It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Spinal Cord Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-07-2010, 08:57 AM   #1
Junior Member
(female)
 
Join Date: May 2009
Location: Wales
Posts: 42
janhad HB User
MRI results - please help!!!!

Hi - apologies for not posting for a while, but have been severely depressed with the ongoing problems with my neck! I have had to pay for copies of my mri scans (things are different in the UK) and would really like some help and advice from anyone who might feel able to help me understand more what is going on with my neck. I feel like my consultant is not explaining all to me and am due to go back to see them in a couple of weeks, so any help to understand the medical terms would be greatly appreciated.!!!!
MRI from December 2008 - "mild degree of cerebellar tonsillar herniation. Cervical cord apears normal. There is a degenerative retrolisthesis at c5/6 level with a resultant indentation on the anterior aspect of the theca without any cord compression or cord signal change. Neurocentral joint arthritis particularly on the right side at c5/6 is also present. Moderate degree of foraminal encroachment bilaterally as a result of these changes, this appears more obvious on the right. Facet joint arthritis is also present.

MRI from October 2009 - "retrolisthesis of c5 against c6 vertebral body with circumferential disc bulging abutting the spinal cord and causing mild flattening particularly of the left and central aspect of the spinal cord. Moderate narrowing of the right and moderate to marked narrowing of the left intervertebral foramen. At c5/6 circumferential disc bulging leading to mild narrowing of the left intervertebral foramen. The c6/7 foraminal narrowing on the left seems to have slightly increased.
Opinion - c5/6 subluxation with cord abutment and deformity and particularly left sided foraminal narrowing. C6/7 disc degeneration and minor foraminal narrowing. Posterior osteophyte formation.

Feel a little confused as on the second mri there is no mention of the cerebellar tonsillar herniation - what is this? Also cord abutment and deformity - what is this?

Any help would be welcome and sorry for the length of this post!!

 
Sponsors Lightbulb
   
Old 02-16-2010, 11:38 PM   #2
PNo PNo is offline
Inactive
(female)
 
Join Date: Jan 2005
Location: USA
Posts: 1,197
PNo HB User
Re: MRI results - please help!!!!

Hello - it looks like this moved down in the forum with no replies - I can't stay now, but will make sure to see if I can answer any questions when I come back in a day. This will bump it higher again - maybe someone will jump in.

PS - I am sorry you are feeling down about this - I know how that feels - take care of yourself. If you have time could you add in your symptoms!

Last edited by PNo; 02-16-2010 at 11:40 PM. Reason: last sentence add

 
Old 02-17-2010, 06:15 AM   #3
Junior Member
(female)
 
Join Date: May 2009
Location: Wales
Posts: 42
janhad HB User
Re: MRI results - please help!!!!

Thanks Neckpatient for taking the time to post - I have ongoing pain (intense tooth-achey burning) in the right side of my neck - the rest of my neck constantly hurts to move in any direction at the moment. I have horrendous pains from my shoulders down to my elbows, wrists and my fingers (middle, next one and little finger). Trouble now gripping, twisting and opening jars and cans etc. Also pain when writing. Life is not good at the moment - taking antidepressents, anti-inflammatory pain relief, also on transdermal patches. Have also been having pains in my legs, thighs, knees and my legs feel constantly like I am dragging them around. Horrible tinnitus in my ears and head - I can hear my heart beating - worse when I do anything remotely physical - even bending down! I had posted last year, but had felt really low and did not want to bother with anything. But really feel the need to have some input from those that have been here etc. Worse of all is the constant pain - last year it was pretty bad, but not constant - now I feel like I can't escape it. Am due to go see my consultant in the next few weeks, so will need to stress how bad things are - guess I just didn't want to face up to the fact that things had got so bad. Any advice would be great. Have had physio, acupuncture, hydrotherapy and massage all last year and didn't get any relief, so don't want to go down that route again. Hope you can point me in the right direction? Thanks in advance. Jan.

 
Old 02-19-2010, 05:39 PM   #4
PNo PNo is offline
Inactive
(female)
 
Join Date: Jan 2005
Location: USA
Posts: 1,197
PNo HB User
Re: MRI results - please help!!!!

Well I thought about it a couple days. I have not had cerebellar tonsillar herniation so I don't really know much about it, other than what I have read, possibly it receded back and didn't show on the 2nd MRI? There are lots of reasons to have a this condition - possibly obstruction of cerebrospinal fluid (CSF) was happening for you. I know it is something they would want to follow, did you have the MRI's at the same place? Generally I think even minor cases they are going to call that out - so it must not be there - ask the doctor when you go. Between the two MRI's did you have a change in any symptoms? This condition can present as stiff neck type symptoms, and also a slight tilt - these symptoms can also come from the other stuff going on in your neck.

