Surgery for 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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Comments

Surgery for NDPH — 18 Comments

  1. For someone who suffered menstrual migraines in her mid twenties every month off and on for a week each month, I would think even thought the pain was absolutely horrible I would still want more information and hear more than just one person’s outcome. Thank you for sharing though; thankfully for me it was the type of birth control pill I was on (estrogen base) versus now being on on the mini pill (progesterone based).

  2. I am the the speaker on behalf of my husband diagnosed with NDPH 3 years ago. His headache has been with him for almost 5 years continously.
    He has always had sinusitis probllems since he was 16 yrs of age, but it
    was manageable. He is now 67 yrs. When he was 47 he suffered a
    stroke due to angioplasty that went wrong. He now has right field block in
    both eyes (half of each eye is blind). So it makes it difficult for him to read
    or even type due to his disability. Otherwise his body is in good condition, thankfully. As time goes on with his persistant headpain to a level of 8-10
    he is losing the battle for hope. We have gone to many pain clinics, neuro’s,
    skull shots, marujuanna, botox, acupuncture, 3 back surgeries, one neck
    surgery for stenosis. All the medication that have been mentioned on this
    site has been tried and failed. But Mr Headache is still around, sun up to
    sun down. I read this site regularly and pray for each one. Thank you
    for allowing me to be a part of this blog as a spokesperson for my husband.

  3. Hi Amy,

    I love your blog and I’m glad I found it. I have chronic daily severe tension-type headache with a migraine component and have blinding headaches for days on end. I have had them for 15 years, but daily for about the last 6 years. In 2012, I have a headache daily since February with no break, at a level between about 5 and 10 (10 being in bed). Most days, I go to work with my head about 8 or 9, when I am exhausted, cannot think, and want to be in bed.

    I am an engineer, but I am going to a part-time schedule in Jaunary so I can work 3 days a week. This sucks. What I have sounds a lot like the pain of NDPH but that is not my diagnosis. My headaches are very unresponsive too.

    Like your posts indicate, I am also on an emotional roller coaster, hate everyone who complains about stupid things, and feel like this is eroding my marriage, career, and sense of self. I am so sick of running around looking for answers. I think the biggest insult was when I tried to take a sick leave at work this summer and was told I am trying to do too much at work and it is a workload problem. They ignored all my neurology records and assumed I was just too Type A. All I am trying to do is survive at work. Ugh. Every day is a battle and no one gets it. Thank heaven I have a supportive husband (who seems lately to be getting fed up with me).

    Anyway, I am glad I found your blog. Though I may not have your precise diagnosis, I am in terrible daily pain. I also have bad grinding and jaw pain, which adds a layer of brutality to my headaches. About once a week I want to jump off a bridge. Most days, I try to be positive. I am happy I have found your blog and don’t feel so alone.

    I have blogged for years (started as a headache blog and turned into a home/lifestyle blog), but that doesn’t mean that every day I am not living in hell. I am thinking of restarting my headache blog…

    Hello! I have lots of reading to catch up on your story.
    Best wishes, Terri

    • Hi Amy you story sounds so familiar. I wanted to offer you another option that I have been working through with my headache I have had for over a year every single day. I have been having some progress with changing to a holistic natural diet and implementing the use of magnesium citrate 320mg brand name now got it in whole foods 2xs a day and natural Tumeric supplements brand Gaia. I have been researching a lot on ndph. I found case studies in which some subjects had high levels of a protein that is influenced by stress and viruses that causes Inflamation in the spinal cord and also since reading that study did more research on lowering this protein and found a link with another study in which a protein in ginger had helped lower that protein. So I have now been utilizing the magnesium citrate and the Tumeric which both naturally work to reduce inflammation (helps to reduce my pain level a lot) and I just got a high potency ginger oil from brand doTerra that I utilized with DMSO gel (works with Inflammation too but can cause sensitivity if you use too much on same place) and I had a huge breakthrough with my headache today. I spoke to my doctor about the study results in which some people responded well to intravenous magnesium which I will be doing in a few days. I wanted to let everyone know about this option. I know how you feel my marriage has been strained as well with this headache but be weary of the stress factor because stress does contribute to creation of my cytokine production which seems to be the culprit in some sufferer of ndph sufferers. I wanted to share this info with the group because I think it is a factor that is often missed but may offer a reason why some of our headaches have been so medicine resistant. Look into this for yourself see if the magnesium and change in diet helps also avoid product with corn natural or not see if it helps you as well bd share with anyone else see if it works and I will keep you updated on my progress as well . I had to finally stop working and am now on disability for the first time in my life. It is a very humbling situation but I feel we need to work together to find a cause and and answer and not give up hope. Try looking into the case studies as well do not give up fight for a cure and we as a collective can compare and find an answer together.

