-side of my head. But I would highly recommend an MVD if you have GPN. The risk of permanent nerve damage is just too great to avoid surgery.

Gipp

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Hello Gipp

I totally understand what you are talking about.

I do have a similar problem to yours, GPN plus facial pain, occipital neuralgia.... basically my entire left side of the head; actually my pain is left sided head to toe!!

I traveled all over Europe and the USA to look for the right treatment and just before I wanted to give up, I met this incredible Doctor in my HOMETOWN (small town in Austria).

Right now we are in the "diagnostic phase" that runs for about 3 months. We do all kind of nerve blocks and also block several "nerve ganglions" to find the damaged nerves and affected "distribution centers". I also suffer from this "nerve cross talk" crap. 3 weeks ago we performed a GLOA-block of the so called "cervical superior ganglion" and by blocking this ganglion my entire pain on the left side of the head disappeared for about half a day.

Until now I responded to all blocks and by the end of March, we will decided how to treat the pain.

Most probably with several "(pulse) radio frequency ablation", but not only single nerves, but also nerve ganglions.

The guy has incredible knowledge and most important, he listens to his patients.

Get well

Michael

Ps: my GPN MDV made things worse.

15

Thank you Gipp.
I’ll look into your resources regarding CRPS.

I’m also interested in the paper Dr Kassam showed you. I had my MVD at UMPC with Dr Michael Horowitz after suffering for almost 5 years. I’ve was great for again almost 5 years when it returned, sadly it will be a year in April. I’ve done a great deal of research and seen mention of returning symptoms, but not anything on correlation of success with length of time prior to surgery.

You’ve given me some new things to think about.
Thanks