Over the last 2 years, I've had tons of tests completed. Finally now, I don't have any substantial tumors remaining. I also know the cause of my tumour and while it has been hard for my family (finding out you're the cause of this is never nice!) they have taken it very well.
I still have an elevated heart rate and mood swings, this will continue and I have some tremors in my hand. The doctors have suggested to go on some antidepressant drugs to help but instead I focused on physical and mental exercise to deal with all of the above; its working great so far.
Some of the things that occured in the last 2 years included;
- elevated dopamine
- suicidal thoughts
- depression
- fear of mortality
- thoughts of not wanting children because i didn't want to pass this on
These are apparently very common feelings within people who have these tumors and the drugs that are given to deal with dopamine levels. Mixutre of counselling, drugs and a change in lifestyle (excerising more, new friends, healthier diet) helped get through this.
I haven't updated this much and probably won't again but if anyone does want specific information or to have me tell you more detail then please contact me @ dcerreto@hotmail.com
Monday, November 12, 2012
My cause
After much searching and research in to why I had this tumor, I eventually found a geneticist who had worked with these before. They took some blood samples from me, my father and my sister to be sent to a lab to have some genetic testing done.
After 6 months, the results were in and I had an answer.
I had a genetic weakness in the SDHD gene. This has been passed through on my fathers side and therefore all the males on my fathers side of the family had this as well. Most haven't shown symptoms of a mutation; but going back in history it is hard to determine as people were just seen to have strokes and knowledge of these tumours was unknown.
More information on the gene: http://ghr.nlm.nih.gov/gene/SDHD
What does that mean for me now?
Targeted screening and testing. The doctors now MRI certain parts of my body which are known to have these mutations. They also can look for identifiers in my urine collections and behavior. When I have children, I also know what to look for now and that they need to be tested for this.
After 6 months, the results were in and I had an answer.
I had a genetic weakness in the SDHD gene. This has been passed through on my fathers side and therefore all the males on my fathers side of the family had this as well. Most haven't shown symptoms of a mutation; but going back in history it is hard to determine as people were just seen to have strokes and knowledge of these tumours was unknown.
More information on the gene: http://ghr.nlm.nih.gov/gene/SDHD
What does that mean for me now?
Targeted screening and testing. The doctors now MRI certain parts of my body which are known to have these mutations. They also can look for identifiers in my urine collections and behavior. When I have children, I also know what to look for now and that they need to be tested for this.
Thursday, May 6, 2010
Surgery week
Leading upto my surgery I had to slowly increase my medication. This took its toll on my energy levels and my ability to deal emotionally with the upcoming surgery. I was feeling down about the surgery and very scared. Until this point I was able to keep everything positive and in control.
Before I could have the tumour removed, I had to have it embolized. This required me to have general anaesthetic and stay over night about 3 days before the surgery. To do the embolization, the doctor makes an incision in the groin and entered the femeral artery. They then go up to the tumour and start blocking the blood supply. This procedure turned out to be a great help to my tumour removal as I didn't end up losing a lot of blood during the removal surgery. After the embolization I was able to go home for 1 night before my tumour removal. This was great for me as I had some time with my family to relax and prepare for the big operation.
I was admitted to the hospital the night before my surgery. I was nervous and worried. On top of this, the doctors came in and discussed about the various risks and percentages involved. Blood transfusion was very high on the list of things that may happen. The doctors expected that I would lose a lot of blood during the operation and that along with the normal risks of a 8hr anaesthetic made it very risky.
On the morning of the operation I wasn't as worried as I thought I would be, I was in my bed, the doctors were talking to me and my family were all around me. The frightening part was when I had to enter the theatre. I was alone with the doctor who was putting in many drips and monitors. After trying to get a canular in, they decided it was best I go to sleep while they continued to try.
The operation took 6hrs, I didnt need a night in intensive care as the operation went really well. I didn't have a transfusion, it went faster than expected and the doctors were very happy with how the surgery went. I dont remember much of the first night back in the ward, I was very groggy and tired. What I do remember though was that I didn't need any morphine and that there wasn't much pain. My ear was blocked and I couldn't move my head. The following two days I spent lying around. The endochronologist tried stopping my medicine but as soon as I did, my heart rate jumped up to around 130bpm. He saw the same thing with another person with a glomus jugulare so it maybe normal to stay on the medication for a week following the operation.
