MRI Frontal Sinus - what is the blob?

[hurts_2_much]

Frontal sinus headache has persisted for just over a year now.  Every week the intensity has been getting worse.  No pain medication is working.  

Got a MRI done and there is a white blob just above and between the eyes.  Might be mucus - but seems too much of a coincidence that the pain and white blob are in the same place - for the past year!

Any thoughts?

[hurts_2_much]

We are happy to report that since seeing the NUCCA specialist three weeks ago that our daughters' headaches have improved!!  What was daily chronic pain and suffering has now been reduced to lower levels of discomfort (headache is still there) and something that is bearable.

To describe the difference that he has made - on Friday night our daughter did some lifting and held a few things over her head (that she should not have been doing) that caused a relapse in her headache pain level.  Well on Saturday she spent the day on the couch, Sunday she was weeping and crying because of pain and Monday we could not leave her alone due to high pain levels.  Well - Today (Tuesday) we were able to get her another adjustment.  She went from a pain level of 8.5/10 to 7/10 in a matter of an hour.

We are thrilled and she is very relieved!  There is hope!

Thanks to everyone who has written comments, provided inspiration, listened and shared.  A special thank you to the forum for providing some context and for posting personal stories of misery, success, health care ideas and positive thinking.  It all helped.

We want each of you to know that you made a difference.  We hope our small measure of success will help someone else too!

hurts2much to hurtsless

[horselip]

hiya-
Wishing you both the best. I'm in California for a round of more tests this week...CT scan in an hour! CSF nuclear scan starts Monday.
I will  look up NUCCA as I don't know much about it.
Horse

[Londres70]

Glad to see things going in a positive direction and will continue to.

Please keep us posted; this NUCCA things sounds interesting.

All the best to you and your daughter.

[hurts_2_much]

Hi - the topomax was increased to 50 mg 10 days ago.  The anti-depressant was needed to try get our daughters hopelessness turned around.

After coming home at lunch and dinner time to tears and desperation (for about a week straight in mid April) we needed to act.  Already this week her outlook has changed.  We are hoping that a more positive attitude will contribute to the recovery.  We have a prescription for one month.  Our goal is not to renew it with the idea that her mental state will be better and we will have the worst behind us.

The NUCCA treatment was interesting.  The x-ray's and thermal images were interesting.  There definitely are several things out of alignment and the adjustment has helped with that already (her posture has improved and her leg lengths are equal now).  In a few days we will know what kind of impact will occur on the headache.

We will try a few more adjustments and then re-assess.  

take care - hurts2much

[Londres70]

The Topomax was not increased?  Why exactly was an antidepressant prescribed?

I have read about NUCCA treatment, but I do not know anyone who has had treatments.

I hope this is something that will help your daughter.  

Keep us posted.  

[hurts_2_much]

Well - we met with the family physician and we had to resort to anti-depressants for our daughter.

This week has been strange as the new meds seem to be creating tingles in her hands and feet.  She says she feels spacey!  The pain is still too high so no relief from that yet but at least she is a bit more upbeat.

Good news is that we are going to see a NUCCA specialist to investigate a possible connection of a neck/spine alignment problem and the headaches in the front of the skull.  It is likely a long shot - but at this point we have nothing to loose (at least that is what we hope).  

This guy does a thorough exam first - xrays, thermoimaging and sEMG studies.  

".... Motor nerves control your movement and posture and when disturbed can lead to abnormal tensions, weakness and fatigue.  This is assessed by specific postural analysis and by sEMG (surface electromyography). The sEMG reads the amount of electrical current in your muscles to determine how well your motor nerves are functioning and if they are symmetrical. This is extremely important because the vertebrae in the spine depend on the muscles to move properly.  ...."

"...Autonomic nerves control all of your organs, immune system and glands (hormones). Thermography measures temperature differences.  ... "

After further analysis (a few hours) the doc determines if any treatment is necessary and if so what is the expected outcome should a treatment be applied.

This work is semi-guaranteed to generate improvement or it is not performed.  Of course nothing is perfect in the medical world but the tests, the plan, and the results are measurable.  This doc will take follow up assessments after the treatment to measure the direct impact and to determine if the treatment had any immediate effect.