On the cord part of your question abutment and deformity. Abutment means up against, and the deformity is the mild flattening of your spinal cord that they call out. When do you go to the specialist? I think they are going to recommend surgery and based on all your symptoms and the things you already tried that is probably a decision you are going to need to make.

As for your mood, it is something most of us go through. I am so sorry you are having a tought time. Sometimes there is strength in learning about the problem and feeling like you understand it and having some control. I always found when my pain levels are staying too high it makes it difficult to control my mood.

Take care and let us know what the specialist tells you.

 
Old 02-23-2010, 09:50 AM   #5
Junior Member
(female)
 
Join Date: May 2009
Location: Wales
Posts: 42
janhad HB User
Re: MRI results - please help!!!!

Many thanks for your kind reply - it does seem that my mood gets worse when in a lot of pain and I think that its hard to come to terms with. I have come to a point where I go to bed hurting and wake up exactly the same and the pain meds are not helping me at all. Hope you don't mind me asking but did or have you similar problems going on and how do you cope with the stress of high pain levels? Any help or advice would be really appreciated. Look forward to hearing from you. I will post again after my appointment with the consultant. Thanks.

 
Old 02-23-2010, 12:20 PM   #6
PNo PNo is offline
Inactive
(female)
 
Join Date: Jan 2005
Location: USA
Posts: 1,197
PNo HB User
Re: MRI results - please help!!!!

It is not a simple answer. Yes I have had the same type problems and it has been a long 5 1/2 year road for me. After my first surgery I was 100% fine and back to work in a hectic schedule. Not more than 9 months passed and symptoms showed up again, and it turned out my other levels were degenerating. Not long after that my thoracic and lumbar joined the party. I was depressed from the pain, but also sad from needing to let go of a wonderful career I had worked my whole life to achieve. After my second surgery I spent one very miserable year mood wise, crying pretty much daily. In my experience I found that when my pain levels got to a more controlled level, my mood improved significantly. I think finding a good pain management specialist is really important.

I was reluctant to move to stronger medications, but with coaxing from my pain management team, I went from using short acting medications like percosete to long acting, strong medication Fentanyl patch with break through medicine as backup. When using the short acting type medication there is a roller coaster affect and my pain levels were making huge swings where I would be a 6 then an hour later an 8 and crying, and this would cycle all day, and it was just not helping me, and I was sleeping maybe 2 hours a night. It sounds like maybe this is where you are. Getting on the right mediction for your condition is important.

I enlisted the help from a pain psychologist because I wasn't accepting my condition very well. I was seeking doctor after doctor desperately looking for the "fix" to my spine problems. Hearing the same answer over and over - this is permanent and we can't "fix" you. Pain psychologist sounds scary but it is just another tool in our bag of tricks to deal with pain. She taught me good relaxation exercises and I use them daily to help when pain starts climbing, and I use them at bedtime. She also taught me to understand the pain and accept my condition.

I still have pain and if I do too much activity I can easily be an 8 and crying again, but the current regimine they have me on keeps me around a 4-6 most days and I have learned what things work best for which thing that hurts (i.e. ice, heat, rest, relaxation, exercise, stretching). I am no longer afraid of the pain and know that sometimes I am going to hurt - I choose my activities and make sure they are "worth" it, because I know I am going to hurt.

You see, I totaly understand where you are right now, but I want to offer you hope and encouragement. It is early in your diagnosis and quite possibly they will have a good solution for you. The key is to try to get you more comfortable while you and they figure it out. If your current regime is not helping you need to have a good discussion with your doctor.

 
Old 02-24-2010, 08:49 AM   #7
Senior Veteran
(female)
 
Join Date: Mar 2009
Location: East Coast, VA, USA
Posts: 553
Ilovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB User
Re: MRI results - please help!!!!

\

A Pain Psychologist or Therapist..(I go to a Pastoral Counselor that is free) is a big piece of the puzzle with those of us dealing with chronic pain conditions...It's both a mental and physical toll on the body day in and out...and we have to everything and anything to help deal with that pain...

It becomes a trade off for things that we really love to do...as NP said...I have to make sure that the activity is 'worth' the pain the next few days...But without doing joyful things...there really wouldn't be a point...

I also have found that reaching out to help others in need...helps me take my mind off my own pain..If I were to spend everyday just sitting and thinking about how much I hurt..it would be awful!

I use every modality that is offered, therapy, meditation, acupuncture, kinesiotherapy, aqua therapy, medications, cognitive behavioral therapy, biofeedback, etc...

