1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

SPECT Scan?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by I imagine, Oct 9, 2011.

  1. I imagine

    I imagine

    Messages:
    31
    Likes:
    1
    Sedona AZ
    I would like to get a SPECT scan since I know something is wrong with my brain. It feels like much more than brain fog. My Dr. said it's a waste of money but I really feel like it would help me to know if they find anything. Have any of you gotten pertinent info or help from having a SPECT scan done? I'm not sure what all they can detect but I'm starting to feel like I can't take this much longer so I'm looking for answers and comfort anywhere I might find it.
     
  2. mon me

    mon me

    Messages:
    54
    Likes:
    6
    I just posted this link on another thread about SPECT scans. It measures blood flow to the brain and it helps if it's interpreted by a medical professional who understands ME. Perhaps you could bring the info to your doctor. I'm not sure what can be done if there are abnormalities though, I would like to know myself.

    http://fm-cfs.ca/CFS_spect_scans.html
     
  3. I imagine

    I imagine

    Messages:
    31
    Likes:
    1
    Sedona AZ
    Thanks Mon ame, I read through the information and yes, if a SPECT scan shows that we have abnormal blood flow to parts of our brain, can anything be done about it? I guess that's the million dollar question.
     
  4. merylg

    merylg Senior Member

    Messages:
    764
    Likes:
    494
    Sydney, NSW, Australia
    Hi I imagine,

    I asked my Neuro about a SPECT Scan and he would not order one as he said it was low yield, I guess he meant in terms of being diagnostically useful. I would still like to have a SPECT because it shows blood flow to different parts of the brain. Agree that it would need interpretation by someone skilled in regard to CFS/ME.

    Neuro did request for me to have a Functional & T2 Flair MRI brain & cervical/upper thoracic spine. It shows a staggering amount of detailed cross-sections of your brain, taken from different directions too. Also shows circulation in detail, even without needing any contrast dyes.
    My scan included Cervical Spine and Upper Thoracic Spine as requested, too because I have some problems there.
    Here is just one example from the hundred or so pics. (They gave me DVD of whole series of scans). Yes there are things that can be done to correct circulation problems! Vascular malformations can be removed, aneurysms can be removed or clipped, by-passes can be done, if the veins from the brain aren't draining properly that can be fixed. If the arteries to the brain are blocked that can be cleared or by-passed.
    Good idea to have Carotid Artery Doppler Ultrasound to check for blockages of arteries in neck that lead to brain.

    I had some hyperintensities in brain MRI but they are not specific to CFS. They also appear in migraine sufferers. I suffer from migraine as well as chronic fatigue.

    image 601.12 (2).jpg
     
  5. helios

    helios

    Messages:
    61
    Likes:
    23
    Brisbane
    I had a spect scan done about 6 yrs ago. It showed I definitely had poor blood flow in my brain acccording to my doc and his nuero medical colleague. I was initially offered an alzheimers drug + another drug to help increase acetylcarnitine I believe. The alzheimer's drug was not subsidised and was quite expensive ($200/week) so I took it at a lower dosage and really never noticed any benefit. The doctor's main focus was on treating an infection which he believed was responsible for the blood flow irregularity, which he failed to succeed at. I have since seen another doctor, and showed him the spec scans and they did'nt seem to make a lot of difference with him, and he has not prescribed me anything specifically to deal with it.

    While it was worthwhile as it was great to have solid evidence in terms of explaining why I was having such difficulty with brain fog (of course doctors will differ in their interpretation of the significance), in the end unfortunately it was no breakthrough in terms of my treatment/progress.
     
  6. I imagine

    I imagine

    Messages:
    31
    Likes:
    1
    Sedona AZ
    Hi Merylg, Have you had any of these procedures done? They sound quite expensive but it's interesting to know that things can be done. It's also interesting that your Dr. ordered a different MRI as opposed to SPECT. I had thought that the SPECT showed more. Thanks so much for the information.



    View attachment 6376 [/QUOTE]
     
  7. I imagine

    I imagine

    Messages:
    31
    Likes:
    1
    Sedona AZ
    Helios-How frustrating! This seems to be the common story. Spend lots of money and get nowhere. Has your condition improved over the last 6 years?
     
  8. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    I think a Spect scan could be helpful for ruling out other diseases, such as vasculitis. But if the diagnosis of me/cfs is certain, I don't see the point because it's not going to give you information leading to treatment anyhow. If you need the data for disability purposes, then maybe it's a good thing.

    My Spect scan showed mild temporal micro-vascular insufficiency, but so what? It's part of the me/cfs and not directly treatable. I think the money would be better spent ruling out infections. It was treating infections that decreased my cognitive problems.

    MRI's are used to rule out other neuro diseases such as MS. You may want to look into this test first, especially if you feel you have something more than brain fog happening.
     
  9. I imagine

    I imagine

    Messages:
    31
    Likes:
    1
    Sedona AZ
    Hi Tristen, I'm in the process of getting more blood tests. I'll wait for the results and take it from there. How did you treat your infections? All I've done so far is take supplements and rest. The vitamin IV drips didn't seem to help and were outrageously expensive. It's good to hear that whatever you did helped with cognitive issues. Everything I try to do is a monumental chore and often it's impossible to do simple tasks like phone calls, etc. I feel dizzy, lightheaded most of the time. Is that brain fog? I guess it's hard to say but it feels much worse than that simple name. Thanks for the input
     
  10. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    Hey I Imagine, I'll PM you.
     
  11. SpecialK82

    SpecialK82 Senior Member

    Messages:
    897
    Likes:
    475
    USA
    My nuero refused to order a SPECT scan for me because he said insurance won't pay for it. Although we commonly hear that SPECT's don't seem to be useful to mainstream doctors, I still don't understand why. If it shows blood circulation is poor it would seem that it would send up a big red flag - something terrible is going on!

    I do not know why they aren't taken seriously. I wonder if normals had a SPECT done, if some would also show low circulation but have no symptoms? For some reason, the results aren't taken seriously.
     
  12. helios

    helios

    Messages:
    61
    Likes:
    23
    Brisbane
    "I do not know why they aren't taken seriously. I wonder if normals had a SPECT done, if some would also show low circulation but have no symptoms? For some reason, the results aren't taken seriously".

    I wonder this too. I know the doc who ordered my scan put great stock in it, in terms of proof that something is physically wrong, and I also believe he worked in conjunction with another nuero specialist to review the scans. He spent 45 minutes going over my scans with me. (I wish I had recorded what he said). I know mine was not good even in relation to his other patient's scans. It would have been good evidence for me if I was to go on disability, and it was great in terms of being able to have solid evidence to be able to account to friends/family why I was so mentally lethargic but otherwise it did not really make a lot of difference in terms of opening doors for new treatment. It would have been better if my poor brain blood circulation was actually to a degree where it could be given a label or a specific condition name. Other people/medicos would then take it more seriously. I am sure many people/medicos could say, oh yeah poor blood circulation, eveyone gets that as they get older. My doc talked about using something like heparin to reduce blood thickness, but he kept putting it off (which pissed me off). I notice my cognitive decline each year now
     
  13. kaffiend

    kaffiend Senior Member

    Messages:
    166
    Likes:
    122
    California
    Vinpocetine has been shown to improve blood flow in patient studies (post-stroke).
     

See more popular forum discussions.

Share This Page