Before I could have the tumour removed, I had to have it embolized. This required me to have general anaesthetic and stay over night about 3 days before the surgery. To do the embolization, the doctor makes an incision in the groin and entered the femeral artery. They then go up to the tumour and start blocking the blood supply. This procedure turned out to be a great help to my tumour removal as I didn't end up losing a lot of blood during the removal surgery. After the embolization I was able to go home for 1 night before my tumour removal. This was great for me as I had some time with my family to relax and prepare for the big operation.
I was admitted to the hospital the night before my surgery. I was nervous and worried. On top of this, the doctors came in and discussed about the various risks and percentages involved. Blood transfusion was very high on the list of things that may happen. The doctors expected that I would lose a lot of blood during the operation and that along with the normal risks of a 8hr anaesthetic made it very risky.
On the morning of the operation I wasn't as worried as I thought I would be, I was in my bed, the doctors were talking to me and my family were all around me. The frightening part was when I had to enter the theatre. I was alone with the doctor who was putting in many drips and monitors. After trying to get a canular in, they decided it was best I go to sleep while they continued to try.
The operation took 6hrs, I didnt need a night in intensive care as the operation went really well. I didn't have a transfusion, it went faster than expected and the doctors were very happy with how the surgery went. I dont remember much of the first night back in the ward, I was very groggy and tired. What I do remember though was that I didn't need any morphine and that there wasn't much pain. My ear was blocked and I couldn't move my head. The following two days I spent lying around. The endochronologist tried stopping my medicine but as soon as I did, my heart rate jumped up to around 130bpm. He saw the same thing with another person with a glomus jugulare so it maybe normal to stay on the medication for a week following the operation.
Friday, April 30, 2010
The next step
I managed to see my new ENT specialist in early Feburary 2010. I had a quick discussion with him in regards to how this tumour affects me and the possible methods of treatment. Being 25, he mentioned that it would be a good idea for me to chat to a radiotherapist as an alternative to surgery as there are risks of facial paralysis and scarring involved. At this stage, my mind was set on having the tumour removed from my head, but i went along to see the radiotherapist anyway.
Once I had a chat about the pros and cons of radio therapy, I was still leaning towards total removal of the tumour. Radio therapy would stop the tumour growing and possibly reduce the size of the tumour but the risks associated didn't sit well with me. With the decision made, I was asked to do a urine collection to check for increased dopamine / adreniline which can be associated with these tumours. The issue that arises with either of these is that when the tumour is being removed, it can cause it to send too much of either chemical and cause complications with the heart.
Lucky for me this was checked.
It was found that my dopamine levels were higher than they should be and I had to begin some medicine which blocked the body recieving these drugs. First I started the alpha blocker.. this made me feel a tired and like I had the flu. It was called Phenoxybenzamine. The beta blocker medication I had to start prior to surgery was called metoprolol. This made me feel a bit depressed, tired and generally crap - so if you're on these then that's why!
Through out these 2 months I had a MIBG scan, multiple MIR's and CT Scans. This plus the medication starts to add up over time, so it was important to keep an eye on my bank balance.
I didn't feel too worried or scared at this stage, I think I let other people do the worrying whilst I prepared for my surgery. I found that having a strong group of friends and family who will both talk about it and not talk about it to be very important to keeping spirits high. For me, it was easier as I had the unfortunate experience of hearing other people being told that they couldn't be helped. This made me realise that I WAS lucky.
Once I had a chat about the pros and cons of radio therapy, I was still leaning towards total removal of the tumour. Radio therapy would stop the tumour growing and possibly reduce the size of the tumour but the risks associated didn't sit well with me. With the decision made, I was asked to do a urine collection to check for increased dopamine / adreniline which can be associated with these tumours. The issue that arises with either of these is that when the tumour is being removed, it can cause it to send too much of either chemical and cause complications with the heart.
Lucky for me this was checked.
It was found that my dopamine levels were higher than they should be and I had to begin some medicine which blocked the body recieving these drugs. First I started the alpha blocker.. this made me feel a tired and like I had the flu. It was called Phenoxybenzamine. The beta blocker medication I had to start prior to surgery was called metoprolol. This made me feel a bit depressed, tired and generally crap - so if you're on these then that's why!
