Hi
I am new to this group. I have been undergoing treatment since june 2010. Had my initial surgery for removal of tongue ulcer and hemimandibulectomy.Reconstruction using free fibula and osteocutanous flap. Had recurrence detected during March 2011 in Pteregoid muscles (below eyes). Three cycles of chemo began immediately (each cycle of two days of painful duration!) consisting of cisplatin, docetaxol and 5FU. This was followed by another surgery in June 2011 nodes removed in neck for suspected nodal involvement. Post surgery 3 more cycles of chemo were given and the treatment got over in september. Monthly reviews so far given all clear and towards January 2012 will have a PET scan. During all this while i have had the following problems and the same is persisting:

[list]
[*]Lip closure is not achieved on the right side. hence unable to drink or eat without dribbling. Also speech is impaired due to this.
[*]My speech faculty is severely impaired and despite doctors saying that it will improve over time, it is not satisfactory.
[*]Tongue is stationary and does not move up resulting in eating and speech issues. have been asking doctors to mobilise the tongue.
[*]Since teeth on the right side have been removed, mastication is an issue. coupled with severe trismus for which is am doing exercises

While i have been treated by some of the best doctors and surgeons in my country the focus here has been more on getting rid of the disease leaving Quality of life issues. I have, however, regained my weight and drive alone to work. However not being able to eat and drink socially is very depressing. Also the total lack of clarify of my speech is beginning to effect my livelihood which depends on it.(I am a Business Coach). Was told that for speech therapy and rehabilitation, England is a good place. Am considering rehabilitative treatment abroad if needed.

I am new here and not sure if i have covered everything lucidly. Look forward to some serious advice. Thanks.

Welcome to OCF Chandra. You will find lots of assistance here. After such a big surgery, so many things can be compromised while getting rid of the cancer. It doesnt make things very easy for the patient afterwards but the most important thing is you are still alive. I have had a similar surgery, a mandibulectomy and it took me well over a year to bounce back. My situation was different as I had several complications and setbacks. I know how hard the recovery from this is. It sounds like you are doing very well!

Your surgery was a very involved one which takes a year to recover from. If you are having problems still with healing then you may want to ask about hyperbaric oxygen treatments (HBO). Its where you lay in a glass tube breathing pressurized oxygen for a couple hours a day. I have had 125 of these treatments and found them very helpful. I doubt you would need that many, possibly 40 or so.

As far as speech goes, have you seen a speech pathologist yet? You should be working with someone to help get some clarity in your speech. I am unsure of what other countries offer.

If you have gained some weight then you must be doing something right! With compromised eating, gaining weight is not easy. Maybe I missed it but are you using a feeding tube? I also have trismus and have lost all of my teeth so my eating is difficult. I do eat but not enough of a balanced diet to get rid of my feeding tube. There are some people here who are unable to eat or drink anything at all. Im sure its a major adjustment to make but they are still able to lead a very good life.

Best wishes with everything you are going thru!

Hi there - welcome! Sounds like you've had a tough run of it to say the least - imam sure there are many here who will pop up with great advice. It lists that you had radiation, but you didn't say when... That sometimes affects healing in a big way! so it could very well take much longer - it sounds like the surgery below your eye may have affected the closing of your mouth... Muscles can be stretched but it something that needs to be done daily perhaps through physio therapy. Same with the truismus. Open open open. I stretch my mouth daily , my lips, my neck, my cheeks etc...I use exercises given to me by a physiotherapist. I also go for acupuncture to help loosen up muscles and return blood flow to the area and for 6 mos I had lymphatic massage to promote drainage and help decrease swelling. It really helps. When you get your clear PET - maybe then ask about them releasing your tongue - some drs sew it to the floor of your mouth, I believe here's a reason for it but some here have had the surgery done without it and have better functionality - I lost a third - 40 % of my tongue yet stil have full functionality. It's still somewhat swollen from radiation, particularly in the morning - but for the most part - other than muscle tightness - and swelling a bit - I'm doing much better. Dr.s work to cure you but often quality of life issues are left up to the individual to figure out. Good luck!

Hello Chandra!

Welcome to OCF, glad you found us, sorry you had to! You and I are very similar my dear, as I also have similar issues after my mandiblectomy.

Due to the location and size of my primary tumor, my facial nerve was damaged during the surgery paralyzing the right side of my face causing my lip to droop severely and making it physically impossible to close my mouth entirely, so I experience the same eating/drinking issues that you do. After surgery scar tissue had anchored my tongue to the floor of my mouth making speech extremely difficult as well due to limited range of motion. Like you I was a business professional that relied on my ability to speak, communication skills, and my social etiquettes to make a living.

My question is what is the cause of the right side of the mouth's closure issue? Is it due to how the resection was done or nerve damage (lip droop due to damage to the 7th cranial nerve)? If the lip closure is due to nerve damage then you do have options there surgically (cranial nerve grafts, specifically a C7-C12 switch graft, and a muscle sling are a couple of procedures that come to mind) that have a chance at restoring function.

Personally I've had a C7-C12 graft done to help restore some function. During that procedure my surgeon clipped the scar tissue that anchored my tongue helping to improve speech. Where I still experience the lip droop (which does affect speech and eating still) it has improved my facial function and facial symetry. The eating and drinking publicly is something I've moved passed and make sure I wear darker clothing and always have a store of napkins handy if I choose to do so. I still eat solids however the majority of my nutrition is liquid due to difficulties chewing (like you no lower right teeth) and swallowing after radiation and neck dissection. These are things I continue to work on.

Talking will always be an issue with me due to the after surgery issues. I cannot speak loudly any longer and have to focus on my pronunciation, which I have worked with a speech pathologist on. I am understandable but it is something that I have to constantly focus on and have learned to adapt to.

Anyway, I feel I can relate to you and may be a source of support if you need. I know for me it was great to get in contact with people that could relate to me and share in my struggle. I hope OCF is as good of a resource for you as it has been for me.


Keep your chin up.

Eric

Hi Chandra, given the treatment you had (where in New Delhi), it is too early to expect full recovery. I see that you had a Neck Dissection - was it RND or SOND? RND is likely to have more severe impact like you are having.

My dad had partial glossectomy followed by CCRT in 2009 and it took over 6 months to recover his speech and adapt to modified tongue. With his recurrence and subsequent treatment, he is again working towards regaining his speech now. Trismus (he is just able to open little over 2 cm) is the difficult part and I have been pushing him for jaw exercise.

Give it time, you'll be alright.

Hi Eashwar,
Thanks. I had my surgery in Chennai as Apollo Specialties Hospital and not in New Delhi since I have now shifted to Bangalore. I have had RND though the second surgery post the recurrence was not as complicated as the first one. The Chemo cycles I had pre and post the surgery had pretty good effect. The doctor had asked me to wait for three months post the last chemo cycle to evaluate and start the speech and other rehab process. I feel all the more frustrated since except for the speech and to some extent eating disability i am fit. i am meeting the doctor coming thursday for the evals.
Chandra