  4. Amy,
    Has anyone spoken with this girl about the surgery directly? Is she the only one living in the us who has gone to der. shevel? I It seems very interesting…

  5. Hi all, this message is regarding Dr. Shevel so keep reading, I have had New Daily Persistent Headache for 6 months. When I was first diagnosed I was on this sight a lot, but I never wrote because I was afraid to be fully committed to that diagnosis. Well, I am fully committed now, this pain is horrible and has been tormenting my life. Chronic daily facial pain, skull pain, ear pain, occipital nerve pain flares up sometimes when its bad, early on I had jaw pain and teeth pain as well but that went away. What a nightmare. I didn’t even know what my head felt like anymore, it was just a massive monster of pain and pressure weighing me down constantly and drugs did absolutely nothing, I have taken everything you can think of and have been prescribed everything you can think of as well. Nothing helps the pain. I still have this monster in my head. The only thing I can do when I am in high pain is put myself to sleep with something. In the beginning I was admitted to the hospital for a week, the whole million dollar work up of tests like you’ve all had, been admitted to two other hospitals, seen so many specialists. Bottom line, conventional medicine is NOT working. Ive had to put my life on hold. Ive had to defer my education, veterinary medicine. My days are unpredictable, but now it is just a New Normal. I wanted to let you all know that my family and I have decided to fly out to South Africa. My father is a physician and has been speaking to Dr. Shevel since September when I read about him on this site and forwarded it to him. He knew back then that it was where we had to go and that U.S. medicine was not going to be able to help me, but back then I was so scared about that and thought there was more we could try here. I am probably going to have a procedure done, or more than one. He does a diagnostic work up the first week you are there and then goes from there to decide if you are a surgical candidate or if there are other things he can do. I am very nervous, but I have Hope again and that is what is moving me forward. I know there are others out there suffering and that is why I decided to write this now. I wanted to inform you about what happens with me. I leave on February 10th and I am staying there for a month. My dad said that Dr Shevel wants me to be there for full recovery and any other possible procedures that need to be done, plus its silly to fly out and fly back and fly out again. Please let me know if you have any questions.

    • Hi Natalie,
      I wrote your dad and told him I was also going to see Dr. Shevel in February. I have not made my plane reservation yet but am thinking of going around that time too have been in lots of pain for 6 months. Please write me christinesiodla@hotmail.com

    • Hi Natalie,

      Thanks for the interesting post. Best of luck with your trip to Dr Shevel.

      Did Dr Shevel state he thinks you are a candidate for his arterial surgery? As I understand it, he generally believes that anyone who responds well to vasoconstrictive drugs (triptans, DHE) will respond well to this surgery, which consists of tying off certain artieres in the scalp. If not, he considers your headache to be muscular in origin. I cannot discover precisely what he does in that case, other than recommendations around physiotherapy, dental splints, etc. I can not afford to travel to South Africa if that is all he would offer. His papers refer to trigger point injections into muscles; but again, that is nothing that could not be obtained elsewhere.

      Anyway, if you have any further information on how he plans to diagnose and treat you it would be great if you posted. Sorry to hear you are having such a bad time with this infernal headache and well done on working so hard toward a solution.

      Best

      Cal

      • Hi Cal,

        Thanks for the well wishes, and I’m sorry it took me so long to respond. He did state that he believes I am a candidate. He did not necessarily say that everyone who responds to triptans/DHE are the only ones who are surgery candidates, as you have read from Anthony’s story above. He has been speaking to my father on a weekly basis since september about my case & all that I have gone through, and he seems optimistic. But the bottom line is I need to be evaluated for him to determine what exactly I need done. He does other things besides surgery. The first day I am in the clinic I will spend the entire day seeing his whole staff of different doctors. One of the several tests they will do from what I know is the compression test, where they will test all the arteries in your scalp for the sources of pain. Your scalp is full of many arteries. They do this by using an angiogram. I do not know much more about it though. All I know is that he has had success and I haven’t had any success with everything else I have tried. I will keep you informed about what happens, but I won’t know the details until I get out there. Hope you are doing well.
        ~Natalie

  6. Hi Natalie,

    Thanks again for the reply. I guess you will find out exactly what tests Dr Shevel does (and the order he does them) when you are in South Africa. It would indeed be great if you could return to this forum (or to the NDPH forum on MDJuction) to describe your experiences in South Africa. It might help people make some big decisions about travel to South Africa and, if nothing else, give them some hope. Most neurologists are pretty dismissive of his theories, but they sound plausible to me.

