Headaches + SCT??

[mariel]

Hi there,

I posted a few days ago...thanks very much for all the replies
As per my last post the NS have found an abnormal suspected tumor on C4 (1.8cm) from MRI. My husband has constant pins and needles down his arms, and is at risk of passing out if he lifts his head upwards. Although this was only told to us on 26/11/2011, he has had the symptoms for twelve months following over stretching at work - his symptoms started immediately after that.

I know in the last post I mentioned that he had just had a LP, which he was bedridden for 7 days afterwards with headaches. However prior to this, just before Christmas, my husband started getting headaches that came and went through the day (relatively mild to moderate) which have continued since then apart from the LP, although are more frequent than ever post LP - they seem to ease on resting.

Our NS said to ring up straight away if my husband developed any new symptoms. Is headache a symptom of progression of tumor?? My husband is one that does not want to make a fuss, and prefers to 'just get on with it' and did not want to contact the NS. Anyway we are seeing the NS on Thursday, which I will mention it, but wondered whether this is a 'new symptom' which could possibly mean growth of tumor etc??

We were told by the NS, that they would not want to biopsy as the risk is high for causing damage - as my husbands symptoms are mild atm. There was no growth between a 3/4 week MRI's, and his brain checked and all clear. So we are in 'no man's land', just watching and waiting.

I just wondered what others opinions were around the headaches, and also things I maybe should ask the NS on Thursday.

Many Thanks

MarieL x

[abprops]

Look up Spinal Cord Leakage on the www. One site you should find is www.nlm.nih.gov/medicineplus/enc/article001068.htm

Spinal cord fluid leakages which could result from a LP can cause headaches which are reduced or cured by bed rest.

Prof Jallo and Dr Kothabuer agreed that the psuedogemingocele compressing my dura against the permanently dmaged nerves in my thoracic spinal cord was causing my symptoms and problems since 2009. The consultant neurosurgeon in Dundee would not agree and the neurosurgeons in the Walton Centre advised against further surgery. Prof. Dr. Manfred Westphal, Clinical Director of Nuerosurgery in The University Hospital Eppindorf Hamburg offered to operate and repair the spinal cord leakage causing my problems. I now have a report by Prof. Dr. Westphal and a set of photographs taken during the operation showing the large hole in my dura.

I did not suffer headaches though immediately after the operation to remove the schwannoma from inside my Dura in 2009 I was repeatedly asked if I had a headache. Only four months following the operation to remove the tumour I found it impossible to walk more than a mile or two without feeling nauseous and having to go to bed and assume the position as when in the MRI scanner. The position in which the neurosurgeons and radiologists in the UK said they could see no evidence of compression of my spinal cord by the psueudogemingocle.

Obviously I have no way of knowing if your husband has a spinal cord fluid leakage but it is as I understand a possibility following a LP.

I suggest you obtain copies of the MRI scans and send them to Prof Jallo in the USA or Dr Kothbauer in Switzerland. Both of those international specialist neurosurgeons were very helpful to me. As panel members for the SCTA they offer to review and advise free of charge in exchange for data on such rare tumours. Prof. Dr Westphal in Hamburg is another possibility and of course Germany is part of the EU or EEC so there are legal advantages.

Sending your MRI scans to those specialists would confirm if you husband has a tumour within his spinal cord or not. I note the comments by others about the wait and see approach which no doubt has merits in many cases but if The Walton Centre informed me that I had a tumour within my spinal cord I would be looking for a second opinion as soon as possible. Better sooner than latter, you do not have to accept any offers for surgery but simply waiting is a very dangerous option as it may be too late in a few months time!

Good luck and best wishes

Morris

[mariel]

Hi there Morris

I really do thank you for giving me all the information that you have on your illness. Also all the information that you have on the Walton Centre.

Our difficulty with taking things any further was that we would in NO situation be able to afford consultation or surgery anywhere else.

My husband is due to have his next MRi next week, his last one was in December. If it shows no growth again, and his symptoms are the same...they will just watch and wait with further MRI. Apparently the only way that they are able to tell exactly what the abnormal growth is, is by biopsy, which they don't want to do because of the risks.

I am worried that by asking for the MRI's we would end up going down a path which would be impossible for us to follow through with, and end up in a lot of stress if we are unable to do what was recommended....potentially!

I would be interested to know your NS name. Ours is Chris Barratt.

