I'm a little confused and discouraged today. I thought my TN was related to my MS diagnosis but found out from the Neurosurgeon that he believes it's Type 1 TN. That's confusing to me, though, because I have pain on both sides of my face (more intense on the left).
Would love to hear your thoughts. I've been in tears much of today.
Thanks so much,
Vicki
You can have both MS and symptomatic TN, Vicki. Some MS patients have TN symptoms. If there are TN plaques on both of the trigeminal nerves, a case of bilateral TN can be the result. Treatment of the pain is much the same as for TN not associated with MS.
Aww, thanks, Jacob. Good to know I'm not alone but sorry you have to go through this, too.
I do have good friends and family so I'm thankful for that. I think counseling is next!
Hope your day gets better.
~ Vicki
Thanks for the information, Red. I had a recent MRI and the radiologist didn't see a compressed nerve, but the Neurosurgeon disagreed with his report and thought my trigeminal nerve was being compressed. He showed me how the nerve curved on my MRI. So now I'm unsure if I just have TN or TN related to my MS. I think the treatments and surgery options would be different for both, wouldn't they?
Thanks for caring,
Vicki
There is an MS group under the groups tab if that helps
Agree with Dancer that talking with other MS patients seems a good idea.
However to answer your question, Vicki: the surgical options for patients in whom MS has been confirmed are basically the same as for TN. But fewer neurosurgeons will attempt surgery for this class of face pain patients because the outcomes aren’t as likely to be positive. From what I’ve heard and read, if plaques are noted on the nerve during MVD exploration, there really aren’t any reliable procedures of micro-surgery that can remove them safely. If a vascular compression is found, it will be padded out from the nerve with teflon. If other members have heard otherwise, I’d like to hear about what was done.
Regards,Red
Vicki, here are some additional references that may shed some light on your options:
http://www.ncbi.nlm.nih.gov/pubmed/22840414
http://www.ncbi.nlm.nih.gov/pubmed/18614214
See also: http://www.ncbi.nlm.nih.gov/pubmed/20651626
Neurosurgery. 2010 Sep;67(3):749-53; discussion 753-4.
The effect of microvascular decompression in patients with multiple sclerosis and trigeminal neuralgia.
Sandell T, Eide PK.
Source
Department of Neurosurgery, Division of Clinical Neuroscience, Rikshospitalet University Hospital, Oslo, Norway.
Abstract
BACKGROUND:
Trigeminal neuralgia (TN) in patients with multiple sclerosis (MS) is thought to be caused by demyelinating plaques within the nerve root entry zone, the trigeminal nucleus, or the trigeminal tracts.
OBJECTIVE:
To review our experience of microvascular decompression (MVD) in patients with MS and symptomatic TN.
METHODS:
All first-time MVDs for symptomatic trigeminal neuralgia in patients with MS performed by the senior author during an 8-year period (1999-2007) in this department were reviewed. The preoperative pain components were differentiated as being 100% episodic pain, > 50% episodic pain, or > 50% constant pain. At follow-up, pain relief was assessed with a standard mail questionnaire; those still having residual pain were further examined in the outpatient clinic or interviewed by phone.
RESULTS:
Of the 19 MS patients, 15 were available for follow-up. The median observation period was 55 months (range, 17-99 months). At follow-up, 7 of 15 patients (47%) were completely free of their episodic pain, and an additional 4 (27%) had significant relief of episodic pain (ie, worst pain marked as 0 to 3 cm on a 10-cm visual analog scale). Among the subgroup of 8 patients with a constant pain component, all were free of their constant pain, and 4 (50%) were free of their episodic pain.
CONCLUSION:
In our 8-year experience of doing MVD in MS patients with TN, we found complete and significant relief of episodic TN in a large proportion of patients. Even those with a constant pain component before MVD were completely relieved of their constant pain. Thus, in patients with TN (with or without a constant pain component), the presence of MS should not prevent patients from being offered MVD.
http://www.ncbi.nlm.nih.gov/pubmed/16574557
Br J Neurosurg. 2005 Dec;19(6):463-8.
Some patients with multiple sclerosis have neurovascular compression causing their trigeminal neuralgia and can be treated effectively with MVD: report of five cases.
