Living with NDPH

Is surgery an option you are considering to treat your NDPH?

Over the past year, there has been an in depth discussion going on here about a controversial surgery done by only one doctor in the world, Dr. Shevel in South Africa.

I have decided to move the discussion here, so that everyone can get the facts and chime in with their opinions. I have only edited out things that were not directly relevant in an effort to make the information easily accessible. You can find the entire discussion on the What is NDPH comment thread, but sifting through everything will take time.

The conversation began with a few readers looking for first hand information.

Maria responded:

My boyfriend has been going to Dr Shevel for the last 3 months for treatment. Unfortunately, we have tried everything and nothing has worked. On Monday he will be going for the operation which will be performed by Dr. Shevel. This is our last resort so fingers crossed that it works.

A week later Maria writes:

Anthony does suffer from NDPH. He went for his operation last week.  When I drove him home Monday afternoon he told me how the constant pressure that he has felt for years in his head was gone. I can also report that for the last week he has not had a headache, at all.

Dr. Shevel never gave us any guarantee that it would work, but as so many people are aware, when you are that desperate you will do anything to become a normal person again, even paying for the operation out of our own pockets due to the fact that our “Medical Aid/Insurance” refused to pay. From my perspective I have never come across a more kind and dedicated doctor.
Anthony had his stitches removed and the cuts seem to be healing nicely. We are keeping our fingers crossed that the pain never comes back.

Cal asked the following questions:

1. Had Anthony ever responded to migraine medication (e.g. triptans or DHE infusion)? These medications are vasoconstrictors, so I think a good response to them helps Dr Shevel in his diagnosis. I have had no response to any treatment.
2. Was Anthony’s NDPH of the ‘standard’ sort: sudden onset, unremitting, bilateral, tenderness over certain parts of the head, bilateral, without migraine features (i.e. auras, photophobia, etc)?
3. Did Dr Shevel diagnose a vascular or muscular component to Anthony’s headache? As I understand it, his surgery involves closing off certain blood vessels in the head/scalp. If the blood vessels are not the problem, he turns to muscles.
4. What tests were done in advance of the surgery and what conclusions were drawn from them?
5. How familiar was Dr Shevel with NDPH? It is, as I’m sure you know, an unusual and rare headache disorder.

Melissa asked:

I am wondering what sort of side effects there might be, and what is the safety factor of closing off blood vessels. It seems to me like you need your blood to keep flowing through all the vessels…

Maria’s response:

1. Anthony has not responded well to any migraine medication for many years. He has tried everything imaginable without success. Dr Shevel did recommend things like Maxalt, Cafergot and Tramecet.
2. Anthony’s headaches/migraines have always been very strange to me. He does not suffer from vomiting, photophobia or any other symptoms that I have when I get a migraine. He explains his headaches as a constant, dull, pressure that is sometimes manageable and lately have been crippling. This has affected his work (been off work 2 – 3 days a week for the last 6 months), he takes a great deal of medication to try and “knock himself out” so that he does not have to deal with anything or anyone, especially the constant pain in his head.

3. Dr Shevel diagnosed both vascular and muscular components. So they ligated the arteries where they cross the capsule of the temporomandibular joints, then they ligated the occipital arteries in the occipital area, the frontal arteries in the temporal area and the posterior auricular arteries behind the pinna of the ear. They then also cauterized one of the muscles on the top of his head that has a trigger point. Further muscles may need to be cauterized but that all depends on how Anthony is feeling in a few weeks.
4. No particular tests were done prior to the surgery, although you have to remember that this was a last resort for us as Anthony tried everything else that the Headache Clinic had to offer. Prior to the operation they do blood tests and a CT Scan.
5. How familiar the doctor is with NDPH I think you would need to ask him.

In response to Melissa’s question – Anthony spent 5 days at home after the operation. He has some muscular pain (which is normal after an op), some discomfort sleeping, as he has two cuts on either side of his head and two at the back. He takes anti inflammatories and that’s about it. Like he says, everything else he can live with for two reasons, firstly the headaches are gone and secondly the current side effects he is dealing with he knows will go away eventually. For a better understanding of what Dr Shevel does I would suggest you go to the Headache Clinic’s web site as this will explain everything.