I was interested that some of you seem to have had the exact type of tumor diagnosed with MRI. Ours has said it is very likely to be a tumor, but couldn't be sure unless biopsied. Can the exact tumor always be diagnosed with MRI. My husband was told his was diffuse (told to us when explaining surgical removal would be difficult) Our NS also told us that many people with these tumors have them for many years with little growth.

Thanks for all your help

Marie x

[abprops]

Hi Marie

The consultant neurosurgeon who removed the Schwannoma from inside my dura is Mr Eric Ballantyne, Ninwells Hospital Dundee.

The Walton centre registrar neurosurgeon I had one short consultation with is Mr A Hewitt his consultant who I have not met is Mr T. Piggot. Despite having to make a 600 mile round trip and pay for two nights accommodation plus expenses when I visited the Walton Centre for a 30 minute consultation with Mr Hewitt. I then had to make a second trip to see Honorary Consultant, Prof. T. I. Nurrikku a Pain Management Specialist for another short consultation. I find it difficult to understand why the two consultations could not have been arranged on the same day.

The SCTA introduced me to Prof. Jallo MD, of John Hopkins Hospital Baltimore USA. Prof Jallo. Like you I had difficulty persuading the NHS to provide copies of MRI imaging and it took in excess of 12 months to obtain those copies. When my problems and symptoms returned some 4 months after the operation to remove the schwannoma I renewed my efforts and finally received the copies of all imaging including MRI's some 5 months latter. Had I not obtained copies of those MRI images with encouragement from Prof Jalo, I would never have known about the block of fluid or pseudogemingocele compressing both sides of my dura against the damaged nerves in my spinal cord. I forwarded copies of the NHS MRI imaging to Prof. Jallo, who did not agree with Mr Ballantyne that the pseudogemingocele was doing no harm. When I still could not convince the NHS to do anything and Prof Jallo's advice was discounted, I was encouraged to end copies of the MRI imaging to another SCTA panel member Dr Kothbauer in Switzerland and he agreed with Prof. Jallo. Independently of the SCTA, Prof. Dr. Westphal, Clinical Director of Neurosurgery for the University Hospital, Eppindorf, Hamburg, Germany also reviewed the MRI imaging provided by the NHS. Prof. Dr.Jallo also disagreed with the advise from Mr Ballantyne, Mr Hewitt and Mr Pigott of the Walton Centre.

Prof. Dr. Jallo provided details of what he proposed to do to correct the problems which had resulted following the operation to remove the schwannoma from inside my dura in 2009. The International office of the hospital provided estimated costs for the surgery proposed by Prof. Dr. Westphal and dates for admission and discharge.

I had suffered problems for some three years. When I realised that the pains and uncomfortable sensations were phantom pain and sensations caused by the permanently damaged nerves in my spinal cord I decided to ignore the pain warnings and by forcing my muscles to work had rebuilt the wasted muscles down the left side of my body by exercise with advice from a private Chartered Sports Physiotherapist. I discovered that I could rapidly improve my fitness using a stationary bike and gradually increased the daily distance on a bicycle until I was able to cycle over 50 miles per day. I joined a group of experienced cyclists on a week long holiday in the Scottish Borders with the Cycle Touring Club last summer and was able to join in and complete 50 plus mile round trips on 4 out of the possible 6 days. But I was unable to walk for more than 1 to 2 miles before I became nauseous and had lie down in the position when in the MRI scanner to recover. A walk to and around our local supermarket required me to go to bed to recover from nausea. I also had problems sitting in a normal chair for any time, so eating out or theater visits etc were very difficult. I could only be comfortable in a recliner chair or perhaps surprisingly when cycling. But when cycling the natural movement of my 'walking gait' did not pump spinal fluid from within my dura.

Prof. Jallo, Dr Kothbauer and Prof. Dr. Westphal advised that my problems walking were due to the pumping action of my 'walking gait' forcing spinal cord fluid from my dura into the pseudogemingocele or cerebral spinal fluid fistula, through a defect in my dura at the site of surgery to remove the tumour from within my dura in 2009.

Although I was and am very fit through exercise and cycling and had overcome the pain down the left side of my body and had given up taking tramodol and took no painkillers other than paracetamol my overall health was declining. I had suffered and was admitted to hospital on three occasions as a suspect heart attack caused by damage to my digestive system by a prolonged period on strong painkillers, ibuprofen, tramodol and diclofenac. The diclofenac was substituted by paracetamol and I take two omeprazole per day to help with the gastritis and prevent digestive system ulcers. I was also admitted to hospital with two suspect strokes which could not be explained despite a CT scan and MRI scan of my brain.