We are looking for results - so if there is no benefit - we will be asking for a partial refund!

If the treatment works, the way it should, only a few follow up treatments will be needed.  We do not plan on becoming a weekly patient.

Well - that's it for now.

If anyone has had experiences with NUCCA treatments please share.  

hurts2much

[hurts_2_much]

This is great information - thanks so much for sharing.  We will follow up on the CSF-Topamax connection - thank you.  

The ENT called this afternoon and confirmed that he, his team and the radiologist feel that the MRI is normal - ie - frontal sinus and the "blob/entity" are mucus and drainage is fine.  Frustrating that we don't have a cause but thankful for the personal call/service and the follow up that the doctor has given us to rule out the frontal sinus concern.

We will see our family physician tomorrow.  Likely nothing new - but more conversation and possibly a game plan for "what to do" when our daughter has really bad days.

No word on the pain center yet.

thanks so much for sharing - hurts2much

[horselip]

Hi again-
Topamax decreases the qty of CSF as it has a diuretic effect. IF you are noticing any changes it is certainly worth asking about!

I had more clear CSF symptoms..headache improves when I lie down, Topamax made things worse not better, headache improved when I had a headcold (sinus swelling=leak plugged up more), had a bout of meningitis and then I had transphenoidal pituitary surgery which carries a risk of me having a leak from that surgery.

Med-wise there are options. A good pain center will do a full history & evaluation to try and get your daughter some relief. The meds are tricky and very individual. What works for me may not be what is best for someone else. It is the pain center where I go that is driving my treatment to try and figure out why I am having the headaches so that we can hopefully find a way to fix the problem (or part of it) while trying to keep me somewhat comfortable.

Horse

[hurts_2_much]

Thanks for your comments/suggestions and questions.

To date we have not been to a pain management center.  It was suggested a couple of months ago and the request has been made.  It just takes a long time before she will be seen.  We will check on this to make sure that the request has been made and try to determine where we are in the "que".

It probably makes sense now that we may have to go a different route (hospital) for pain relief since, at the rate the pain is increasing, the pain management center appointment will not come soon enough.  

Your question about pain relief by laying down and a CSF leak is interesting.  Back in Dec/Jan we were suspicious that this may be happening but she did not have the classic signs (relief when she did lay down for example).  We wondered about either too much CSF or not enough and if so - why?

At about the end of Feb the neurologist did a spinal tap to measure pressure and to check for "normality" of characteristics of the fluid.  All the tests were negative/normal and her pressures were normal.  The really upsetting thing is that it took her nearly a month to recover and we thought before doing the procedure "how could things get worse - ie worse headaches".  Boy were we wrong!

Since the ST her headaches are worse, she was on bed rest for a week somewhere in there, she is still nauseated from time to time (likely due to pain), and occasionally still gets a head rush when she gets up too fast.

A new one for today was she had persistent tingles in her hands, arms and face for a couple of hours and once she sat/laid for a while the sensations trailed off quite a bit.  As we stated the tingles were a new experience - at least this wide spread - so we will be monitoring that.

We are a bit suspicious of the topomax but ...... we have to keep trying something.

We will investigate your suggestion of oxycontin and hydomorphone.

Thanks for the posting.

hurts2much

[horselip]

Hi-
I feel for you and your daughter. I have a few thoughts.

While this is all getting sorted...I wonder if you might have your daughter evaluated by a pain management center?

You mentioned above that no pain medication is working but then later you say that she may be hospitalized for pain control and that you are looking to more drug intervention. I've been working with a Pain Management Center for my constant 4 plus year old headache while hovers around a 6-8. I do get some relief (2-4) from a combination of Oxycontin and Hydomorphone. While I am not thrilled with having to use these meds I don't think that I would be sane without them as headaches are very debilitating.There are tons of combos and other meds too,

Do your daughter's headaches improve at all when she is laying down?
Has a CSF leak has been ruled out?

ok- just thought I'd ad my two cents :)
Horselip

[Londres70]

I am so sorry you have not gotten any definite answers.  I really thought for sure this "thing" was situated in the frontal/ethnoid sinus area and that is was a mucous cyst; the cyst or "thing" looks a good size.  