    Anyway, I wish you every success. Fingers crossed your headache will soon be a thing of the past.

    Cal

  7. Hi All,
    I went to South Africa to have the surgery, last August 2014, I was diagnosed with NDPH back in Australia after I had had the surgery. For me it has been a nightmare, the pain I have is worse, Dr Shevel damaged nerves in my left temple and I am left with new pain as a result. The complete diagnosis was really a joke and I am over $20,000 poorer. The correspondence I received after the surgery as I desperately tried to find out what was happening was dismissive and devastating considering the hope I had gone to South Africa with and the promises I was given of ” we can cure you” at the clinic.
    The Headache Clinic is a slick business and I was desperate, I now see I should have been more cautious.
    I am happy to chat with anyone who would like to hear more

  8. Hi Natalie

    I live in South Africa and am currently doing major research on Dr Shevel and his surgery as I have been suffering for 27 years and can go on any longer. I am eager to find out about your experience here and the surgery. What happened? Was it successful? How are you now? Can you email me? Simone@lighthousecoaching.co.za I would love to hear of your journey.

    If Natalie is no longer able to respond to this forum could someone put me in touch with her?

    Many thanks and good wishes x

  9. I have had a headache continuously for 1 year and 3 months and I have begun a journey to cure it. My illness I wrote about before but after finding out about ndph I realize that I may also have this condition. I have since been reading researching and poring through as much medical case studies as I can to understand the nature of what is happening and why this condition at least for me has been resistant to medication. In my journey I had eventuly stopped all prescriptions all together and began to find answers in a more natural and holistic perspective. I have been able to lower my pain level by changing to a holistic all natural diet I no longer eat beef products and I have noticed that corn organic or not seems to make it worse. On my own before i knew the name of this illness I found that Inflamation items were the only things that seemed to make a difference in my headache. I also found a way to lower the pain with high doses of magnesium citrate powder I am using 315 mg of an all natural magnesium 2xs a day. And Tumeric. These are natural things that address Inflamation. After finding out a name there was a case study I found that seemed to support the Inflamation link with some ndph sufferer with viruses and high stress triggering the production of cytokines to enter the spinal fluid causing the components with the spinal cord to get inflamed and cause pain. This would explain why medication has not worked or why only high doses of antibiotics worked short term cause they addressed the Inflamation issue. I wanted to share this with the group because I have been reading all of your stories and I have not seen more than one person take this route. I am a strong believer in cause and affect. In the study I found they did some type of treatment with intravenous magnesium left those in the group who had Inflamation headache free. I want to share whatever I find because I think if we all come together we may be able to solve this pain by finding the true cause. In all the research and doctors and stories i have read I have yet to see any doctor or person peruse the case in a way to lower cytokines production to stop the cause of the inflammation. Nor have I seen any person talk a full holistic journey into gdv camera analysis accupunture in conjunction with a diet change to a natural foods. So I am going to try all these out and then let you know how I fair. If any of you have gone this route already please let me know. In my research in lowering the cytokines that were raised by high stress or virus like flu and etc just before the headache started , I found a study with an element found in ginger that seems to have a dramatic effect of lowering cytokines production. I am going to look into that avenue as well with DMSO gel which is a little known secret in the holitic world for Inflamation. It is from a tree bark and it lowers Inflamation by going directly to cells. I am going to look into all of these and see what works and I will come back with more answers and findings. But while I go through all of these I hope to find an answer to this pain. I have heard the word incurable in my life before and have made a liar out of conventional medicine with natural methods that have cured me. And to you all I say do not loose hope if we all put our heads together with the pieces that we all know we may just find a way to beat this stalking pain on our own. Right now I am using all natural methods to keep my pain lower however I have to remain extremely calm. Which is difficult at times because I am also struggling with depression which is normal with ndph and PTSD. Magnesium and Tumeric have been my heros they work way better than the Topomax that made me loose way too much weight and almost turned me into a vegetable. Please continue to share and try new things. And I will keep you all updated on what ended up working.

  10. Hi Everyone,
    I apologise for this post, its rather long but please read it before you consider any type of surgery for NDPH and especially in South Africa at The Headache Clinic. I had a laser procedure on march 18/2011, it was very minor, to remove a small burst vessel under my eye, but without my consent the operator decided to laser a “vein” in the temporal area of my forehead, she pulsed numerous times, it was very painful and about 30 minutes after the procedure I developed a headache that never went away.