I could not face a life where I could not walk around the local supper market eat out, go to the theater or sit in a normal chair for any length of time. I could only be comfortable in bed on by bike or lying in a recliner chair. So I accepted Prof. Dr. Westphal's offer. The operation was very successful and Prof. Dr. Westphal's report confirms that my symptoms and problems walking were due to a large hole in my dura at the site of surgery to remove the tumour in 2009 and a cyst filled with spinal fluid pumped into the cyst which was compressing both sides of my dura against the damaged nerves in my spinal cord. Following surgery on 9 Jan 2012, I felt better and many symptoms had disappeared. I was restricted to bed for several days as a lumbar drain was used to maintain the pressure of cerebral spinal fluid below the normal while still supporting my brain and spinal cord to allow the complex wound to heal under lower than normal pressure. I had a few painkillers like paracetamol but no strong painkillers such as artificial opioids such as tramodol. I still use paracetamol as required but I refused to accept the Walton Centre's Pain Management Specialists recommendation that I take neurontine.

I appreciate your concerns about costs but I had found that life was becoming unbearable. Not because of pain or discomfort, I simply could not do anything but ride a bike or lie in a recliner. Had it been impossible to resolve my problems I could have come to terms with being relatively incapacitated but with advice from three international specialist spinal neurosurgeons that the solution was relatively simple I could not accept the NHS refusal to do anything. The consultant neurosurgeon in Dundee and the neurosurgeons in the Walton Centre strongly advised against further surgery but could not or would not explain why! Nor was I prepared to risk the extremely long risk of serious side effects detailed by the manufacturer of neurontine Pizfer. Despite the consultant neurosurgeon in Dundee and the Walton Centre Pain Management specialists claims that neurontine was the answer I had been informed that neurontine is an extremely dirty and discredited drug which is no longer recommended by most health authorities in countries across the world including NICE in the UK.

The HS did not charge me for copies of the MRI imaging. Prof. Gallo MD, Dr Khyber and Prof. Dr. Westphalia reviewed and advised on the MRI imaging without charge. The HS may make a charge for the MR Imaging but it should be a modest charge. I would encourage you to seek advice form the SCTA president.

Take advice now before it is too late. If you or your husband are unhappy with the advice given you can simply reject it. But from my experience the NHS cannot be relied upon. I like most people in the UK believed that the NHS was the best medical health system in the world until 2008 when my problems came to light. The NHS may at one time have lived up to the hype but no longer is. The hospital facilities in the University Hospital Eppindorf, Hamburg were beyond my expectations. The difference between the attitudes and willingness of the German doctors and surgeons to explain what they would do and why again beyond my expectations. Not only did the German doctors and surgeons give very detailed explanations but they put them in writing signed them and under German law I was required to sign to confirm that I understood and accepted their explanations and proposals. The same applied to the nursing staff and all other staff in the hospital. Each station or ward has its dedicated kitchen where meals are freshly prepared and distributed form. The standards of hygiene and cleanliness far exceeds anything I have experienced in the UK. The hospital rooms have two beds with on suite facilities for the two occupants.

The brain manufactures cerebral spinal fluid from blood to maintain the necessary pressure and replace daily losses. So the continual loss of cerebral spinal fluid since 2009 was like a constant leakage of blood within my body. Leakages of spinal cord fluid are said to cause headaches but did not do so in my case but then I have never suffered from headaches. The consultant anesthetist during the operation to remove the tumour in 2009, expressed her surprise that I did not have a headache following the surgery. She explained that pregnant women she had given epidurals when giving birth had severe headaches due to the small amount of spinal cord fluid removed during the epidural. She had anticipated that I would have the mother of all headaches when she realised how much spinal cord fluid would be drained from my dura when my dura was opened up to access and remove the schwannoma tumour. But I had no headache and did not need painkillers after the operation or during the 4 days in hospital. I was encouraged to take tramodol to help with physiotherapy when I left hospital.

I hope this is of some help to you and your husband Marie. If you want to use the private message facilities on this forum I would be pleased to speak to you on the telephone or via e-mails.

Morris