Through out these 2 months I had a MIBG scan, multiple MIR's and CT Scans. This plus the medication starts to add up over time, so it was important to keep an eye on my bank balance.
I didn't feel too worried or scared at this stage, I think I let other people do the worrying whilst I prepared for my surgery. I found that having a strong group of friends and family who will both talk about it and not talk about it to be very important to keeping spirits high. For me, it was easier as I had the unfortunate experience of hearing other people being told that they couldn't be helped. This made me realise that I WAS lucky.
Thursday, April 29, 2010
Finding out what was wrong
In November 2009, I decided enough was enough and I wanted to work out what was wrong with my ear. I went to see a G.P in regards to my blocked ear which was also causing me to hear my pulse.
The first 3 times I went to the G.P, I was told it was just blocked and to use some drops to help relieve the sensation. Not being satisfied with this, I ask for a referral to a Ear Nose Throat specialist to have a look inside my ear.
On initial inspection, nothing was out of place. The ENT specialist checked for a blockage and noticed nothing other than a small fungal infection on my ear drum. In trying to work out what was causing the pulsing in my ear, the ENT specialist held his camera on the base of my ear canal. The image was amazing, a blue lump moving up and down ever so slightly within the canal. The ENT specialist recommended that I have a CT Scan to try and identify what it was. The specialist mentioned 1 of 2 possible causes, my jugulare vein had eroded the base of the canal or it could be a glomus tumour which is quite rare and usually benign.
After a CT Scan and an MRI, it was confirmed that I had a glomus jugulare tumour. While these usually are benign, they are highly invasive and occur in an area called the jugular foramen.The invasive component effects the mastoid cells within the ear as this is the path of least resistance through the ear - thus coming into the ear canal and causing the pulsing in my ear. The jugular foramen is also where the jugular vein and several important nerves exit the skull.
After finding out that it in fact was a glomus jugulare tumour, my ENT specialist referred me onto another as he didn't have experience in treating these.
Once I returned home, I did what most people these days would do.. I started googling! Sadly I didn't find a lot of information specifically relating to people who have been through this and how they felt. There are some good medical sites which contain information regarding the tumours.
At this stage, I didn't feel affected by this news. I was more interested in finding out about it, the different options to treat it and how to press forward.
It was a few more months before I could see Dr (_X_)
The first 3 times I went to the G.P, I was told it was just blocked and to use some drops to help relieve the sensation. Not being satisfied with this, I ask for a referral to a Ear Nose Throat specialist to have a look inside my ear.
On initial inspection, nothing was out of place. The ENT specialist checked for a blockage and noticed nothing other than a small fungal infection on my ear drum. In trying to work out what was causing the pulsing in my ear, the ENT specialist held his camera on the base of my ear canal. The image was amazing, a blue lump moving up and down ever so slightly within the canal. The ENT specialist recommended that I have a CT Scan to try and identify what it was. The specialist mentioned 1 of 2 possible causes, my jugulare vein had eroded the base of the canal or it could be a glomus tumour which is quite rare and usually benign.
After a CT Scan and an MRI, it was confirmed that I had a glomus jugulare tumour. While these usually are benign, they are highly invasive and occur in an area called the jugular foramen.The invasive component effects the mastoid cells within the ear as this is the path of least resistance through the ear - thus coming into the ear canal and causing the pulsing in my ear. The jugular foramen is also where the jugular vein and several important nerves exit the skull.
After finding out that it in fact was a glomus jugulare tumour, my ENT specialist referred me onto another as he didn't have experience in treating these.
Once I returned home, I did what most people these days would do.. I started googling! Sadly I didn't find a lot of information specifically relating to people who have been through this and how they felt. There are some good medical sites which contain information regarding the tumours.
At this stage, I didn't feel affected by this news. I was more interested in finding out about it, the different options to treat it and how to press forward.
It was a few more months before I could see Dr (_X_)
Why am I doing this?
When I was told I had a glomus jugulare tumour, I scoured the Internet to hear about peoples experience with these rare tumours and found out there really isn't much information out there. I've decided to try and document my thoughts, feelings and the way I got to the recovery bed.
I'll try and add some MRI pictures and other useful information (Doctors, hospitals etc) as I work on this.
I'll try and add some MRI pictures and other useful information (Doctors, hospitals etc) as I work on this.
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