Spinal AVM Consultant/Neurosurgeon in the UK

My 24 year old son was diagnosed with a C2/C3 perimedullary AVM in June 2022 when it ruptured. He recovered quite well but has ongoing slight weakness on his left side and gets the odd headache. He is currently under the care of Mr Jash Patel at John Radcliffe who is monitoring the AVM with annual MRIs as surgical intervention is far too risky.

Last weekend while out drinking my son suffered a very sudden onset of excruciating head pain which caused him to collapse and his arms and legs were weak so he was taken to John Radcliffe A&E. A head CT, which was done 12 hours after the episode, showed no bleed which was reassuring but ED staff were unable to answer what caused the sudden onset of pain and I’m yet to receive a response from Mr Patel. The head pain lasted for about an hour,

It would be helpful to know from others with a spinal AVM, particularly in the neck area like my son, if this is a symptom with spinal AVMs and what causes it. Is it pressure caused by the AVM? I also wonder if the head CT had been done while he was experiencing the pain would it have showed anything?

I think he had been overdoing things running up to the episode and had played golf and carrying heavy golf clubs 3 times that week, which would not have helped!

Does anyone find that drinking alcohol triggers bad headaches?

Finally, can anyone recommend a Spinal AVM specialist in the UK please? Mr Patel is undoubtedly an excellent neurosurgeon but his experience with spinal AVMs is limited so I would like to find a spinal AVM specialist if possible.

Thank you in advance!

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Hi.

I’ve moved your call to the spinal category, which should signal to the other spinal guys that you’ve asked a question.

I’d say that for a brain AVM the advice often given in A&E when you have an untreated AVM is to avoid those things that spike your blood pressure: basically you want to avoid a rupture: and i guess the risks are similar with a spinal AVM. I was advised to avoid coffee/caffeine, chocolate, alcohol, anything involving straining (lifting heavy weights) etc. Anything that increases blood pressure runs the risk of triggering a rupture.

A very bad pain in the neck also seems to be one of the symptoms of a brain AVM rupture, so definitely to be aware of and I’d say he did exactly the right thing by going straight to A&E.

I hope some of the UK spinal guys will be able to tell you where they were seen. If you browse through the category that I’ve moved your post to, you may also find some references. Click on the tiny text “Spinal AVM” just after the title of the topic to go to the category.

Best wishes,

Richard

Thanks Richard. I did initially think about putting my post in the spinal AVM section but it didn’t seem as busy on there as the general section but if, as you say, an alert is sent to those on that forum fingers crossed I will get a few responses. Thank you for moving it!

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We’ve got nearly 100 spinal members these days, so an email went out to all of them about 5 minutes ago.

Spinal AVMs seem rarer, hence less conversation, but hopefully for each of the rarer groups having the notification set up means we can help each other well. I’ve added you to the Spinal and Parent/Carer groups :wink:

My AVM was in my thoracic spine so not sure how they present in the neck. My surgery was done by Dr. Michael Lawton at Barrows Brain and Spine in Phoenix. My understanding is that Dr Lawton is one of the world’s experts on brain and spine AVMs. While I realize a trip to Phoenix may not be possible, perhaps your Doctor could do a consult with Dr Lawton. My heart goes out to you and your son, it’s very difficult dealing with a condition very few people know much about!

Your son needs Gamma Knife if they cannot do Surgery and Barrows Neurology in Phoenix is the place to go. I had a Spinal AVM resected C-4 thru C-6 there in 2010. They will fix your son before his AVM has a chance to grow back or they will tell you exactly what to do. It is worth getting on that plane and going or at least see if he would look at his MRI’s
Your son’s Doctor may be afraid of all the nerves that are there in the neck. Barrow specializes in Brain and Spinal AVM’S.

Hello,

I was recently diagnosed (July 2023) with a spinal AVF in my neck (base of skull to C8)…thankfully it had not ruptured but I was slowly going paralyzed. First I underwent a CT scan, then to get more detailed information on whether or not I could be successfully treated I needed a spinal angiogram and MRI of my head and neck. From there it was determined that I would undergo a spinal dural embolization. 14 platinum coils were put in my neck to shut down the AVF which was the largest and quite possibly the first one ever treated at the University Hospital in Edmonton Alberta Canada. Thankful to say it was successful. Four days in hospital (ICU) with full spinal testing every hour as there was extreme risk of becoming a paraplegic. I was put on steroid medication (dexamethasone - 16 mg) right after the surgery and 5 months later I am still weaning myself off the steroid. The head pain was by far the worst. I would have extreme headaches leading up to the surgery but after the surgery the head pain was even worse. From what I understand it was just my body adjusting to the pressure changes etc. 5 months later and it is finally manageable. Neck and back pain is also much better after the surgery and I have regained feeling in my hands and feet again. My right shoulder/arm was very weak following the surgery but is regaining strength. I have heard great things about the Barrow Neurological Institute in Phoenix Arizona - they provide second onions for $100 US. I would have gone there if it was not possible to treat me in Canada. But thank goodness I was able to be treated in my home country. All the best.