It doesn't make the pain disappear..but can certainly help 'manage' it on a daily basis...Used alone...it doesn't seem to work..but putting them all together..can reduce the pain..

I truly hope that you can get the help you need as it really is a huge adjustment learning to live with chronic pain if it's something that the Dr.s can't 'fix'...

I am sorry you have to deal with this...

Take care..

Last edited by Administrator; 03-21-2010 at 08:57 PM.

 
Old 02-25-2010, 10:33 AM   #8
Junior Member
(female)
 
Join Date: May 2009
Location: Wales
Posts: 42
janhad HB User
Re: MRI results - please help!!!!

Thank you both so much for your kind and informed replies - have just returned from appointment with orthopaedic surgeon and they have told me that they think that the best course of treatment at the moment is to go ahead and have surgery to sort out my neck problems. The consultant said they will operate but cannot guarantee that it will stop my neck pain, but the radiculopathy should be helped. It was also pointed out to me that the levels above and below the "bad" bits in my neck are degenerating the same way! so will need surgery again at a later date (or that was suggested). I am not bothered at the moment as I just need a little respite from the constant pain. I have also had for the last few months problems with my lumbar spine, so the consultant wants to try to sort out my neck, then proceed to my lower spine. Apparently when one part of your spine is affected it can have a knock on effect with the other parts ie. thoracic and lumber, so its usually just a matter of time before the other parts go - didn't know whether to laugh or cry!! Seems like its a double edged sword - they can help a little, but can't guarantee a success. I have got to the point that I know I need the surgery, just have to face up to the fact. With regard to your kind words about the pain when doing something remotely physical - I do try to carry on as much as normal, just that when I overdo it I definitely know about it. I have never been one to just lie down and have always had I hope a fighting spirit. Just need this to keep me going a little longer I guess. Anyway will keep you posted of my progress and have been told that the surgery will not be done until Summer - good old British NHS for you. Could be worse I suppose, at least there is a chance that the surgery will work, even though you don't know how long it will keep the other demons at bay? I will look into contacting a pain counsellor, as it seems such a good idea, as well as the other therapies mentioned. Take care and thanks again both of you.

 
Old 02-25-2010, 01:50 PM   #9
Member
(female)
 
Join Date: Jan 2010
Location: England
Posts: 63
ces59 HB Userces59 HB User
Re: MRI results - please help!!!!

Hi Janhad

I am from the UK - same sort of problems. I am just waiting for surgery - have been told it will be mid March now. I tried for months to carry on as normal but have been off work since the start of the New Year. My arms are what has been affected most and it is difficult to do anything without using them! It has helped being off work and as others say you plan what you can do and how much because you know you will pay for it. Typing this is very painful for me. Although I have spinal compression it is the pains in the arm I want to go away but there is no guarantee. My advice is to try and reduce how much work you do, get fitter (on your terms and without pain) try to improve your mood - a positive attitude and view has to help. I just want it all over now and it is heartening to read others post op experiences - nearly everyone is positive and feel they are getting their lives back. Stay in touch. By the way I have had no advice about pain management here in the UK - I had to ask my GP for Gabapentin - the consultant has not offered me anything.

 
Old 02-26-2010, 05:30 AM   #10
Junior Member
(female)
 
Join Date: May 2009
Location: Wales
Posts: 42
janhad HB User
Re: MRI results - please help!!!!

Hi ces, good to hear from you, although not good to hear that you are in the same situation as me, but will be good to hear how you go on. Hope that your surgery goes well and we are nearly in March now so not too long to wait. How long have you been suffering with your neck and how long before you were offered surgery? Hope you don't mind me asking these questions, just be interested in how others are treated by the medical profession. My family doctor is really good and has now put me on Butrans transdermal patches, along with other pain relief (except codeine based as these don't mix), but am still having incredible amount of pains in neck, arms, shoulders etc. Think that at my next visit to my doc will ask about the Gabapentin as I have not heard about this medication. Which level of your neck are they operating on - mine is C5/6/7 I think! Like you said you get to a point when you can't go on much longer and I think the surgeon finally saw how it was affecting me on my last visit. Before I had been one to just put up with pain etc, but not any longer! Hope all goes well for you and let us know how you get on with the surgery and recuperation. Janhad.

 
Old 02-28-2010, 06:29 AM   #11
Member
(female)
 
Join Date: Jan 2010
Location: England
Posts: 63
ces59 HB Userces59 HB User
Re: MRI results - please help!!!!