Athanasiou TC, Patel NK, Renowden SA, Coakham HB.
Source
Department of Neurosurgery, Institute of Clinical Neurosciences, Frenchay Hospital, Bristol, UK.
Abstract
The role of trigeminal ganglion percutaneous injection and radio-frequency lesioning procedures for the treatment of trigeminal neuralgia (TGN) in multiple sclerosis (MS) is well established. There is general acceptance that microvascular decompression (MVD) cannot be an appropriate treatment due to the view that the underlying aetiology is a demyelinating plaque affecting the root entry zone of the trigeminal pathway. Recently, MR-imaging has been used in the preoperative investigation of this group of patients demonstrating that neurovascular compression can occasionally be the responsible mechanism and that MVD can be the treatment of choice. We present five cases with MS and TGN. All the patients had failed to respond to medical treatment or percutaneous procedures. Magnetic resonance imaging demonstrated evidence of neurovascular compression in four cases. All the patients underwent MVD. Postoperatively four of the five patients made an uncomplicated recovery, were pain-free and fully satisfied with the result (mean follow-up 38.75 months; range 8-59 months). One patient developed recurrent pain 1 week following surgery and went on to have a total sensory rhizotomy. TGN in MS can be caused by neurovascular compression, which may be identified on MR-imaging. MVD has offered satisfactory short-term outcome for at least 2 years and does not inflict sensory loss. Longer follow-up will determine whether the outcome in MS patients will be as successful as in the TGN patients who do not suffer from MS.
PMID:
16574557
[PubMed - indexed for MEDLINE]
It is worth ( in my opinion) investigating if there could be a compression secondary to your MS
( in your situation I would get a 3rd opinion from a neuro surgeon)
Red, I was under the impression that MS plaques (demyelination of the nerve from MS) could only be seen by MRI, I didn’t think it was visual to the naked eye?
( microscope)
“during MVD exploration”
I believe a microscope examination should reveal plaques, Mimi. But I’ll check my facts on this. Ping me by private message if you haven’t heard by early next week…
Thanks
Red
This was so helpful and information, Red. Thank you! The neurologist believes I have nerve compression and possible MS plaques. The radiologist didn't note the nerve compression when he wrote up my MRI report, though, so there's a discrepancy in their professional opinions. I plan on making an appointment with another neurosurgeon for a second opinion soon.
Thanks again, Red. These reports make me feel more hopeful. :)
Have a great day,
Vicki
Richard A. "Red" Lawhern said:
Vicki, here are some additional references that may shed some light on your options:
http://www.ncbi.nlm.nih.gov/pubmed/22840414
http://www.ncbi.nlm.nih.gov/pubmed/18614214
See also: http://www.ncbi.nlm.nih.gov/pubmed/20651626
Neurosurgery. 2010 Sep;67(3):749-53; discussion 753-4.
The effect of microvascular decompression in patients with multiple sclerosis and trigeminal neuralgia.
Sandell T, Eide PK.
Source
Department of Neurosurgery, Division of Clinical Neuroscience, Rikshospitalet University Hospital, Oslo, Norway.
Abstract
BACKGROUND:
Trigeminal neuralgia (TN) in patients with multiple sclerosis (MS) is thought to be caused by demyelinating plaques within the nerve root entry zone, the trigeminal nucleus, or the trigeminal tracts.
OBJECTIVE:
To review our experience of microvascular decompression (MVD) in patients with MS and symptomatic TN.
METHODS:
All first-time MVDs for symptomatic trigeminal neuralgia in patients with MS performed by the senior author during an 8-year period (1999-2007) in this department were reviewed. The preoperative pain components were differentiated as being 100% episodic pain, > 50% episodic pain, or > 50% constant pain. At follow-up, pain relief was assessed with a standard mail questionnaire; those still having residual pain were further examined in the outpatient clinic or interviewed by phone.
