MVD surgery 8 days ago
Posted , 30 users are following.
I am a 54 year old man living in North London, who was diagnosed with hfs about 5 years ago. I had botox treatment for about 4 years, the first couple of years with satisfactory result, but gradually the injections were becoming less effective. I had my first consultation with Mr K at the NHNN Queens Square, London in Feb 2010 when he explained to me in great details about the chances of success and all the risks involved with MVD surgery. At this stage I was prepared to risk losing hearing on my left ear in exchange for getting rid of the spasms. But Mr K also mentioned the possibilty of developing bell's palsy which I thought was worst than twitching, and that it is a permanent condition. After doing more research and realised that bell's palsy is only temporary, I contacted Mr K again in Oct 2011 to arrange the operation. I was operated on Tue 3rd Jan 2012, discharged on Sun 8 Jan 2012 to continue with my recovery. I thought I was immediately spasm free when I woke up, but in fact it seems to be worst the day after. Mr K's assistant told me that the nerve may take some time to heal and it may be a few weeks before we know if the operation is successful. I was not too bothered as I have read the experiences of the members of the HFS association. I am just grateful for the skill of Mr K leaving me with my full hearing intact and no uncontrolleable discomforts other than dizziness for the 1st 3 days. Today is the 8th day post-surgery and I am off all painkillers already. The staples were removed yesterday and the incision wound feels better. I shall certainly let you know when I am finally spasm free. I will be most happy to answer questions from anybody if it helps.
7 likes, 400 replies
bazzer
Posted
I guess all I can be for now is patient
I am seeing the surgeon (or probably his assistant) on 9th October - have been writing down all my questions -
all the best to you all
Barry
bazzer
Posted
please will you let me have those links re driving - I will print off relevant bits and take with when I have my followup session in October - I got the feeling my chaps weren't that convinced and just saying a blanket 6 months ban was easiest for them?
thanks again
Barry
YKL
Posted
Here are the links, they don't give a clear answer to your specific question but I think the best answer is given by the Royal Free Hospital which says that you should submit a medical report from the neurological dept to dvla stating when you should be able to drive safely again. It seems that the fixed 6-month driving ban mainly applies to patients who had brain tumours removed.
www.royalfree.nhs.uk/pip_admin/docs/brain_biopsy_1045.pdf
www.oxfordradcliffe.nhs.uk/forpatients/090427patientinfoleaflets/090427cranialsurgery.pdf
www.cuh.org.uk/resources/pdf/patient_information_leaflets/PIN1558_DVLA_info.pdf
hope these help or you may find other documents by googling words "dvla brain surgery driving" together.
best wishes
Leon
Emis_Moderator
Posted
I haven't read this whole thread and don't know if it helps but the DVLA Guidelines are available in the main Patient site at patient.info/dvla.
Regards,
Alan
bazzer
Posted
my latest drama : woke on Saturday and the squishy lumps around my scar had all but vanished - great news
BUT
a few hours later my headaches returned with a vengeance - whole head so very sore especially at base of skull
suffered all day and night over weekend
spoke to surgeon this morning and have hopefully ruled our hydrachephalus - hoping it is just thsoe fluids having moved and thus causing the pressure
anyway - he told me to go to A&E if it gets too bad!
what fun all this is!!!
regards
Barry
sean_thornton
Posted
Hope your headache is away now, and you now are sure you are NOT banned from driving, if you were your surgeon would tell you...it's never been heard of with HFS mate...so fill up your tank, and drive your blues away...!!
Sean.
Roseann
Posted
Just to say we're thinking of you and hoping that the headaches were a one-off. What a nightmare for you - nothing worse than having a headache that you don't understand, let alone the pain of it all.
For my latest trick, I have started having the spasms at night - lengthy periods of the face shuddering like mad. It's a good job that I'm drugged up to the nines or it might get me down, alongside all the shoulder pain I'm getting at night.
OK, today's moan over. It's been a fab day down here in Hampshire and I'm still glad to be alive - twitchingly alive!
Very best wishes
Roseann
bazzer
Posted
that's one thing that actually has got better - my night-time twitching - seems to be less of it - not that I am sleeping anyway with the pain involved with my head
which also btw has lessesned over the last 2 days - thank goodness - am at work but taking it slow
best wishes
Barry
YKL
Posted
Good to hear that you feel better, keep improving!