Maria, six weeks later:

An update on Anthony is that it has been 6 weeks today since he had his operation. I am glad to report that he has not had a single headache for 6 weeks. He is however going back to the Headache Clinic on Thursday this week for a “follow-up” operation where they will cauterized some more muscles, as he still has the muscular pain. Hopefully after that he will be 100%.

Maria at 6 months:

Just to let you all know, it has now been almost 6 months since Anthony had his operation at the Headache Clinic, and still no headaches

A reader asked about the cost of the surgery…

Maria responded:

The surgery is not that expensive, the biggest issue for you would be that the Headache Clinic only do the operation as a last resort, which means there are other things they like to try out before they recommend the surgery. Your best option will be to contact the Clinic directly .

Cal replied with specifics:

For international patients, the consultation and (if advised) surgery at Dr Shevel’s clinic costs around $20,000.  Patients would then have to add the costs of travel to South Africa, hotels, etc.

As I understand it, Dr Shevel only recommends surgery if he diagnoses an arterial component to a patient’s headache. He does so by seeing whether the headache (his main focus is migraine) stops when pressure is placed (using a tight, hat-type device) on various arteries on the outside of the head. This does not sound like a particularly promising diagnostic tool for a headache type like NDPH (which is generally a constant, non-pulsating ache or tightness of varying severity), but there appears to have been success in the above case. Dr Shevel’s other main approach is to fit a specially designed dental splint. I can’t imagine international patients traveling to South Africa for that.  I have not come across anyone with NDPH who has responded to them. So, the key questions are: (a) Does your headache have a strong arterial component? If so, it may have responded to triptans or to other drugs (IV- DHE) that have a vasoconstrictive effect (again, rare for NDPH sufferers). (b) Will Dr Shevel be able to accurately diagnose such through simple compression of arteries on the scalp?(c) Will ligating arteries stop the headache?

Dr Shevel is extraordinarily helpful in advising patients and clearly believes that he has come upon a real solution for some migraine sufferers. NDPH is different from migraine, however. It is continuous rather than episodic and it is often very difficult to tell whether any drug or treatment is making a difference. Further, the issue of vasodilation/vasoconstriction is even more complicated in NDPH than in migraine. Most NDPH sufferers don’t appear to have a headache that is ‘vascular’.

It would be great if Dr Shevel could advise upon, and a doctor in the US/Europe provide, the test he performs to determine if a headache has vascular components. A positive diagnosis made int he US or Europe might encourage some international patients to travel to South Africa for the surgery.

One reader’s opinion:

My biggest problem with Dr. Shevel’s claims is that no one else is commenting on them. He says he has had 85% success in 500 people, but no studies are written up. I sort of want to ignore “common sense” and just fly to S. Africa and give it a chance. Dr. Rozen, not disrespectfully, said, “desperate people will do desperate things”. He suggested there were still quite a few things for me to try before I decide I am that desperate.

This is where the conversation on the thread has ended.

I know that for myself, I would probably not choose this surgery.  I completely understand the desperation and need to feel better, but I don’t feel  there is enough evidence (as far as I can tell) that this is worth the risk of getting on the operating table.

There are some things that need clarity, such as the risks of the surgery. There are risks in every surgery, even those considered simple. Also, are there any possible long term side effects?

The one thing has become absolutely clear to me about NDPH after 6 years of suffering and four years of moderating this blog, as well as from my conversations with several doctors, is that the solution, the pain relief, is different for everyone. Some people will respond to the doxy treatment, some to nerve decompression surgery, for some people it is sinus related and for a few, botox has worked. That does not make any treatment sound very promising for everyone. It makes it simply another treatment to try and hope will work for you.

I would love to hear what you think about this surgery. How far are you wiling to go to find relief? And do you think that the pain would drive you to try something that your current doctor thinks is a bad idea?

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