Hello,
My name is Ignat Romi, I’m from Romania, I don’t know any doctors in the
UK, but I can recommend you in Germany, at the INI Hanover institute,
Prof. Gerasimo Baltsavias.
He operated on me and I am very well.
If you want, you can write to him

Direktor
Klinik für endovaskuläre Neurochirurgie
E-Mail:
baltsavias.office@ini-hannover.de
Telefon:
+49 (0) 511 / 270 92 – 201
Telefax:
+49 (0) 511 / 270 92 – 102

Good luck!
Ignat

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Hi all. Long time lurker, first time poster. @jpsid1, I’m really sorry to hear about your son. Your post is the first time I’ve been able to relate to a poster, so I wanted to reach out to share my experience.

In March 2022, I (34 y/o at the time) woke up in the middle of the night with a severe headache and neck pain due to what was later diagnosed as an AVM bleed. This may have been the second bleed (first in ~June 2019 but it went undiagnosed). In March 2022, I underwent diagnostic imaging–XRay, CT, CT Angio, MRI, MRA, Angiogram–and confirmed the existence of an AVM at the cervicomedullary junction (~C1). Initial symptoms after the bleed included headaches, severe fatigue, brain fog, nausea, and left sided weakness (to include difficulty walking on my left leg, poor left hand dexterity, left trapezius palsy, numbness/tingling, cold skin sensations, and skin sensitivity on the left side of my head and neck). I started receiving treatment at UCLA (Dr. Jeremiah Johnson + others), and the UCLA team recommended not treating the AVM due to the risk of its location. AVM management includes regular monitoring via annual MRI/MRA and lifestyle changes (e.g., no straining or heavy lifting, monitoring blood pressure, etc). There is a risk of repeat hemorrhage of about 5% per year which, at my age (36), is a bit scary to think about. I’m going to attempt to attach still images from my angio, so hopefully it goes through.


I sought virtual second opinions elsewhere–Barrow (Dr. Michael Lawton), Stanford (Dr. Steven Chang), and UCSF (Dr. Matthew Amans)–and there is a consensus that surgical treatment is not recommended. Dr. Chang at Stanford did suggest Cyberknife radiosurgery, though I’m reluctant to proceed with this option at this time.

In the 19 months since, I started taking Cymbalta to help with neuropathic symptoms and take Tylenol as needed for pain management. Muscle relaxers haven’t been effective and leave me groggy for days. I’ve been doing neurologic physical therapy regularly and have dropped most physical activities. Many of my symptoms have improved, but many have also lingered, and others have come and gone. I’m currently dealing with frequent cluster headaches, depression, neck and shoulder muscle tightness, fatigue, left leg clonus, some muscle tone, poor left hand dexterity, and lower torso muscle spasms.

Regarding your son’s experience last weekend, I haven’t experienced anything like that myself. I don’t drink alcohol and I cut out strenuous physical activity altogether, but I still get cluster headaches frequently and I’d rate them 3/10 at their worst (painful and uncomfortable, but not alarming since they’re consistent).

I’d second the suggestion to get a second opinion from Barrow. It’s very affordable and they provide a comprehensive write-up. Best of luck going forward and please don’t hesitate to reach out.

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Hi jpsid1,

I am Franz 70 years old living in Melbourne, Australia.

My Spinal AVM was diagnosed in September 2015, because I have weak knees on booth legs. Also lost feelings in both legs and have pin and needles on both foot. A laminectomy has been performed at T10 to fix the AVM in Oct 2015. After 3 weeks rehab I was able to walk again. A year later I regained the feelings on both legs, and also noticed the spasm on both legs and the pin & needles. I also have balancing problem. The spsm in both legs was managed with Oral Baclofen. Later in February 2020 the specialist implanted an ITB pump (Intrathecal Baclofen pump) to replace the oral baclofen tablets. Since then my walking is good and I walk using a walking stick for short distances up to 100 metres and long distances/outdoor using a walker. I can walk up to 2Km before I need to sit for a few minutes. I don’t have head aches and I drink alcohol.

The Neurosurgeon who performed my Laminectomy was Associate Professor of Neurosurgery MBBS PhD FRACS Leon Lai. The surgery was performed at Monash Hospital in Clayton, Melbourne.

https://www.drleonlai.com/

Kind regards,

Franz