Well, she just might have to be hospitalized for pain control unfortunately.  Hopefully increasing the topomax will do the trick; poor child.

As a mom, to see your child in a situation that you can't find any solutions to help her is VERY difficult.  

Keep us posted honey and try to hang in there.  If there is anything I can think of to help you I will let you know ASAP.  

The best always.

Bonjour!  :)  

[hurts_2_much]

We got our call from the ENT specialist today.  He told us that after consulting with a colleague it is the general opinion that the frontal sinus area is not a concern (despite the "blob").   It would appear that the entity is simply mucus and that some drainage is still occurring.

Our ENT will consult with another radiologist specialist for one last review/confirmation to be sure.

So it would appear that we are back to ground zero now for our daughters headaches.  We had a bit of hope that the frontal sinus was the problem zone with all the ideas and suggestions posted here.  This was important - so thank you for all the support!  At this point the pain/discomfort is still focused between her eyes as an upside down triangle.

Next steps are to likely redo an eye exam, up the topomax, investigate more drug intervention and then see what happens next.  At some point we will do another MRI to determine if the entity is getting bigger/smaller and likely ask for more opinions/interpretations if the size of the image has increased in any way.

We don't have much hope now for any relief as no meds have worked up to this point.  Not to be discouraging, or to start a pity party, but the reality now is that she will likely soon be hospitalized for short periods of time to administer some type of regulated care for the pain.  Maybe a miracle will happen and this nightmare(s) will be over.

Thanks to everyone who has commented, contributed, prayed and cried.

hurts2much

[hurts_2_much]

Our daughter still has a lot of pain.  We are hoping to get a bit more direction this week.  

The suggestions of a cyst have been good as other pics in the MRI show a small focused white spot about the size of two pencil leads right in the middle of her eye brows about a 1/2 inch in.  It may be nothing but it is something small to hope for as to the cause of her frontal headaches.

Yesterday she described the pain as upside down triangle between her eyes with frequent "shooting/lightning" type of pain on her right side above her eye up to her hair line.  Yikes!

At some point our ENT specialist may choose to investigate the frontal sinus a little more closely.  Do  you know what the latest technique is to do this?

hurts2much

[Londres70]

Oh, so sorry she is going through this, so young and all she can do is lay on a couch because of the pain.  

Sinuses can affect alot more than what most people think.  

Keep us posted.  

[hurts_2_much]

This is great news!!  Another idea to pursue - thank you!

We have been very suspicious that her frontal sinus area was part of this problem but did not know to ask about "mucous cysts/seal".  This idea makes sense if you think of the gradual pain increase over the past 12 months.  It may also explain why she had one pain free day last August too - if there was a temporary "release" of mucous from the frontal sinus area.

We will do more research on the idea/suggestion.

I/We agree that there is likely no infection due to her "lack" of infection symptoms (fever and odors).

We have not heard from the ENT yet - but it won't be long.  

Thanks for clarifying left and right on the MRI.

This week Amber has spent a lot of time on the couch trying to survive the pain.  She is having a lot of trouble standing now and cannot read/watch TV for long periods of time due to lack of concentration/focus.  Needless to say her situation is very serious.

We have a family doctor appointment next week and with some luck the ENT will have called/reported by then and we can formulate the next plan.

Thanks again for the feedback and support.

hurts2much

[Londres70]

When you look at the MRI, go by the patient's right in regards to the positioning of  the "entity."  Positioning is always according to the patient's not the viewers.

Secondly, after reading the posts, etc., I would guess it is a mucous cyst/seal involving the right frontal/ethmoid sinuses causing the headaches.  I don't think infection is involved at this time.

Just a guess.  I will leave the true/appropriate diagnosis to the ENT specialist.

Keep us posted.  You are getting closer to resolving this.  :)

[tonyad]

  Hey there, I have not forgotten about you :)
I have been a bit ill but will be back Thursday to comment on what you had posted to me on the 19th.