RESULTS:
Of the 19 MS patients, 15 were available for follow-up. The median observation period was 55 months (range, 17-99 months). At follow-up, 7 of 15 patients (47%) were completely free of their episodic pain, and an additional 4 (27%) had significant relief of episodic pain (ie, worst pain marked as 0 to 3 cm on a 10-cm visual analog scale). Among the subgroup of 8 patients with a constant pain component, all were free of their constant pain, and 4 (50%) were free of their episodic pain.
CONCLUSION:
In our 8-year experience of doing MVD in MS patients with TN, we found complete and significant relief of episodic TN in a large proportion of patients. Even those with a constant pain component before MVD were completely relieved of their constant pain. Thus, in patients with TN (with or without a constant pain component), the presence of MS should not prevent patients from being offered MVD.
PMID:
20651626
[PubMed - indexed for MEDLINE]
================================
http://www.ncbi.nlm.nih.gov/pubmed/16574557
Br J Neurosurg. 2005 Dec;19(6):463-8.
Some patients with multiple sclerosis have neurovascular compression causing their trigeminal neuralgia and can be treated effectively with MVD: report of five cases.
Athanasiou TC, Patel NK, Renowden SA, Coakham HB.
Source
Department of Neurosurgery, Institute of Clinical Neurosciences, Frenchay Hospital, Bristol, UK.
Abstract
The role of trigeminal ganglion percutaneous injection and radio-frequency lesioning procedures for the treatment of trigeminal neuralgia (TGN) in multiple sclerosis (MS) is well established. There is general acceptance that microvascular decompression (MVD) cannot be an appropriate treatment due to the view that the underlying aetiology is a demyelinating plaque affecting the root entry zone of the trigeminal pathway. Recently, MR-imaging has been used in the preoperative investigation of this group of patients demonstrating that neurovascular compression can occasionally be the responsible mechanism and that MVD can be the treatment of choice. We present five cases with MS and TGN. All the patients had failed to respond to medical treatment or percutaneous procedures. Magnetic resonance imaging demonstrated evidence of neurovascular compression in four cases. All the patients underwent MVD. Postoperatively four of the five patients made an uncomplicated recovery, were pain-free and fully satisfied with the result (mean follow-up 38.75 months; range 8-59 months). One patient developed recurrent pain 1 week following surgery and went on to have a total sensory rhizotomy. TGN in MS can be caused by neurovascular compression, which may be identified on MR-imaging. MVD has offered satisfactory short-term outcome for at least 2 years and does not inflict sensory loss. Longer follow-up will determine whether the outcome in MS patients will be as successful as in the TGN patients who do not suffer from MS.
PMID:
16574557
[PubMed - indexed for MEDLINE]
Hi Mimi,
Thanks so much for your comment and suggestions. I appreciate it. :)
One neurosurgeon believes I have compression and possible MS plaques. I plan on seeing another neurosurgeon to get a second opinion, though.
Hope you're feeling well today. :)
Warmly,
Vicki
Mimi said:
It is worth ( in my opinion) investigating if there could be a compression secondary to your MS
( in your situation I would get a 3rd opinion from a neuro surgeon)
Red, I was under the impression that MS plaques (demyelination of the nerve from MS) could only be seen by MRI, I didn't think it was visual to the naked eye?
( microscope)
"during MVD exploration"
Thanks, Kc. I haven't checked it out lately. I'll do that. :)
Kc Dancer Kc said:
There is an MS group under the groups tab if that helps
Vicki ((hugs)) so sorry to hear you so down, I know this is not the usual you. Good Luck with your next appointment, let us know how you get on, love you lots xxx
Aww...love you right back, El. Thanks for your kind words. I'm feeling a little more upbeat today. I'm trying to stay busy and be proactive (making doctor appointments, etc.)
Hope you're doing well, friend. xo
~ Vicki
Thats the Vicki I know and love. Not that you dont deserve to stamp your feet and cry, you do, but it may not help.
Go girl, find out as much info as you can to see if there are choices to be made xxx
Ha, ha. You're sweet, El. Usually the tears just last for a day and then I pick myself, brush myself off .....
Thanks for caring. Miss you!
Your friend,
Vicki
elstep said:
Thats the Vicki I know and love. Not that you dont deserve to stamp your feet and cry, you do, but it may not help.
Go girl, find out as much info as you can to see if there are choices to be made xxx