I have used the 'message' function (just below your username) to send you a message 2 days ago. It does not seem to work. Could you please check your message inbox? It is found on the top tool bar of this page classified under 'discussion forum'.
Thank you.
Leon
bazzer
Posted
managed the first 4 days back at work - I am a teacher - took it easy though - no football coaching etc!
Headaches - when will they go????
I took co-drydamol(?) for 10 days after surgery then weaned myself off and after another 5 days I was pretty much headache free - just for 5 hours or so
As said in earlier post the pain came back with a vengeance..........
5 days later the excruciating pain in my head has subsided but I still have a constant headache - been taking co-codamol but stopped last night for the safety reasons......
Does anyone know? - will the headaches go? it is driving me crazy even though the last 2 nights I did manage a little slepp
Thanks
Barry
YKL
Posted
Upon discharge from the hospital, I was prescribe paracetamol and diclofenac sodium 50mg for pain relief. I suffered from dizziness but no headaches so didn't take any of the tablets. According to this website - "There are two forms of diclofenac - diclofenac sodium and diclofenac potassium. The main difference between the two forms is that diclofenac potassium is absorbed into the body more quickly than diclofenac sodium. A quick action is useful where immediate pain relief is required, and a prolonged action is more useful in reducing inflammation. Diclofenac is available on prescription. You can also buy a short course of diclofenac potassium at pharmacies, without a prescription, for pain such as headache, dental pain, period pain, backache and symptoms of cold and flu."
Perhaps you went back to work too quickly, I think most patients make a full recovery after 6-8 weeks, but I guess you are a dedicated teacher keen to return when the new term starts.
All the best
Leon
bazzer
Posted
These are like 20 of my worst hangovers combined
thanks for the info
I have allergy problems with painkillers so am pretty much restricted to codeine I believe which can't do anything for the inflammation
thanks again
Barry
YKL
Posted
Since we discussed how difficult it is to obtain success rates of surgery, I found the following report by a hospital in Belgium on 100 hfs patients. Briefly, 29 patients experienced delayed cure, 3.5 years in one case. Barry, hope you find this helpful and that you continue to recover well.
[Microsurgical vascular decompression for hemifacial spasm. Follow-up over one year, clinical results and prognostic factors. Study of a series of 100 cases].
[Article in French]
Marneffe V, Polo G, Fischer C, Sindou M.
Source
Service de Neurochirurgie, Clinique Saint-Jean, Rue du Marais 104, B-1000 Bruxelles, Belgique.
Abstract
BACKGROUND AND PURPOSE:
The results of a series of 100 patients operated on for hemifacial spasm (HFS), using microsurgical vascular decompression (MVD), are reported.
METHOD:
MVD was performed through a retromastoid keyhole approach, under monitoring of brainstem auditory evoked potentials (BAEP) and facial EMG, and consisted in dissection of VII nerve from conflicting vessel(s), and interposition of Teflon fibers and/or screen(s).
RESULTS:
The offending vessels found were: the antero-inferior cerebellar artery in 57 cases, the postero-inferior cerebellar artery in 56 cases, the vertebrobasilar artery in 22 cases. A multiple conflict was found in 32 cases (32%). The result was considered excellent if there was no residual spasm, good if only "minimal twitching" remained with relief>80%, poor for spasm relief 20 to 80%, and as a failure if relief<20%. the effect of mvd was satisfying (excellent or good) in 75 patients (75%) at discharge (10th day) and in 85 (85%) after 1 to 18 years follow-up (mean: 5 years). amongst the latter patients, 29 (34%) experienced a delayed (up to 3(1/2) years in one) cure. spasm recurrence was noted in 9 cases after satisfying effect on discharge. we encountered following permanent neurological complications: 1 facial palsy, 7 cases of hearing deficit (5 of them complete), and 1 case of ix-x deficit. neither death nor ischaemic complication at brainstem or cerebellum. most of our hearing complications occurred before using intraoperative baep monitoring (3 cases of cophosis among our first 7 patients vs 2 out of our last 93). local complications were: 1 meningitis, 8 cases of csf leakage requiring either a series of lumbar punctures or a lumbar external drain, and 3 cases of wound infection and/or delayed woundhealing requiring surgical treatment.
conclusions:
our data are consistent with those of the literature, especially concerning high rate of long-term success and low complication rate of mvd for hfs. we do not recommend early re-operation in case of initial poor result. again, the necessity of intraoperative baep monitoring to prevent hearing morbidity is highlighted.