TTYL,
~Tonya

[hurts_2_much]

We have been reviewing other discussions in this forum and we are learning lots.  Thank you for the comments and the time that you are investing - can't say enough how much it means to the family(s).

I was a bit confused on left and right as we looked at the MRI.  I was thinking that since the "entity" appears to be on Ambers "left side" (as she would standing looking forward) that would be the notation.  By your comments, and those on the image, it must be read meaning that you are "looking" at her and the "entity" is on the right side of the viewer - not the patient.  Right?

update - We received another opinion from a radiologist yesterday (20th).  This was their wording:

"Findings:

There is no focal abnormality within the gray/white matter.  The midline structures are within normal limits.  There is some musosal thickening at the level of the frontal recess on the right, as well as mild mucosal thickening in the adjacent right frontal sinus.  Otherwise, no significant abnormality.

Impression:

No significant etiology for headache seen intracranially, A mild to moderate degree of right frontal sinus mucosal abnormality.  Correlate with possible sinus headache."

So - it now appears that Amber's headache may be sinus related.  Any thoughts/ideas?  Supports my theory since the intensity has been increasing every month since last April.  She has no odors though and does not have fevers thus the sinus infection does not seem to be presenting properly.  Is it possible to have a sinus infection without the fever and odor?

You will be pleased to know that we are tracking down our ENT specialist this week and hope to have another interpretation of the MRI from that specialist in the next few days.  We are keeping our fingers crossed.

Thanks again - hurts2much

[Londres70]

I am so glad you got an Addendum with answers to what is going on.  I thought and stated in an earlier post that the problem was in the right sinus cavity; you can see it on the right in the MRI you posted.  

All the best.

[hurts_2_much]

Hi - just wanted to share a short update on Amber's MRI.

We asked for another review of the MRI image on Monday.  Here are the results:

"Addendum: At the request of the referring physician the examination was re-evaluated.  Noted within the anterior right frontal/ethmoid sinus (We thought the "entity" was on the left not the right) is a multilocular area of elevated T2 and FLAIR signal.  The entity likely reflects retained fluid (this means mucus right??) within the sinus complex and its significance is unclear.  Although this is not infrequently (does this means often???) seen and it mostly reflects fluid retention/focal mucosal thickening a small ethmoid mucocele would be difficult to exclude.  Clinical correlation and imaging follow up may be of value."

We were wondering about a couple of the phrases in the interpretation - "retained fluid" and "not infrequently" - can you offer any clarification?  Also - is the entity/mass/mucus on the right or left - we thought it was on her left side.

Our final questions are - what does "Clinical correlation" mean/refer to in this case and do you have any suggestions for what to ask for regarding "imaging follow up" and what would be of "may be of value" with selected follow up tests.

thanks - hurts2much (for sure today!!)

[hurts_2_much]

Thank you for your comments and suggestions!

Sorry to read that your daughter has had to live through a similar experience - yikes.  Our daughter does not have "bulging eyes" just the constant headache (at this point).  We will consider your med suggestion as well.  Since the pain is constant (and increasing steadily over the past 12 months) it just not seem like a migraine.  Thus the reason for asking about the "mass" on the MRI.

Our plan of attack over the next 2 weeks is to get some more opinions on the MRI interpretation.  As we mentioned near the beginning it just be mucus - but if that is the case in another few weeks a second MRI should show the "mass" either getting smaller or gone all together.

Our daughter has reported some interesting sensations in the last week or so as her head now feels like it is "imploding" instead of "exploding" and we are not quite sure how to interpret this one either.  Could be the topomax though as the sensation change happened around the same time she started on that med.

thanks again - we will try to report back to the forum if/and we learn more.

Please know that you have made a difference - hurts2much

[tonyad]

Hi there,
   I would think that Osteoma is NOT a thought either because osteoma presents itself through ocular signs and symptoms (such as proptosis) (meaning bulging eyes) Does she have that?