    I have since read that a percentage of people develop NDPH after extra cranial surgery, well they can now add laser procedures to that list.

    I have been to numerous doctors and neurologists, diagnosed with transformed Migraine, Tension Headaches, Chronic Migraine, you name it, despite the fact that my symptoms did not really fit those diagnoses. I was placed on Endep, Topamax, Neurontin etc. I am still on Endep and am on a high dose of Neurontin as it seems to dull the pain and I am trying to take NSAIDS as little as possible.

    I have diagnosed myself with NDPH after reading the list of criteria for diagnosis and realised that is me! I only wish I had been diagnosed properly before travelling to South Africa, as armed with the knowledge I have now, I doubt I would have gone.

    I did many internet searches on headaches and found the Headache Clinic and Dr Shevel in South Africa. I had been in touch via email with the clinic and Dr Shevel and they were very positive about being able to help me, I read some of the glowing testimonials and articles Dr Shevel had written and decided that if the headache did not go away after 2 years that I would make plans to go to Johannesburg in August 2013.

    From the start I was very concerned about the cost, and also the difference in charges for overseas patients and local residents. I have noted that costs, which were previously listed, have been removed from The Headache Clinics website, to give you an example the “complete diagnosis” cost me $3500 aud and for locals it’s somewhere around the $500 mark. The surgery cost me $8,500 aud, I can’t remember the charge for locals but it was drastically lower. One needs to ask why the disparity in prices and come to their own conclusions.

    I decided that as the Clinic and Dr Shevel had been so positive about helping me and no one else gave me any hope I would go.

    So off I went to South Africa, from the start I felt a little uncertain, the clinic was a large building and reasonably impressive but the staff in the reception area seemed disorganized.

    The first day I spent at the clinic was my “complete diagnosis”, this is difficult to describe, much of the day was spent sitting in the waiting room, at times no one seemed to know why I was there and at one stage, after waiting for an hour and a half, not sure what was coming next, one of the women behind the desk exclaimed that “ they have obviously forgotten about you”. Remember this day was costing me $3500 aud! During the course of the day, I was asked to line up coloured blocks in various ways under a daylight lamp, I have no idea why. I had some small electrodes placed on my shoulders to measure my muscle tension, some X-rays on my neck and a 10 minute consultation with an elderly and very rude neurologist who asked me some formulaic questions and then informed me to wait in the waiting room.

    When I finally did meet Dr Shevel he seemed charming and intelligent. I asked him what kind of headache I had and he explained he could not give me a word for my headache as “all headaches are caused by the vessels or the muscles” so words are useless in trying to label specific headaches. He told me that my headache was caused by both the vessel(s)on the side of the laser procedure and muscle tension and he recommended surgery as he was quite sure that he could help improve or get rid of my headache completely. He also told me he would not operate on me unless he also “did “ the trigger points in my muscles on the side of my head that bothered me. I had gone to south Africa accepting that If I had surgery a part of my superficial temporal artery would be removed, cauterizing nerve tissue was a completely new concept to me and I was taken back and scared of what was a completely new treatment plan that I had not had time to consider. I told him I needed time to think about whether to proceed and I would let him know in 2 days.

    What struck me is that the clinic had already arranged the anaesthetist for the following day, no one had even seen me but the surgery was already planned, as if regardless of what diagnosis was given, surgery would be performed.This was confirmed later that afternoon when I was ushered into the accounts office and asked to pay for the surgery in full. I explained that I had no intention of paying for surgery that I hadn’t decided I was going to have, unbelievably I was asked to still pay in full and they would refund me if I decided not to proceed. I refused and what ensued was a lot of toing and froing between office girls and conversations behind closed doors, eventually they agreed I could pay when I decided to go ahead and I left, feeling pressured like never before.

    The short of it is I asked for another consultation with Dr Shevel, during this consultation asked him questions about the surgery.

    Could nerves could be damaged during the procedure? The answer was no as it was all very superficial and he was dealing with pin head sized areas, could I be worse off? “ definitely not”, would there be any numbness? “ not at all”, how many procedures had he performed and what was the success rate? I don’t remember the exact answer but the number of surgeries was in the hundreds and the success rate was high, it was impressive. How long until I knew if the procedure had worked? I should notice an improvement within a week of the operation. Armed with all of the information I decided to go ahead with the surgery.