best wishes to all!
leon the="" effect="" of="" mvd="" was="" satisfying="" (excellent="" or="" good)="" in="" 75="" patients="" (75%)="" at="" discharge="" (10th="" day)="" and="" in="" 85="" (85%)="" after="" 1="" to="" 18="" years="" follow-up="" (mean:="" 5="" years).="" amongst="" the="" latter="" patients,="" 29="" (34%)="" experienced="" a="" delayed="" (up="" to="" 3(1/2)="" years="" in="" one)="" cure.="" spasm="" recurrence="" was="" noted="" in="" 9="" cases="" after="" satisfying="" effect="" on="" discharge.="" we="" encountered="" following="" permanent="" neurological="" complications:="" 1="" facial="" palsy,="" 7="" cases="" of="" hearing="" deficit="" (5="" of="" them="" complete),="" and="" 1="" case="" of="" ix-x="" deficit.="" neither="" death="" nor="" ischaemic="" complication="" at="" brainstem="" or="" cerebellum.="" most="" of="" our="" hearing="" complications="" occurred="" before="" using="" intraoperative="" baep="" monitoring="" (3="" cases="" of="" cophosis="" among="" our="" first="" 7="" patients="" vs="" 2="" out="" of="" our="" last="" 93).="" local="" complications="" were:="" 1="" meningitis,="" 8="" cases="" of="" csf="" leakage="" requiring="" either="" a="" series="" of="" lumbar="" punctures="" or="" a="" lumbar="" external="" drain,="" and="" 3="" cases="" of="" wound="" infection="" and/or="" delayed="" woundhealing="" requiring="" surgical="" treatment.="" conclusions:="" our="" data="" are="" consistent="" with="" those="" of="" the="" literature,="" especially="" concerning="" high="" rate="" of="" long-term="" success="" and="" low="" complication="" rate="" of="" mvd="" for="" hfs.="" we="" do="" not="" recommend="" early="" re-operation="" in="" case="" of="" initial="" poor="" result.="" again,="" the="" necessity="" of="" intraoperative="" baep="" monitoring="" to="" prevent="" hearing="" morbidity="" is="" highlighted.="" best="" wishes="" to="" all!="">
conclusions:
our data are consistent with those of the literature, especially concerning high rate of long-term success and low complication rate of mvd for hfs. we do not recommend early re-operation in case of initial poor result. again, the necessity of intraoperative baep monitoring to prevent hearing morbidity is highlighted.
best wishes to all!
leon>
YKL
Posted
[Neurosurgical treatment of primary hemifacial spasm with microvascular decompression].
[Article in French]
Sindou M, Keravel Y.
Source
Service de neurochirurgie A, hôpital neurologique Pierre-Wertheimer, groupement hospitalier-Est, 69003 Lyon cedex, France.
Abstract
In nearly all cases, primary hemifacial spasm is related to arterial compression of the facial nerve in the root exit zone at the brainstem. The offending arterial loops originate from the posterior inferior cerebellar, anterior inferior cerebellar, or vertebrobasilar artery. In as many as 40% of the patients, neurovascular conflicts are multiple. The cross-compression at the brainstem is almost always seen on magnetic resonance imaging combined with magnetic resonance angiography. Botulinum toxin can be useful by alleviating the symptoms, but the effects are inconstant and only transient. The definitive conservative treatment is microvascular decompression (MVD), which cures the disease in 85 to 95% of patients. In expert hands, the MVD procedure can be done with relatively low morbidity. Because cure of spasms is frequently delayed - by several months to even a few years -, we do not recommend early reoperation in patients with failure or until at least 1 year of follow-up. Delayed cure could well be explained by the slow reversal of the plastic changes in the facial nucleus that may have caused the symptoms.
Roseann
Posted
Thanks very much for sharing these studies with us all - it is helpful to see the statistics and it makes me feel more positive about surgery (after I've had surgery on the damned frozen shoulder!).
I wonder if it would be worth starting a new thread with this Belgian study being the first entry? There must be loads of people with HFS who would welcome this info, and who might not get to the bottom of this marathon thread. Anyway, just a though...........
How is your recovery progressing? Are you seeing much improvement in the spasms yet? Mine are as bad as I've ever known them, and I put it down to lack of sleep (which is due to the frozen shoulder).
But, as the older generation would have said............... 'mustn't grumble'. All best wishes,
Roseann