    The reason I asked about your daughters age is because one of my daughters was going through the same thing  (debilitating headaches etc.)  After several tests it was our Pediatrician of all doctors who prescibed her Sertraline (Zoloft) Yes, I know this drug is known for treating people w/ depression but...

OFF LABEL;
      For people who have migraines more than twice a week, their healthcare provider may recommend medications to help prevent migraines. While Zoloft is not specifically approved to prevent migraines, healthcare providers may prescribe it in certain situations. This is because, based on clinical experience, the drug has been shown to help prevent migrains. Using Zoloft to prevent migraines is known as an off-label use.

     Zoloft is an SSRI and SSRIs increase the extracellular level of the neurotransmitter serotonin by inhibiting its reuptake into the presynaptic cell, increasing the level of serotonin available to bind to the postsynaptic receptor. They have varying degrees of selectivity for the other monoamine transporters, with pure SSRIs having only weak affinity for the noradrenaline and dopamine transporter.

    My daughters headaches dissipated and now lives a normal teenage life. At first she felt a bit funny about taking it because it is classed as an Anti-Depressant and that was not her problem (although it can get depressing having chronic pain). When her pediatrician told her that she was using it OFF Label for her headaches than she did not feel bad. in fact she does not even mind her friends knowing she takes it........It sure beats the alternative!

      I hope that some of this information has helped you and that it can, in turn, help your daughter :)  Please keep me up on how things are going with her. I have her in thought and prayer.

Have a GREAT week.
~Tonya
ps...As a side note, i have MS and use several medications "Off label" for my treatment.
      I use seizure medication to treat my Neuropathy. and some other meds for different things but that's off track, I only mention it because I wanted to make sure that you understood that there are so many meds out there that can be use "Off Label" to help so many other things.

Take Care,
~Tonya

[hurts_2_much]

We are so appreciative of your comments and suggestions.  We were running out of hope as all the tests have been negative (and that is a good thing too of course) and there just didn't seem like there was much left other than to medicate (we are trying to avoid this if we can).  

By the way we did a spinal tap about a month or so ago and she is just getting over that (the tests were all negative).  Before we did the tap we rationalized "things can't get much worse" - but we were wrong.  She is getting stronger now and she is able to walk about and get up without the "head rushes" she had the first three weeks after the tap.

The neurologist insisted on putting her on topomax (25 mg) (he felt that the mri image was showing mucus) and we finally had to accept it since there was little left to try.  Our daughter still has had no relief from the headache pain.  Maybe with further investigation into the MRI image we will find something to "go after" - thanks to you we can try to think positive again.

Now your questions:

Our daughter turned 16 in February.  Her headaches do not appear to be influenced by weather, diet (she has been keeping a log for about 8 months now) or her periods.  In September 2009 our family doctor tested for allergies and she has a few - grass, dust mites, horses, dogs/cats and few others.  Another point is that we tried T-3's and they would not touch the pain.  We have tried a few other meds - but nothing has given her any relief.

Why the MRI was being done:

"head, MRI"

"Clinical HIstory: Frontal headaches question mass pathology"

"Technique:  Sagittal T1, axial T2 axial FLAIR and axial diffusion weighted imaging of the brain is undertaken."

Not sure if this answers the question about hx/sx of the patient?

Another point:  We were thinking that her sleep deprivation may be contributing  to this situation too - and we recently tried melatonin.  In the last couple of nights she has reported sleeping "better" and not as restless and we are happy about that.

You mention "I would exclude any tumors in nature".  That is certainly reassuring.

Any thoughts on a small "osteoma" in the frontal sinus causing this headache discomfort?

Thanks - hurts2much

[tonyad]

    Quick question...how old is your daughter?  Is she a teeneager?
I would ask if the "reading Radiologist" has any expertise in reading MRI films
of otolaryngology.

    I would like to add that reading what you posted on your radiology report, I would "Exclude" any tumors in nature. One more thing.....If you look on your report it should say on the top (first) paragraph, why the MRI was being done and the hx / sx of the patient.  What does that read?

   I'll check back to se when you post that then give you my thought / suggestions / ideas, of how to hit this "Head - On"....(no pun intended)
~Tonya