    My headache was worse immediately following the procedure and I had a pressure like sensation around the point of the top incision, they informed me that this would usually be the case for a few days but that it would calm down, and I should notice an improvement, I also noticed I was numb over much of the area of the procedure, I had small holes on my scalp across my temple on the “trigger points”.

    I returned to Australia 2 days after the surgery as I had commitments and I was given the all clear to travel by the Clinic.

    Eight days following the operation my headache was still worse and I noticed the numbness had not improved, nor had the pressure in the temple area, there was also pain in the area of the surgery and my headache which was rarely bilateral was now constantly bilateral. I emailed Dr Shevel with my concerns and his reply was that post-operative tenderness was normal and that as I had very little body fat he may have cauterized some of the small nerves in the skin and that these would recover with time.

    3 weeks later and my headache had worsened, it was now constant, waking me up in the middle of the night and clearly changed by the surgery, I again emailed Dr Shevel outlining my concerns and again I was told these symptoms would lessen with time and that I should “try a course of Botox as this may well be really beneficial and offer me a great deal of relief”. Botox? All of a sudden the surgery wasn’t the cure all it had been made out to be and if there was a non-surgical treatment option for my headache that may have offered me such relief why was surgery the recommended option, I started to feel a sinking feeling in my stomach with the realisation that none of my concerns were actually being addressed.

    It was at this stage I began to realise that not only had the surgery not improved or cured me but that I was much worse off. I also realised that I had no correspondence for Dr Shevel or the clinic after my surgery apart from brief replies to my emails.

    The replies I did receive never discussed why my pain had increased or what could be done about it, I thought I was dealing with headache experts, but now I felt like a nagging patient, desperate for something positive from the surgeon in whom I had placed so much trust. Without the care and advice of Dr Shevel I was on my own.

    Two months after the surgery I was suffering bad pain, my headache had increased in intensity and duration by approximately 50 % and I was in a bad way mentally and physically. Once I could go to bed with strong pain knowing by the morning it would be back down to a 2 or 3/10, I could track my headache and confidently say I had 10 days to 2 weeks of moderate pain and then a few days on bad pain, followed by moderate again. Not any more, I was having constant pain and sleep made little difference. I emailed Dr Shevel, acutely aware that my emails were falling on deaf ears, the reply I received was short, absurd and devastating, it recommended that I look at a website in the USA that sold a biofeedback Headband that helped with teeth clenching???

    It is now over 12 months since the surgery, I can confidently say it was not only a waste of time and a huge amount of money, but that I am injured as a result. The practices of the Headache Clinic are in my opinion seriously flawed and aimed and processing as many people through surgery as possible regardless of their headache history or the type of headache they have. The more who come from overseas and are willing to pay the inflated costs the better.

    I have received absolutely no follow up whatsoever, not a phone call or email to ask how I have been doing or to suggest a treatment option for my current situation. At no time has Dr Shevel discussed with me the negative outcome and I feel truly like I have been a fool. A recent post through the NDPH forum on MD Junction by Danny Shevel, the Manager of the Clinic and Dr Shevel’s son directs people to a side effects link on The Headache Clinic site. It clearly states that only one person has ever had a negative outcome and that this person refused to supply their medical records. This is not me as at no time have I ever been asked to supply anything nor have the clinic ever contacted me regarding my outcome, so clearly the claim is false. So there are now at least 2 people and I would say a lot more who have suffered negative outcomes but I doubt the Clinic will ever disclose this.

    I would not recommend this clinic to anyone, I know it can be so tempting and alluring to think that someone has found a cure for your pain, It was that hope that certainly led me to Johannesburg, that is a decision I will need to live with for a long time

    I still cling to the hope that slowly over time my headache may get back to what it once was, how Ironic that I would wish for the headache that sent me to have the surgery in the first place. I have certainly given up hope of a cure. The reality however is that the nerves that are damaged are still growing back, that it is possible that they will cause more pain than I am in now. I am looking at hypnosis, meditation, different medications, anything that offers hope. I am glad I have found this forum, It makes me feel OK, I hope this post may help someone.

  11. I have had NDPH for 23 years. I can’t afford the coat of the surgery, and am a bit skeptical (though fighting the powerful urge to try it) and afraid of something lacking research. What works for one patient doesn’t necessarily work for all. I will continue to follow up on this story. Also, I should mention that 8 years ago, I had DHE infusion therapy that worked and I was headache free for 2 weeks (the best 2 weeks of my life) but the doctor abandoned my case. So I am hoping to try thus again with follow through from a new neurologist. Not all of them are willing to do it.

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