Hi Janhad - my problems started last July and I did nothing about them for 2 months - thought it was repetitive strain injury - my only real pain is the scolding/burning pain in my lower arms. When it did not go after a two week break from work I went to the GPO. The GP put me on Diclofenac in September but it did not help. I took myself off for osteopathy but that did not help. Meanwhile another GP thought steroid injections in my arms might help but when I went for them to the GP I saw another GP who said it was my neck and would not do the injections. This GP sent me for an X ray in October. Results showed degeneration from C4- C7. In spite of this the GP sent me for physio. But the physio was not happy to do anything and asked another physio with neurological skills to see me. She was not happy to do anything either. I then took myself off to a Chinese doctor who asked for the doctors diagnosis. I got a copy of the Xray for her but she said where is the MRI? I did not even know what one was! She said ' you have not had a proper diagnosis' and suggested I go back to the GP. This was December and I had seen 5 GPs by then, none of whom had diagnosed my problem or helped me to deal with the pain - which had not really got worse, but did not go away. I had some acupuncture to deal with the pain but it did not go away. By December I went back to my GP and told her I wanted to go private and wanted a referral for an MRI. She said 'we can do that for you under the NHS' I was really annoyed as by then I had had nearly 6 months of pain. I then asked how long I would need to wait for an MRI - she said 2 months so I went private ( I have a policy but with a big excess). The neurologist I saw was very clear and I got his evaluation the day after Boxing Day. He then referred me to this neurosurgeon who I understand is well respected. I am having the op privately but he said it would not have taken much longer on the NHS as the op is essential. I have however spoken to someone who he operated on who had it done on the NHS and she had to wait 11 months from diagnosis to her op. I think it is just because this surgeon is so busy. Any way the date is the 10th March. I am pretty terrified having only ever had one general for a much more minor op. All in all I cannot say my GP helped me at all. The problem is you see a different person every time and you have to go through all the details time and time again.

With regard to Gapabentin it was my brother who suggested this and it fits well with the pains that I have which are neurological rather than aches and pains. However, I had to suggest it myself. I hope you have had better treatment - I now feel happy with the quality of the neurosurgeon - he put my mind at rest and was incredibly thorough but I had to go through months to get to that stage. He asked me if any of the GPs had actually examined me - they had not - he explained that if GPs had performed some of the simple tests he had done then it would have been obvious. I don't think the training for GPs is adequate - if you anything out of the ordinary they cannot manage. My GP told me she had never had anyone with this problem before. However, I am grateful to have full understanding now - I cope better with the knowledge than with the months of not knowing. I wondered if I had MS, tumour etc during that time. Well must go - painful arms from typing this!!!!!

 
Old 03-01-2010, 08:10 AM   #12
Junior Member
(female)
 
Join Date: May 2009
Location: Wales
Posts: 42
janhad HB User
Re: MRI results - please help!!!!

Quote:
Originally Posted by ces59 View Post
Hi Janhad - my problems started last July and I did nothing about them for 2 months - thought it was repetitive strain injury - my only real pain is the scolding/burning pain in my lower arms. When it did not go after a two week break from work I went to the GPO. The GP put me on Diclofenac in September but it did not help. I took myself off for osteopathy but that did not help. Meanwhile another GP thought steroid injections in my arms might help but when I went for them to the GP I saw another GP who said it was my neck and would not do the injections. This GP sent me for an X ray in October. Results showed degeneration from C4- C7. In spite of this the GP sent me for physio. But the physio was not happy to do anything and asked another physio with neurological skills to see me. She was not happy to do anything either. I then took myself off to a Chinese doctor who asked for the doctors diagnosis. I got a copy of the Xray for her but she said where is the MRI? I did not even know what one was! She said ' you have not had a proper diagnosis' and suggested I go back to the GP. This was December and I had seen 5 GPs by then, none of whom had diagnosed my problem or helped me to deal with the pain - which had not really got worse, but did not go away. I had some acupuncture to deal with the pain but it did not go away. By December I went back to my GP and told her I wanted to go private and wanted a referral for an MRI. She said 'we can do that for you under the NHS' I was really annoyed as by then I had had nearly 6 months of pain. I then asked how long I would need to wait for an MRI - she said 2 months so I went private ( I have a policy but with a big excess). The neurologist I saw was very clear and I got his evaluation the day after Boxing Day. He then referred me to this neurosurgeon who I understand is well respected. I am having the op privately but he said it would not have taken much longer on the NHS as the op is essential. I have however spoken to someone who he operated on who had it done on the NHS and she had to wait 11 months from diagnosis to her op. I think it is just because this surgeon is so busy. Any way the date is the 10th March. I am pretty terrified having only ever had one general for a much more minor op. All in all I cannot say my GP helped me at all. The problem is you see a different person every time and you have to go through all the details time and time again.

With regard to Gapabentin it was my brother who suggested this and it fits well with the pains that I have which are neurological rather than aches and pains. However, I had to suggest it myself. I hope you have had better treatment - I now feel happy with the quality of the neurosurgeon - he put my mind at rest and was incredibly thorough but I had to go through months to get to that stage. He asked me if any of the GPs had actually examined me - they had not - he explained that if GPs had performed some of the simple tests he had done then it would have been obvious. I don't think the training for GPs is adequate - if you anything out of the ordinary they cannot manage. My GP told me she had never had anyone with this problem before. However, I am grateful to have full understanding now - I cope better with the knowledge than with the months of not knowing. I wondered if I had MS, tumour etc during that time. Well must go - painful arms from typing this!!!!!
Hi ces and thanks for taking the time to answer. Seems like you have had a very traumatic time with the medical profession offering little or the wrong type of help. It seems ridiculous these days that your own gp did not know about spinal problems and the fact that you get neurological problems in your arms etc through defects in your spine! Amazing really when you think about it. At least you now know that you have not a tumour or ms, but even so, degenerative arthritis is still not a good diagnosis as you well know with constant pain etc. Anyway you are now awaiting your surgery, so that hopefully will make things a lot better (fingers and toes crossed!). With my situation, I suppose I was luckier in having a gp who recognised that I was having spinal probs and sent me to see an orthopaedic surgeon after having xrays and then mri at the hospital, whereby I was diagnosed with degenerative arthritis, herniated discs and a retrolisthesis as well to add to the mix. After having physio whereby the physio refused to give me any hands on treatment, I had 2 courses of hydrotherapy and acupuncture - all on the NHS, as I was unable to go private. I then had a long wait (7months) before I then went back to the orthopaedic hospital, another mri scan, then another 3 month wait, whereby I am now, like you, awaiting surgery. I think I will have to wait until Summer before the waiting list gets down to me, but after nearly 2 years of constant pain, a little longer won't harm me (I hope). You must keep us informed of how you get on with your surgery, and don't forget that there are like-minded people here to help and offer advice. Take care and I hope that your surgery goes really well. Janhad.
PS am going to see my family doc this week and will ask about the Gapabentin, as at the mo, transdermal patches and painkillers are not helping me, so will be worth a try to get them on prescription.

 
Old 03-24-2010, 03:11 PM   #13
Newbie
(female)
 
Join Date: Mar 2010
Posts: 1
Waseb HB User
Re: MRI results - please help!!!!

Sorry to hear about the pain you have been in. I'm dealing with my own neck issues at the moment - C6/7 disc herniation/disc ostephyte complex with spinal stenosis, cord flattening and severe right formaminal narrowing. I don't have the cerebellar tonsillar herniation but I can tell you what it is - as my 11 year old daughter has that. It's called a Chiari Malformation. Basically the cerebellar tonsils hang off the bottom of the cerebellum in the back of the brain. Occasionally they will herniate into the space for the spinal column. Any herniation over 5 mm is of concern (my daughters were 17 mm). If they are pushing on the spinal column it can cause the lining of the spinal column to crack and cerebral spinal fluid to leak into the spinal column where it shouldn't be. This can cause severe headaches. From our research we found that actually 1 out of every 1000 people have this syndrom but for most people there are no symptoms and therefore nothing needs to be done for it. (my daughter ended up having to have the surgery). Good luck.

 
Old 03-31-2010, 09:56 AM   #14
Junior Member
(female)
 
Join Date: May 2009
Location: Wales
Posts: 42
janhad HB User
Re: MRI results - please help!!!!

Hi Waseb and thanks for replying and sorry to hear about your own neck problems. Just wondered how long you've been having these problems. Are you seeing anyone over them. Be good to hear of your experiences. With regard to the cerebellar tonsillation, I have not asked about this and it was not mentioned on my last lot of scans, so hopefully it is not important or big enough to mention!! I am just waiting for my surgery which hopefully will be taking place this summer. I am counting down the days until I get my admission letter as I am really fed up with taking all the pain medications. Anyway, hope that your daughter is well and that you are taking care of your neck. Hope to hear from you soon. Janhad.

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



WebDozer (268), jennybyc (197), Realhousewife (42), kenzibenzi (33), NJ Ldy (32), SpineAZ (31), teteri66 (23), frenchfri1003 (21), ladybud (20), feelbad (18)

Site Wide Totals

teteri66 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 12:00 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!